(Saturday and)Sunday September 8, 2013
V/S: 0/7, B/P 176/102 (down to "normal" range by noon); HR 77
9/8: BP 192/87, HR 77
Physical:
He is weaker at times, but at random times he seems stronger. His breathing at night continues to sound ragged; but there's a lot of snoring. He has refused to use the BIPAP since he got on the oxygen.
When he got up - somewhere between 2:30 and 3:00 - he wanted to sit on the B/C first. He kept sitting doubled over (said no pain, don't know why sitting like that). He couldn't seem to sit up straight though, when trying to get him dressed and into the wheelchair. He kept bending over in the wheelchair too. Then getting him into his chair was way more difficult than usual. He just couldn't seem to straighten his legs at all.
Once in the chair, he did sit up for longer than usual, around 5 hours; but he was clearly confused a lot. Even DSS saw a lot of that going on.
He is again eating very little.
He woke me again at 4 AM, talking. I went in and asked who he was talking to, and he said "those people at the bank in New Bern". I told him to go back to sleep - which he did; but I couldn't as usual.
People:
There was no one here on Saturday. On Sunday TGF brought her boys over to do some jobs for me (theey did not do a very good job though), and she helped me with some visual issues. DSS came over later. He did the heparin injection; and they both helped make some changes in the bedroom to make it safer and to move the TV so he can see it better.
Emotions:
I got a letter in the mail that I thought concerned my vision and my driver's license. TGF confirmed it - I have until the end of September to get a doctor to complete a form stating I can drive, otherwise my license will be revoked. There is NO doctor who would comlete that form ... aside from the fact that I have no way of making an appointment and having someone come stay with DH at the same time and all within the next few weeks.
Since TGF got a bit irritated with me, commenting that *they* all work (obviously I never did and sit around doing nothing now), they can't be running all the way out here every day. I wasn't aware that's what I had been asking of them, but it sure will stop now. I'll just keep driving illegally, nothing else I can do.
Back in July I paid for them to get a trash sticker, with the understanding that DSS would grab our trash when he came out here and take it with his shop trash. Early this month, when mine and his stickers were not only expired but past the "grace" period, and they still hadn't gotten theirs, I went on and ordered my sticker online. TGF got their sticker between the time I ordered one and it came in the mail. But she didn't give it to DSS, so the day mine came he put it on the car and took a car full of trash. Now I have another load .. bags piled up in the hall, and outside. Did anyone bother to grab any of it? Of course not. So TGF most graciously (sarcasm) said she'd come by today (since she picks her boys up from school a mere 5 miles away) so I can take my trash and go to the local quick mart for milk and bread (did NOT offer to do it for me of course).
She said we should call J-Cats (county transport service). I will call, but I think DH's physical problems might be an issue. I do have the option of calling EMS for transport to get him to clinic. *IF* they're available, it's a mere $115 each day. And I guess I'll be forced to give up getting meds at the pharmacy that has been so good, and go back to either mail order, or get from the MUCH more expensive pharmacy where TGF works.
And just how is all this whining related to DH? Well, he can't be left alone. So if I need someone to drive me somewhere, it would mean needing TWO people. And it's hard enough just to get one.
OK, enough of complaining. I'll just have to do what I can; but I certainly won't be imposing on TGF (or DSS since she doesn't like for us to take him away from work) any more.
Besides being angry and frustrated, I just feel sad. I'm not sure who is this stranger in my home that I'm taking cre of. The man I married has gone away, and he's not coming back.
Monday, September 9, 2013
Saturday, September 7, 2013
Day 105
(Thursday and) Friday September 6, 2013
V/S: 09/05/13 B/P 152/78; HR 76; did not take on Friday due to too much activity for accuracy.
Physical:
DH's breathing continues to sound ragged at night, like he's struglling. I often have to check that he's still actually breathing the oxygen. ISince it's more often at night, it seems like it would help if the head of the bed was a bit elevated; but usually he doesn't like that. A time or two I've tried it anyway, but since he often manages to wiggle toward the foot of the bed, and at an angle, it doesn't make much difference anyway.
It remains strange to me how much upper body strength he has (especially his hands), and yet none at all in his legs. If he were lucid all the time I'd suspect he was "faking"; but that's not the case. I've still not heard about the patient lift, which kind of surprises me.
He spends more and more time in bed.. He also spends more and more time in a confused state. On Friday he became convinced *people* (not sure who) were trying to steal his stuff. He thought someone had taken the little leather jacket (had been Carl's as a baby) ... even when I showed it to him with the flashlight, he thought it was gone. At one point duringg the morning he got the gun cabinet open and took out a shotgun. That unnerved me a lot, even though I knew that NONE of the guns are loaded.. It wasn't shooting the gun that worried me, it was the handling of it - possibly knocking things over, breaking glass, etc. was an issue.
Laater I caught him trying to pull the over-the-bed table into the bed with him. When questioned, he said he was putting it into the car. I just told him "no, it stays here". I noticed the water bottle was gone, and he said he had thrown it out the car window. Fortunately, the lid was on. Wednesday he dumped a bottle of water (not a full one, but still) "out the window" (large wet spot on carpet!). I have a "sippy cup" I use for him for early morning and night time pill taking. Maybe I need another one for bedside instead of regular water bottles.
(Note: Saturday morning - when questioned, he said he was in church. I'm glad he finally got out of the bank parking lot.)
People:
On Thursday DSS came over in the late afternoon. He visited awhile (which is always good for DH, as he seems to pay more attention to DSS than anyone else). He also took a load of trash to the dump and got gas in the car for me, as well as did the heparin injections. Later, just as we were trying to eat dinner, the neighbor came over with 4 of her kids. There was a little bit of translation, but mostly they talked to each other in Spanish and seemed happy for us to just "enjoy" the antics of the 2 year old. For someone who had tried so hard to push food at us, it seemed very odd that she ignored that Jimmy's dinner was sitting there getting cold! She wanted to pray for Jimmy, as usual. There's nothing at all wrong with that; but I think she truly has no clue what's really going on with his health.
On Friday his sister came by for a visit (she called first!!). She and I had a nice visit, and she only spent a few minutes with DH (still in bed, and a bit "out of it"). Also my girlfriend came over, and did some yard stuff. After sister left, we visited some.
Emotions:
Friday was an especially stressful day. It was very late at night before I was able to talk to DSS's girlfriend to update her. She will let DSS know (seems to come easier from her) the latest. I told her I will need them to help me (when they come on Sunday) to rearrange the bedroom, so that only safe (and non-breakable) things are within his reach from the bed. We're also going to move TVs around so one in his room will have a better line of sight from the bed. I'll have to give up my slightly bigger one since the TV will be farther away from him; but with my limited vision, I mostly listen rather than watch, so putting his smaller one in my room won't matter.
I had a problem with internet Friday morning (actually started Thursday evening). After an hour and a half on the phone with HughesNet, I was left extremely upset and frustrated, and still no internet. I was finally told I'd have to wait until Monday morning for a tech to come realign the dish. About an hour later, all the lights came back on. Am I suspicious??? You betcha!!!!
I'm glad when I have company (not necessarily the neighbors, but always family), because it does seem to distract me from being weepy so much. But I'm also frustrated with myself at not getting things done around the house. I have to try harder to waste less time!
V/S: 09/05/13 B/P 152/78; HR 76; did not take on Friday due to too much activity for accuracy.
Physical:
DH's breathing continues to sound ragged at night, like he's struglling. I often have to check that he's still actually breathing the oxygen. ISince it's more often at night, it seems like it would help if the head of the bed was a bit elevated; but usually he doesn't like that. A time or two I've tried it anyway, but since he often manages to wiggle toward the foot of the bed, and at an angle, it doesn't make much difference anyway.
It remains strange to me how much upper body strength he has (especially his hands), and yet none at all in his legs. If he were lucid all the time I'd suspect he was "faking"; but that's not the case. I've still not heard about the patient lift, which kind of surprises me.
He spends more and more time in bed.. He also spends more and more time in a confused state. On Friday he became convinced *people* (not sure who) were trying to steal his stuff. He thought someone had taken the little leather jacket (had been Carl's as a baby) ... even when I showed it to him with the flashlight, he thought it was gone. At one point duringg the morning he got the gun cabinet open and took out a shotgun. That unnerved me a lot, even though I knew that NONE of the guns are loaded.. It wasn't shooting the gun that worried me, it was the handling of it - possibly knocking things over, breaking glass, etc. was an issue.
Laater I caught him trying to pull the over-the-bed table into the bed with him. When questioned, he said he was putting it into the car. I just told him "no, it stays here". I noticed the water bottle was gone, and he said he had thrown it out the car window. Fortunately, the lid was on. Wednesday he dumped a bottle of water (not a full one, but still) "out the window" (large wet spot on carpet!). I have a "sippy cup" I use for him for early morning and night time pill taking. Maybe I need another one for bedside instead of regular water bottles.
(Note: Saturday morning - when questioned, he said he was in church. I'm glad he finally got out of the bank parking lot.)
People:
On Thursday DSS came over in the late afternoon. He visited awhile (which is always good for DH, as he seems to pay more attention to DSS than anyone else). He also took a load of trash to the dump and got gas in the car for me, as well as did the heparin injections. Later, just as we were trying to eat dinner, the neighbor came over with 4 of her kids. There was a little bit of translation, but mostly they talked to each other in Spanish and seemed happy for us to just "enjoy" the antics of the 2 year old. For someone who had tried so hard to push food at us, it seemed very odd that she ignored that Jimmy's dinner was sitting there getting cold! She wanted to pray for Jimmy, as usual. There's nothing at all wrong with that; but I think she truly has no clue what's really going on with his health.
On Friday his sister came by for a visit (she called first!!). She and I had a nice visit, and she only spent a few minutes with DH (still in bed, and a bit "out of it"). Also my girlfriend came over, and did some yard stuff. After sister left, we visited some.
Emotions:
Friday was an especially stressful day. It was very late at night before I was able to talk to DSS's girlfriend to update her. She will let DSS know (seems to come easier from her) the latest. I told her I will need them to help me (when they come on Sunday) to rearrange the bedroom, so that only safe (and non-breakable) things are within his reach from the bed. We're also going to move TVs around so one in his room will have a better line of sight from the bed. I'll have to give up my slightly bigger one since the TV will be farther away from him; but with my limited vision, I mostly listen rather than watch, so putting his smaller one in my room won't matter.
I had a problem with internet Friday morning (actually started Thursday evening). After an hour and a half on the phone with HughesNet, I was left extremely upset and frustrated, and still no internet. I was finally told I'd have to wait until Monday morning for a tech to come realign the dish. About an hour later, all the lights came back on. Am I suspicious??? You betcha!!!!
I'm glad when I have company (not necessarily the neighbors, but always family), because it does seem to distract me from being weepy so much. But I'm also frustrated with myself at not getting things done around the house. I have to try harder to waste less time!
Thursday, September 5, 2013
Day 103
Wednesday, September 4, 2013
V/S: B/P 170/89; HR 75
Physical:
This was another stay-in-bed-dall-day kind of day. The aide came around 11:30ish. He told her he felt extra sleepy. Of course, he also told her he couldn't leave because the car wouldn't start. His mind has been "stuck" at the bank for awhile now. Anyway, she got him bathed and dressed and up, and I got him into his chair. He likes the lift chair a lot, and likes it with the hoot rest up (which he didn't especially like to do on the previous recliner; but I think maybe it was because it was too hard to get up and down). By only 2 hours up he was saying he wanted to lay back down, but he did wait until it had been 3 hours (and I rushed to get in the room and do some dusting and change the sheets).
Later in the afternoon/early evening he said he was ready to get up but wanted to sit on the commode first. After sitting for awhile, he called me. He said he thought he was ready to get up but then felt "woozy" and wanted to lay back down instead. He said for the rest of the evening he "felt bad", but couldn't put a name to anything in particular. He didn't want to get undressed (highly unusual), and refused to eat anything (even when I offered a pork chop!). I did turn the TV on for awhile, for his favorite show, but he mostly slept through it.
Since he got his weekly epogen shot at home, I now wonder if that makes him feel bad. Always before he's been at the clinic; and by the time he'd had to get back in the car, ride a bit while I ran errands, then get out of the car at home, he always wanted to lay down the rest of the day. I never connected feeling bad with the shot because he was so exhausted; but this time he wasn't, and yet, by evening was feeling bad.
(Note: this morning when I took the "early" pill he said he felt OK, which seems to me to confirm my suspicion that the shot makes him feel bad).
People:
The aide came and got him bathed. In the late afternoon the supply delivery came (I was kind of surprised it was the "regular" guy since it was on a holiday schedule. He always askes how DH is doing; and he knows the cats by name and speaks to them if I don't have them shut up in another room). After the supplies, a nurse from the clinic came out to give DH his epogen shot (as mentioned above). They're working on getting it so he doesn't have to go into the clinic so often. The regular nurse will eventually be giving him the shots, but she's sick right now. Since they had already changed his instructions to "out patient", and had already had the suppies sent here, someone from the clinic had to come out. It wasn't the regular clinic nurse (I get the feeling she doesn't like having to come out here. She's nice, but I do miss the nurse he used to have. She was friendlier, and didn't mind coming out here sometimes). Later in the evening our grandson called so he could talk to grandpa. I heard DH tell DGS he was waiting in the bank parking lot (he had told the aide earlier he couldn't leave because the car wouldn't start). I found out later from DSS that DH told DGS that I had taken the hospital bed to work with me that morning. When I questioned DH about that later, he said he'd been in the bed of course.
I talked with DSS - he calls almost every day.
Emotions:
I've mentioned feeling lonely. I miss family when they aren't here, but I know perfectly well they can't be but just so much. The thing no one really grasps yet is that most of the time DH has already "left" me. He's off in his own little world, and often seems either puzzled or frustrated that I'm not sharing that world (and more and more often thinks I'm his mother anyway). He's not in pain, and doesn't too often say he feels bad. I know when he struggles to breathe he's uncomfortable; but we've not yet had to turn up the oxygen level. When the nurses come his sats are usually in the 90s still (with the oxygen). I wonder if they drop at night since he so often sounds like he's struglling more, but no way to check that.
Anyway, I've started having trouble sleeping. Not because he wakes me up; but I don't sleep very soundly to start with. So mice in the kitchen wake me up. Or DH breathing particularly hard, or wheezing, or coughing, wakes me up. And sometimes I don't even know what. But I almost always have a very hard time getting back to sleep. Last night I was awake for hours ... I checked email, watched news on TV, pinned the hem in a tablecloth, ate a bowl of cereal. Nothing helped, it was well after 5 AM before I got back to sleep; so of course I'm tired, groggy, headachy. So I'm not sure what emotions are valid and what are just from sleepy. I feel sad and lonely a lot, but I think that's just something I have to go through on this journey with DH. As I've told the different hospice people, there's no instruction manual for dementia. And unless someone else were physically living here (been there, done that, don't especially want to do it again!!), there's no way for anyone else to really comprehend what it's like.
I think the only way to not feel sad, or any of the other emotions I'm going through, would be to have no feelings at all. If that were the case, I'd put DH in a facility and never look back. That's Not gonna happen.
V/S: B/P 170/89; HR 75
Physical:
This was another stay-in-bed-dall-day kind of day. The aide came around 11:30ish. He told her he felt extra sleepy. Of course, he also told her he couldn't leave because the car wouldn't start. His mind has been "stuck" at the bank for awhile now. Anyway, she got him bathed and dressed and up, and I got him into his chair. He likes the lift chair a lot, and likes it with the hoot rest up (which he didn't especially like to do on the previous recliner; but I think maybe it was because it was too hard to get up and down). By only 2 hours up he was saying he wanted to lay back down, but he did wait until it had been 3 hours (and I rushed to get in the room and do some dusting and change the sheets).
Later in the afternoon/early evening he said he was ready to get up but wanted to sit on the commode first. After sitting for awhile, he called me. He said he thought he was ready to get up but then felt "woozy" and wanted to lay back down instead. He said for the rest of the evening he "felt bad", but couldn't put a name to anything in particular. He didn't want to get undressed (highly unusual), and refused to eat anything (even when I offered a pork chop!). I did turn the TV on for awhile, for his favorite show, but he mostly slept through it.
Since he got his weekly epogen shot at home, I now wonder if that makes him feel bad. Always before he's been at the clinic; and by the time he'd had to get back in the car, ride a bit while I ran errands, then get out of the car at home, he always wanted to lay down the rest of the day. I never connected feeling bad with the shot because he was so exhausted; but this time he wasn't, and yet, by evening was feeling bad.
(Note: this morning when I took the "early" pill he said he felt OK, which seems to me to confirm my suspicion that the shot makes him feel bad).
People:
The aide came and got him bathed. In the late afternoon the supply delivery came (I was kind of surprised it was the "regular" guy since it was on a holiday schedule. He always askes how DH is doing; and he knows the cats by name and speaks to them if I don't have them shut up in another room). After the supplies, a nurse from the clinic came out to give DH his epogen shot (as mentioned above). They're working on getting it so he doesn't have to go into the clinic so often. The regular nurse will eventually be giving him the shots, but she's sick right now. Since they had already changed his instructions to "out patient", and had already had the suppies sent here, someone from the clinic had to come out. It wasn't the regular clinic nurse (I get the feeling she doesn't like having to come out here. She's nice, but I do miss the nurse he used to have. She was friendlier, and didn't mind coming out here sometimes). Later in the evening our grandson called so he could talk to grandpa. I heard DH tell DGS he was waiting in the bank parking lot (he had told the aide earlier he couldn't leave because the car wouldn't start). I found out later from DSS that DH told DGS that I had taken the hospital bed to work with me that morning. When I questioned DH about that later, he said he'd been in the bed of course.
I talked with DSS - he calls almost every day.
Emotions:
I've mentioned feeling lonely. I miss family when they aren't here, but I know perfectly well they can't be but just so much. The thing no one really grasps yet is that most of the time DH has already "left" me. He's off in his own little world, and often seems either puzzled or frustrated that I'm not sharing that world (and more and more often thinks I'm his mother anyway). He's not in pain, and doesn't too often say he feels bad. I know when he struggles to breathe he's uncomfortable; but we've not yet had to turn up the oxygen level. When the nurses come his sats are usually in the 90s still (with the oxygen). I wonder if they drop at night since he so often sounds like he's struglling more, but no way to check that.
Anyway, I've started having trouble sleeping. Not because he wakes me up; but I don't sleep very soundly to start with. So mice in the kitchen wake me up. Or DH breathing particularly hard, or wheezing, or coughing, wakes me up. And sometimes I don't even know what. But I almost always have a very hard time getting back to sleep. Last night I was awake for hours ... I checked email, watched news on TV, pinned the hem in a tablecloth, ate a bowl of cereal. Nothing helped, it was well after 5 AM before I got back to sleep; so of course I'm tired, groggy, headachy. So I'm not sure what emotions are valid and what are just from sleepy. I feel sad and lonely a lot, but I think that's just something I have to go through on this journey with DH. As I've told the different hospice people, there's no instruction manual for dementia. And unless someone else were physically living here (been there, done that, don't especially want to do it again!!), there's no way for anyone else to really comprehend what it's like.
I think the only way to not feel sad, or any of the other emotions I'm going through, would be to have no feelings at all. If that were the case, I'd put DH in a facility and never look back. That's Not gonna happen.
Wednesday, September 4, 2013
Day 102
(Monday and) Tuesday, September 3, 2013
I am going to start adding vital signs. I used to take copies of the spreadsheets I keep to his doctor appointments, but now he has none. I also used to take them to the PD nurse; but the new one doesn't seem at all interested, so I quit. Now when the nurse comes I can show her the last few days sometimes, but she doesn't need to see my spreadsheet. I see a gradual trend that his B.P is getting higher. No one else sees it; and when they come, once a week, and take it - it's never quite as high as in the morning. I wonder why that is. Is my "cuff" faulty? I long since quit taking his temperature, because I cannot read the thermometer. No one seems concerned about that either - even though at the beginning they emphasized keeping track to ward off infection.
At (approximately) 10 AM 09/03/13, B/P 187/93, HR 78.
Physical:
I'm not seeing any particular change. In fact, there have been fewer nights with the loud wheezing. Perhaps he's keeping the oxygen on better. The confusion/disorientation is more of the time, but not extreme. I rarely "go along", and he seems for the most part to accept what I tell him.
I got him up around noon, and he sat in the lift chair a couple of hours or so - about 2 1/2 I think. Then he wanted to lay down. He never got back up. Some days he does that. He was more alert later in the evening, and I turned on his TV. Plus he ate a pretty decent supper.
One problem that's getting to be worse is being *wet*. Sometimes he can't tell. He has very little urinary output, due to the renal failure. But some days it's more than others. The most recent issue is that he thinks he has to pee, and knows he can't get to the commode in time, so reaches for the urinal. Only, he can't seem to manage that - he misses. So the disposable pull-ups do no good in that case. He got himself totally soaked, and I had to dry him off before putting dry pull-ups on him. I put a second (smaller) pad under him rather than try to get the big one off first (so today, Wednesday, I'll have to wash both). Then later, when I was trying to get the lights out, he kept fidgeting. He said he was trying to tell what was wet .. finally sadi the sheet was wet! So I had to partially unmake the bed, put a clean sheet on, remake it for him to sleep.
People:
I never know when the nurse is coming. It turns out she's still sick and not allowed back to work this week. So a different substitute came, a nice (cute) young girl. The social worker also came; and later, the chaplain showed up as well. The nurse checked him (this was not long after he had laid down, but he was snoring - and went right back to sleep after she left the room!). His B/P wasn't quite as high; and again, she didn't think the high B/P was something to be concerned about. He also had a bit of temperature (99.?, and "normal" for him is on the low side). But since he said he didn't feel bad, she wasn't overly concerned. I'll have to watch closely to make sure he's not getting another infection.
I enjoyed visiting with them. They're the only ones who come in and ask how *I* am, what do *I* need. They comfort and reassure me, and at times I really do need that. The social worker is going to check into getting us a patient lift. We should be able to get one, plus if they send it they'll send someone to train me on using it properly. Usually (so far) any request like that has happened very quickly.
Their visit didn't last very long. The nurse had to get on to other patients (and it was getting pretty late in the afternoon); the social worker had to leave to show the nurse the way; and the chaplain had to leave because he had them both blocked in.
In the evening our grandson (14) called. The cordless phone died, as usual (I believe it's time to replace. No idea how old it is, it was my parent's phone) so I couldn't take the phone to DH to talk to him. There's an outlet in the bedroom that doesn't work, and I see no reason to have a working phone in there to disturb him!
Emotions:
What a roller coaster. I always get weepy talking to the chaplain; and after they left, I couldn't seem to stop. No particular reason I could name; but after they walked out the door, I just felt so very alone. I guess that's just something I need to learn to live with.
Monday, September 2, 2013
Day 100
Sunday September 1 2013
It's hard to believe it's been 100 days since I started this record. Sometimes I ask myself ... since everything happened so fast ... would DH not be in the condition he's in if we had not started the whole hospice process? Or would he be the same, only I'd be more alone, more stressed, and totally bewildered?
Today (Sunday) instead of the usual "family" dinner, we went out. DSS and his girlfriend had a rare chance to go out without any kids aong, so decided we'd all go to a restaurant. Once before I turned down the chance to go out - I thought it might be too hard on DH. But, sDSS seemed to really like the idea of taking his dad out, so we tried it.
It was a mixed belessing to be sure. DSS now has a much clearer picture of the struggle I go through every time I have to take DH somewhere. It was hard with his strength and TGF and I to back up .. and I most often have to do it alone.
It was a struggle for DH as well. I believe he very much enjoyed his meal - he ate much better than normal (although he has been doing a little better recently). But he was clearly tired; he was slumped over in his wheelchair, and it took him way longer to eat a small amount than the ret of us took. I cut his meat up for him, but he continued to struggle with a knife anyway.
When we got home, he was SO ready to go to bed. I thought he'd sleep better all night; and maybe he would have if not for a strong (loud!) thunderstorm around 3 AM that lasted around an hour and a half. Since it woke me up, I went in to check on him - he was confused again; but I think he finally went back to sleep.
I don't know if this is something worth trying again or not; or at least, not often. He did enjoy the meal. But the process of getting him somewhere is exhausting for him and for whoever is having to physically help him. I'm not sure it's possible for him to get any weaker than he already is; but if he does, I really don't know how I'll be able to handle it.
A facility is clearly not an option. I may not do the best job. But a nurse working 12 hour shifts with multiple patients to deal with, plus all their paperwork, couldn't necessarily do a better one. And it's near impossible to find a facility (the doctors tried - I didn't!) that will take him on with his multiple health issues, medicines, and the dialysis. At best, they would forcefully take him (by stretcher in transport van) to hemodialysis instead of continuing peritoneal. I believe he would be not only confused and disoriented, he'd be depressed and miserable.
Nope. Not gonna happen.
So, we ust carry on as best we can, and wait and see what the next 100 days holds.
It's hard to believe it's been 100 days since I started this record. Sometimes I ask myself ... since everything happened so fast ... would DH not be in the condition he's in if we had not started the whole hospice process? Or would he be the same, only I'd be more alone, more stressed, and totally bewildered?
Today (Sunday) instead of the usual "family" dinner, we went out. DSS and his girlfriend had a rare chance to go out without any kids aong, so decided we'd all go to a restaurant. Once before I turned down the chance to go out - I thought it might be too hard on DH. But, sDSS seemed to really like the idea of taking his dad out, so we tried it.
It was a mixed belessing to be sure. DSS now has a much clearer picture of the struggle I go through every time I have to take DH somewhere. It was hard with his strength and TGF and I to back up .. and I most often have to do it alone.
It was a struggle for DH as well. I believe he very much enjoyed his meal - he ate much better than normal (although he has been doing a little better recently). But he was clearly tired; he was slumped over in his wheelchair, and it took him way longer to eat a small amount than the ret of us took. I cut his meat up for him, but he continued to struggle with a knife anyway.
When we got home, he was SO ready to go to bed. I thought he'd sleep better all night; and maybe he would have if not for a strong (loud!) thunderstorm around 3 AM that lasted around an hour and a half. Since it woke me up, I went in to check on him - he was confused again; but I think he finally went back to sleep.
I don't know if this is something worth trying again or not; or at least, not often. He did enjoy the meal. But the process of getting him somewhere is exhausting for him and for whoever is having to physically help him. I'm not sure it's possible for him to get any weaker than he already is; but if he does, I really don't know how I'll be able to handle it.
A facility is clearly not an option. I may not do the best job. But a nurse working 12 hour shifts with multiple patients to deal with, plus all their paperwork, couldn't necessarily do a better one. And it's near impossible to find a facility (the doctors tried - I didn't!) that will take him on with his multiple health issues, medicines, and the dialysis. At best, they would forcefully take him (by stretcher in transport van) to hemodialysis instead of continuing peritoneal. I believe he would be not only confused and disoriented, he'd be depressed and miserable.
Nope. Not gonna happen.
So, we ust carry on as best we can, and wait and see what the next 100 days holds.
Sunday, September 1, 2013
Day 99
(Friday and) Saturday August 31, 2013
Physical:
As far as I can tell, DH seems to be on a bit of a plateau lately. His breathing at night is very rough, and I often have to get up to see if he still has his oxygen canula in place. He has not had any "extreme" mind trips, but has on-going mild confusion. The biggest thing lately is the "wet pants" ... even though he is mostly incontinent, he at random times becomes aware that his pants are wet and wants them changed. Several times during the night he has called me and asked me to change his diaper (and honestly, I don't know if he's being sarcastic or not!)
He has a sore knee and a skinned place (and now showing bruising) from his fall Thursday, but isn't showing any other signs from that.
He now has a comfortable recliner he can sit in (I tried it out, it does seem to be comfy). It is much easier to get him up and down; but he still doesn't want to sit up any longer at a time.
Several nights he's wanted to go to bed but watch TV; and then call me to turn off the TV (he still can't remember how to use the remote; plus he keeps dropping it). One night he insisted I not raise the bed because it made it harder to watch TV - even though the TV was off.
People:
The aide was here Friday, but came very early. That put his up and down schedule off a bit - but since he hates being on any schedule, it didn't matter that much.
DS and DDIL came Saturday, but didn't stay long; they brought the chair, but had too many other things to do to be able to stay and visit. DSS called, as alwlays, to check on him.
Emotions:
Depressed that no one ever asks how I am. The nurses and the aide understand and sympathise, and try to encourage me. It would be nice if friends or family did. But since they don't really understand, they can't sympathize. So one day a week I get to tell someone my concerns, my fears, my sadness. The rest of the time I just write it down here - because even though no one reads this blog, it helps to try to verbalize my feelings. Some.
Physical:
As far as I can tell, DH seems to be on a bit of a plateau lately. His breathing at night is very rough, and I often have to get up to see if he still has his oxygen canula in place. He has not had any "extreme" mind trips, but has on-going mild confusion. The biggest thing lately is the "wet pants" ... even though he is mostly incontinent, he at random times becomes aware that his pants are wet and wants them changed. Several times during the night he has called me and asked me to change his diaper (and honestly, I don't know if he's being sarcastic or not!)
He has a sore knee and a skinned place (and now showing bruising) from his fall Thursday, but isn't showing any other signs from that.
He now has a comfortable recliner he can sit in (I tried it out, it does seem to be comfy). It is much easier to get him up and down; but he still doesn't want to sit up any longer at a time.
Several nights he's wanted to go to bed but watch TV; and then call me to turn off the TV (he still can't remember how to use the remote; plus he keeps dropping it). One night he insisted I not raise the bed because it made it harder to watch TV - even though the TV was off.
People:
The aide was here Friday, but came very early. That put his up and down schedule off a bit - but since he hates being on any schedule, it didn't matter that much.
DS and DDIL came Saturday, but didn't stay long; they brought the chair, but had too many other things to do to be able to stay and visit. DSS called, as alwlays, to check on him.
Emotions:
Depressed that no one ever asks how I am. The nurses and the aide understand and sympathise, and try to encourage me. It would be nice if friends or family did. But since they don't really understand, they can't sympathize. So one day a week I get to tell someone my concerns, my fears, my sadness. The rest of the time I just write it down here - because even though no one reads this blog, it helps to try to verbalize my feelings. Some.
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