Day 158
Tuesday October 29, 2013
Physical:
Over the last week or so, DH had spent much more time in bed than in the ast. On Tuesday he only got up around 9:00 PM to use the commode. And even then he was weak enough that getting him back on the bed was harder than usual. He's feeling better than over the weekend, but just doesn't want to bother getting up. During the afternoon he had the TV on, and dozed off and on. He didn't communicate enough to see if he was disoriented or not, but only seemed to be a little "off".
His appetite is lower to the point that he only seems to eat one meal a day, and it's usually not a big one. Occasionally he does better, especially if it's something he likes a lot.
People:
The CNA came very early Tuesday (that meant DH wanted to stay in bed longer, which might be why he never wanted to bother to get up). Late in the afternoon the neighbor girls came over . It's very disturbing ... the storm door was locked and the wood door pushed mostly closed. They jiggled the storm door until they forced it open and just walked right in. I hope I get the signs soon!
Wednesday (today) the nurse came very early, so I'm including this since I'm very late in the morning getting to recording this. She backed up my decision not to give DH the appetite stimulant. She explained that as he gets weaker, his body is gradually shutting down, and he simply needs less fuel. She also agreed with my *guess* that part of what's going on with him is relaated to the kidney failure. I had originally assumed that any toxin build-up would result eventually in another infection. But, it could be that the toxins that don't get drawn out by the dialysis could be going to other parts of his body. That totally makes sense, in that those toxins would also contribute to the causes of the dementia. But it also affects (effects?) his strength, his appetite, etc. Yes, this is all a bit of guess work; but at least I have a professional opinion that it's likely this is what's happening.
The nurse said that even though he is only qualified for hospice with his lung disease (chronic rejection) (and according to the social worker, if the lung disease reaches a plateau - even though we know it could only be temporary - he'll still qualify because of the dementia), the kidney disease is likely to be terminal before the other things are (unless he has another heart attack).
Another thing discussed with the nurse this morning is the clinic visits. She is going to contact the dialysis nurse (as a starting point) about why does DH need to actually go into the clinic. Even though he's not on hospice because of the kidney disease, he is nevertheless on hospice. The doctor *should* only need to see the labs without needing to see him in person. It's like the clinic is ignoring his physical limitations. Unfortunately, my suspicion is that they will insist he has to come in in person - and their "solution" is for him to be transported by EMTs. Of course with no regard as to how expensive that will be.
It's all too much to think about.
Emotions:
The insurance issue has been taken care of, so that's a relief. Last week at clinic when the social worker insisted on discussing what my future plans are (which I thought was awfully tacky to discuss in from of DH, even though I doubt he remembers any of the discussion), I really didn't say much. But a few weeks back the CNA did put an idea in my head. When the day comes that I'm alone .. and hoping we've not been forced out of this house I love before then... I could consider taking in a "housemate" who could exchange assistance with what I would need (cooking, ride to store or doctor, etc) for room and board. Lots to think about there; but with at least an idea, I will quit worrying about it. Or rather, quit worrying about people insisting on asking me.
On the other hand, I got some news that made me feel very sad. I'm trying to just not think about it, as there's nothing I can do. I'm not very good at just accepting things the way they are and letting the rest go. I just feel lonely. No one really understands what it's like to be here 24/7 (all but 2 or 3 hours on Sunday). Nurses and CNAs and others pop in and out, and while they're here I feel briefly brighter. But they leave. The family (kids) that are supposed to be helping out really don't gras what it's like. DSS is starting to get a picture; but he has his shop to deal with (and his girlfriend who constantly nags him about bringing in money). He worries about DH (and me to an extent), but it only keeps him up nights and gives him heartburn. He doesn't do very much to fix the problem (he does try some at least). DS lives too far away, and they have way too much going on.
I have friends who live too far away and have very busy lives. I have other friends who just ignore me.
I spend way too much time feeling sorry for myself. But, I spend way too much time doing nothing at all and feeling frustrated because everything in my world is going dark and shadowy I can't really read what I've written (I occasiionally try to check that I don't have my fingers on the wrong keys again!). Reading email means copy into a word doc to enlarge. I check blogs, but mostly I go through the pictures - which are blurry, but I can sort of tell what they are. Reading a book is out of the question; even the Kindle doesn't get big enough. I will switch to audible books when my DIL can help me set that up.
It's all pretty much irrelevant anyway. Whether I'm here at the computer (less and less) or cleaning or just watching (listening!) TV, or even sleeping .. I have to stop to see what DH needs.
I'm just tired. Right now I feel like nothing much matters.
Wednesday, October 30, 2013
Tuesday, October 29, 2013
Day 157
Day 157
Monday October 28, 2013
Physical:
DH seems to be close to "normal" now. It's too soon to tell if the confusion or weakness is more pronounced than a week ago. Since the initial issue happened before the possible influences on his health (flue shot andor B/P med change), I still don't really know if something triggered the events of Monday a week ago, or if that was simplly a natural progression of the dementia. And just not knowing is a bit scary.
He stayed in bed until late in the day. He hadn't slept real well the night before, said he was tired. And wouldn't eat, although no trouble at all taking pills.
Late in the day he wanted to get u, and then stayed up until close to 9:00 at night. He ate (before getting up) a small plate of fried chicken, mashed otatoes and green beans .. excellent for him! Then later in the evening he ate a pot pie. So after multiple days of little or no food, at least he was finally hungry.
He was not too weak for me to get him up and down, also good. Since everything can change in the blink of an eye, all I can do is try to be vigilent.
People:
It was a bit of an odd day. The CNA called to let me know she'd be later. Then the chaplain called, he'd had a cancellation and wanted to come over for a quick visit. Since DH had not been out of bed for 3 days when the CNA got here, she was very welcome! While she was with DH the chaplain got here, so he and I had a nice visit. He's always very encouraging. He didn't visit with DH today, but did go in to pray for him before he left. He romised to come back next week to tell us about his recent trip to Ireland.
Later, before DH got up, the neighbor came over with a hot plate of food (*normal* food - fried chicken, mashed potatoes, green beans). We don't normally eat our "big" meal in the middle of the day (and I tend to wonder how they do, since her husband works and all but the 2 y/o are in school). But I took some to DH and he ate it. He ate most of what she brought, but we did share some.
Later in the late afternoon the youngest girl came over. Apparently she was bored at home and just wanted to visit. Then her sister joined her. I finally had to just tell them it was time to leave when it was right at the edge of being dark, and I had to get started on dialysis set up.
Oh, I almost forgot, in the morning before all that, the supply truck came.
Emotions:
Tired. Deplressed. Discouraged. And wondering if the sun will ever shine again.
Monday October 28, 2013
Physical:
DH seems to be close to "normal" now. It's too soon to tell if the confusion or weakness is more pronounced than a week ago. Since the initial issue happened before the possible influences on his health (flue shot andor B/P med change), I still don't really know if something triggered the events of Monday a week ago, or if that was simplly a natural progression of the dementia. And just not knowing is a bit scary.
He stayed in bed until late in the day. He hadn't slept real well the night before, said he was tired. And wouldn't eat, although no trouble at all taking pills.
Late in the day he wanted to get u, and then stayed up until close to 9:00 at night. He ate (before getting up) a small plate of fried chicken, mashed otatoes and green beans .. excellent for him! Then later in the evening he ate a pot pie. So after multiple days of little or no food, at least he was finally hungry.
He was not too weak for me to get him up and down, also good. Since everything can change in the blink of an eye, all I can do is try to be vigilent.
People:
It was a bit of an odd day. The CNA called to let me know she'd be later. Then the chaplain called, he'd had a cancellation and wanted to come over for a quick visit. Since DH had not been out of bed for 3 days when the CNA got here, she was very welcome! While she was with DH the chaplain got here, so he and I had a nice visit. He's always very encouraging. He didn't visit with DH today, but did go in to pray for him before he left. He romised to come back next week to tell us about his recent trip to Ireland.
Later, before DH got up, the neighbor came over with a hot plate of food (*normal* food - fried chicken, mashed potatoes, green beans). We don't normally eat our "big" meal in the middle of the day (and I tend to wonder how they do, since her husband works and all but the 2 y/o are in school). But I took some to DH and he ate it. He ate most of what she brought, but we did share some.
Later in the late afternoon the youngest girl came over. Apparently she was bored at home and just wanted to visit. Then her sister joined her. I finally had to just tell them it was time to leave when it was right at the edge of being dark, and I had to get started on dialysis set up.
Oh, I almost forgot, in the morning before all that, the supply truck came.
Emotions:
Tired. Deplressed. Discouraged. And wondering if the sun will ever shine again.
Monday, October 28, 2013
Day 156
Day 156
Sunday October 27, 2013
Physical:
DH continues to sleep soundly until early afternoon; after that he was still very drowsy. It took hours and hours to get him to take his pills ... he would put a few in his mouth, but then just "hold" them and not swallow.
By late in the afternoon he did eat some pudding (but fed by one of the boys). Later he finally ate a ham sandwich; and I fed him more pudding at bedtime - with his pills in it! He still freaked me out a bit, as I've never before seen someone feel the need to *chew* pudding!
He stayed very slumped over all day; I even got some extra pillows to help prop him up some.
In the evening someone from the pharmacy called to check up on him. She said that since he'd been put on a different B/P med, he could react to it by being lethargic. Really??? NOW you tell me???? I am wondering WHY no one thought to mention this sooner?? Like maybe even the doctor???
Of course, I don't think DH's condition over the weekend was just because of a new med; and not even reaction to his flu shot (Wednesday). But they could well have contributed, and I'm furious that no one bothered to tell me to watch for any such reactions!
People:
DSS, his girlfriend, and her boys came over as usual. She and I went on out early to get the shopping done. I had asked DSS to get his dad to take the pills. I was very annoyed to find when we got back that when DH gave him a hard time just taking the first few pills, DSS just quit trying .. turned on the TV for DH and then he went and laid on the sofa to watch TV. I struggled off and on all afternoon to get DH to take those ills!
The 2 youngest boys got into mega-trouble, so they all ended up leaving earlier than planned. I sent the supper stuff home with them, because I knew DH wasn't going to eat enough for me to cook for us.
Emotions:
I have really run the gamut (sp?) lately. Sadness, depression, and annoyance are all mingled together. And my worsening vision into the mix is not helping! There are so many things I need to take care of .. and I can't even read the bills I get by email any more. And I know there's stuff I have to do about insurance, thanks to our government; or at least, I'm told I do. I didn't think all this new health care crapl aplied to seniors on Medicare, but I'm told it does. I think it's just a trap. They know older pleople will have more trouble understanding the new lws, so it's a way to trick us into paying more (with, of course, no regard to our limited income which they don't see fit to raise).
OK, that's getting off on another direction I don't need to go into today!
Sunday October 27, 2013
Physical:
DH continues to sleep soundly until early afternoon; after that he was still very drowsy. It took hours and hours to get him to take his pills ... he would put a few in his mouth, but then just "hold" them and not swallow.
By late in the afternoon he did eat some pudding (but fed by one of the boys). Later he finally ate a ham sandwich; and I fed him more pudding at bedtime - with his pills in it! He still freaked me out a bit, as I've never before seen someone feel the need to *chew* pudding!
He stayed very slumped over all day; I even got some extra pillows to help prop him up some.
In the evening someone from the pharmacy called to check up on him. She said that since he'd been put on a different B/P med, he could react to it by being lethargic. Really??? NOW you tell me???? I am wondering WHY no one thought to mention this sooner?? Like maybe even the doctor???
Of course, I don't think DH's condition over the weekend was just because of a new med; and not even reaction to his flu shot (Wednesday). But they could well have contributed, and I'm furious that no one bothered to tell me to watch for any such reactions!
People:
DSS, his girlfriend, and her boys came over as usual. She and I went on out early to get the shopping done. I had asked DSS to get his dad to take the pills. I was very annoyed to find when we got back that when DH gave him a hard time just taking the first few pills, DSS just quit trying .. turned on the TV for DH and then he went and laid on the sofa to watch TV. I struggled off and on all afternoon to get DH to take those ills!
The 2 youngest boys got into mega-trouble, so they all ended up leaving earlier than planned. I sent the supper stuff home with them, because I knew DH wasn't going to eat enough for me to cook for us.
Emotions:
I have really run the gamut (sp?) lately. Sadness, depression, and annoyance are all mingled together. And my worsening vision into the mix is not helping! There are so many things I need to take care of .. and I can't even read the bills I get by email any more. And I know there's stuff I have to do about insurance, thanks to our government; or at least, I'm told I do. I didn't think all this new health care crapl aplied to seniors on Medicare, but I'm told it does. I think it's just a trap. They know older pleople will have more trouble understanding the new lws, so it's a way to trick us into paying more (with, of course, no regard to our limited income which they don't see fit to raise).
OK, that's getting off on another direction I don't need to go into today!
Sunday, October 27, 2013
Day 155
Day 155 (plus)
Saturday October 26, 2013 (plus Sunday morning)
Physical:
It's hard to tell right now. DH is not doing very well. One thing in pparticular - started showing up this week, but got really bad just in the last few days: he's having trouble swallowing his pills. I can't tell if it's swallowing in general, because he refused to eat anything yesterday. But it's very worrisome. He holds them in his mouth (and I know some must taste really awful) and it can take 5 or 10 minutes before he'll swallow them. He does drink water - that goes down.
Saturday he never got out of bed at all. He just said he felt bad, but couldn't define anything in particular. He didn't feel "warm" (I can't read a thermometer), and says no pain (except when he coughs).
Last night I had a very difficult time with the dialysis. It got started early, but after well over an hour had only drained 2 ml and alarmed. I tried everything I could think of - including getting him turned on his side (which was extremely difficlut because he didn't seem able to turn by himself at all). Nothing worked, and I had to just stop the machine. I got up very early and started over with a new cassette, and everything worked properly. But, even with a light on and the machine beeping, he never woke up. This morning around 9:00 I took him ills due, and it was very hard to even get him to wake up just a little - and then it took a long time to get him to swallow them.
On the "positive" side, he's sleeping peacefully. He's not snoring or gasping (I do keep checking that the oxygen is in place), and not much coughing either. It's always seemed to me that he slees better on his side. Many times he's told me he "was" on his side. But now I'm thinking he wasn't - he might have thought he was; but he c an't seem to turn over. He's in general much weaker. I just don't know if this is a new facet of his dementia, or a general weakening, or just a temporary set back, or some infection going on, or something else related to the ESRD. There are just too many possibilities.
People:
As usual, for a weekend, we pretty much have no contact with anyone on a Saturday. My son did *finally* call on Friday night; and he called again last night to tell DH happy birthday. I don't know if DH even knew who he was talking to.
Emotions:
Yesterday I moved furniture around. Doing something very tiring helps me to not sit around and cry. I reached a stopping point, hope I can finish today. Even though he actually sleplt quietly and soundly, I didn't because of worrying.
Saturday October 26, 2013 (plus Sunday morning)
Physical:
It's hard to tell right now. DH is not doing very well. One thing in pparticular - started showing up this week, but got really bad just in the last few days: he's having trouble swallowing his pills. I can't tell if it's swallowing in general, because he refused to eat anything yesterday. But it's very worrisome. He holds them in his mouth (and I know some must taste really awful) and it can take 5 or 10 minutes before he'll swallow them. He does drink water - that goes down.
Saturday he never got out of bed at all. He just said he felt bad, but couldn't define anything in particular. He didn't feel "warm" (I can't read a thermometer), and says no pain (except when he coughs).
Last night I had a very difficult time with the dialysis. It got started early, but after well over an hour had only drained 2 ml and alarmed. I tried everything I could think of - including getting him turned on his side (which was extremely difficlut because he didn't seem able to turn by himself at all). Nothing worked, and I had to just stop the machine. I got up very early and started over with a new cassette, and everything worked properly. But, even with a light on and the machine beeping, he never woke up. This morning around 9:00 I took him ills due, and it was very hard to even get him to wake up just a little - and then it took a long time to get him to swallow them.
On the "positive" side, he's sleeping peacefully. He's not snoring or gasping (I do keep checking that the oxygen is in place), and not much coughing either. It's always seemed to me that he slees better on his side. Many times he's told me he "was" on his side. But now I'm thinking he wasn't - he might have thought he was; but he c an't seem to turn over. He's in general much weaker. I just don't know if this is a new facet of his dementia, or a general weakening, or just a temporary set back, or some infection going on, or something else related to the ESRD. There are just too many possibilities.
People:
As usual, for a weekend, we pretty much have no contact with anyone on a Saturday. My son did *finally* call on Friday night; and he called again last night to tell DH happy birthday. I don't know if DH even knew who he was talking to.
Emotions:
Yesterday I moved furniture around. Doing something very tiring helps me to not sit around and cry. I reached a stopping point, hope I can finish today. Even though he actually sleplt quietly and soundly, I didn't because of worrying.
Saturday, October 26, 2013
Day 154
Day 154
Friday October 25, 2013
Physical:
DH seems to be mostly back to "normal" ("normal" being the way he was as of last Sunday). He wanted to get u in the morning, and we managed without too much difficulty (other than he couldn't button his shirt and got frustrated).
He dozed off and on in his chair. When the CNA came (another sub, regular had an appointment), we got him back to bed. He didn't get up again, but did sit up in bed and watch TV a lot. He didn't eat much, but some. (I made the mistake of giving him a bag of chips. When I got him settled for the night, I fished most of the chips out of the bed!)
He did not have a good night. He couldn't get to sleep, and when he dozed off he didn't stay asleep. This morning (Saturday) he seems to have settled into sleep, so hopefully he'll get some rest.
eople:
As mentioned, the CNA came. Later in the afternoon the social worker called and wanted to come by. I can't help but wonder if someone mentioned to her I might need someone to talk to; but she didn't say so.
She came around mid afternoon, and I ended up having one of the best afternoons in a long time.She really listened to my concerns, and put my mind at ease where she could. She talked about her family too, and gave me some insight into dealing with things here (mainly the dementia). It's hard to explain, but it just felt more personal. She said we'd make Friday afternoons our visiting time. I think she's really too busy for that, but I also feel like she will try to make time on Friday afternoons a bit more than 3 or 4 weeks apart if she can. She also said they are really working on getting me a volunteer to help with some things. My failing vision is a concern, and they are going to line up someone who can come out occasionally to help with things like threading bobbins, reading instructions on boxes.
Also last night (late) my son finally called. Of course, DH had already gone to bed so it was too late for them to wish him a (late) happy birthday; but he said they'd call today. I was sad to learn that my DinL has to have yet more surgery, this time a hysterectomy ... and there's a chance that will cancel their coming for Thanksgiving. That would be very disapppointing I'm afraid it would end up being all about DSS and his girlfriend and her family (all those bratty kids), and I'd feel very out of place. Oh well, just have to wait and see what happens.
Emotions:
I'm not sure there's even much point in this category. I'm so up and down I confuse my own self. Sometimes I can be doing just fine - and without warning or any decernable (sp?) reason, I'm sobbing uncontrolably. I know it's partly just reacting to everything that's going on; partly exhaustion (the last week or so he slept better; but today will be hard); and partly frustration at how much my vision is limiting what I can get done.
Friday October 25, 2013
Physical:
DH seems to be mostly back to "normal" ("normal" being the way he was as of last Sunday). He wanted to get u in the morning, and we managed without too much difficulty (other than he couldn't button his shirt and got frustrated).
He dozed off and on in his chair. When the CNA came (another sub, regular had an appointment), we got him back to bed. He didn't get up again, but did sit up in bed and watch TV a lot. He didn't eat much, but some. (I made the mistake of giving him a bag of chips. When I got him settled for the night, I fished most of the chips out of the bed!)
He did not have a good night. He couldn't get to sleep, and when he dozed off he didn't stay asleep. This morning (Saturday) he seems to have settled into sleep, so hopefully he'll get some rest.
eople:
As mentioned, the CNA came. Later in the afternoon the social worker called and wanted to come by. I can't help but wonder if someone mentioned to her I might need someone to talk to; but she didn't say so.
She came around mid afternoon, and I ended up having one of the best afternoons in a long time.She really listened to my concerns, and put my mind at ease where she could. She talked about her family too, and gave me some insight into dealing with things here (mainly the dementia). It's hard to explain, but it just felt more personal. She said we'd make Friday afternoons our visiting time. I think she's really too busy for that, but I also feel like she will try to make time on Friday afternoons a bit more than 3 or 4 weeks apart if she can. She also said they are really working on getting me a volunteer to help with some things. My failing vision is a concern, and they are going to line up someone who can come out occasionally to help with things like threading bobbins, reading instructions on boxes.
Also last night (late) my son finally called. Of course, DH had already gone to bed so it was too late for them to wish him a (late) happy birthday; but he said they'd call today. I was sad to learn that my DinL has to have yet more surgery, this time a hysterectomy ... and there's a chance that will cancel their coming for Thanksgiving. That would be very disapppointing I'm afraid it would end up being all about DSS and his girlfriend and her family (all those bratty kids), and I'd feel very out of place. Oh well, just have to wait and see what happens.
Emotions:
I'm not sure there's even much point in this category. I'm so up and down I confuse my own self. Sometimes I can be doing just fine - and without warning or any decernable (sp?) reason, I'm sobbing uncontrolably. I know it's partly just reacting to everything that's going on; partly exhaustion (the last week or so he slept better; but today will be hard); and partly frustration at how much my vision is limiting what I can get done.
Friday, October 25, 2013
Day 153
Day 153
Thursday October 24, 2013
Physi could see no change on a day to day basis. This week there clearly have been changes. But as of this morning (Friday morning), he seems to be about where he was last Sunday. But I'm still convinced *something* happened sometime Monday morning.
Thursday he stayed in bed all day until just lpast time to settle in ... then he suddenly decided he HAD to get up to plee I gave in and got him up, which was almost a mistake I was able to get him up; but in the short span of time there, his mind slipped a cog again He insists on sitting doubled over (which of course ends up meaning I have to clean him,, the "pot", AND the seat - sorry if that's TMI, but it's the way my life is) I kept telling him to sit up and he started saying he couldn't, he was too tired I had to force him uplright enough to get him back on the bed
He did go to sleep, but didn't really rest well and I was up and down several times during the night This morning, after spending most of the week (except going to clinic on Wednesday) in bed, he's suddenly ready to get up - way too early!
People:
The CNA came by much too early Thursday I was barely out of the shower; and she forgot to call first I guess she was hurrying through her day, since she's off today
DSS came by in the evening. He did the heparin for last night's dialysis He also lit the pilot light in the heater where I sleep, and took a few things home with him.
The phone rang a lot of times The nurse called to check on the EPO shot scheduling - so now at least I know she'll be here next Wednesday DSS's girlfriend called, but only to complain about DSS They need to find some way to communicate, because my nerves can't take being in the middle
My girlfriend showed up Wednesday afternoon (after about 3 weeks of total silence) She told me all about her new boyfriend, and her split lip, etc She never one single time asked how DH is doing or how I am, or if I need anything very depressing that she *claims* to be such a good friend, but doesn't really care about me at all. Oh, almost forgot, the neighbor came over Thursday. One of the girls was home from school. She wanted to go back and see DH, but I wouldn't let her. I don't really care if I have a bad attitude or what; I just don't want her bustling into my house and wanting to go into my husband's bedroom. She thinks she knows all there is about "taking care of old people" and aparently thikns I'm too stupid. Anyway, they sat and visited a short time, then prayed, and left. One cute thing though - her 2 year old stood beside me and held my hand while she prayed!
Emotions:
I have way too many days where I just sit and cry all day. I'm determined to keep up this blog as long as I can, but email is getting harder. I had to give up on my newsletter. Of course, I very rarely get email anyway. Out of over 100 people who "subscribe", one lady in TX wrote one line about hoping things get better. (I know a lot of family who read it are away from internet, but that's only a small plercent of readers).
Also the "P" button came off my keyboard, and it's making typing very hard.
I got interrupted, and it's more trouble than it's worth to try to read back and see where I was. I'll end here for today.
Thursday October 24, 2013
Physi could see no change on a day to day basis. This week there clearly have been changes. But as of this morning (Friday morning), he seems to be about where he was last Sunday. But I'm still convinced *something* happened sometime Monday morning.
Thursday he stayed in bed all day until just lpast time to settle in ... then he suddenly decided he HAD to get up to plee I gave in and got him up, which was almost a mistake I was able to get him up; but in the short span of time there, his mind slipped a cog again He insists on sitting doubled over (which of course ends up meaning I have to clean him,, the "pot", AND the seat - sorry if that's TMI, but it's the way my life is) I kept telling him to sit up and he started saying he couldn't, he was too tired I had to force him uplright enough to get him back on the bed
He did go to sleep, but didn't really rest well and I was up and down several times during the night This morning, after spending most of the week (except going to clinic on Wednesday) in bed, he's suddenly ready to get up - way too early!
People:
The CNA came by much too early Thursday I was barely out of the shower; and she forgot to call first I guess she was hurrying through her day, since she's off today
DSS came by in the evening. He did the heparin for last night's dialysis He also lit the pilot light in the heater where I sleep, and took a few things home with him.
The phone rang a lot of times The nurse called to check on the EPO shot scheduling - so now at least I know she'll be here next Wednesday DSS's girlfriend called, but only to complain about DSS They need to find some way to communicate, because my nerves can't take being in the middle
My girlfriend showed up Wednesday afternoon (after about 3 weeks of total silence) She told me all about her new boyfriend, and her split lip, etc She never one single time asked how DH is doing or how I am, or if I need anything very depressing that she *claims* to be such a good friend, but doesn't really care about me at all. Oh, almost forgot, the neighbor came over Thursday. One of the girls was home from school. She wanted to go back and see DH, but I wouldn't let her. I don't really care if I have a bad attitude or what; I just don't want her bustling into my house and wanting to go into my husband's bedroom. She thinks she knows all there is about "taking care of old people" and aparently thikns I'm too stupid. Anyway, they sat and visited a short time, then prayed, and left. One cute thing though - her 2 year old stood beside me and held my hand while she prayed!
Emotions:
I have way too many days where I just sit and cry all day. I'm determined to keep up this blog as long as I can, but email is getting harder. I had to give up on my newsletter. Of course, I very rarely get email anyway. Out of over 100 people who "subscribe", one lady in TX wrote one line about hoping things get better. (I know a lot of family who read it are away from internet, but that's only a small plercent of readers).
Also the "P" button came off my keyboard, and it's making typing very hard.
I got interrupted, and it's more trouble than it's worth to try to read back and see where I was. I'll end here for today.
Thursday, October 24, 2013
Day 152
Day 152
Wednesday October 24, 2013
lLPhysical:
This was a very odd up and down day. First thing in the morning, DH seemed fairly "normal" (or at least what passes for normal now). But at some point, with no apparent triggers, he reverted to jibberish and inability to control movement. He said he wanted me to get him up on the commode; but he was completely unable to do anything on his part. In the end it didn't matter, and I got him mostly dressed by the time DSS got here. It was still a struggle for the 2 of us to get him ready and into the car.
By the time we got to the clinic, DH seemed to sort of come out of it - and could talk - but he sounded slurrish. The staff at the clinic certainly noticed the changes.
The doctor insisted on putting him on an apetite stimulant. (this had been discussed before and rejected. the hospice nurse agrees with me that it's counterlporductive). He also changed both of his B/P meds (which is good in that I don't have to cut that stupid tiny pill any more). I've been fretting about his wonky B/P for months, but it's the first time anyone else seemed concerned. Of course, I can't make the changes until I get someone to help me read the labels on the bottles.
We were at the clinic a fairly long time. The doctor went over his meds (and it seems very odd to me that after going there more than 2 1/2 years, that doctor didn't even know he'd had a lung transplant!) and make changes. The nurse gave him a flu shot, also the weekly EPO shot (because he's back on that, but it will be done at home). We also had to have discussions with the nutritionist (who keeps harping on the protein and appetite but tries to insist I give him "fresh fruit and veg" ... I can't even get him to eat things he does like. So they think an appetite stimulant is the answer. I'm very much afraid that will only make him crave junk. I'm not starting it until I can discuss it with the hospice nurse.
Also the social worker insisted on a conversation about "what are you going to do". Why does everyone keep ressureing me like this? Don't they understand that right now one day at a time is all I can manage? And no one has ever openly discussed the dementia in front of DH before (although he has been told his diagnosis). He didn't really participate in the discussion, which is pretty much how he's always been. I have no idea how much of it he understood; and I found it a bit annoying that she chose to initiate the discussion without first talking to me about his understanding.
Once we finally left the clinic, we went by Wal-Mart and I picked u my new glasses. They are a huge disappointment - not noticeably any better than what I already had. So I guess I'm just doomed to live in a dark and shadowy world where I can't do many of the things I've enjoyed - but of course I'm still expected to do everything for DH whether I can see well or not.
We went by and picked up med refills and the new ones. Then we went back to the other town, I had to see the bank manager. Apparently I misread a bank statement, so had an overdraft. He helped me correct it; also I got the PoA out of the S/D box so he can scan it into the system. Once that's done, if anyone else calls from the bank I can talk to them.
It's very terrifying that it's getting so hard to read the bank info.
After the bank, we made a quick stop at the grocery store, then home.
Getting DH back out of the car was a major ordeal. Even with the 2 of us, he very nearly ended up on the ground. He just isn't able to push with his feet or do anything to help. The only thing he seems able to do is grab hold of something with his hands. Unfortunately, he aparently feels insecure so grabs what he can - which is often counterproductive (i.e. last night trying to take his shirt off, he kept grabbing the inside of the sleeve and wouldn't let go).
When we finally got him inside, it was straight to his bed. I hate the thought of him being restricted to bed (especially so soon after buying the lift chair). But if I am not strong enough to safely move him, that's what it will be.
He didn't sleep but laid there quietly all afternoon. In the evening he did eat one piece of chicken..
He seemed to sleep fairly soundly all night. When I checked on him early in the morning, he had not moved from his original position (which is unusual); but at least he's not trying to get off the bed.
People:
There were many people today because of going to clinic, and DSS with us all day helping.
Emotions:
I'm experiencing a lot of confusion. It almost feels like the kidney center and the hospice people are completely at odds with each other. The kidney center says he's in great shape (even though the dementia is obvious). They say the dialysis is going well, according to his labs (and if effects of kidney disease are affecting his dementia or even other organs, how would they know?) They push to get him to eat more (better). And yet ... he's completely immobile; his only strength seems to be in his hands. He is partly incontinent, and fast becoming completely so. He wasn't even using oxygen (because he wouldn't leave the cannula on), so they don't even see that he's on 3 liters at home.
Other than the cough, and the gradually lowering sats, there's no real indication that his lungs are failing. And I admit - I'm totally terrified the hospice pleople will decide he no longer qualifies, and leave me totally stranded. I've mentioned this to the CNA, and she reassured me; but I'm not getting any reassurance from the nurse. I was told a long time ago that dementia was an acceptable diagnosis .. but there's no way they can say the dementia is "terminal within 6 months". It progresses much slower than that.
Oh gosh, this sounds just terrible, like I just want him to die. NO NO NO NO NO>
I'm just so afraid of him declining slowely, over years, with no help at all, all the expenses, and my failing vision.
I'm only getting myself upset, so time to stop for today. Maybe today will be a better day. I know from what the nurse "F" told me, and from what I've seen, that the mental deterioration will come and go. So all I can do is hope for a good day.
Wednesday October 24, 2013
lLPhysical:
This was a very odd up and down day. First thing in the morning, DH seemed fairly "normal" (or at least what passes for normal now). But at some point, with no apparent triggers, he reverted to jibberish and inability to control movement. He said he wanted me to get him up on the commode; but he was completely unable to do anything on his part. In the end it didn't matter, and I got him mostly dressed by the time DSS got here. It was still a struggle for the 2 of us to get him ready and into the car.
By the time we got to the clinic, DH seemed to sort of come out of it - and could talk - but he sounded slurrish. The staff at the clinic certainly noticed the changes.
The doctor insisted on putting him on an apetite stimulant. (this had been discussed before and rejected. the hospice nurse agrees with me that it's counterlporductive). He also changed both of his B/P meds (which is good in that I don't have to cut that stupid tiny pill any more). I've been fretting about his wonky B/P for months, but it's the first time anyone else seemed concerned. Of course, I can't make the changes until I get someone to help me read the labels on the bottles.
We were at the clinic a fairly long time. The doctor went over his meds (and it seems very odd to me that after going there more than 2 1/2 years, that doctor didn't even know he'd had a lung transplant!) and make changes. The nurse gave him a flu shot, also the weekly EPO shot (because he's back on that, but it will be done at home). We also had to have discussions with the nutritionist (who keeps harping on the protein and appetite but tries to insist I give him "fresh fruit and veg" ... I can't even get him to eat things he does like. So they think an appetite stimulant is the answer. I'm very much afraid that will only make him crave junk. I'm not starting it until I can discuss it with the hospice nurse.
Also the social worker insisted on a conversation about "what are you going to do". Why does everyone keep ressureing me like this? Don't they understand that right now one day at a time is all I can manage? And no one has ever openly discussed the dementia in front of DH before (although he has been told his diagnosis). He didn't really participate in the discussion, which is pretty much how he's always been. I have no idea how much of it he understood; and I found it a bit annoying that she chose to initiate the discussion without first talking to me about his understanding.
Once we finally left the clinic, we went by Wal-Mart and I picked u my new glasses. They are a huge disappointment - not noticeably any better than what I already had. So I guess I'm just doomed to live in a dark and shadowy world where I can't do many of the things I've enjoyed - but of course I'm still expected to do everything for DH whether I can see well or not.
We went by and picked up med refills and the new ones. Then we went back to the other town, I had to see the bank manager. Apparently I misread a bank statement, so had an overdraft. He helped me correct it; also I got the PoA out of the S/D box so he can scan it into the system. Once that's done, if anyone else calls from the bank I can talk to them.
It's very terrifying that it's getting so hard to read the bank info.
After the bank, we made a quick stop at the grocery store, then home.
Getting DH back out of the car was a major ordeal. Even with the 2 of us, he very nearly ended up on the ground. He just isn't able to push with his feet or do anything to help. The only thing he seems able to do is grab hold of something with his hands. Unfortunately, he aparently feels insecure so grabs what he can - which is often counterproductive (i.e. last night trying to take his shirt off, he kept grabbing the inside of the sleeve and wouldn't let go).
When we finally got him inside, it was straight to his bed. I hate the thought of him being restricted to bed (especially so soon after buying the lift chair). But if I am not strong enough to safely move him, that's what it will be.
He didn't sleep but laid there quietly all afternoon. In the evening he did eat one piece of chicken..
He seemed to sleep fairly soundly all night. When I checked on him early in the morning, he had not moved from his original position (which is unusual); but at least he's not trying to get off the bed.
People:
There were many people today because of going to clinic, and DSS with us all day helping.
Emotions:
I'm experiencing a lot of confusion. It almost feels like the kidney center and the hospice people are completely at odds with each other. The kidney center says he's in great shape (even though the dementia is obvious). They say the dialysis is going well, according to his labs (and if effects of kidney disease are affecting his dementia or even other organs, how would they know?) They push to get him to eat more (better). And yet ... he's completely immobile; his only strength seems to be in his hands. He is partly incontinent, and fast becoming completely so. He wasn't even using oxygen (because he wouldn't leave the cannula on), so they don't even see that he's on 3 liters at home.
Other than the cough, and the gradually lowering sats, there's no real indication that his lungs are failing. And I admit - I'm totally terrified the hospice pleople will decide he no longer qualifies, and leave me totally stranded. I've mentioned this to the CNA, and she reassured me; but I'm not getting any reassurance from the nurse. I was told a long time ago that dementia was an acceptable diagnosis .. but there's no way they can say the dementia is "terminal within 6 months". It progresses much slower than that.
Oh gosh, this sounds just terrible, like I just want him to die. NO NO NO NO NO>
I'm just so afraid of him declining slowely, over years, with no help at all, all the expenses, and my failing vision.
I'm only getting myself upset, so time to stop for today. Maybe today will be a better day. I know from what the nurse "F" told me, and from what I've seen, that the mental deterioration will come and go. So all I can do is hope for a good day.
Wednesday, October 23, 2013
Day 151
Day 151
Tuesday October 22, 2013
hysical:
Whatever hapened on Monday, he seemed to "sleepp it off". Even after sleeing al night, he slept very soundly until around noon. I managed to get him to take his 12 hour pills, but that was all. Just before noon, he woke up - and declared he was ready to get up. As in, talking clearly! Well, reasonably so. I told him he had to stay pput until the CNA got there anyway (she was already on the way). When she got there, he was able to talk to her and answer questions (other than saying he was 85 - which is, I suppose, better than 39). She got him washed up, but not out of bed. While she was here, another nurse called to say she was coming out.
He stayed in bed all day; not completely happy about it, but didn't complain or struggle as much as I expected.
He ate a sandwich and piece of cake at lunch time. He had the TV on all afternoon. In the evening I took him some fried chicken (but later discovered one piece on the floor, which expllained why he wanted a sandwich later!)
Into the evening he was clearly getting tired again, and his words getting more slurred. Both grandsons (GA) called to say happy birthday. He was tired by then, and talking a lot of nonsense; but at least it was real words, not jibberish.
People:
The CNA came and got him washed up. Late in the afternoon nurse "F" came. I shouldn't say so - but I like her ever so much more than his regular nurse. She's kinder, less "all business". The other lady is not gruff or anything. But "F" is softer. And she hugs.
We talked for a really long time, and while not reassuring, she at least made things clearer for me.
During the afternoon the neighbor came by again. She was by herself, and brought a cake (she knew it was his birthday, she had made a point of asking when our birthdays are). I couldn't communicate, which is SO frustrating. She did grasp that it wasn't a time to go see him, so she left. I think she meant to come back later (with translators), but never did. I shut the doors early.
DSS and his girlfriend came by later in the afternoon. DSS went and talked to him, but she sat on the sofa and fell asleep.
As mentioned earlier, both of the GA grandsons called late in the evening.
Emotions:
I spent a good part of the day being weepy, just roaming around. No one emails me any more. No one calls. My one *friend* won't even come visit any more. I had to give up on the newsletter for the time being, and out of around 100 people who get it, only one commented. I told the nurse I feel abandoned. I know a lot of my frustration is from all this darkness closing in on me. But knowing why makes it no less hard to deal with. There's really no good answer. There's no one available to "hel" with anything other than DSS.
Today (Wednesday) is clinic, and DSS is driving us. I have to fit in all the errands that can't be done on a Sunday.
Tuesday October 22, 2013
hysical:
Whatever hapened on Monday, he seemed to "sleepp it off". Even after sleeing al night, he slept very soundly until around noon. I managed to get him to take his 12 hour pills, but that was all. Just before noon, he woke up - and declared he was ready to get up. As in, talking clearly! Well, reasonably so. I told him he had to stay pput until the CNA got there anyway (she was already on the way). When she got there, he was able to talk to her and answer questions (other than saying he was 85 - which is, I suppose, better than 39). She got him washed up, but not out of bed. While she was here, another nurse called to say she was coming out.
He stayed in bed all day; not completely happy about it, but didn't complain or struggle as much as I expected.
He ate a sandwich and piece of cake at lunch time. He had the TV on all afternoon. In the evening I took him some fried chicken (but later discovered one piece on the floor, which expllained why he wanted a sandwich later!)
Into the evening he was clearly getting tired again, and his words getting more slurred. Both grandsons (GA) called to say happy birthday. He was tired by then, and talking a lot of nonsense; but at least it was real words, not jibberish.
People:
The CNA came and got him washed up. Late in the afternoon nurse "F" came. I shouldn't say so - but I like her ever so much more than his regular nurse. She's kinder, less "all business". The other lady is not gruff or anything. But "F" is softer. And she hugs.
We talked for a really long time, and while not reassuring, she at least made things clearer for me.
During the afternoon the neighbor came by again. She was by herself, and brought a cake (she knew it was his birthday, she had made a point of asking when our birthdays are). I couldn't communicate, which is SO frustrating. She did grasp that it wasn't a time to go see him, so she left. I think she meant to come back later (with translators), but never did. I shut the doors early.
DSS and his girlfriend came by later in the afternoon. DSS went and talked to him, but she sat on the sofa and fell asleep.
As mentioned earlier, both of the GA grandsons called late in the evening.
Emotions:
I spent a good part of the day being weepy, just roaming around. No one emails me any more. No one calls. My one *friend* won't even come visit any more. I had to give up on the newsletter for the time being, and out of around 100 people who get it, only one commented. I told the nurse I feel abandoned. I know a lot of my frustration is from all this darkness closing in on me. But knowing why makes it no less hard to deal with. There's really no good answer. There's no one available to "hel" with anything other than DSS.
Today (Wednesday) is clinic, and DSS is driving us. I have to fit in all the errands that can't be done on a Sunday.
Monday, October 21, 2013
Day 150
Day 150
Monday October 21, 2013
I'm skipping over the weekend because there was nothing in particular out of the ordinary going on. Saturday was quiet; Sunday DSS and crew were here.
Last night we both seemed to sleep well. He had some of his usual coughing and wheezing, but not enough to wake him up or get me up during the night. Around 6:20, just after I got up, I heard the bed rattle a bit so went to check on him.
He was, as he frequently is at some point in the morning, slid way down with his feet hanging out of the space between the rail and footboard. I walked over to the bed - and realized the floor was wet. I tried to ask him why ... and all he could say to me was complete jibberish. At that point were the first stirrings of panic. I started checking .. and discovered his dialysis catheter had been CUT!! Now I'm into full blown panic. HOW did he manage that??? There is a pair of scissors on a table ... but I seriously thought it was out of reach. And totally weird to have gotten hold of them, cut the tube, and put them back on that same table. My guess is that somewhere deep inside his mind he knew the tube was keeping him from getting up so he eliminated it and knew he'd get "in trouble" so put the scissors back. I don't really know. But the dialysate fluid was just pouring from the machine and from him. I cut the clamp off the tube and wedged it onto the catheter as best I could. The firs thing after that was to get him out of that sopping wet bed.
I alled the kidney center first, but it was too early and they said call 911. I called hospice and notified them, and I called 911. While I waited, I got him as best I could into dry clothes. He was so wet, even that was hard to do.
When the EMTs got here, they did a good evaluation. At that time he was able to talk (although when asked his age he said 39). All vitals checked out fine, and he was able to do the things requestd to check for stroke. They gave me the number for a country medical transport if I had to get him to the kidney center.
By then it was after 8:00, so I called the kidney center again. The lady this time told me to call EMS back and have them transport him to the hospital. That really upset me - the idea of hospice was to keep him comfortable at home. But this was not a hospice isse.
But, a few minutes later the (new) dialysis nurse called me back (the switchboard lady had notified him of my call). He said he can come out here and put a new clamp on the catheter, and also give him a dose of antibiotics.
So right now I'm waiting for him to call back to let me know he's on the way. He had to get to the clinic, work out a break in his schedule, and get the necessary supplies. Meantime I got a sterile gauze pad soaked in the cleaning solution over the end of the tube, including the clamp, and then clamped that down with hemostats.
After the EMTs left, in between making and waiting for phone calls, I got a shirt on him and took him to the recliner. I asked him something .. and he was babbling jibberish again. Only, he seemed to know it now. He was trying to answer me and couldn't make the words make sense.
Something is clearly very wrong. I don't know what, and the EMTs found absolutely no sign of anything. They did say he could have had a "TIA", which wouldn't show up. In his case, any little thing will make the dementia worse.
He is sleeping (fairly peacefully) in his chair. I have laundry going, and trying to do as many of my normal morning things as possible.
And I'm trying very hard not calm down, but I don't think I'm succeeding very well.
Oh, and I forgot to say .. right in the middle of the EMTs here (ambulance in the driveway with blinking lights) .. the neighbor rang the doorbell!!! I really hate that doorbell now. The lady and one of the girls (to translate) wanted to know if he was "fine" (apparently that's the only word she knows). I know they meant well; but at the time, the last thing I needed was someone else wanting to come in and interfere. I sent them away, said come back later. If it had been a close friend, or family member ... or maybe even someone who spoke English .. I might have appreciated them coming by just then. It'svery unChristian of me, but I can't help it ... I just do NOT want her barging into my house and trying to insist on helping when we can't even communicate.
Follow up (2:30 PM)
I'm feeling just a bit abandoned now, at least by hospice.
The dialysis nurse came out, repaired the catheter and gave him a doxe of antibiotic. DH slept soundly through the entire procedure. After the nurse left, he remained in the recliner awhile. I got his his (late) morning pills, but had to actually put them in his mouth a few at a time. He was able to hold his drink and swallow the pills. He still can't make correct words, other than yes or no.
After awhile he got agitated. He couldn't tell me what he wanted, but I finally figured out he wanted to get back in bed. That was an ordeal .. he does not seem able to help me lift him (he usually puts his arms around my neck and holds on; today he had a hard time getting his right arm up, and couldn't really "hold on". I did finally get him on the bed - not sure he'll get off again except when DSS can help! (I had dried the bed and got clean sheets on it).
I waited for the CNA to come, about 1:00. I explained it all to her. She's actually completely LPN training, just waiting to take boardds - so I knew she could give a good judgement call.
She saw what I was concerned about: the speech and the right arm weakness. The odd thing is, he actually can respond to the "stroke questions". She got him all cleaned up. Then she called the nurse (that I had still not heard from) ... and was told the nurse would be out here Wednesday. Hmmm ... totally no sense of urgency or concern there. But Wednesday is his once-a-month clinic appointment. I will call later and leave her a message that we'll be leaving the house by 11:00 (she actually usually comes earlier than that; but I will need extra time, plus help from DSS, to get DH ready to go)
The CNA told me that since there is no apparent sign of infection; and if he had a stroke or a TIA there's no indication (and nothing can be done anyway) ... it very well could be that this is just a natural progression of the dementia.
My concern is, usually there's something to trigger a suddenn drastic change.
A short while ago the dialysis nurse called to follow up and see how he's doing. I updated him, and he is going to try to get up with the nurse (something the previous PD nurse didn't seem overly interested in helping with) about home EPO shots (oh, that's why he called, DH's hemoglobin is low again, so the shots need to resume). He (the nurse) did point out that is it possible that the current issues are either directly (delayed) or indirectly related to the fall last week. I don't understand why this would show up so drastically 3 days later - but I do understand how in a dementia patient a bump on the head could be a catalyst to his condition declining.
He's sleeping, but not all that peacefully. He keeps moaning off and on. He says he's not in any pain, but something just isn't right. I guess all I can do is wait. Our regular CNA will be here tomorrow. If his general condition hasn't improved by then, I'll be wanting to hear her take on it.
Monday October 21, 2013
I'm skipping over the weekend because there was nothing in particular out of the ordinary going on. Saturday was quiet; Sunday DSS and crew were here.
Last night we both seemed to sleep well. He had some of his usual coughing and wheezing, but not enough to wake him up or get me up during the night. Around 6:20, just after I got up, I heard the bed rattle a bit so went to check on him.
He was, as he frequently is at some point in the morning, slid way down with his feet hanging out of the space between the rail and footboard. I walked over to the bed - and realized the floor was wet. I tried to ask him why ... and all he could say to me was complete jibberish. At that point were the first stirrings of panic. I started checking .. and discovered his dialysis catheter had been CUT!! Now I'm into full blown panic. HOW did he manage that??? There is a pair of scissors on a table ... but I seriously thought it was out of reach. And totally weird to have gotten hold of them, cut the tube, and put them back on that same table. My guess is that somewhere deep inside his mind he knew the tube was keeping him from getting up so he eliminated it and knew he'd get "in trouble" so put the scissors back. I don't really know. But the dialysate fluid was just pouring from the machine and from him. I cut the clamp off the tube and wedged it onto the catheter as best I could. The firs thing after that was to get him out of that sopping wet bed.
I alled the kidney center first, but it was too early and they said call 911. I called hospice and notified them, and I called 911. While I waited, I got him as best I could into dry clothes. He was so wet, even that was hard to do.
When the EMTs got here, they did a good evaluation. At that time he was able to talk (although when asked his age he said 39). All vitals checked out fine, and he was able to do the things requestd to check for stroke. They gave me the number for a country medical transport if I had to get him to the kidney center.
By then it was after 8:00, so I called the kidney center again. The lady this time told me to call EMS back and have them transport him to the hospital. That really upset me - the idea of hospice was to keep him comfortable at home. But this was not a hospice isse.
But, a few minutes later the (new) dialysis nurse called me back (the switchboard lady had notified him of my call). He said he can come out here and put a new clamp on the catheter, and also give him a dose of antibiotics.
So right now I'm waiting for him to call back to let me know he's on the way. He had to get to the clinic, work out a break in his schedule, and get the necessary supplies. Meantime I got a sterile gauze pad soaked in the cleaning solution over the end of the tube, including the clamp, and then clamped that down with hemostats.
After the EMTs left, in between making and waiting for phone calls, I got a shirt on him and took him to the recliner. I asked him something .. and he was babbling jibberish again. Only, he seemed to know it now. He was trying to answer me and couldn't make the words make sense.
Something is clearly very wrong. I don't know what, and the EMTs found absolutely no sign of anything. They did say he could have had a "TIA", which wouldn't show up. In his case, any little thing will make the dementia worse.
He is sleeping (fairly peacefully) in his chair. I have laundry going, and trying to do as many of my normal morning things as possible.
And I'm trying very hard not calm down, but I don't think I'm succeeding very well.
Oh, and I forgot to say .. right in the middle of the EMTs here (ambulance in the driveway with blinking lights) .. the neighbor rang the doorbell!!! I really hate that doorbell now. The lady and one of the girls (to translate) wanted to know if he was "fine" (apparently that's the only word she knows). I know they meant well; but at the time, the last thing I needed was someone else wanting to come in and interfere. I sent them away, said come back later. If it had been a close friend, or family member ... or maybe even someone who spoke English .. I might have appreciated them coming by just then. It'svery unChristian of me, but I can't help it ... I just do NOT want her barging into my house and trying to insist on helping when we can't even communicate.
Follow up (2:30 PM)
I'm feeling just a bit abandoned now, at least by hospice.
The dialysis nurse came out, repaired the catheter and gave him a doxe of antibiotic. DH slept soundly through the entire procedure. After the nurse left, he remained in the recliner awhile. I got his his (late) morning pills, but had to actually put them in his mouth a few at a time. He was able to hold his drink and swallow the pills. He still can't make correct words, other than yes or no.
After awhile he got agitated. He couldn't tell me what he wanted, but I finally figured out he wanted to get back in bed. That was an ordeal .. he does not seem able to help me lift him (he usually puts his arms around my neck and holds on; today he had a hard time getting his right arm up, and couldn't really "hold on". I did finally get him on the bed - not sure he'll get off again except when DSS can help! (I had dried the bed and got clean sheets on it).
I waited for the CNA to come, about 1:00. I explained it all to her. She's actually completely LPN training, just waiting to take boardds - so I knew she could give a good judgement call.
She saw what I was concerned about: the speech and the right arm weakness. The odd thing is, he actually can respond to the "stroke questions". She got him all cleaned up. Then she called the nurse (that I had still not heard from) ... and was told the nurse would be out here Wednesday. Hmmm ... totally no sense of urgency or concern there. But Wednesday is his once-a-month clinic appointment. I will call later and leave her a message that we'll be leaving the house by 11:00 (she actually usually comes earlier than that; but I will need extra time, plus help from DSS, to get DH ready to go)
The CNA told me that since there is no apparent sign of infection; and if he had a stroke or a TIA there's no indication (and nothing can be done anyway) ... it very well could be that this is just a natural progression of the dementia.
My concern is, usually there's something to trigger a suddenn drastic change.
A short while ago the dialysis nurse called to follow up and see how he's doing. I updated him, and he is going to try to get up with the nurse (something the previous PD nurse didn't seem overly interested in helping with) about home EPO shots (oh, that's why he called, DH's hemoglobin is low again, so the shots need to resume). He (the nurse) did point out that is it possible that the current issues are either directly (delayed) or indirectly related to the fall last week. I don't understand why this would show up so drastically 3 days later - but I do understand how in a dementia patient a bump on the head could be a catalyst to his condition declining.
He's sleeping, but not all that peacefully. He keeps moaning off and on. He says he's not in any pain, but something just isn't right. I guess all I can do is wait. Our regular CNA will be here tomorrow. If his general condition hasn't improved by then, I'll be wanting to hear her take on it.
Saturday, October 19, 2013
Day 147
Day 147
Friday October 18, 2013
Physical:
No significant changes noted.Mental status remains about the same: confusion about location, and total refusal to realize physical limitations. He's not able to eat without spilling a lot; he frequently drops pills even when placed directil into his hand. He can't put bottle caps back on, so water often gets knocked over and spilled (have resorted to only sippy cups for in bedroom).
Last night (Friday) he dropped the sleeping pill .. I didn't know it until much later (when I took in the last pills, he mumbled he was sorry he dropped the other one. I never could find it, so not 100% sure if he took it or dropped it). In any case, it was not a good night, with a lot of coughing, wheezing, moaning, gasping, etc.
People:
The dialysis nurse came mid morning. They've changed personel again, but we think we like this one better. It's an older guy and he's very kind and thoughtful. He acts more like he actually likes his patients. He not only drew labs and collected the drainage from the night before (always before had to take those heavy bags in) .. he also helped get the concentrator sorted out (definately not his job, but he figured it out anyway). The regular CNA came, and I was glad to see her. She will take a few minutes to sit and talk to me. She also said she thought a nurse would come by and check up on DH after his fall - but no one ever did, or even called. I can only assume they decided he was not badly injured and a follow up wasn't needed.
DSS did come by, but not until fairly late in the evening. I had already gone on and gotten dialysis set up; but he did the heparin (had that ready) and I can use those bags later. It was also too late for him to haul off the old file cabinet again.
Emotions:
I need to be careful what I say here. My back/shoulder is hurting, and I don't want to confuse discomfort with depression.
Also, a lot of my emotions have less to do with DH than with my personal world, which is shrinking. And it scares me. Everything is blurred and shadowy and getting worse. The new glasses might help (I desperately hope so) with reading, and with things a few feet away, such as TV. But not so that I can just put them on and "see" again.
I turn on the computer, open email, and scan ... and there's nothing there but "junk mail". I sit here most of the day with just DH ... and if he's awake, he usually has no clue what I'm talking about.
It's not helping that today makes 2 full weeks of cloudy days, with or without rain. Tody is with. Forecast said "dearly morning showers with possible sprinkles laterin the day" It's close to mid-morning now, and pouring.
Friday October 18, 2013
Physical:
No significant changes noted.Mental status remains about the same: confusion about location, and total refusal to realize physical limitations. He's not able to eat without spilling a lot; he frequently drops pills even when placed directil into his hand. He can't put bottle caps back on, so water often gets knocked over and spilled (have resorted to only sippy cups for in bedroom).
Last night (Friday) he dropped the sleeping pill .. I didn't know it until much later (when I took in the last pills, he mumbled he was sorry he dropped the other one. I never could find it, so not 100% sure if he took it or dropped it). In any case, it was not a good night, with a lot of coughing, wheezing, moaning, gasping, etc.
People:
The dialysis nurse came mid morning. They've changed personel again, but we think we like this one better. It's an older guy and he's very kind and thoughtful. He acts more like he actually likes his patients. He not only drew labs and collected the drainage from the night before (always before had to take those heavy bags in) .. he also helped get the concentrator sorted out (definately not his job, but he figured it out anyway). The regular CNA came, and I was glad to see her. She will take a few minutes to sit and talk to me. She also said she thought a nurse would come by and check up on DH after his fall - but no one ever did, or even called. I can only assume they decided he was not badly injured and a follow up wasn't needed.
DSS did come by, but not until fairly late in the evening. I had already gone on and gotten dialysis set up; but he did the heparin (had that ready) and I can use those bags later. It was also too late for him to haul off the old file cabinet again.
Emotions:
I need to be careful what I say here. My back/shoulder is hurting, and I don't want to confuse discomfort with depression.
Also, a lot of my emotions have less to do with DH than with my personal world, which is shrinking. And it scares me. Everything is blurred and shadowy and getting worse. The new glasses might help (I desperately hope so) with reading, and with things a few feet away, such as TV. But not so that I can just put them on and "see" again.
I turn on the computer, open email, and scan ... and there's nothing there but "junk mail". I sit here most of the day with just DH ... and if he's awake, he usually has no clue what I'm talking about.
It's not helping that today makes 2 full weeks of cloudy days, with or without rain. Tody is with. Forecast said "dearly morning showers with possible sprinkles laterin the day" It's close to mid-morning now, and pouring.
Friday, October 18, 2013
Day 146
Day 146
Thursday October 18, 2013
This started out a fairly "normal" day. He hadn't slept as well, but was ready to get up by 10:00. About 1:00 he wanted to lay back down, and we hadn't heard from the CNA yet. She called just about that time, and got here around 2:00. He wanted to stay in bed; but about half an hour after she left, he suddenly demanded to get up.
He never would eat anything; but he didn't *seem* to be overly disoriented.
About 5:00 he insisted I take him to the bathroom.
It's difficult to describe his actions without giviing TMI, so fore-warned.
He claims he cannot have a bowel movement unless he bends over just about double while sitting on the commode. I keep telling him that can't be right (at least not that extreme) .. an aide had previously agreed with me that I need to go back to giving him some laxitive for a few days. I've put that off, because I'm afraid it would be "overkill" - give him the runs. Anyway, I kept telling hm to be carefil, he was going to fall. He said he knew that, he was bracing his feet (actually, his feet were a bit under the seat - not at all where he thought they weree - it's like the messages transmitters from the brain do not reach the legs at all any more). Plus he kept wanting to hold my hand and "pull". I never did figure that out.
He said he was ready to quit, and I was laying some chux on the bed so I could get him cleaned up. And while I wa standing there, trying to unfold one of the flimsy little things, in the blink of an eye - he pitched forward! He landed face down (actually on my feet), head against the night stand, and the commode pulled over on top of him. I got the commode set back up, and checked to see if he was all right. Then I called hospice.
DSS had called not long before sayng he was headed our way (he usually does on Thursdays). It took several calls and a wait, but turns out there's a nurse on duty on "2nd shift", so she came out. She checked him over, helped me move him enough to get off of the air hose, and put some ointment on apparent rug burns on his nose and forehead. Then we just waited for DSS. It took awhile, but once he got there, he and I managed to get DH up and onto the bed.
After that they left. I got him cleaned up, the floor cleaned the best I could, fixed him a sandwich (he hadn't eaten all day, and said he didn't want that; but ate it when I brought it, and some grapes), got the dialysis set up (skipped the heparin, I hadn't been able to get the bags prepped before DSS got there, got him some Tylenol and a sleeping pill and settled in.
Somewhere in all of that I managed to pull a muscle in my left should/upper back. I've warned him that Friday might have to be a mainly in bed day - which he might be OK with, because the nurse said he might find himself very sore by today. I just don't think I'll be able to lift him until the shoulder has a chance to rest and heal. But, he may well forget what I've said; and when he's ready to get up, he will demand that I get him up. If I don't, he'll try very hard to do it himself - not even remenbering he's already had a fairly bad fall from not listening to caution.
It was hard to get comfortable, so I didn't get enough sleep. Just before 4:00 AM he was restless enough to get me up. And again at 5:00ish. At 6:15 I gave up and got on up. I know I slept some because I had very odd dreams in between!
There will be a lot of people in and out today (Friday). I'm not sure if that's a good thing or not; but I have to be ready anyway.
Thursday October 18, 2013
This started out a fairly "normal" day. He hadn't slept as well, but was ready to get up by 10:00. About 1:00 he wanted to lay back down, and we hadn't heard from the CNA yet. She called just about that time, and got here around 2:00. He wanted to stay in bed; but about half an hour after she left, he suddenly demanded to get up.
He never would eat anything; but he didn't *seem* to be overly disoriented.
About 5:00 he insisted I take him to the bathroom.
It's difficult to describe his actions without giviing TMI, so fore-warned.
He claims he cannot have a bowel movement unless he bends over just about double while sitting on the commode. I keep telling him that can't be right (at least not that extreme) .. an aide had previously agreed with me that I need to go back to giving him some laxitive for a few days. I've put that off, because I'm afraid it would be "overkill" - give him the runs. Anyway, I kept telling hm to be carefil, he was going to fall. He said he knew that, he was bracing his feet (actually, his feet were a bit under the seat - not at all where he thought they weree - it's like the messages transmitters from the brain do not reach the legs at all any more). Plus he kept wanting to hold my hand and "pull". I never did figure that out.
He said he was ready to quit, and I was laying some chux on the bed so I could get him cleaned up. And while I wa standing there, trying to unfold one of the flimsy little things, in the blink of an eye - he pitched forward! He landed face down (actually on my feet), head against the night stand, and the commode pulled over on top of him. I got the commode set back up, and checked to see if he was all right. Then I called hospice.
DSS had called not long before sayng he was headed our way (he usually does on Thursdays). It took several calls and a wait, but turns out there's a nurse on duty on "2nd shift", so she came out. She checked him over, helped me move him enough to get off of the air hose, and put some ointment on apparent rug burns on his nose and forehead. Then we just waited for DSS. It took awhile, but once he got there, he and I managed to get DH up and onto the bed.
After that they left. I got him cleaned up, the floor cleaned the best I could, fixed him a sandwich (he hadn't eaten all day, and said he didn't want that; but ate it when I brought it, and some grapes), got the dialysis set up (skipped the heparin, I hadn't been able to get the bags prepped before DSS got there, got him some Tylenol and a sleeping pill and settled in.
Somewhere in all of that I managed to pull a muscle in my left should/upper back. I've warned him that Friday might have to be a mainly in bed day - which he might be OK with, because the nurse said he might find himself very sore by today. I just don't think I'll be able to lift him until the shoulder has a chance to rest and heal. But, he may well forget what I've said; and when he's ready to get up, he will demand that I get him up. If I don't, he'll try very hard to do it himself - not even remenbering he's already had a fairly bad fall from not listening to caution.
It was hard to get comfortable, so I didn't get enough sleep. Just before 4:00 AM he was restless enough to get me up. And again at 5:00ish. At 6:15 I gave up and got on up. I know I slept some because I had very odd dreams in between!
There will be a lot of people in and out today (Friday). I'm not sure if that's a good thing or not; but I have to be ready anyway.
Thursday, October 17, 2013
Day 145
(Tuesday and) Wednesday October 17, 2013
Physical:
I keep saying I'm not noticing changes on a day to day basis. But there have been some that I sort of focused on more on Wednesday. Recently when he sits in his recliner, he lists to the left. Some time back a nurse told me that a person who has a weakness (and we know his right side was weakened by a stroke) will lean more to the stronger side. But this is more than just leaning. At times he looks like he's all but falling out of the chair. I straighten him up, but he's soon slumped over again. Last night eating supper he first dropped his entire plate of food on the floor. I fixed him something else; and then put the foot rest up to give him more of a lap to balance on (I have not yet found any sort of table or tray that works well). He listed so far over while eating that if if had been at all liquid he would have poured it all out. He literally was holding a bowl (a deep corning dish) sideways and sort of scooping out.
He's been a bit more "foggy" laately too; and a touch more argumentative about saying he can do this or that (kept telling me he'd clean up the commode, and that he'd clean up the spilled food). Even when I'm literally holding him up, he says he can walk somewhere.
The crying jags have been almost every day - but around the same time of day. If he's not up yet, then it seems it passes. That's just weird (I told him I'd change the TV channel if "Price Is Right" upset him so much!).
For awhile he was wanting to get up early in the morning, and then wanting to get up and down several times a day. Now he seems to be getting back into the wanting to sleep more mode. Last night he was restless, and told me he just didn't feel good.
People:
The nurse came on Tuesday. She said "no changes" (that was the message she left with his Duke doctor); but there are changes in his O2 sats. He had been without the O2 for less than 2 minutes but apparently the tube wasn't placed correctly and he wasn't getting full benefit - for less than 10 minutes. His sat was 90%. She corrected the tube, tried again later, and it was up to 95%. That's OK .. except ... it's considerably lower than last time she checked - and this is on 3 liters.
The nurse did make several notes about things to bring up at her team metting that afternoon. I wonder how long until we hear back about anything?
The aide came Tuesday afternoon. Also his sister came and stayed with him while her husband gave me a ride to Wal-Mart to get new reading glasses ordered. I desperately hope they are an improvement!!
On Wednesday the aide didn't come because of a scheduling conflict. Just as well, as he didn't get out of bed until after 1:00. And, as I said, was all slumped over.
Emotions:
Worry. Tired (although Tuesday night we both actually had a good night!). Even with sleep, by mid afternoon I'm worn out. Everything hurts, and I take all the Aleve you're supposed to. Plus my eyes get to burning. I get more crying spells lately too, and I really can't pinpoint a reason. I mean, they happen at odd times. Well, one night I couldn't find Maggie when I got up to check on DH in the middle of the night. And I got such a crying spell, I just couldn't get myself back calmed down - even after I found Maggie. Yesterday I was just sitting watching TV, and started crying again.
I know it didn't help that my friend didn't come over. She said she would ... and I know perfectly well she hardly ever shows up when she says. She never bothers to check the weather. She doesn't come when it's too hot, or too cold, or too rainy, or even just cloudy. I only hear from her when she has something negative to tell me about.. Anyway, I knew she wouldn't come over, but I guess I still felt let down anyway.
Stress makes my hands itch. I don't know why, and I know it's weird. One night they got so bad it kept me awake for hours. I tried everything I could think of - and end the end I just clawed at them until they were raw. Now my hands look like I've been through a battle with both cats - and lost. But the itching stopped.
Physical:
I keep saying I'm not noticing changes on a day to day basis. But there have been some that I sort of focused on more on Wednesday. Recently when he sits in his recliner, he lists to the left. Some time back a nurse told me that a person who has a weakness (and we know his right side was weakened by a stroke) will lean more to the stronger side. But this is more than just leaning. At times he looks like he's all but falling out of the chair. I straighten him up, but he's soon slumped over again. Last night eating supper he first dropped his entire plate of food on the floor. I fixed him something else; and then put the foot rest up to give him more of a lap to balance on (I have not yet found any sort of table or tray that works well). He listed so far over while eating that if if had been at all liquid he would have poured it all out. He literally was holding a bowl (a deep corning dish) sideways and sort of scooping out.
He's been a bit more "foggy" laately too; and a touch more argumentative about saying he can do this or that (kept telling me he'd clean up the commode, and that he'd clean up the spilled food). Even when I'm literally holding him up, he says he can walk somewhere.
The crying jags have been almost every day - but around the same time of day. If he's not up yet, then it seems it passes. That's just weird (I told him I'd change the TV channel if "Price Is Right" upset him so much!).
For awhile he was wanting to get up early in the morning, and then wanting to get up and down several times a day. Now he seems to be getting back into the wanting to sleep more mode. Last night he was restless, and told me he just didn't feel good.
People:
The nurse came on Tuesday. She said "no changes" (that was the message she left with his Duke doctor); but there are changes in his O2 sats. He had been without the O2 for less than 2 minutes but apparently the tube wasn't placed correctly and he wasn't getting full benefit - for less than 10 minutes. His sat was 90%. She corrected the tube, tried again later, and it was up to 95%. That's OK .. except ... it's considerably lower than last time she checked - and this is on 3 liters.
The nurse did make several notes about things to bring up at her team metting that afternoon. I wonder how long until we hear back about anything?
The aide came Tuesday afternoon. Also his sister came and stayed with him while her husband gave me a ride to Wal-Mart to get new reading glasses ordered. I desperately hope they are an improvement!!
On Wednesday the aide didn't come because of a scheduling conflict. Just as well, as he didn't get out of bed until after 1:00. And, as I said, was all slumped over.
Emotions:
Worry. Tired (although Tuesday night we both actually had a good night!). Even with sleep, by mid afternoon I'm worn out. Everything hurts, and I take all the Aleve you're supposed to. Plus my eyes get to burning. I get more crying spells lately too, and I really can't pinpoint a reason. I mean, they happen at odd times. Well, one night I couldn't find Maggie when I got up to check on DH in the middle of the night. And I got such a crying spell, I just couldn't get myself back calmed down - even after I found Maggie. Yesterday I was just sitting watching TV, and started crying again.
I know it didn't help that my friend didn't come over. She said she would ... and I know perfectly well she hardly ever shows up when she says. She never bothers to check the weather. She doesn't come when it's too hot, or too cold, or too rainy, or even just cloudy. I only hear from her when she has something negative to tell me about.. Anyway, I knew she wouldn't come over, but I guess I still felt let down anyway.
Stress makes my hands itch. I don't know why, and I know it's weird. One night they got so bad it kept me awake for hours. I tried everything I could think of - and end the end I just clawed at them until they were raw. Now my hands look like I've been through a battle with both cats - and lost. But the itching stopped.
Tuesday, October 15, 2013
Day 143
(Saturday, Sunday and)Monday October 14, 2013
(Note: I think I might have accidently deleted a post, but can't be sure. I didn't think it had been 3 days since I wrote - but I could be wrong!)
Physical:
The last few days DH has been complaining about having a cold. His mind has been "wandering" a bit more. A few times when trying to get him up or down, he seems to just go limp. I tell him to straighten his knees, and he says he's trying to. It's getting harder to lift him. Every now and then he gets a stubborn streak. That scares me, because he just can't be convinced of what he can't physically do.
His eating is sporatic - some days good, some days not so much.
Last night (it's now early Tuesday morning) he slept about the best yet. He only woke up once, around 2:30, and went right back to sleep. (I was up by 5:00, but that's better than 4:00 and I did get at least 6 hours of sleep).
(Side note: I got some of the Fabreeze slumber spray, the honey-vanilla scent. DH does not know I used it. I believe it's helped him some; and I know it helped me! I slept peacefully, without feeling itchy all night, even with a flea-bag cat in my lap).
People:
Friday: CNA came, ; a friend's husband came and fixed back door lock; DSS stopped by.
Saturday, no contacct with anyone.
Sunday: the usual melee of too much going on. I think those kids get on his nerves some; but they mostly played outside, and DSS was in the living room with him. TGF took me to grocery store, then she cooked. She's a decent cook (though not as good as she thinks she is), but oh so messy!
Emotions:
I have too many "melt-downs". I have people telling me that I need help ... why are they saying that if they're not offering? And I don't want someone coming in to clean my house (exception: I'm willing to pay the lady that cleaned once a month for me last year, when I could afford her - that's not the same thing. When people insist on "helping", then I'm being selfish and ungrateful if I don't just fall on my knees in gratitude with no regard to whether they do things the way I want them done, or put my things where I can't find them.
Breathe.
What I need help with is someone to at least occasionally get DH up and down, set up dialysis, things like that. My back, hips, and knees ache nearly all the time. And I need help with reading stuff. I have a box full of mail, and a folder full of email ... but TGF hasn't had time to bother with that for 2 weeks now.
Oh yeah, this is about "emotions", not griping. I still feel sad a lot - get crying jags. But a lot of the time I'm too tired even for that. I keep going for the very simple reason that I have no choice.
I guess tecnically I have "choices". I can just not do some of what I do ... leave him in bed all day for example. But that would be cruel and I just can't do that. Or I could let him go to the hospice facility. That would be even worse. He's already confused and disoriented about whwere he is. And I wouldn't be able to be there much. And the only way they'd continue his dialysis is with hemo .. they might as well just sign his death certificate. I can't even be sure he wouldn't completely refuse dialysis at that point. And the difference b etween a doctor's office (or hospital) and hospice, they won't force him. They would legally have to make DSS and I make the decision whether to force him. This is all too confusing. He just needs to be at home, and I just have to do the best I can.
(Note: I think I might have accidently deleted a post, but can't be sure. I didn't think it had been 3 days since I wrote - but I could be wrong!)
Physical:
The last few days DH has been complaining about having a cold. His mind has been "wandering" a bit more. A few times when trying to get him up or down, he seems to just go limp. I tell him to straighten his knees, and he says he's trying to. It's getting harder to lift him. Every now and then he gets a stubborn streak. That scares me, because he just can't be convinced of what he can't physically do.
His eating is sporatic - some days good, some days not so much.
Last night (it's now early Tuesday morning) he slept about the best yet. He only woke up once, around 2:30, and went right back to sleep. (I was up by 5:00, but that's better than 4:00 and I did get at least 6 hours of sleep).
(Side note: I got some of the Fabreeze slumber spray, the honey-vanilla scent. DH does not know I used it. I believe it's helped him some; and I know it helped me! I slept peacefully, without feeling itchy all night, even with a flea-bag cat in my lap).
People:
Friday: CNA came, ; a friend's husband came and fixed back door lock; DSS stopped by.
Saturday, no contacct with anyone.
Sunday: the usual melee of too much going on. I think those kids get on his nerves some; but they mostly played outside, and DSS was in the living room with him. TGF took me to grocery store, then she cooked. She's a decent cook (though not as good as she thinks she is), but oh so messy!
Emotions:
I have too many "melt-downs". I have people telling me that I need help ... why are they saying that if they're not offering? And I don't want someone coming in to clean my house (exception: I'm willing to pay the lady that cleaned once a month for me last year, when I could afford her - that's not the same thing. When people insist on "helping", then I'm being selfish and ungrateful if I don't just fall on my knees in gratitude with no regard to whether they do things the way I want them done, or put my things where I can't find them.
Breathe.
What I need help with is someone to at least occasionally get DH up and down, set up dialysis, things like that. My back, hips, and knees ache nearly all the time. And I need help with reading stuff. I have a box full of mail, and a folder full of email ... but TGF hasn't had time to bother with that for 2 weeks now.
Oh yeah, this is about "emotions", not griping. I still feel sad a lot - get crying jags. But a lot of the time I'm too tired even for that. I keep going for the very simple reason that I have no choice.
I guess tecnically I have "choices". I can just not do some of what I do ... leave him in bed all day for example. But that would be cruel and I just can't do that. Or I could let him go to the hospice facility. That would be even worse. He's already confused and disoriented about whwere he is. And I wouldn't be able to be there much. And the only way they'd continue his dialysis is with hemo .. they might as well just sign his death certificate. I can't even be sure he wouldn't completely refuse dialysis at that point. And the difference b etween a doctor's office (or hospital) and hospice, they won't force him. They would legally have to make DSS and I make the decision whether to force him. This is all too confusing. He just needs to be at home, and I just have to do the best I can.
Saturday, October 12, 2013
Day 140
(Thursday and)Friday October 11 2013
Physical:
It seems to me he's coughing a lot more, and wheezing more. But the nurse said that wasn't in his chest, so I guess he has a bit of a cold. If she didn't think it is serious enough to be concerned, then I will try not to worry. Because he's so weak; or at least his legs are, it's hard to tell any change. His wake'sleep patterns have been off - but is that due to change in weaather? Lack of sleeping pills? I just don't know.
Friday morning his mental status was way off , but he got past it. Also on Friday he had another weepy spell. It's scary that this is starting to happen more frequently. The CNA said it was because I had been upset. Two hours earlier? Anyway it's happening around the same time of day. I told them both that "The Price Is Right" seems to set him off (and they both thought that was funny enough to get him past it).
Even with sleeping pills, he's not sleeping well; but he's not waking up in the middle of the night thinking he's in odd places. So he's staying more tired.
People:
Thursday was quiet. The CNA came, and DSS came late in the afternoon for a quick visit and to do the heparin.
Friday was much busier. The CMA came earlier than usual. That certainly worked in my favor, as she got stuck with more clean up that I usually get to do. In the afternoon the husband and stepson of a former co-worker came by and (finally) fixed my back door. I can now lock the back door! Then DSS and TGF came by. They needed to take more pictures of a car in the yard (I think - hope! - he has a buyer), but he also needed to vent. He is absolutely furious about a newspaper article. I don't blame him, and it's infuriating to feel so helpless against TPTB.
Emotions:
Friday morning I had a complete melt-down. I was trying to get the dialysis trash bagged up, and the tubing kept gteting entwined with his oxygen tubing. I don't know how or why; but since I can't really *see* either (clear!), it just completely defeated me. And, I couldn't get trash to get in the bag and stay there. I know that sounds stupid; butt really, it just kept spilling out. And I just completely lost it for awhile. The CNA said that's what had Jimmy upset; but there's too much of a time gap for me to believe that.
I find myself starting to resent him wanting to get up and down so much. I know that's Absolutely unfair, and it's just me being so tired. My feet, knees, back and hands ache all the time. (I take 2 Aleve every morning, and don't know that I can safely do more than that). I do understand that some of what's going on is his trying to rebell against his body shutting down o him. He's exercising what little control he has by controlling me. But understanding doesn't make it any easier physically! It also continues to freak me out that his mind refuses to accept his limitations. Even when I'm holding him up, supporting his weight, he still thinks I can let go and he can stand alone and walk across the room or something. I don't dare leave him alone any length of time ... I'm almost afraid to even walk out to the mailbox, because he can change from docile to agitated so fast. Part of why I don't sleep well is hering him cough and wheeze all night, and trying to decide if he's awake and trying to get up or just restless.
Now, of course, in the early morning hours - not even daylight yet - I'm up and awake for over an hour. He's sleeping peacefully.
Physical:
It seems to me he's coughing a lot more, and wheezing more. But the nurse said that wasn't in his chest, so I guess he has a bit of a cold. If she didn't think it is serious enough to be concerned, then I will try not to worry. Because he's so weak; or at least his legs are, it's hard to tell any change. His wake'sleep patterns have been off - but is that due to change in weaather? Lack of sleeping pills? I just don't know.
Friday morning his mental status was way off , but he got past it. Also on Friday he had another weepy spell. It's scary that this is starting to happen more frequently. The CNA said it was because I had been upset. Two hours earlier? Anyway it's happening around the same time of day. I told them both that "The Price Is Right" seems to set him off (and they both thought that was funny enough to get him past it).
Even with sleeping pills, he's not sleeping well; but he's not waking up in the middle of the night thinking he's in odd places. So he's staying more tired.
People:
Thursday was quiet. The CNA came, and DSS came late in the afternoon for a quick visit and to do the heparin.
Friday was much busier. The CMA came earlier than usual. That certainly worked in my favor, as she got stuck with more clean up that I usually get to do. In the afternoon the husband and stepson of a former co-worker came by and (finally) fixed my back door. I can now lock the back door! Then DSS and TGF came by. They needed to take more pictures of a car in the yard (I think - hope! - he has a buyer), but he also needed to vent. He is absolutely furious about a newspaper article. I don't blame him, and it's infuriating to feel so helpless against TPTB.
Emotions:
Friday morning I had a complete melt-down. I was trying to get the dialysis trash bagged up, and the tubing kept gteting entwined with his oxygen tubing. I don't know how or why; but since I can't really *see* either (clear!), it just completely defeated me. And, I couldn't get trash to get in the bag and stay there. I know that sounds stupid; butt really, it just kept spilling out. And I just completely lost it for awhile. The CNA said that's what had Jimmy upset; but there's too much of a time gap for me to believe that.
I find myself starting to resent him wanting to get up and down so much. I know that's Absolutely unfair, and it's just me being so tired. My feet, knees, back and hands ache all the time. (I take 2 Aleve every morning, and don't know that I can safely do more than that). I do understand that some of what's going on is his trying to rebell against his body shutting down o him. He's exercising what little control he has by controlling me. But understanding doesn't make it any easier physically! It also continues to freak me out that his mind refuses to accept his limitations. Even when I'm holding him up, supporting his weight, he still thinks I can let go and he can stand alone and walk across the room or something. I don't dare leave him alone any length of time ... I'm almost afraid to even walk out to the mailbox, because he can change from docile to agitated so fast. Part of why I don't sleep well is hering him cough and wheeze all night, and trying to decide if he's awake and trying to get up or just restless.
Now, of course, in the early morning hours - not even daylight yet - I'm up and awake for over an hour. He's sleeping peacefully.
Thursday, October 10, 2013
Day 138
Wednesday October 9, 2013
Physical:
This day was a bit odd. DH said at one point he didn't feel well. But, it has turned cold and the house was chilly. I don't know if he felt bad or was just too cool. He did not want to get up in the morning. He did not especially want a bath, but settled for a wash up. He didn't want to get up after the bath; but less than an hour later he wanted to get up ... but only if he could have a blanket in the living room. Meantime, I had caved and turned on the heat.
He was wheezing and coughin a lot, but the nurse said that was more sinus than lung. Still, she did turn his oxygen up to 3 liters. In the discussion about his recent status, she maintained that some of it is in response to/in resistance to his loss of control over so much.
The CNA and nurse were here at the same time - not sure if that was deliberate or not
DSS didn't call again. It was DS's birthday; I sent an email because I can't read the phone menu to call. I was hoping he would call, but he didn't.
Emotions:
Right now it's hard to separate the situation from the weather. We're into a fourth rainy day (or has it been longer? I can't even remember. I just know this has been a Very Wet year!). I don't do well on dark days (and dread the end of DST!). Night time isn't as bad; but all the lamps in the world don't help on gloomy chilly days.
It's hard to figure out what is depression, what is loneliness, what is exhaustion, and what is just S.A.D.
Physical:
This day was a bit odd. DH said at one point he didn't feel well. But, it has turned cold and the house was chilly. I don't know if he felt bad or was just too cool. He did not want to get up in the morning. He did not especially want a bath, but settled for a wash up. He didn't want to get up after the bath; but less than an hour later he wanted to get up ... but only if he could have a blanket in the living room. Meantime, I had caved and turned on the heat.
He was wheezing and coughin a lot, but the nurse said that was more sinus than lung. Still, she did turn his oxygen up to 3 liters. In the discussion about his recent status, she maintained that some of it is in response to/in resistance to his loss of control over so much.
The CNA and nurse were here at the same time - not sure if that was deliberate or not
DSS didn't call again. It was DS's birthday; I sent an email because I can't read the phone menu to call. I was hoping he would call, but he didn't.
Emotions:
Right now it's hard to separate the situation from the weather. We're into a fourth rainy day (or has it been longer? I can't even remember. I just know this has been a Very Wet year!). I don't do well on dark days (and dread the end of DST!). Night time isn't as bad; but all the lamps in the world don't help on gloomy chilly days.
It's hard to figure out what is depression, what is loneliness, what is exhaustion, and what is just S.A.D.
Wednesday, October 9, 2013
Day 137
(Monday and) Tuesday October 8, 2013
Physical:
Sometimes it's hard to separate actual physical changes from chemical effects. Meaning, stopping Paxil; and running out of sleeping pills. I do notice he seems to be coughing a lot more; and that is obviously disturbing his sleep. Monday was a fairly good, normal day. Tuesday he wanted to stay in bed and nap after his bath, and he never got back up. He dozed late into the day and the hosue was chilly. I did sit the bed up, brought him dinner (skipped lunch), and turned on TV for awhile (while I set up the dialysis). So, not really surprising he didn't sleep all that well. When I got up to check on him - several times when he had the bed creaking a lot (think it needs some WEro!!!) - he was not disoriented; or at least not drastically. It's very confusing how the different symptoms come and go - and as I said to start, how much is disease progression and how much is chemical intervention (or lack of):
People:
The aide comes every week day now. She no longer calls ahead; but the time frame is fairly consistant, so it's OK. DSS was here Monday when he dropped off one of the bonus brats (claimed he was sick; TGF never takes off work, always gets someone else to deal with her kids). She picked the kid up later. He was annoying, but not "bad". It just annoys me for kids to get by with what was essentially hooky. DSS didn't call Tuesday. I guess he's too stressed out by his own situation right now.
Emotions:
I am being bombaarded with too many situations and it's making me crazy. DH had yet another weepy spell, though I was able to get him past it by launching into a very involved tangled (and mostlyy fabricated) explanation of what was causing it. I'm very concerned about DSS and TGF and their situation; but I've already put myself in jeopardy helping them, so nothing more I can do. And now this government (insert filthy word). During the news last night, it suddenly hit me that at the rate they're going, we could well be next on the list of those with no income. And one man has the power to cause all this??? What's wrong with that picture????At this point it no longer matters whether his point of view is right or wrong. He's holding the entire country hostage to HIS opinion. Yes, I'm very scared. I know we could squeak by for a month or two (though it would mean a very lean Christmas; but we've had those before). But how long? And why should we?
Without the sleeping pills (and we were just getting to a fairly workable routine), I don't get to sleep through the night. If I can get at least 5, preferably 6 hours of sleep, I can manage (but will still fizzle by late afternoon). But up and down makes it really hard. And right now the house is chilly. We have warm clothes and plenty of blankets and quilts .. but that doesn't help me when I have to get up and walk through a chilly house in the middle of the night!
I have always had S.A.D., so this rainy spell isn't helping either. When it's gray and wet out, even turning on all the lamps inside doesn't help. It also doesn't help that my vision is permanently blurred and faded (can only detect bright colors now - and the pale blue on the computer screen and the cycler machine are nearly impossible to read, which makes me frantic at times).
The alarm went off (he rolled over and pinched the drain tube), but disrupted my train of thought. It's time to start this new day anyway.
Physical:
Sometimes it's hard to separate actual physical changes from chemical effects. Meaning, stopping Paxil; and running out of sleeping pills. I do notice he seems to be coughing a lot more; and that is obviously disturbing his sleep. Monday was a fairly good, normal day. Tuesday he wanted to stay in bed and nap after his bath, and he never got back up. He dozed late into the day and the hosue was chilly. I did sit the bed up, brought him dinner (skipped lunch), and turned on TV for awhile (while I set up the dialysis). So, not really surprising he didn't sleep all that well. When I got up to check on him - several times when he had the bed creaking a lot (think it needs some WEro!!!) - he was not disoriented; or at least not drastically. It's very confusing how the different symptoms come and go - and as I said to start, how much is disease progression and how much is chemical intervention (or lack of):
People:
The aide comes every week day now. She no longer calls ahead; but the time frame is fairly consistant, so it's OK. DSS was here Monday when he dropped off one of the bonus brats (claimed he was sick; TGF never takes off work, always gets someone else to deal with her kids). She picked the kid up later. He was annoying, but not "bad". It just annoys me for kids to get by with what was essentially hooky. DSS didn't call Tuesday. I guess he's too stressed out by his own situation right now.
Emotions:
I am being bombaarded with too many situations and it's making me crazy. DH had yet another weepy spell, though I was able to get him past it by launching into a very involved tangled (and mostlyy fabricated) explanation of what was causing it. I'm very concerned about DSS and TGF and their situation; but I've already put myself in jeopardy helping them, so nothing more I can do. And now this government (insert filthy word). During the news last night, it suddenly hit me that at the rate they're going, we could well be next on the list of those with no income. And one man has the power to cause all this??? What's wrong with that picture????At this point it no longer matters whether his point of view is right or wrong. He's holding the entire country hostage to HIS opinion. Yes, I'm very scared. I know we could squeak by for a month or two (though it would mean a very lean Christmas; but we've had those before). But how long? And why should we?
Without the sleeping pills (and we were just getting to a fairly workable routine), I don't get to sleep through the night. If I can get at least 5, preferably 6 hours of sleep, I can manage (but will still fizzle by late afternoon). But up and down makes it really hard. And right now the house is chilly. We have warm clothes and plenty of blankets and quilts .. but that doesn't help me when I have to get up and walk through a chilly house in the middle of the night!
I have always had S.A.D., so this rainy spell isn't helping either. When it's gray and wet out, even turning on all the lamps inside doesn't help. It also doesn't help that my vision is permanently blurred and faded (can only detect bright colors now - and the pale blue on the computer screen and the cycler machine are nearly impossible to read, which makes me frantic at times).
The alarm went off (he rolled over and pinched the drain tube), but disrupted my train of thought. It's time to start this new day anyway.
Monday, October 7, 2013
Day 135
Sunday October 6, 2013
(Note: I cannot read the subject line, so I don't know if I'm keeping count correctly; but I guess it's at least close)
Physical:
In some ways it was a pretty good day; but that might only be because DH really had no choice. After the early morning issues, he seemed mostly "OK". I got him up about 10:00. And - he stayed up until about 9:00! Part of that was because I wasn't here about the time he would have wanted to lay down. He also had a sleeping pill (sadly, the last - no follow through on the refill) and actually slept all night. (which means I did too, though not as long as he does. I'll take what I can get!!).
He also ate very well. I fixed him a pot pie for lunch; then he ate a couple of hamburgers (McD, dollar ones) in mid afternoon. Then kind of late (8:00?) he had a nice supper. Perhaps eating late also helped him sleep? Something to think about.
DSS was here with him, and said there were some confusion issues. He handles them differently than I do. I don't think he gets as frustrated - but then, hedoesn't have to deal with it (the confusion) day in and day out, or in the middle of the night.
Since DH slept well, there were no issues with feeling like he couldn't get enough air. It seems like that is starting to happen more frequently. Trouble is, I have no way of knowing if that's an actual lung issue or a dementia issue (not that he "imagines" he's short of breath, but that more of the blood vessles that tell his brain he's getting air are shutting down).
People:
DSS and crew were supposed to come over about 12:30. It was nearly 2:00 before they got here. TGF blames it all on the boys being slow. I have blatantly told her that SHE is the one in charge, and if they don't do what she says, SHE needs to do something about it - more than just keep yelling at them. I'm sure I was an overly permissive mother to DS - but I certainly knew how to swat a butt when it was needed!
Anyway, TGF didn't help me with nearly as much as I'd hoped (and TOLD her I needed). First because they were so late. But also because she had made up her mind we were going to go all the way over to Smithfield to see her sister's new house. With this and that going on (first go get her mom, then dawdle, then finally go follow the sister), it took a huge chunk of time. Then we went to Wal-Mart. And while I prefer somewhere else for groceries, there were just a few things I did need. We left there and went by a local restaurant to pick up take-out. Once again, I'm paying for lunch, dinner, and a few of her groceries. All done on my car, my gas.
Emotions:
I'm extremely frustrated on top of everything else. I know TGF *thinks* she gave me an outing. But being forced to spend part of the only errand time I get visitng her sister is NOT my idea of fun. It just meant everything else was rushed. It meant It meant we didn't finish the one project she'd been promising for weeks to help with (sorting pantry - always to her benefit!). It meant there was no time at all for her to help me look through mail to see if there's anything important I need to take care of; and also no time to look at a few emails I've saved because I'm not sure what they are.
I spent an hour this morning just straightening up after those boys were here. I don't really care that much that the pillows and stuff were "wrong". But it annoys the crap out of me to keep finding half-full abandoned water bottles. And everything was just "messy". The table needed to be washed down. Trash was never put in the can.
OK, all of that doesn't have anything to do with DH. I'm just tired and frutrated. They come over with the idea that they are "helping" us. But while DH enjoys having DSS here - the fact is, all DSS does is sit around and feel sorry for himself. Yes, I know, that's all I do. Except that I DO things all day, while he doesn't really. He wants so badly to run his own business, but doesn't have a clue how to do it properly. And he's way too hard-headed and stubborn to work for someone else.
OK, I have to get on with today, not sit here complaining about kids.
DH is waking up, and wheezing badly. The day begins.
(Note: I cannot read the subject line, so I don't know if I'm keeping count correctly; but I guess it's at least close)
Physical:
In some ways it was a pretty good day; but that might only be because DH really had no choice. After the early morning issues, he seemed mostly "OK". I got him up about 10:00. And - he stayed up until about 9:00! Part of that was because I wasn't here about the time he would have wanted to lay down. He also had a sleeping pill (sadly, the last - no follow through on the refill) and actually slept all night. (which means I did too, though not as long as he does. I'll take what I can get!!).
He also ate very well. I fixed him a pot pie for lunch; then he ate a couple of hamburgers (McD, dollar ones) in mid afternoon. Then kind of late (8:00?) he had a nice supper. Perhaps eating late also helped him sleep? Something to think about.
DSS was here with him, and said there were some confusion issues. He handles them differently than I do. I don't think he gets as frustrated - but then, hedoesn't have to deal with it (the confusion) day in and day out, or in the middle of the night.
Since DH slept well, there were no issues with feeling like he couldn't get enough air. It seems like that is starting to happen more frequently. Trouble is, I have no way of knowing if that's an actual lung issue or a dementia issue (not that he "imagines" he's short of breath, but that more of the blood vessles that tell his brain he's getting air are shutting down).
People:
DSS and crew were supposed to come over about 12:30. It was nearly 2:00 before they got here. TGF blames it all on the boys being slow. I have blatantly told her that SHE is the one in charge, and if they don't do what she says, SHE needs to do something about it - more than just keep yelling at them. I'm sure I was an overly permissive mother to DS - but I certainly knew how to swat a butt when it was needed!
Anyway, TGF didn't help me with nearly as much as I'd hoped (and TOLD her I needed). First because they were so late. But also because she had made up her mind we were going to go all the way over to Smithfield to see her sister's new house. With this and that going on (first go get her mom, then dawdle, then finally go follow the sister), it took a huge chunk of time. Then we went to Wal-Mart. And while I prefer somewhere else for groceries, there were just a few things I did need. We left there and went by a local restaurant to pick up take-out. Once again, I'm paying for lunch, dinner, and a few of her groceries. All done on my car, my gas.
Emotions:
I'm extremely frustrated on top of everything else. I know TGF *thinks* she gave me an outing. But being forced to spend part of the only errand time I get visitng her sister is NOT my idea of fun. It just meant everything else was rushed. It meant It meant we didn't finish the one project she'd been promising for weeks to help with (sorting pantry - always to her benefit!). It meant there was no time at all for her to help me look through mail to see if there's anything important I need to take care of; and also no time to look at a few emails I've saved because I'm not sure what they are.
I spent an hour this morning just straightening up after those boys were here. I don't really care that much that the pillows and stuff were "wrong". But it annoys the crap out of me to keep finding half-full abandoned water bottles. And everything was just "messy". The table needed to be washed down. Trash was never put in the can.
OK, all of that doesn't have anything to do with DH. I'm just tired and frutrated. They come over with the idea that they are "helping" us. But while DH enjoys having DSS here - the fact is, all DSS does is sit around and feel sorry for himself. Yes, I know, that's all I do. Except that I DO things all day, while he doesn't really. He wants so badly to run his own business, but doesn't have a clue how to do it properly. And he's way too hard-headed and stubborn to work for someone else.
OK, I have to get on with today, not sit here complaining about kids.
DH is waking up, and wheezing badly. The day begins.
Sunday, October 6, 2013
Day 134
Saturday October 5, 2013
Physical:
After the previous night's episode of feeling unable to breathe, DH seems OK now. He still occasionally does without the oxygen, but not long any more. He sounds OK daytime, but his breathing sounds very rough at night (and how much of that is due to his apnea? he refuses to use the BIPAP any more).
He stayed in bed later in the morning, closer to what used to be "normal". But he still wanted up and down several times, which is getting to be really exhausting. Part of the problem seems to be that the new chair isn't as good as I'd hoped. The seat seems to have a little bit of a forward tilt. So some days he can sit there comfortably for hours - other days, not even 2 hours. I tried putting a pillow in the seat, but that didn't help. Then I put 2 pillows - that actually helped, except that the top one wantsts to slide forward. If the doubled pillows seem to work, I'll have to invent some sort of cover to contain them both - maybe even a way to tie them so they won't slide forward. I thought about velcro, but it wouldn't be strong enough.
He's eatting better - but since that seems to be and off and on thing, hard to tell if it's because his appetite is better or because I'm better at guessing what he will eat. And in the background, I can't help but wonder how many of his previous symptoms were simply things being suppressed by the Paxil!\Saturday was also a more emotional day. He has moments of clarity when he's completely aware that his mind is no longer functioning correctly - and it upsets him greatly. For someone always used to being "in charge", losing control is depressing and scary.
Apparently his mind's ability to comprehend his physical limitations is completely gone. There is rarely a time of transfer (bed to chair, etc) that he doesn't start out thinking he can do it without help. I wonder if it will come to having to come up with some sort of restraints? I don't know how that would work either (he could, for example, tip the wheelchair over). The nurses believe he will get to the point of being totally bed-bound. I think they thought he was closer than he is (again, the Paxil?). But he does gradually get weaker. Meantime, he's struggling to have control - and the only thing he can do is insist on up and down.
People:
We saw or heard from no one It's extremely odd to have gone 2 days without hearing from DSS.
Emotions:
Since Friday night was so short, Saturday was a hard day. I got nearly nothing done, couldn't stay awake by afternoon. And doing evening stuff was very hardd, I ached all over. Saturday night was much better. Even though I still woke too early (it's now early Sunday morning), I did get more sleep. There was one middle of the night incident, but he only wanted dry pull-ups on. We both went right back to sleep; so I think I got close to 6 hours. He is still sleeping (I think). Saturday he was willing to snooze in bed until 10:00. I'm not happy with myself that there's so much I want to get done and seem unable. Part of it's because of being too tired. Partly discouraged . And a large part is that I can't see anything clearly any more, so it's hard to tell what does or doesn't need to be done. I try to keep up with computer stuff; but my hands ache, and I can't type well any more. And I have to lean very close and use a magnifying glass to read very large print.
It's very frustrating, and there really aren't any answers.
Note: I guess I spoke too soon. And while this morning is technically Sunday, if I wait until tomorrow morning I'll likely forget.
DH started rattling the rails. It was just after 6:00, and I went to see what he was up to. He had managed to slide himself toward the foot of the bed, and had his feet hanging out of the gap between the rail and the footboard. He said he was going to the bathroom. And I thought by getting up so freaking early I was going to have time to myself??? Not. :( So I got him up and onto the commode (and throughout, he's saying he can do it himself - even when I'm holding him up and his legs aren't supporting him!). So, commode time. Wait. Get him up. Clean him up. Get dry pull-ups on him. Go get the early pill and some water. The whole process took close to 45 minutes. I still have to go back and clean the commode. Also, every time he uses it any more, he misses and pees on the floor. The floor is covered with little blue pads. I guess I have to find some sort of large something to put on the floor under the commode. Something wash-and-reuseable. Now I'm tired, I've lost a chunk of "my" time, and it isn't even daylight yet.
Physical:
After the previous night's episode of feeling unable to breathe, DH seems OK now. He still occasionally does without the oxygen, but not long any more. He sounds OK daytime, but his breathing sounds very rough at night (and how much of that is due to his apnea? he refuses to use the BIPAP any more).
He stayed in bed later in the morning, closer to what used to be "normal". But he still wanted up and down several times, which is getting to be really exhausting. Part of the problem seems to be that the new chair isn't as good as I'd hoped. The seat seems to have a little bit of a forward tilt. So some days he can sit there comfortably for hours - other days, not even 2 hours. I tried putting a pillow in the seat, but that didn't help. Then I put 2 pillows - that actually helped, except that the top one wantsts to slide forward. If the doubled pillows seem to work, I'll have to invent some sort of cover to contain them both - maybe even a way to tie them so they won't slide forward. I thought about velcro, but it wouldn't be strong enough.
He's eatting better - but since that seems to be and off and on thing, hard to tell if it's because his appetite is better or because I'm better at guessing what he will eat. And in the background, I can't help but wonder how many of his previous symptoms were simply things being suppressed by the Paxil!\Saturday was also a more emotional day. He has moments of clarity when he's completely aware that his mind is no longer functioning correctly - and it upsets him greatly. For someone always used to being "in charge", losing control is depressing and scary.
Apparently his mind's ability to comprehend his physical limitations is completely gone. There is rarely a time of transfer (bed to chair, etc) that he doesn't start out thinking he can do it without help. I wonder if it will come to having to come up with some sort of restraints? I don't know how that would work either (he could, for example, tip the wheelchair over). The nurses believe he will get to the point of being totally bed-bound. I think they thought he was closer than he is (again, the Paxil?). But he does gradually get weaker. Meantime, he's struggling to have control - and the only thing he can do is insist on up and down.
People:
We saw or heard from no one It's extremely odd to have gone 2 days without hearing from DSS.
Emotions:
Since Friday night was so short, Saturday was a hard day. I got nearly nothing done, couldn't stay awake by afternoon. And doing evening stuff was very hardd, I ached all over. Saturday night was much better. Even though I still woke too early (it's now early Sunday morning), I did get more sleep. There was one middle of the night incident, but he only wanted dry pull-ups on. We both went right back to sleep; so I think I got close to 6 hours. He is still sleeping (I think). Saturday he was willing to snooze in bed until 10:00. I'm not happy with myself that there's so much I want to get done and seem unable. Part of it's because of being too tired. Partly discouraged . And a large part is that I can't see anything clearly any more, so it's hard to tell what does or doesn't need to be done. I try to keep up with computer stuff; but my hands ache, and I can't type well any more. And I have to lean very close and use a magnifying glass to read very large print.
It's very frustrating, and there really aren't any answers.
Note: I guess I spoke too soon. And while this morning is technically Sunday, if I wait until tomorrow morning I'll likely forget.
DH started rattling the rails. It was just after 6:00, and I went to see what he was up to. He had managed to slide himself toward the foot of the bed, and had his feet hanging out of the gap between the rail and the footboard. He said he was going to the bathroom. And I thought by getting up so freaking early I was going to have time to myself??? Not. :( So I got him up and onto the commode (and throughout, he's saying he can do it himself - even when I'm holding him up and his legs aren't supporting him!). So, commode time. Wait. Get him up. Clean him up. Get dry pull-ups on him. Go get the early pill and some water. The whole process took close to 45 minutes. I still have to go back and clean the commode. Also, every time he uses it any more, he misses and pees on the floor. The floor is covered with little blue pads. I guess I have to find some sort of large something to put on the floor under the commode. Something wash-and-reuseable. Now I'm tired, I've lost a chunk of "my" time, and it isn't even daylight yet.
Saturday, October 5, 2013
Day 133
Friday October 4, 2013
Physical:
I'm still not seeing much day to day difference. But there were several occasionns in the past weeks, and a more "severe" one last night, where he felt like he wasn't getting enough air. He woke me up at 2:30ish, asking me to turn the machine up (don't know if I did or not; I know I'm not supposed to mess with it without a doctor's order, but at that time I didn't care. I just can't read the dial to know what to do). He asked if "this is what it feels like to die". I added the humidifier bottle to the concentrator; I also brought him some water, and changed his pull-ups. He finally got a bit more comfortable and went to sleep. (I did not). He did not really know where he was, but wasn't upset about it. Later, 5:30 or so, he woke up and wanted to "get out of here". I tried to talk to him a few minutes, but he was totally off somewhere I couldn't reach. He did go on back to sleep. I still did not.
I'm starting to notice subtle personality changes. (I'm sure the nurse would say this, too, is related to the kidney disease. I would have thought it was the dementia. I wonder if the toxins that build up, instead of causing an infection as I've always assumed they would, are leaching into other parts of his body? That's a pretty scary thought, especially since there's not really any way to know, and not really anything to do about it.
Anyway, he's having more spells of being snarky or bossy (for want of a better word). He's always been a bit of a chauvinist - he was raised that way. But this is different. It's like some of his personality traits are becoming exagerated. And the things with that dratted pocket knife - he's getting more protective (obsessive) about *his* stuff, in particular the guns and knives. I'm getting more and more uncomfortable with it. I really want DSS to take that stuff to his house - only, it would be less safe there.
His sleep/wake cycle 0 except last night - has seemed to be getting better. Unfortunately for me, that means he's wanting to be up and down about 5 times a day; and I don't know how long I'll be able to keep that up.
People:
The CNA came, but had to kind of rush off when she was done as they added more patients to her schedule. DSS didn't call (unusual).
Emotions:
I don't know. I'm tired, so not a good time to try to sort how I'm feeling. I'm depressed at the lack of communication from the kids. I'm scared I'm not gong to be able to keep handling everything. I'm frustrated that all of what time I do have is constantly interrupted and I can't accomplish things I need/want to get done. Mostly, I'm just tired.
Physical:
I'm still not seeing much day to day difference. But there were several occasionns in the past weeks, and a more "severe" one last night, where he felt like he wasn't getting enough air. He woke me up at 2:30ish, asking me to turn the machine up (don't know if I did or not; I know I'm not supposed to mess with it without a doctor's order, but at that time I didn't care. I just can't read the dial to know what to do). He asked if "this is what it feels like to die". I added the humidifier bottle to the concentrator; I also brought him some water, and changed his pull-ups. He finally got a bit more comfortable and went to sleep. (I did not). He did not really know where he was, but wasn't upset about it. Later, 5:30 or so, he woke up and wanted to "get out of here". I tried to talk to him a few minutes, but he was totally off somewhere I couldn't reach. He did go on back to sleep. I still did not.
I'm starting to notice subtle personality changes. (I'm sure the nurse would say this, too, is related to the kidney disease. I would have thought it was the dementia. I wonder if the toxins that build up, instead of causing an infection as I've always assumed they would, are leaching into other parts of his body? That's a pretty scary thought, especially since there's not really any way to know, and not really anything to do about it.
Anyway, he's having more spells of being snarky or bossy (for want of a better word). He's always been a bit of a chauvinist - he was raised that way. But this is different. It's like some of his personality traits are becoming exagerated. And the things with that dratted pocket knife - he's getting more protective (obsessive) about *his* stuff, in particular the guns and knives. I'm getting more and more uncomfortable with it. I really want DSS to take that stuff to his house - only, it would be less safe there.
His sleep/wake cycle 0 except last night - has seemed to be getting better. Unfortunately for me, that means he's wanting to be up and down about 5 times a day; and I don't know how long I'll be able to keep that up.
People:
The CNA came, but had to kind of rush off when she was done as they added more patients to her schedule. DSS didn't call (unusual).
Emotions:
I don't know. I'm tired, so not a good time to try to sort how I'm feeling. I'm depressed at the lack of communication from the kids. I'm scared I'm not gong to be able to keep handling everything. I'm frustrated that all of what time I do have is constantly interrupted and I can't accomplish things I need/want to get done. Mostly, I'm just tired.
Friday, October 4, 2013
Day 133 (note)
Friday October 3, 2013
I will write about today later, though (s far) there is nothing in particular to write about.
I did mention to the CNA this morning about the weepy spell yesterday. She recommended I call the nurse, because they might possibly prescribe something. I called hospice and left a message, and the nurse called me back very quickly. I explained my concerns that maybe I was wrong to have stopped the Paxil.
Her response was that the emotional turmoil is a natural progression connected to his kidney disease. She has said things similar to that before, but it didn't particularly register until now. I've been just assuming that as long as the dialysis goes OK, the ESRD is "under control". Plus, all the labs that the kidney center keep doing always apparently come back with acceptable values.
I'm really confused, and frustrated because there isno one to ask questions. I am going to try to look up some information; but with my poor vision, that's going to be very difficult. I have been told that no matter how well the PD goes, it can never filter 100% of toxins out of the body. That means that over time toxins can build up and eventually cause problems. When I asked, it was confirmed that that meant he will at some point get another peritoneal infection. No matter how well I keep to sterile conditions with setting things up, it will happen. It never occurred to me that it would become expressed in other areas - like emotions, contributing to confusion, etc. It's a bit frustrating. So many things are attributed to the kidney disease, but hospice doesn't deal with that because he's on dialysis. And while his lungs are definately failing, there's no way to tell how quickly that is happening (no more clinic visits means no more boncoscopies, no more function tests, etc)
I can't even go back and edit what I've written, so I don't know how well I'll be able to research. Just what symptoms should I be aware of in connection with the progression of his kidney disease? The hospice people can't deal with it since he's on dialysis. If I stop the dialysis he'll die. (and DSS would probably, rightfully, accuse me of murder). It feels so frustrating that what is making him worse (maybe) is the one thing hospice can't deal with. I don't know what I should/can do. If he does get another infection (and honestly, I'm sort of surprised he hasn't - it's been more than 7 months since he was last sick, and that seems a long stretch for him), there will likely be another sharp decline in his overall health (meaning it could also accelerate his lung failure) as well as another slip downward in his mental status. It's hard to be prepared to deal with something without having any idea what or when.
I will write about today later, though (s far) there is nothing in particular to write about.
I did mention to the CNA this morning about the weepy spell yesterday. She recommended I call the nurse, because they might possibly prescribe something. I called hospice and left a message, and the nurse called me back very quickly. I explained my concerns that maybe I was wrong to have stopped the Paxil.
Her response was that the emotional turmoil is a natural progression connected to his kidney disease. She has said things similar to that before, but it didn't particularly register until now. I've been just assuming that as long as the dialysis goes OK, the ESRD is "under control". Plus, all the labs that the kidney center keep doing always apparently come back with acceptable values.
I'm really confused, and frustrated because there isno one to ask questions. I am going to try to look up some information; but with my poor vision, that's going to be very difficult. I have been told that no matter how well the PD goes, it can never filter 100% of toxins out of the body. That means that over time toxins can build up and eventually cause problems. When I asked, it was confirmed that that meant he will at some point get another peritoneal infection. No matter how well I keep to sterile conditions with setting things up, it will happen. It never occurred to me that it would become expressed in other areas - like emotions, contributing to confusion, etc. It's a bit frustrating. So many things are attributed to the kidney disease, but hospice doesn't deal with that because he's on dialysis. And while his lungs are definately failing, there's no way to tell how quickly that is happening (no more clinic visits means no more boncoscopies, no more function tests, etc)
I can't even go back and edit what I've written, so I don't know how well I'll be able to research. Just what symptoms should I be aware of in connection with the progression of his kidney disease? The hospice people can't deal with it since he's on dialysis. If I stop the dialysis he'll die. (and DSS would probably, rightfully, accuse me of murder). It feels so frustrating that what is making him worse (maybe) is the one thing hospice can't deal with. I don't know what I should/can do. If he does get another infection (and honestly, I'm sort of surprised he hasn't - it's been more than 7 months since he was last sick, and that seems a long stretch for him), there will likely be another sharp decline in his overall health (meaning it could also accelerate his lung failure) as well as another slip downward in his mental status. It's hard to be prepared to deal with something without having any idea what or when.
Day 132
(Wednesday and) Thursday October 3, 2013
Physical:
I am seeing some changes, but I suspect some of them I can attribute to stopping the Paxil. I don't really know if it's good or bad. The nurse not only didn't indicate a "leveling" of his condition, but increased the amount of assistance (for his benefit or mine???).
Thursday was a very odd day, and I just don't know what to make of it. For one thing, he was awake early (I think before 7:00 at least). I got him up about 9:30. Then he wanted to lay down around 1:00. And then he said he couldn't sleep, so got back up around 3:00. And then about 5:30 said he couldn't stand just sitting there any more and *had* to lay down. And then got him back up around 7:30 .. which totally messed up the evening routine (dinner, dialysis set up). I got him back to bed around 9:00 to 9:30. Somewhere in all those up and down sessions was a potty session (more to clean up).
During the morning, we were sitting watching TV (note: since he doesn't seem to care, I quit trying to find something for him; there aren't that many choices, and I couldn't afford to keep all those movie channels no one was watching So I turn on Rachel Ray and sit in there with him instead of us being in separate rooms watching different programs). Anyway, out of the blue, he just started crying. Now, this is WAY out of character for him. Is it connected to his mental status? Or to a period of more clarity and realizing the condition he's in? And even if it's that - was I wrong to take him off the Paxil? I think I will need to call the nurse today (Friday) with questions. It's good that he's more alert. I think. But not if it means he's depressed.
People:
My girlfriend came by - first time in over 2 weeks. She waited until she had a major "boo boo" for me to feel sorry for. Guess I disappointed her. I'm not going to stick my face 4 or 5 inches away from hers just to see her busted lip; and no one seems to "get it" that I can't see face details at all. I know people by their size, shape, voice. (if someone walks up to the door, I have no clue who it is until they come in and speak, or I open it and am close enough to determine who it is).
DSS came as he always does on Thursday, though it was very late. He did the heparin injections, and sat and talked to DH awhile. For some reason, DH was fretting about his knives. He was convinced one of the kids had stolen his pocket knife. DSS had to go get the box of knives out of the closet and show him they were all there. Then DH insisted he leave the one pocket knife out. DSS put it on the dresser - pointed out to DH that he didn't have any pockets. I'm very uncomfortable with this whole situation. I'm afraid he'll try to get that dratted knife. He's always had a knife in his pocket; but with his mind the way it is, it scaares me. I'm afraid for him to get hold of it; and I'm also afraid he'll hurt himself in his determination to reach it by himself. And I have recently begun to see a disturbing trend towards mutiny if he doesn't get his way.
Emotions:
All over the place. This morning I'm weepy, and not sure why. I got to sleep "later" (5:00). He slept through the night, just one incident of the alarm; and we both got back to sleep after that. I don't know how to handle the changes I see. They're not so much physical. And there have not been so many incidents of total confusion or disorientation (and not sure how much of that is because we don't ask; and how much of the constant reenforcing "you are home" is getting through). But he seems to be getting worse about not realizing he can't stand on his own. It's very odd how much strength he has in his hands and arms; and yet try to stand him up and he crumbles. And yet - he's totally convinced he can just get up and walk where he wants to go. He gets annoyed - sometimes actually angry - at the railing being on the bed. He occasionally gets resentful of the pull-ups (and, like a toddler, is quick to point out when they're dry!).
The nurse has indicated to me (and her opinion seems to be backed up by the CNA) that she believes he will become bed-bound, sooner rather than later. And yet I'm seeing him wanting to be up more. Then he gets bored just sitting (and who can blame him for that!) - but I don't know what to do. And the up and down so many times a day is very quicly going to be more than I can handle.
I think it's probably not helping that it's just the two of us here all the time. I'm pretty much completely trapped here - only "allowed" out for a grocery/med refill run on Sunday afternoon; and to ride along (that starts this month) with a once a month trip to the dialysis clinic. People do occasionally come to visit. It's nice that so many hospice people come; but they are all over stretched as is, and can't just sit and visit. He enjoys it whenever someone comes and spends time with him (I can understand that - I would too; at least I would if it was someone who actually cared how I was doing and not just to show off her latest misadventure). I almost wonder if he really would be better off in a facility where he would have more contact with other people; but I very seriously doubt he would be happy that way, even with other people around. He really misses his days as a volunteer at the aquarium and Pea Island. It's too bad we now live so far from the outer banks that none of them can visit him.
Physical:
I am seeing some changes, but I suspect some of them I can attribute to stopping the Paxil. I don't really know if it's good or bad. The nurse not only didn't indicate a "leveling" of his condition, but increased the amount of assistance (for his benefit or mine???).
Thursday was a very odd day, and I just don't know what to make of it. For one thing, he was awake early (I think before 7:00 at least). I got him up about 9:30. Then he wanted to lay down around 1:00. And then he said he couldn't sleep, so got back up around 3:00. And then about 5:30 said he couldn't stand just sitting there any more and *had* to lay down. And then got him back up around 7:30 .. which totally messed up the evening routine (dinner, dialysis set up). I got him back to bed around 9:00 to 9:30. Somewhere in all those up and down sessions was a potty session (more to clean up).
During the morning, we were sitting watching TV (note: since he doesn't seem to care, I quit trying to find something for him; there aren't that many choices, and I couldn't afford to keep all those movie channels no one was watching So I turn on Rachel Ray and sit in there with him instead of us being in separate rooms watching different programs). Anyway, out of the blue, he just started crying. Now, this is WAY out of character for him. Is it connected to his mental status? Or to a period of more clarity and realizing the condition he's in? And even if it's that - was I wrong to take him off the Paxil? I think I will need to call the nurse today (Friday) with questions. It's good that he's more alert. I think. But not if it means he's depressed.
People:
My girlfriend came by - first time in over 2 weeks. She waited until she had a major "boo boo" for me to feel sorry for. Guess I disappointed her. I'm not going to stick my face 4 or 5 inches away from hers just to see her busted lip; and no one seems to "get it" that I can't see face details at all. I know people by their size, shape, voice. (if someone walks up to the door, I have no clue who it is until they come in and speak, or I open it and am close enough to determine who it is).
DSS came as he always does on Thursday, though it was very late. He did the heparin injections, and sat and talked to DH awhile. For some reason, DH was fretting about his knives. He was convinced one of the kids had stolen his pocket knife. DSS had to go get the box of knives out of the closet and show him they were all there. Then DH insisted he leave the one pocket knife out. DSS put it on the dresser - pointed out to DH that he didn't have any pockets. I'm very uncomfortable with this whole situation. I'm afraid he'll try to get that dratted knife. He's always had a knife in his pocket; but with his mind the way it is, it scaares me. I'm afraid for him to get hold of it; and I'm also afraid he'll hurt himself in his determination to reach it by himself. And I have recently begun to see a disturbing trend towards mutiny if he doesn't get his way.
Emotions:
All over the place. This morning I'm weepy, and not sure why. I got to sleep "later" (5:00). He slept through the night, just one incident of the alarm; and we both got back to sleep after that. I don't know how to handle the changes I see. They're not so much physical. And there have not been so many incidents of total confusion or disorientation (and not sure how much of that is because we don't ask; and how much of the constant reenforcing "you are home" is getting through). But he seems to be getting worse about not realizing he can't stand on his own. It's very odd how much strength he has in his hands and arms; and yet try to stand him up and he crumbles. And yet - he's totally convinced he can just get up and walk where he wants to go. He gets annoyed - sometimes actually angry - at the railing being on the bed. He occasionally gets resentful of the pull-ups (and, like a toddler, is quick to point out when they're dry!).
The nurse has indicated to me (and her opinion seems to be backed up by the CNA) that she believes he will become bed-bound, sooner rather than later. And yet I'm seeing him wanting to be up more. Then he gets bored just sitting (and who can blame him for that!) - but I don't know what to do. And the up and down so many times a day is very quicly going to be more than I can handle.
I think it's probably not helping that it's just the two of us here all the time. I'm pretty much completely trapped here - only "allowed" out for a grocery/med refill run on Sunday afternoon; and to ride along (that starts this month) with a once a month trip to the dialysis clinic. People do occasionally come to visit. It's nice that so many hospice people come; but they are all over stretched as is, and can't just sit and visit. He enjoys it whenever someone comes and spends time with him (I can understand that - I would too; at least I would if it was someone who actually cared how I was doing and not just to show off her latest misadventure). I almost wonder if he really would be better off in a facility where he would have more contact with other people; but I very seriously doubt he would be happy that way, even with other people around. He really misses his days as a volunteer at the aquarium and Pea Island. It's too bad we now live so far from the outer banks that none of them can visit him.
Wednesday, October 2, 2013
Day 131
Wednesday October 2, 2013
I felt like adding an "interim" report. On a day to day basis, I'm just not seeing much change. Some days are worse than others, but no dramatic decline.
Last week the nurse did the 9 week re-evaluation. Clearly there was no question of maintaining him on hospice.
Today she came for her weekly visit, and I got some encouraging news. He can now have the CMA 5 days a week instead of just 3. I don't know that we actually "need" her that much (the nurse said she could just give him a quickie wash up and not a full bath every day). Apparently TPTB have decided that 5 days a week makes better sense than just 3. I'm totally fine with it. It's comforting to know someone will be here daily ... I feel less alone. No, that's not quite what I mean. But it's just knowing someone with an objective point of view will be here more often - Another thing that was mentioned was the possibility of having a volunteer come in on a "regular" basis (a few hours once a week) to help me. She was mainly referring to cleaning; but it occurs to me that a few hours one day each week, someone could help me with sorting so many boxes full of stuff that I can't read and tell what I need to keep or not. That would be so good! But I'm also putting less faith in that prospect. Seems we've been on the "search for a volunteer" list for 3 months and nothing has turned up. But I'm going to keep hoping - I know I was more tired this morning, and it probably showed. My joints are giving me more trouble, probably from lifting him so much. Lately he's been wanting to be up and down multiple tiems a day. That's good from the standpoint of his level of activity; but really hard on my back!
Anyway, my point is, I'm happy for getting to have the aide 5 days a week, and a renewed effort to find a volunteer for a bit of help for me.
The aide told me today I shouldn't be getting him up and down from the commode so much - just tell him that's why he has on disposable pull-ups. Easy for her to say - she doesn't know him like I do. I'm afraid he'd make himself sick trying to hold back. Maybe there will come a time. OK, probably, eventually. But he's not there yet, and I don't think I can deliberately humiliate him just to make things easier for me. Nope. Not gonna happen. :(
I felt like adding an "interim" report. On a day to day basis, I'm just not seeing much change. Some days are worse than others, but no dramatic decline.
Last week the nurse did the 9 week re-evaluation. Clearly there was no question of maintaining him on hospice.
Today she came for her weekly visit, and I got some encouraging news. He can now have the CMA 5 days a week instead of just 3. I don't know that we actually "need" her that much (the nurse said she could just give him a quickie wash up and not a full bath every day). Apparently TPTB have decided that 5 days a week makes better sense than just 3. I'm totally fine with it. It's comforting to know someone will be here daily ... I feel less alone. No, that's not quite what I mean. But it's just knowing someone with an objective point of view will be here more often - Another thing that was mentioned was the possibility of having a volunteer come in on a "regular" basis (a few hours once a week) to help me. She was mainly referring to cleaning; but it occurs to me that a few hours one day each week, someone could help me with sorting so many boxes full of stuff that I can't read and tell what I need to keep or not. That would be so good! But I'm also putting less faith in that prospect. Seems we've been on the "search for a volunteer" list for 3 months and nothing has turned up. But I'm going to keep hoping - I know I was more tired this morning, and it probably showed. My joints are giving me more trouble, probably from lifting him so much. Lately he's been wanting to be up and down multiple tiems a day. That's good from the standpoint of his level of activity; but really hard on my back!
Anyway, my point is, I'm happy for getting to have the aide 5 days a week, and a renewed effort to find a volunteer for a bit of help for me.
The aide told me today I shouldn't be getting him up and down from the commode so much - just tell him that's why he has on disposable pull-ups. Easy for her to say - she doesn't know him like I do. I'm afraid he'd make himself sick trying to hold back. Maybe there will come a time. OK, probably, eventually. But he's not there yet, and I don't think I can deliberately humiliate him just to make things easier for me. Nope. Not gonna happen. :(
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