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.
Subscribe to:
Posts (Atom)