hursday August 282013
Most of this day was OK. I didn't get DH up until about noon (he'd have laid in bed all day if I let him). I thought the nurse would come but had no idea when.
Early afternoon, the nurse who came Monday called. The regular nurse was sick and she would come instead, later in the afternoon.
That was OK, it just meant DH was more tired when she got there. He'd been saying he was going to go lay down on the couch, and I'd had to get a bit more firm with him in telling him he could Not do that. I think he was annoyed with me.
As soon as the nurse was done (and his vitals were all pretty good), he said he was going back to the bedroom. That meant she (and DSS, who was here by then, although he sort of has seen this) saw how he is about thinking he can do things on his own that he really can't do. I told her, I'm so terrified he's going to get hurt, because he keeps insisting on trying to do the things his mind tells him he can do.
She was actually pretty comforting. She pointed out to me that often people who have relatives in facilities get upset when those people have falls ... and that even professionals can't always prevent it. She couldn't have known (but may have guessed) that I frequently wonder if I'm wrong to insist on keeping him at home. I feel better about the decision after what she said. But her point was that there's only the one of me here with him. The kids may try to help to a degree; and *think* they actually are. But in the end, they go home. They're not the ones trying to talk to someone at 4:00 in the morning who isn't making any sense (and I'm the one losing sleep), or cleaning up after him, or any of the day to day stuff.
I left the house for about 20 minutes to take trash to the dump while DSS was here. In that short time, DH said he needed to use the commode. DSS, not knowing any better, left the room when DH told him he could manage on his own. And - DH fell. I didn't see it, so didn't call it in. DSS got him up and sitting on the bed, with the intention of getting me to go help since he really didn't know what was the "correct" procedure. When I went back to the bedroom, DH had gotten himself from the bed to the commode (doing the same thing that he had fallen trying to do moments earlier). He seemed to think that we were just being stupid, because he was obviously capable of doing what he wanted to do.
Once he was done - which included a nonsense conversation about whether or not he would put underwear back on - I got him on the bed. He didn't get up again, but did watch TV until 11:00.
But, he liked the makeshift supper I fixed him, so ate pretty good.
I hope I'm not "inviting trouble", but I need a place to say what's on my mind. And no one reads this anyway. Everytime a nurse comes and checks him out, and says he's doing well ... that his lungs sound OK ... I'm terrified they'll say he no longer qualifies for hospice because he's not "declining". (I've been told that even reaching a plateau where they're stable can cause a patient to be disqualified. Medicare really doesn't want to pay for anything more than they can help). And if that were to happen ... I'd be really alone. No more nurses or aides; clinic every week as well as regular doctor visits; payments on the bed and the oxygen and the wheelchair, plus doctor visits including trips to Durke. But the alone part - with his increasing dementia - is what scares me the most. The only actual physical help is when the aide comes and gives him a bath. I could do that; and I do 99% of all the lifting and such now.
But the concept of having no "back up", no one I could call on if neeeded, would be very depressing as well as scary.
Friday, August 30, 2013
Thursday, August 29, 2013
Day 96
(Tuesday and) Wednesday August 28 2013
Physical:
Tuesday was a relatively quiet day, no major "mishaps". He did stay in bed until after 1:00 - apparently having a bit of depression since he said he saw no reason to get up. I did finally insist, and he seemed OK, just a small bit of the usual confusion.
Wednesday was clinic, and that's always a very hard day. I sat in the room with him instead of the lobby, and he had a hard time sitting still long enough for the IV the nurse was determined to give him. Getting him in the car at clinic was really hard ... it felt like trying to move a 200 pound sack of wet cement. He didn't seem to be able to move arms, legs, anything. It almost felt like he was fighting us - would grab hold of the door or something and refuse to let go.
Surprisngly, I did get him out again at home without him landing on the ground.
He slept until around 6:30, then deided it was time to get up; but by 8:00 he was ready to get back in bed. I left the TV on a program he was watching - but could hear him snoring!
He didn't sleep well though (or at least thinks he didn't, and sometimes it's hard to tell the difference). Around 2 AM he was thrashing around, so I went to check .. found he had thrown off all the covers and pulled his pull-ups off because they were wet. So, I put clean ones on him and got him settled. He was clearly disoriented again though. He thought I was mama again. He was "concerned" about having 2 houses. Even after I tried to explain to him where he was - he asked "isn't this Glascock street?".
People:
No one came here, (except my friend on Tuesday afternoon). He had to see the doctor at the clinic, but at least it was the nice one (one of them is very abrupt and not especially friendly). And of course, there was the nurse, and the social worker who always checks on us and chats with me if she has time.
Emotions:
I alternate between crying spells and too tired to feel much of anything! I feel alone because my main contact with friends and family is on the computer ... and I get very few emails, calls, anything. DSS does call nearly every day, and it's nice that he actually talks to me ... about his shop, about things at home, about his boys, as well as talking about DH. . I know I'm being a bit perverse, but I do not want the neighbor coming over and thinking she's keeping me from being alone. No matter how nice or well-meaning she is, I don't know her; she's NOT family; and I can't even talk to her without a child translating.Occasional visits are fine, as long as she doesn't get pushy about "helping".
Physical:
Tuesday was a relatively quiet day, no major "mishaps". He did stay in bed until after 1:00 - apparently having a bit of depression since he said he saw no reason to get up. I did finally insist, and he seemed OK, just a small bit of the usual confusion.
Wednesday was clinic, and that's always a very hard day. I sat in the room with him instead of the lobby, and he had a hard time sitting still long enough for the IV the nurse was determined to give him. Getting him in the car at clinic was really hard ... it felt like trying to move a 200 pound sack of wet cement. He didn't seem to be able to move arms, legs, anything. It almost felt like he was fighting us - would grab hold of the door or something and refuse to let go.
Surprisngly, I did get him out again at home without him landing on the ground.
He slept until around 6:30, then deided it was time to get up; but by 8:00 he was ready to get back in bed. I left the TV on a program he was watching - but could hear him snoring!
He didn't sleep well though (or at least thinks he didn't, and sometimes it's hard to tell the difference). Around 2 AM he was thrashing around, so I went to check .. found he had thrown off all the covers and pulled his pull-ups off because they were wet. So, I put clean ones on him and got him settled. He was clearly disoriented again though. He thought I was mama again. He was "concerned" about having 2 houses. Even after I tried to explain to him where he was - he asked "isn't this Glascock street?".
People:
No one came here, (except my friend on Tuesday afternoon). He had to see the doctor at the clinic, but at least it was the nice one (one of them is very abrupt and not especially friendly). And of course, there was the nurse, and the social worker who always checks on us and chats with me if she has time.
Emotions:
I alternate between crying spells and too tired to feel much of anything! I feel alone because my main contact with friends and family is on the computer ... and I get very few emails, calls, anything. DSS does call nearly every day, and it's nice that he actually talks to me ... about his shop, about things at home, about his boys, as well as talking about DH. . I know I'm being a bit perverse, but I do not want the neighbor coming over and thinking she's keeping me from being alone. No matter how nice or well-meaning she is, I don't know her; she's NOT family; and I can't even talk to her without a child translating.Occasional visits are fine, as long as she doesn't get pushy about "helping".
Day 94
Monday, August 26, 2013
Physical:
He had another fall. He rarely actually falls so much as just sort of "melts". The aide was trying to get him to the wheelchair. She's very strong, and hadn't had a problem before - I think this rattled her a bit. He lurched the wrong way, and she couldn't hold him - and he "slithered" to the floor. I had to call for help, and she had to make a report.
By the time he was upright and in his wheelchair, it was close to 2:00. He only managed to stay there for about 2 hours (and was whining after 1 hour that he wanted to lay down). Later, after a nurse checked him out, I let him "nap". I believe he was in and out of confusion. In the evening I got him up for about an hour so I could finish making his bed (had had to wash everything, even the blanket) and set up the dialysis.
There were no alarms during the night, but he sounded like he was struggling to breathe all night.
People:
The aide came of course. Then DSS to help A nurse (not the "regular" one) came to make sure there was no damage from his fall. DSS came back later (poor guy, we totally ruined his work day), and shortly after Carl got here, TGF and her boys got here. I rode with TGF and the boys while DSS stayed here with DH. (took trash to the dump, then went to town for a few errands).
Emoions:
Too exhausted to think; but I wasn't
Monday, August 26, 2013
Day 93
Sunday, August 25, 2013
Physical:
This was not a good day mentally, though otherwise it wasn't too bad. I got DH up around noon, and he was fairly lucid as to where he was and all. He sat up for about 3 hours, then went back to lay down.
From there it was downhill. I kept checking on him, and it didn't seem like he went to sleep but perhaps he drifted in and out of napping.
By late afternoon, when checking on him, he was saying things like "call Betty and tell her where I am". In the past I've been able to tell him who I am, where he is, and he "comes back". This time it was harder. When DSS and crew got here, DSS went on back to the bedroom. DH never did get up other than after they all left (several hours later), he wanted to sit on the commode.
DSS kept tryiing to tell his dad that he was at home, but DH didn't quite believe him. He did eventually "come around" for the most part.
People:
DSS, TGF, and her 3 boys came around 6:00. They ate, the boys had showers, and they all let around 8:00.
Emotions:
Just deep down sadness. He's slipping away - or rather his mind is, much faster than his body is. Knowing it's going to happen does NOT prepare a person for the reality, especially since there's no telling in advance what direction it will take.
Physical:
This was not a good day mentally, though otherwise it wasn't too bad. I got DH up around noon, and he was fairly lucid as to where he was and all. He sat up for about 3 hours, then went back to lay down.
From there it was downhill. I kept checking on him, and it didn't seem like he went to sleep but perhaps he drifted in and out of napping.
By late afternoon, when checking on him, he was saying things like "call Betty and tell her where I am". In the past I've been able to tell him who I am, where he is, and he "comes back". This time it was harder. When DSS and crew got here, DSS went on back to the bedroom. DH never did get up other than after they all left (several hours later), he wanted to sit on the commode.
DSS kept tryiing to tell his dad that he was at home, but DH didn't quite believe him. He did eventually "come around" for the most part.
People:
DSS, TGF, and her 3 boys came around 6:00. They ate, the boys had showers, and they all let around 8:00.
Emotions:
Just deep down sadness. He's slipping away - or rather his mind is, much faster than his body is. Knowing it's going to happen does NOT prepare a person for the reality, especially since there's no telling in advance what direction it will take.
Sunday, August 25, 2013
Day 92
(Friday and) Saturday August 24, 2013
Physical:
There are only minor changes I have noticed, unless I go back a few weeks. I just don't notice as much on a day by day basis.
His mind is going faster than anything else. It's most noticable at night of course ("Sundowners"), or any time he's just waking up. There's also the fact that he no longer seems to be able to *know* that he can't get up and walk around. So far he has not managed to fall and get hurt, but the possibility is always there.
His appetite is variable. Some days he will barely eat anything, others he does pretty good. It doesn't seem to be related to what he's eating (sometimes even things I know he likes doesn't matter if he doesn't feel like eating). That effects his whole system, to the point of the nurses starting to get very concerned. After yesterday they will be happier I think, and "extreme measures" averted for now.
I've also noticed he sleeps more. Even just a few weeks ago we discussed (with nurse) the possibility of something to help him sleep. He was napping so much that he would lay awake at night (which is certainly not good if you're confused!). But I've begun to notice he seems to sleep through the night more often, and well into the day if allowed. And even then, if he's up longer than he wants to be, he'll doze off (even in the car, which is something he NEVER used to do!)
People:
My brother and sister-in-law came Friday for the afternoon, and brought pizza. That was a lovely visit, and I believe DH enjoyed it too (even though he did nod off at one point - possibly related to being more relaxed since we let him sit on the couch awhile).
The neighbors came over that evening, but didn't stay long. I have a feeling she realizes I don't really enjoy her visits ... she doesn't have much to say. She is hoping to come at a time when DH is up. I'm not comfortable with her obsession with him (I know, she's looking at him as a father figure, and wants to pray for him; but she seems to be convinced she can command God to "cure" him. And she clearly thinks she could take better care of him than I am if she could force me to let her).
No one came on Saturday, but I did talk to my brother on the phone.
Emotions:
I'm so up and down it's exhausting. One day I can manage to stay busy and "coast along" without feeling much. At times I'm extremely frustrated because I never know what direction the dementia will take, and how to handle it. And there are days I just can't do anything but sit and cry.
It's also a bit frustrating that for all the people that "say" they want to "help", I still feel very alone. And trash is piling up something awful again. I suspect that maybe 90% of the time people who offer to "help" have no clue what that really means, and don't expect me to call on them anyway. On the rare occasions I have, it turns out the only one who does anything is that DSS comes when DH is on the floor again and I can't get him up alone.
I am adamantly against putting DH in any sort of facility. And it terrifies me to know that if his mind (and my eyes) continue to deteriorate faster than his lungs, that decision may be taken away from me (and my home as well).
Physical:
There are only minor changes I have noticed, unless I go back a few weeks. I just don't notice as much on a day by day basis.
His mind is going faster than anything else. It's most noticable at night of course ("Sundowners"), or any time he's just waking up. There's also the fact that he no longer seems to be able to *know* that he can't get up and walk around. So far he has not managed to fall and get hurt, but the possibility is always there.
His appetite is variable. Some days he will barely eat anything, others he does pretty good. It doesn't seem to be related to what he's eating (sometimes even things I know he likes doesn't matter if he doesn't feel like eating). That effects his whole system, to the point of the nurses starting to get very concerned. After yesterday they will be happier I think, and "extreme measures" averted for now.
I've also noticed he sleeps more. Even just a few weeks ago we discussed (with nurse) the possibility of something to help him sleep. He was napping so much that he would lay awake at night (which is certainly not good if you're confused!). But I've begun to notice he seems to sleep through the night more often, and well into the day if allowed. And even then, if he's up longer than he wants to be, he'll doze off (even in the car, which is something he NEVER used to do!)
People:
My brother and sister-in-law came Friday for the afternoon, and brought pizza. That was a lovely visit, and I believe DH enjoyed it too (even though he did nod off at one point - possibly related to being more relaxed since we let him sit on the couch awhile).
The neighbors came over that evening, but didn't stay long. I have a feeling she realizes I don't really enjoy her visits ... she doesn't have much to say. She is hoping to come at a time when DH is up. I'm not comfortable with her obsession with him (I know, she's looking at him as a father figure, and wants to pray for him; but she seems to be convinced she can command God to "cure" him. And she clearly thinks she could take better care of him than I am if she could force me to let her).
No one came on Saturday, but I did talk to my brother on the phone.
Emotions:
I'm so up and down it's exhausting. One day I can manage to stay busy and "coast along" without feeling much. At times I'm extremely frustrated because I never know what direction the dementia will take, and how to handle it. And there are days I just can't do anything but sit and cry.
It's also a bit frustrating that for all the people that "say" they want to "help", I still feel very alone. And trash is piling up something awful again. I suspect that maybe 90% of the time people who offer to "help" have no clue what that really means, and don't expect me to call on them anyway. On the rare occasions I have, it turns out the only one who does anything is that DSS comes when DH is on the floor again and I can't get him up alone.
I am adamantly against putting DH in any sort of facility. And it terrifies me to know that if his mind (and my eyes) continue to deteriorate faster than his lungs, that decision may be taken away from me (and my home as well).
Friday, August 23, 2013
Day 90
(Wednesday and)Thursday August 22, 2013
Physica:
In some ways, there almost seemed to be improvement. A touch more "alertness", maybe a tiny bit more energy. Or maybe I was only fooling myself.
Clinic day is always hard though. He made the statement earlier this week that he hated going to clinic. He couldn't tell me why - the stress of the physical act of going? the fact that the only reason he has to go is because they so dearly love to jam needles into him? the exhaustion the whole day cuases? some combination of all of that?
This was, once again, a day I couldn't get him in and out. It was only a small struggle to get him in this time. I had (minimal) help getting him out (even though I've been told the staff is not supposed to assist patients outside of the building).But home again was the same problem as always: he just can't get his legs straight under him. So when I try to get him Up, he just slides sideways. If he can't get upright, I just can't get him into the wheelchair. So, once again, he barely got onto the edge of the seat. We tried to pull him into the house as we had to do once before; but this time he just slid right off the seat as soon as we got to the ramp. It was hot, and starting to sprinkle, so I just dragged him by his arms up the ramp. Then I stopped long enough to get milk and meat into the house, and called DSS. I did finally drag him all the way into the house; I got his oxygen going, but he couldn't (or wouldn't) keep the canula on.
When DSS got there we got him into the wheelchair and then on his bed. He said he didn't feel good, and it was because of that whole "ordeal". But he had told the nurse at clinic he didn't feel good (hadn't said that to me before). She implied it was MY fault, because his oxygen tank was running low. I guess there's some logic in there somewhere.
He did get up around 6:30 or so, and ate some dinner. He went back to bed by 8:30. The alarm went off several times, but because he got the tubing wrapped around his arm, or pinched under him.
People:
Only the nurses at clinic, and DSS briefly.
Emotions:
Frustrated, and too tired. For awhile during the evening I felt bad too, over tired from dragging him (plus getting him up and down later) and then had to set up dialysis.
Physica:
In some ways, there almost seemed to be improvement. A touch more "alertness", maybe a tiny bit more energy. Or maybe I was only fooling myself.
Clinic day is always hard though. He made the statement earlier this week that he hated going to clinic. He couldn't tell me why - the stress of the physical act of going? the fact that the only reason he has to go is because they so dearly love to jam needles into him? the exhaustion the whole day cuases? some combination of all of that?
This was, once again, a day I couldn't get him in and out. It was only a small struggle to get him in this time. I had (minimal) help getting him out (even though I've been told the staff is not supposed to assist patients outside of the building).But home again was the same problem as always: he just can't get his legs straight under him. So when I try to get him Up, he just slides sideways. If he can't get upright, I just can't get him into the wheelchair. So, once again, he barely got onto the edge of the seat. We tried to pull him into the house as we had to do once before; but this time he just slid right off the seat as soon as we got to the ramp. It was hot, and starting to sprinkle, so I just dragged him by his arms up the ramp. Then I stopped long enough to get milk and meat into the house, and called DSS. I did finally drag him all the way into the house; I got his oxygen going, but he couldn't (or wouldn't) keep the canula on.
When DSS got there we got him into the wheelchair and then on his bed. He said he didn't feel good, and it was because of that whole "ordeal". But he had told the nurse at clinic he didn't feel good (hadn't said that to me before). She implied it was MY fault, because his oxygen tank was running low. I guess there's some logic in there somewhere.
He did get up around 6:30 or so, and ate some dinner. He went back to bed by 8:30. The alarm went off several times, but because he got the tubing wrapped around his arm, or pinched under him.
People:
Only the nurses at clinic, and DSS briefly.
Emotions:
Frustrated, and too tired. For awhile during the evening I felt bad too, over tired from dragging him (plus getting him up and down later) and then had to set up dialysis.
Wednesday, August 21, 2013
Day 88
(Saturday through) Tuesday August 20, 2013
Physical:
As near as I can tell, he hasn't changed much; but then, he has practically no real "activity" so it's harad for me to judge. His breathing seems about the same, lots of coughing and wheezing, even with the oxygen. His sat actually went up to 96%; but that might have been the first time it was tested at complete rest when he'd had the oxygen on all night.
His mental status is deteriorating. He almost always now *thinks* he can do things, like get up and walk. I can't watch hiim 24/7, and there's no realistic way to physically restrain him. It's a matter of listening, of constant vigilance, frequent checking. He may eventually be completely bed-ridden. (well, no, technically he never will, because the dialysis center MUST see him that once a month even if everything else works out. Hospice doesn't "recognize" the kidney disease as long as he's on dialysis. And Medicare doesn't "recognize" hospice in connection with the kidney disease).
I keep doing as much as I can to keep him up at least some of the day.
People:
The neighbors quit coming over. Last week, and over the weekend, either we had someone here a lot or it was raining (or both). Butby Tuesday it cleared up; all visotrs (aide and insurance man) came in the morning; and still they didn't come. I guess I hurt her feelings, or made her mad. Either way, I'm sorry they don't come over at all. But if it's either that or be smothered, then they can stay away. Carl came in the evening to do the heparin injection, get his birthday card, visit a bit.
Emotional:
Lately I'm too tired to be depressed. I stay weepy a lot, but that's a combination of my eyes giving me so much trouble and exhaustion (frequent alarms during the night lately, though I *think* I know something I can do that will solve that problem), added to the constant sadness.
My eyes aren't going to get better. The sadness isn't going to go away. I better find a cure for the alarms so I can at least get sleep at night!
Physical:
As near as I can tell, he hasn't changed much; but then, he has practically no real "activity" so it's harad for me to judge. His breathing seems about the same, lots of coughing and wheezing, even with the oxygen. His sat actually went up to 96%; but that might have been the first time it was tested at complete rest when he'd had the oxygen on all night.
His mental status is deteriorating. He almost always now *thinks* he can do things, like get up and walk. I can't watch hiim 24/7, and there's no realistic way to physically restrain him. It's a matter of listening, of constant vigilance, frequent checking. He may eventually be completely bed-ridden. (well, no, technically he never will, because the dialysis center MUST see him that once a month even if everything else works out. Hospice doesn't "recognize" the kidney disease as long as he's on dialysis. And Medicare doesn't "recognize" hospice in connection with the kidney disease).
I keep doing as much as I can to keep him up at least some of the day.
People:
The neighbors quit coming over. Last week, and over the weekend, either we had someone here a lot or it was raining (or both). Butby Tuesday it cleared up; all visotrs (aide and insurance man) came in the morning; and still they didn't come. I guess I hurt her feelings, or made her mad. Either way, I'm sorry they don't come over at all. But if it's either that or be smothered, then they can stay away. Carl came in the evening to do the heparin injection, get his birthday card, visit a bit.
Emotional:
Lately I'm too tired to be depressed. I stay weepy a lot, but that's a combination of my eyes giving me so much trouble and exhaustion (frequent alarms during the night lately, though I *think* I know something I can do that will solve that problem), added to the constant sadness.
My eyes aren't going to get better. The sadness isn't going to go away. I better find a cure for the alarms so I can at least get sleep at night!
Saturday, August 17, 2013
Day 84
Friday, August 16, 2013
Physical:
This actually was a mostly good day. The aide came early; in fact, I was getting him disconnected when she called to say she was on the way. So he was bathed and up by around 11:30.
Since I had help, he got to spend most of the afternoon in the recliner. He was up for about 5 hours, much better than "usual" for him. He was, however, noticeably "out of it" .. not completely alert or tuned in to what was going on around him.
He went back to bed about 5:00, but around 7:30 or so called me. He said he wanted me to help him get up, and when I asked why he said because it was time. When I was trying to get him sitting up, he wanted me to stop and get his shoes. I told him I'd get them on his feet after he got in the wheelchair, since he couldn't sit up without something behind him. But, once I got him into the wheelchair, he started fiddling with the commode, and finally flipped the seat up. I had to ask if he wanted to get on it. (suppressing urge to scream at this point - he did not say or imply that's why he wanted to get up!).
After sitting more than half an hour, when I asked if he was ready to get up, he said he was getting ready to. Again, the same thing that both drives me crazy and scares me. More and more, he is convinced he can do things that he cannot do. I figured I'd give him a few minutes and go back and help. So when I go back, he's on his knees on the floor. From that point I had a MOST distressing hour, trying to figure out what to do. He used to be able to get up himself once he could get on his knees; but this time he couldn't grasp the concept of getting his feet up under him to push. I finally hit on the idea of raising the bed . That elevated him enough for me to just push the wheelchair close enough behind him, and hold it, and help him just back into it. I still make the mistake of asking him what he wants to do ... he just doesn't cope with choices any more. But he finally decided to just get back in bed. At that point, I got him undressed and into the bed. I finished the dialysis set up and got him connected. By then he was ready to eat something. At lunch I had given him a piece of chicken and some cantalope. He never ate more than a few bites, but got gagged and wouldn't eat any more. He said it was because he ate too fast; but I suspect it was a coughing spell. Anyway, the only thing he would eat at night was some watermelon. That must have tasted pretty good, because he ate 2 bowls full (cut into bite size pieces). Long before his final pills he was snoring.
People:
The only people we saw were DSS and DGS20. They stayed all afternoon and that was nice. They left about the time DH went back to bed.
Emotions:
Exhausted. Drained. Frustrated. Sad. Scared.
Physical:
This actually was a mostly good day. The aide came early; in fact, I was getting him disconnected when she called to say she was on the way. So he was bathed and up by around 11:30.
Since I had help, he got to spend most of the afternoon in the recliner. He was up for about 5 hours, much better than "usual" for him. He was, however, noticeably "out of it" .. not completely alert or tuned in to what was going on around him.
He went back to bed about 5:00, but around 7:30 or so called me. He said he wanted me to help him get up, and when I asked why he said because it was time. When I was trying to get him sitting up, he wanted me to stop and get his shoes. I told him I'd get them on his feet after he got in the wheelchair, since he couldn't sit up without something behind him. But, once I got him into the wheelchair, he started fiddling with the commode, and finally flipped the seat up. I had to ask if he wanted to get on it. (suppressing urge to scream at this point - he did not say or imply that's why he wanted to get up!).
After sitting more than half an hour, when I asked if he was ready to get up, he said he was getting ready to. Again, the same thing that both drives me crazy and scares me. More and more, he is convinced he can do things that he cannot do. I figured I'd give him a few minutes and go back and help. So when I go back, he's on his knees on the floor. From that point I had a MOST distressing hour, trying to figure out what to do. He used to be able to get up himself once he could get on his knees; but this time he couldn't grasp the concept of getting his feet up under him to push. I finally hit on the idea of raising the bed . That elevated him enough for me to just push the wheelchair close enough behind him, and hold it, and help him just back into it. I still make the mistake of asking him what he wants to do ... he just doesn't cope with choices any more. But he finally decided to just get back in bed. At that point, I got him undressed and into the bed. I finished the dialysis set up and got him connected. By then he was ready to eat something. At lunch I had given him a piece of chicken and some cantalope. He never ate more than a few bites, but got gagged and wouldn't eat any more. He said it was because he ate too fast; but I suspect it was a coughing spell. Anyway, the only thing he would eat at night was some watermelon. That must have tasted pretty good, because he ate 2 bowls full (cut into bite size pieces). Long before his final pills he was snoring.
People:
The only people we saw were DSS and DGS20. They stayed all afternoon and that was nice. They left about the time DH went back to bed.
Emotions:
Exhausted. Drained. Frustrated. Sad. Scared.
Friday, August 16, 2013
Day 83
Thursday August 15, 2013
Physical:
This was a particularly bad day. It started out with me trying to get DH up early (earlier than "usual"). First of all he decided he had to get up and sit on the commode. He sat there for 45 minutes, for basically nothing. It went downhill from there.
He just was in some kind of strange mind-set, and wouldn't cooperate. I tried to get him up and into the wheelchair, and he grabbed my arm and pushed against me. He fiddled around with the catheter and the elastic belt for holding it (which he never got done correctly anyway). He insisted on putting on his shoes himself. Just one little thing after another.
And, of course, I couldn't figure out how to work the portable oxygen. I did finally figure out how to turn in on, but since I can't read the guage, I couldn't adjust it. I'm pretty sure it was on way to high a liter flow.
Then I had a really hard time getting him in the car. It's not been that bad before. He just can't get it in his head to let go of something once he grabs hold (like the door for example). I was so exhausted by the time I got him in, and even though the whole process started more than 2 hours ahead, we were half an hour late getting to his appointment.
Then I couldn't get him out of the car. Part of that problem was their wheelchair - even with brakes on, it moved. He was sitting on the pavement beside the car and I had to go in and ask for help. The nurse came out, saw the situation, and went back for 2 more people to help!
We went through the same process getting him back in again. I tried to call DSS on the way home (after stops at pharmacy and grocery store), but couldn't get a call through. But, surprisingly enough, I managed to get him into the wheelchair on the first try.
I had stopped at the mailbox on the way in the driveway,. When I stopped, I went on and carried cold stuff in first. I went to get him, and he was folling around with the mail, and wouldn't put it down (it was all JUNK! Not even a magazine). He kept saying he could push the wheelchair in. It's really scary the way he keeps thinking he can do things he can't do.
Once I finally got him in, he wanted to go right in and lay down. I made him a sandwich at least, he refused anything else.When I went in to start getting dialysis set up, I found the bed wet .. where he had spilled a bottle of water. So much for nice clean sheets. So I got him in the wheelchair long enough to watch his favorite show while I finished the set up and got the bed changed.
Not that it particularly pertains to his condition, but the cycler has a problem. I guess I'll need to call and have it replaced. The last time it woke me with alarming was around 2 AM. He was awake (but earlier when it alarmed he thought it was a movie and told me to just turn it off). He was breathing oddly, and when I asked why he said he was holding his breath. For no particular reason. I've noticed him doing that several times recently.
People:
The neighbor - and 3 kids - walked over just as we were getting in the car to leave. I *think* they thought they could "help". Of course they have no clue how to help; and I seriously doubt that very small woman (short but heavy) or those children would be able to do anything helpful anyway. I just found it very odd for them to have come over just then.
I spoke with the nurse of course. I updated them on his medicines. Apparently they aren't going to take him off any others. I was afraid they were going to try to put him ON something else - they keep harping on his low potassium. I don't think they really realize just how little appetite he really has!. She says she has been talking to the hospice nurse, and they're working towards a solution to having him have to go to the clinic so often.
Since I couldn't get hold of DSS, he never came over. He called later, but since I had gotten DH in, I told him not to worry about it. He had to go to the airport to meet his son. I said for them to come over Friday would be fine, and do the heparin then.
Emotion:
Off and on during the day I was border line hysterical. I get so angry, and there is nowhere to focus that anger. I *know* DH can't help most of what happens. He has dementia, and it expresses itself in curious ways. But it's getting harder to deal with. And the worse my eyes get, the more frustrating it becomes. Not to mention I'm just plain tired. I don't want "help". I've come to realize I'm too much of a perfectionist. No, that's not quite the right word. But I want thiings done MY way in my home. And I want things put up where and How I want them. And it drives me crazy when people insist on "helping" me and then do it *their* way. And I'm supposed to be SO grateful for their help that I don't say anything. And then I have to spend even more time and effort later getting things back. Plus, what people don't realize, the worse my vision gets the more important it is that everything be put where I keep it - otherwise I can't find things!
So, I'm even more exhausted trying to get the house clean before anyone comes over, as well as keeping up with taking care of DH.
Physical:
This was a particularly bad day. It started out with me trying to get DH up early (earlier than "usual"). First of all he decided he had to get up and sit on the commode. He sat there for 45 minutes, for basically nothing. It went downhill from there.
He just was in some kind of strange mind-set, and wouldn't cooperate. I tried to get him up and into the wheelchair, and he grabbed my arm and pushed against me. He fiddled around with the catheter and the elastic belt for holding it (which he never got done correctly anyway). He insisted on putting on his shoes himself. Just one little thing after another.
And, of course, I couldn't figure out how to work the portable oxygen. I did finally figure out how to turn in on, but since I can't read the guage, I couldn't adjust it. I'm pretty sure it was on way to high a liter flow.
Then I had a really hard time getting him in the car. It's not been that bad before. He just can't get it in his head to let go of something once he grabs hold (like the door for example). I was so exhausted by the time I got him in, and even though the whole process started more than 2 hours ahead, we were half an hour late getting to his appointment.
Then I couldn't get him out of the car. Part of that problem was their wheelchair - even with brakes on, it moved. He was sitting on the pavement beside the car and I had to go in and ask for help. The nurse came out, saw the situation, and went back for 2 more people to help!
We went through the same process getting him back in again. I tried to call DSS on the way home (after stops at pharmacy and grocery store), but couldn't get a call through. But, surprisingly enough, I managed to get him into the wheelchair on the first try.
I had stopped at the mailbox on the way in the driveway,. When I stopped, I went on and carried cold stuff in first. I went to get him, and he was folling around with the mail, and wouldn't put it down (it was all JUNK! Not even a magazine). He kept saying he could push the wheelchair in.
Once I finally got him in, he wanted to go right in and lay down. I made him a sandwich at least, he refused anything else.When I went in to start getting dialysis set up, I found the bed wet .. where he had spilled a bottle of water. So much for nice clean sheets. So I got him in the wheelchair long enough to watch his favorite show while I finished the set up and got the bed changed.
Not that it particularly pertains to his condition, but the cycler has a problem. I guess I'll need to call and have it replaced. The last time it woke me with alarming was around 2 AM. He was awake (but earlier when it alarmed he thought it was a movie and told me to just turn it off). He was breathing oddly, and when I asked why he said he was holding his breath. For no particular reason. I've noticed him doing that several times recently.
People:
The neighbor - and 3 kids - walked over just as we were getting in the car to leave. I *think* they thought they could "help". Of course they have no clue how to help; and I seriously doubt that very small woman (short but heavy) or those children would be able to do anything helpful anyway. I just found it very odd for them to have come over just then.
I spoke with the nurse of course. I updated them on his medicines. Apparently they aren't going to take him off any others. I was afraid they were going to try to put him ON something else - they keep harping on his low potassium. I don't think they really realize just how little appetite he really has!. She says she has been talking to the hospice nurse, and they're working towards a solution to having him have to go to the clinic so often.
Since I couldn't get hold of DSS, he never came over. He called later, but since I had gotten DH in, I told him not to worry about it. He had to go to the airport to meet his son. I said for them to come over Friday would be fine, and do the heparin then.
Emotion:
Off and on during the day I was border line hysterical. I get so angry, and there is nowhere to focus that anger. I *know* DH can't help most of what happens. He has dementia, and it expresses itself in curious ways. But it's getting harder to deal with. And the worse my eyes get, the more frustrating it becomes. Not to mention I'm just plain tired. I don't want "help". I've come to realize I'm too much of a perfectionist. No, that's not quite the right word. But I want thiings done MY way in my home. And I want things put up where and How I want them. And it drives me crazy when people insist on "helping" me and then do it *their* way. And I'm supposed to be SO grateful for their help that I don't say anything. And then I have to spend even more time and effort later getting things back. Plus, what people don't realize, the worse my vision gets the more important it is that everything be put where I keep it - otherwise I can't find things!
So, I'm even more exhausted trying to get the house clean before anyone comes over, as well as keeping up with taking care of DH.
Wednesday, August 14, 2013
Day 80
Tuesday August 13, 2013
Physical:
DH had a fairly good day. His mind was a little confused off and on, but not as drastically as it has been other times. He still does not appear to comprehend what he is actually physically capable of doing. He sat in his recliner, and was there for about 6 hours. He really wanted out sooner, but no one could help him.
People:
This was a busy day for DH. DS and family got here a little before noon. That's when I got him up and dressed, and into the recliner. A little before 1:00 DSS got here to take me to my eye doctor appointment. Just before we were supposed to leave, the nurse came. She knew I had the appointment, and I don't know why she chose then to come. Last week she had told me she'd split some pills for me, but not ony was this not the time, but I hadn't even picked up the refill yet to be split. After I left the social worker came. The kids say she only asked a few questions and didn't stay long. The nurse said she (SW) knew I wouldn't be there, so it looks like she wanted to see DH without me there. Curious, and makes me feel like something is "off". Maybe I just talk too much. :( I got home a little after 6:00. DH was ready to go lay down when I got there, so DS helped me get him up. DS and family stayed until around 7:00. Thinking back, it looks like the nurse, the chaplain, and the social worker all crowded visits into a short time frame, so other than the nurse weekly I guess we won't see the others for another 2 or 3 weeks. But I don't have another appointment until January, so I will be here.
Emotions:
I think I'm just too tired to feel much right now. Except this vague feeling that something is "off" because of the visits crowded into the one day I had to leave.
Physical:
DH had a fairly good day. His mind was a little confused off and on, but not as drastically as it has been other times. He still does not appear to comprehend what he is actually physically capable of doing. He sat in his recliner, and was there for about 6 hours. He really wanted out sooner, but no one could help him.
People:
This was a busy day for DH. DS and family got here a little before noon. That's when I got him up and dressed, and into the recliner. A little before 1:00 DSS got here to take me to my eye doctor appointment. Just before we were supposed to leave, the nurse came. She knew I had the appointment, and I don't know why she chose then to come. Last week she had told me she'd split some pills for me, but not ony was this not the time, but I hadn't even picked up the refill yet to be split. After I left the social worker came. The kids say she only asked a few questions and didn't stay long. The nurse said she (SW) knew I wouldn't be there, so it looks like she wanted to see DH without me there. Curious, and makes me feel like something is "off". Maybe I just talk too much. :( I got home a little after 6:00. DH was ready to go lay down when I got there, so DS helped me get him up. DS and family stayed until around 7:00. Thinking back, it looks like the nurse, the chaplain, and the social worker all crowded visits into a short time frame, so other than the nurse weekly I guess we won't see the others for another 2 or 3 weeks. But I don't have another appointment until January, so I will be here.
Emotions:
I think I'm just too tired to feel much right now. Except this vague feeling that something is "off" because of the visits crowded into the one day I had to leave.
Tuesday, August 13, 2013
Day 79
Monday August 12, 2013
Physical:
On a day to day basis I really can't tell much difference. Some days he is more alert, other days he seems "foggy". Thenurse says that's from the dialysis; but if that's true, why is it only recently showing up? Why doesn't everyone on dialysis just sink into a semi-coma state? It's just all too confusing.
I did have a problem trying to get him moved from the wheelchair to the bedside commode. He needed to stand UP and move to the side, which is something he seems to be totally incapable of doing (not completely sure he even understands). Both items have arms that he has to move past, but he doesn't seem to grasp that. We ended up with him barely on the edge of the bed. I did finally get him turned and pushed and pulled to the point he was on the bed so that I could start over to get him to the commode.
During the time he was resting on the bed, and while sitting, I moved some of the furniture around again. I pushed the bed farther over (and desperately hope I haven't got it putting too much weight on the weak area of the floor). I now have a much wider open area on the side of the room where I most often have to do anything. There is enough space to leave the commode byside the bed, and the foot, and still get the wheelchair in and out. Maybe with that much space I won't break any more toes tripping over the legs of the commode. The far side of the bed is a bit tight, but I only have to get over there when I change the sheets.
People
Sunday was a nice quiet day. On Monday theaide came as usual, also the chaplain came. I was glad he came, he was able to help me feel better about some issues that were bothering me. The neighbor, as usual, was in and out. She completely ignored what I said and insisted on bringing "lunch". She is determined to force us to eat a big meal in the middle of the day. She doesn't understand that Jimmy isn't eating most of what she puts on his plate. And I can't tell her much because I'm not convinced the girls translate everything I say.
Emotions:
Feeling frustrated and annoyed has for the time being replaced feeling so sad. Plus, with so many people coming (and especially the neighbor coming so often!), it's pushed me into doing more cleaning. Well, not "more" but certainly more often! I resent that woman, no matter how well meaning she is, coming into MY home and changing the air filter!!! or announcing she'll come tomorrow (asked if I'll be home, but not if I had plans) to "help" me clean my kitchen!!! I'm really working on acceptance and patience. I'm not there yet.
Sunday, August 11, 2013
Day 77
Saturday August 10, 2013
Yes, I've skipped a few days. I'm not even sure there's any point at all to doing this. Even my "followers" - who ever they are - don't read it. I don't doubt it's of no interest to anyone. But every once in awhile I'll keep blogging away.
Physical:
I have not seen any significant change over the last few days. The nurse came Friday morning, and said she could tell, since she only sees him once a week, that he is slowly declining. Which leaves me to wonder: Is she saying that because it's what she expects to see? (because even though she sees him every week, she also sees many other patients, so how can she be *that* sure about him?). Is she saying that out of kindness to make sure he remains under hospice care (if there were no change - if he were not declining, but just stable - he'd no longer be qualified)? Or am I simply in complete denial? Honestly, I don't know.
He isn't any "weaker" - but then, if he was, he really would be about completely bed-ridden. As it is, he is up an average of 3 to 4 hours a day. But part of that is because there's no comfortable place for him to sit that I can get him in or out of. So really, he's being punished for my short fall. Totally unfair. :(
He has almost no appetite, and at times simply refuses to eat at all. Some days are better than others of course. The neighbor thinks she can "force" him (and me???) to eat by insisting on making or bringing food and putting it in front of us. All that does is annoy me; and he may or may not eat. Today she refused to accept when we said it wasn't time to eat (in the middle of the afternoon), so she brought soup over. Since she put it in front of him (and made a production of one of the girls helping move the rolling table to "just right" in front of him), he ate some of it. And then wouldn't eat any supper. It was a perfectly good supper (although she acted like she thought either my cooking is no good or she was offended that I was fixing leftovers. It's really none of her business!)
In any case, with the lack of appetite, his system isn't working very well. I give him a Dulcolax every night now; but he only has a bm every other day, sometimes a 3rd day. (TIM? oh wait, no one is reading anyway!) So far it is not apparently causing him any problem (if he was constipated it would cause trouble with the dialysis; and if he was getting too much of the laxative, he'd get "the runs" which would be a major problem for me). He also doesn't seem to always know if he has to go or not. One day this week he had a mess in his underwear (fortunately pull-ups) and didn't know it. Today he "had" to sit on the commode awhile - and didn't seem to be aware that he did not do anything. He's nearly completely urinary incontinent; and I can't tell how much is lack of awareness, and how much is just not being able to deal with it in time when he is aware. In any case, he's sleeping in pull ups; and may soon be wearing them day time too. He's still resisting that part (except a day when we knew we'd be out many hours), so I don't know how that's going to work out yet.
He's coughing and wheezing more and more. For some odd reason he has trouble keeping the oxygen tubing in place. He says it gets "stiff". But it's not "that" stiff. I've threatened to tape it in place!
People:
Funny how so many people (sister, brother, cousin, friend) all wanted to come see him that first week. And since then, only the neighbor, who is driving me crazy. She keeps just showing up at the door with one or more of her kids (to translate), because she doesn't want me to be alone. Occasionally I NEED to be alone! But I've decided to just suck it up, and let her have her hour in the afternoon. And try to be gracious about it. I just need for her to stop acting like she thinks I'm an incredibly old feeble incompitent old person who can't keep house, can't cook, and can't take care of my husband.
The aide and nurse came this week as usual. TGF and her boys went out of town on their annual vacation to Maine (at MY expense).
DSS spent all of the morning with his dad so I could finally get out and do some shopping. It's hard to shop when you can't see well, but I managed to get everything on a very lengthy list. (a lot of things I "stock piled" in hopes of not needing another shopping trips for several months at least).
Since no one comes to see DH (except TN), I don't get to see anyone either. TGF was going to take me shopping Thursday night; but she'd forgotten she had to take one of the boys to football practice, so she didn't have time for me (as usual). It's OK, it got done. My "GF" (and these days I use the term quite loosely) hasn't come this week. The last time she came she made a huge production of how much her hip hurt; I'd just as soon she stay home in that case. I take a couple of Aleve every moring, and frequently by night I'm hurting. But I keep doing what I have to do, and don't say anything. I don't need to listen to her. She no longer acts like she cares how I feel. (and I could go on and on, but tat is not what this is about).
I just think people, especially relatives, could be a bit more diligent about visiting. He isn't going to live forever, even if I do believe it will certainly be beyond the 6 months time frame. It would be a shame for them to all be wailing about how they wish they'd spent more time with him. Really, it's already too late, in that his mind isn't what it once was. He more and more frequently doesn't even know where he is. He used to be a very interesting person to talk to.
So, enough, several days worth of catching up but nothing has changed all that much and nothing overly significant has happened.
Yes, I've skipped a few days. I'm not even sure there's any point at all to doing this. Even my "followers" - who ever they are - don't read it. I don't doubt it's of no interest to anyone. But every once in awhile I'll keep blogging away.
Physical:
I have not seen any significant change over the last few days. The nurse came Friday morning, and said she could tell, since she only sees him once a week, that he is slowly declining. Which leaves me to wonder: Is she saying that because it's what she expects to see? (because even though she sees him every week, she also sees many other patients, so how can she be *that* sure about him?). Is she saying that out of kindness to make sure he remains under hospice care (if there were no change - if he were not declining, but just stable - he'd no longer be qualified)? Or am I simply in complete denial? Honestly, I don't know.
He isn't any "weaker" - but then, if he was, he really would be about completely bed-ridden. As it is, he is up an average of 3 to 4 hours a day. But part of that is because there's no comfortable place for him to sit that I can get him in or out of. So really, he's being punished for my short fall. Totally unfair. :(
He has almost no appetite, and at times simply refuses to eat at all. Some days are better than others of course. The neighbor thinks she can "force" him (and me???) to eat by insisting on making or bringing food and putting it in front of us. All that does is annoy me; and he may or may not eat. Today she refused to accept when we said it wasn't time to eat (in the middle of the afternoon), so she brought soup over. Since she put it in front of him (and made a production of one of the girls helping move the rolling table to "just right" in front of him), he ate some of it. And then wouldn't eat any supper. It was a perfectly good supper (although she acted like she thought either my cooking is no good or she was offended that I was fixing leftovers. It's really none of her business!)
In any case, with the lack of appetite, his system isn't working very well. I give him a Dulcolax every night now; but he only has a bm every other day, sometimes a 3rd day. (TIM? oh wait, no one is reading anyway!) So far it is not apparently causing him any problem (if he was constipated it would cause trouble with the dialysis; and if he was getting too much of the laxative, he'd get "the runs" which would be a major problem for me). He also doesn't seem to always know if he has to go or not. One day this week he had a mess in his underwear (fortunately pull-ups) and didn't know it. Today he "had" to sit on the commode awhile - and didn't seem to be aware that he did not do anything. He's nearly completely urinary incontinent; and I can't tell how much is lack of awareness, and how much is just not being able to deal with it in time when he is aware. In any case, he's sleeping in pull ups; and may soon be wearing them day time too. He's still resisting that part (except a day when we knew we'd be out many hours), so I don't know how that's going to work out yet.
He's coughing and wheezing more and more. For some odd reason he has trouble keeping the oxygen tubing in place. He says it gets "stiff". But it's not "that" stiff. I've threatened to tape it in place!
People:
Funny how so many people (sister, brother, cousin, friend) all wanted to come see him that first week. And since then, only the neighbor, who is driving me crazy. She keeps just showing up at the door with one or more of her kids (to translate), because she doesn't want me to be alone. Occasionally I NEED to be alone! But I've decided to just suck it up, and let her have her hour in the afternoon. And try to be gracious about it. I just need for her to stop acting like she thinks I'm an incredibly old feeble incompitent old person who can't keep house, can't cook, and can't take care of my husband.
The aide and nurse came this week as usual. TGF and her boys went out of town on their annual vacation to Maine (at MY expense).
DSS spent all of the morning with his dad so I could finally get out and do some shopping. It's hard to shop when you can't see well, but I managed to get everything on a very lengthy list. (a lot of things I "stock piled" in hopes of not needing another shopping trips for several months at least).
Since no one comes to see DH (except TN), I don't get to see anyone either. TGF was going to take me shopping Thursday night; but she'd forgotten she had to take one of the boys to football practice, so she didn't have time for me (as usual). It's OK, it got done. My "GF" (and these days I use the term quite loosely) hasn't come this week. The last time she came she made a huge production of how much her hip hurt; I'd just as soon she stay home in that case. I take a couple of Aleve every moring, and frequently by night I'm hurting. But I keep doing what I have to do, and don't say anything. I don't need to listen to her. She no longer acts like she cares how I feel. (and I could go on and on, but tat is not what this is about).
I just think people, especially relatives, could be a bit more diligent about visiting. He isn't going to live forever, even if I do believe it will certainly be beyond the 6 months time frame. It would be a shame for them to all be wailing about how they wish they'd spent more time with him. Really, it's already too late, in that his mind isn't what it once was. He more and more frequently doesn't even know where he is. He used to be a very interesting person to talk to.
So, enough, several days worth of catching up but nothing has changed all that much and nothing overly significant has happened.
Thursday, August 8, 2013
Day 74
Wednesday August 7, 2013
Physical:
Sometimes because of the mental issues I'm not really sure of the physical status. He went for about 3 hours without oxygen, and said he was fine. But I'm not sure he was as fine as he thought.
He had a clinic appointment in the morning. I got him up and dressed early. Good thing, since as soon as I pushed him into the living room, he said "now roll me into the bathroom".
I got him into the car without too much trouble. At the clinic, I got him out again with minimal problems. It was a long wait of course, since they've decided to do the iron infusions. Funny how that didn't come up until AFTER I mentioned getting his shots at home so fewere clinic visits. Anything to keep billing, right? (and it doesn't seem to concern them at all how difficult a process it is to get him there).
After clinic, I made a few stops and then we went next town over to pay rent. He rode at a peculiar angle because he can't get the hang of getting his but all the way into the car before sitting down. He barely gets on the edge of the seat, so ends up sort of sideways.
Once home, as so often happens, the problems began. He just couldn't get out of the car and into the wheelchair. Part of the problem is that even though we have that nice cemnt pad, his feet tend to slide. But also, he just won't even try to straighten up. I guess he's too tired by then; but if he doesn't get straight so he can turn a bit, he can't get into the wheelchair. He keeps trying to just move his but over sideways - and no matter how many times we go through this, he apparently isn't capable of *learning* that he can't do that. The frame of the car and the arm of the wheelchair are in the way.
He ended up barely clinging to the edge of the seat, and I dragged him into the house that way. Once inside, he slid the rest of the way off the wheelchair; I ended up pulling him by his wrists, while he pushed with his left foot, and got him back to the bedroom. By then he was just too exhausted (and so was I) to do anything else. I finally had to call DSS again, and he came over and helped get him in bed.
DSS commented on how heavy DH is - well duh! I knew that! DH claims that at clinic he weighed 241. If that's correct, he's actually gaining weight. How odd, since he barefly eats!
He remained confused all day. He never got out of bed, which I pretty much expected. He only ate a few bites of dinner (but he did eat cake).
When I got him ready for bed, had to clean him up. He wasn't even aware he needed cleaning. So now I wonder if (other than frequently thinking he needs to pee but doesn't) is he on the way to becoming completely incontinent? I have had to give in and start using the pull-ups at night; it may soon be day too. I put them on him yesterday since I knew we'd be out a long time. It's vaguely troublesome that he doesn't even mind.
When I woke him up a couple of hours later for his last pills, he was again disoriented. He also thought it was morning.
People:
Other than at clinic, the oonly people seen were DSS (briefly), and the neighbors. But oh my! I keep telling myself they mean well, but it's starting to get a little disturbing.
The mom and oldest came while I was still trying to get DH back to his room, and I had to ask them to come back later. They did, and went right into the kitchen to cook. Since I'm not a good cook, that was OK. The little girls (and the baby) were in and out.
Emotion:
This is all tangled up. I was totally frustrated and sad because I couldn't get DH off the floor. It frustrates me no end that he isn't able to listen to instructions any more. I hated so much to have to call DSS to leave work again (though at least it was toward the end of the day; and he *said* he'd been at a good stopping point).
But these neighbor ladies .. I don't know what to think. Like I said, the cooking is OK. They enjoy it, and I don't. It's a shame DH won't eat, but I will. But, they are getting awfully *comfortable* in MY house. When the food was ready, they fixed me a plate and put on a tray. In the living room. By myself. They took a tray back to DH, and I went in to get his over bed tray fixed. I raised the head of the bed. But "mom" just went right in and started tugging on his arms to straighten hm, andstuffing pillows behind him so he was propped where she thought he should be. And she was adjusting the tray, and just in general fussing around. And then .. she dragged a chair in there and sat in the room with him, chattering away in Spanish that he didn't understand a word of, watching him eat. I don't know, but it seems to me that's a bit nervy, and he thought it was weird.
The oldest daughter baked a cake too, which he did eat. And they washed up nearly all the dishes. And they left a ton of leftovers in the fridge.
But then I was asked if I'm busy tomorrow. She wanted to come over and help me clean the kitchen. WHAT??? Are you telling me my kitchen isn't clean enough for your standards??? Offering to "help" in general is one thing. To expect to decide what I'm to do on a given day, and imply my kitchen isn't clean enough, really bothers me. I know I can't see well, but I still don't think it's so bad that she needs to come "help" me clean it! I do know I need to finish washing out inside the refrigerators.
I'm just very upset over that. Fortunately, I was able to legitamately tell her I have company coming, and to ait until next week. I guess over the weekend I'll be cleaning!
Physical:
Sometimes because of the mental issues I'm not really sure of the physical status. He went for about 3 hours without oxygen, and said he was fine. But I'm not sure he was as fine as he thought.
He had a clinic appointment in the morning. I got him up and dressed early. Good thing, since as soon as I pushed him into the living room, he said "now roll me into the bathroom".
I got him into the car without too much trouble. At the clinic, I got him out again with minimal problems. It was a long wait of course, since they've decided to do the iron infusions. Funny how that didn't come up until AFTER I mentioned getting his shots at home so fewere clinic visits. Anything to keep billing, right? (and it doesn't seem to concern them at all how difficult a process it is to get him there).
After clinic, I made a few stops and then we went next town over to pay rent. He rode at a peculiar angle because he can't get the hang of getting his but all the way into the car before sitting down. He barely gets on the edge of the seat, so ends up sort of sideways.
Once home, as so often happens, the problems began. He just couldn't get out of the car and into the wheelchair. Part of the problem is that even though we have that nice cemnt pad, his feet tend to slide. But also, he just won't even try to straighten up. I guess he's too tired by then; but if he doesn't get straight so he can turn a bit, he can't get into the wheelchair. He keeps trying to just move his but over sideways - and no matter how many times we go through this, he apparently isn't capable of *learning* that he can't do that. The frame of the car and the arm of the wheelchair are in the way.
He ended up barely clinging to the edge of the seat, and I dragged him into the house that way. Once inside, he slid the rest of the way off the wheelchair; I ended up pulling him by his wrists, while he pushed with his left foot, and got him back to the bedroom. By then he was just too exhausted (and so was I) to do anything else. I finally had to call DSS again, and he came over and helped get him in bed.
DSS commented on how heavy DH is - well duh! I knew that! DH claims that at clinic he weighed 241. If that's correct, he's actually gaining weight. How odd, since he barefly eats!
He remained confused all day. He never got out of bed, which I pretty much expected. He only ate a few bites of dinner (but he did eat cake).
When I got him ready for bed, had to clean him up. He wasn't even aware he needed cleaning. So now I wonder if (other than frequently thinking he needs to pee but doesn't) is he on the way to becoming completely incontinent? I have had to give in and start using the pull-ups at night; it may soon be day too. I put them on him yesterday since I knew we'd be out a long time. It's vaguely troublesome that he doesn't even mind.
When I woke him up a couple of hours later for his last pills, he was again disoriented. He also thought it was morning.
People:
Other than at clinic, the oonly people seen were DSS (briefly), and the neighbors. But oh my! I keep telling myself they mean well, but it's starting to get a little disturbing.
The mom and oldest came while I was still trying to get DH back to his room, and I had to ask them to come back later. They did, and went right into the kitchen to cook. Since I'm not a good cook, that was OK. The little girls (and the baby) were in and out.
Emotion:
This is all tangled up. I was totally frustrated and sad because I couldn't get DH off the floor. It frustrates me no end that he isn't able to listen to instructions any more. I hated so much to have to call DSS to leave work again (though at least it was toward the end of the day; and he *said* he'd been at a good stopping point).
But these neighbor ladies .. I don't know what to think. Like I said, the cooking is OK. They enjoy it, and I don't. It's a shame DH won't eat, but I will. But, they are getting awfully *comfortable* in MY house. When the food was ready, they fixed me a plate and put on a tray. In the living room. By myself. They took a tray back to DH, and I went in to get his over bed tray fixed. I raised the head of the bed. But "mom" just went right in and started tugging on his arms to straighten hm, andstuffing pillows behind him so he was propped where she thought he should be. And she was adjusting the tray, and just in general fussing around. And then .. she dragged a chair in there and sat in the room with him, chattering away in Spanish that he didn't understand a word of, watching him eat. I don't know, but it seems to me that's a bit nervy, and he thought it was weird.
The oldest daughter baked a cake too, which he did eat. And they washed up nearly all the dishes. And they left a ton of leftovers in the fridge.
But then I was asked if I'm busy tomorrow. She wanted to come over and help me clean the kitchen. WHAT??? Are you telling me my kitchen isn't clean enough for your standards??? Offering to "help" in general is one thing. To expect to decide what I'm to do on a given day, and imply my kitchen isn't clean enough, really bothers me. I know I can't see well, but I still don't think it's so bad that she needs to come "help" me clean it! I do know I need to finish washing out inside the refrigerators.
I'm just very upset over that. Fortunately, I was able to legitamately tell her I have company coming, and to ait until next week. I guess over the weekend I'll be cleaning!
Tuesday, August 6, 2013
Day 72
Monday, August 5, 2013
Physical:
When I write daily, there really don't seem to be noticeable changes. It was a "calm" day, mostly. He didn't appear to have any confusion about time and place He does occasionally still have memory lapses about what he is physically able to do. Since he spends so much time sleeping, or at least laying on the bed, it's hard to tell what his mental status is.
Yesterday after being bathed, he sat in the living room for a few hours. He stares semi-blankly at the TV; I'm never sure if he's actually watching it or not, though I do try to find something he'll find interesting.
He managed to eat a small bowl of brunswick stew and a bag of Cheetos, though it took him a long time. He stayed in bed so late, I didn't even try to get him up, but took dinner to him. I fixed him barbeque and brunswick stew, 2 things he normally likes. After well over an hour, he only ate about 2 bies of each; and it took another hour to get him to tak his pills.
Laer, when I was nearly done with getting dialysis set up, he started hanging his legs off the bed, and informed me he thought he'd get up for awhile. I confess, I was mad at him. :( I know that's pointless, but sometimes it's all just too much.
People:
The aide came to get him bathed. While he was sleeping the neighbor came over. She just sat with me awhile, and we watched her 2 y/o play with teddy bears. She talked with the girls, and occasionally she would ask me something (through them). She offered to vacuum (embarrassing that it was that obvious that it was needed), but told her I'd do it later after DH woke up. She asked things that shouldn't have been any of her business - like how much rent I pay, and did I pay my GF for cutting grass. I wonder if she was angling to get me to pay her husband to cut the grass.
After she went home the girls stayed pretty late. Even GF stayed later than usual.
Also the supply delivery came; but it was a different driver than usual. He'd been before, but not the guy who does the morning route.
Emotions:
It was a difficult day; but at least part of it had nothing to do with DH or anyone else. One of the kittens accidently got in, and it took a lot of stress and all day to get him out. It annoyed me that the neighbor lady comes over, and if I don't have something for her to do, she just sits and visits. She's trying to help, but what she's doing is adding yet another layer to my stress ... feeling like I have to get up earlier and earlier to have everything "done" before people start just showing up. And yet, ti's still not the people I care about that are showing up or calling. DSS calls nearly every day; but I'm not really sure if he hears what I say or not. I tell him how his dad is doing; but no matter what I say - good day or bad - he'll say he just called to see how his dad is doing.
On a day to day basis, I'm "on call" 24 hours a day. I'm up from early morning to late at night, and have to try to fit all that needs to be done around his schedule and what I have to do for him. And yet, people want to just drop in. I sometimes get told "it doesn't matter" if I feel like my house isn't clean enough ... but they notice. So it does matter. And I don't understand why I'm expected to keep this big house spotless at all times, and do all that he needs done, and have myself showered and presentable at any time someone decides to show up at my door, and still be cheerful and polite no matter who shows up when.
Sometimes I don't know if I cry because I'm sad, or scared, or just tired!
Physical:
When I write daily, there really don't seem to be noticeable changes. It was a "calm" day, mostly. He didn't appear to have any confusion about time and place He does occasionally still have memory lapses about what he is physically able to do. Since he spends so much time sleeping, or at least laying on the bed, it's hard to tell what his mental status is.
Yesterday after being bathed, he sat in the living room for a few hours. He stares semi-blankly at the TV; I'm never sure if he's actually watching it or not, though I do try to find something he'll find interesting.
He managed to eat a small bowl of brunswick stew and a bag of Cheetos, though it took him a long time. He stayed in bed so late, I didn't even try to get him up, but took dinner to him. I fixed him barbeque and brunswick stew, 2 things he normally likes. After well over an hour, he only ate about 2 bies of each; and it took another hour to get him to tak his pills.
Laer, when I was nearly done with getting dialysis set up, he started hanging his legs off the bed, and informed me he thought he'd get up for awhile. I confess, I was mad at him. :( I know that's pointless, but sometimes it's all just too much.
People:
The aide came to get him bathed. While he was sleeping the neighbor came over. She just sat with me awhile, and we watched her 2 y/o play with teddy bears. She talked with the girls, and occasionally she would ask me something (through them). She offered to vacuum (embarrassing that it was that obvious that it was needed), but told her I'd do it later after DH woke up. She asked things that shouldn't have been any of her business - like how much rent I pay, and did I pay my GF for cutting grass. I wonder if she was angling to get me to pay her husband to cut the grass.
After she went home the girls stayed pretty late. Even GF stayed later than usual.
Also the supply delivery came; but it was a different driver than usual. He'd been before, but not the guy who does the morning route.
Emotions:
It was a difficult day; but at least part of it had nothing to do with DH or anyone else. One of the kittens accidently got in, and it took a lot of stress and all day to get him out. It annoyed me that the neighbor lady comes over, and if I don't have something for her to do, she just sits and visits. She's trying to help, but what she's doing is adding yet another layer to my stress ... feeling like I have to get up earlier and earlier to have everything "done" before people start just showing up. And yet, ti's still not the people I care about that are showing up or calling. DSS calls nearly every day; but I'm not really sure if he hears what I say or not. I tell him how his dad is doing; but no matter what I say - good day or bad - he'll say he just called to see how his dad is doing.
On a day to day basis, I'm "on call" 24 hours a day. I'm up from early morning to late at night, and have to try to fit all that needs to be done around his schedule and what I have to do for him. And yet, people want to just drop in. I sometimes get told "it doesn't matter" if I feel like my house isn't clean enough ... but they notice. So it does matter. And I don't understand why I'm expected to keep this big house spotless at all times, and do all that he needs done, and have myself showered and presentable at any time someone decides to show up at my door, and still be cheerful and polite no matter who shows up when.
Sometimes I don't know if I cry because I'm sad, or scared, or just tired!
Monday, August 5, 2013
Day 74
Sunday, August 4, 2013
Physical:
In some ways this was actually a bit better. It took awhile, and prodding, to get DH to take his morning pills. I later found one on the floor, but no telling when it came from. It's scary how many times that happens; but I don't know what to do about it. He's really not to a point where I can stand there and force him to take each one. He keeps saying he's going to do something (like take the pills) but then going back to sleep (at one point I went in just in time to take the cup of drink out of his hand before he dumped it all over himself!). Once he got up (and as usual, surprised and puzzled that his underwear and bed were wet), I let him get in the recliner since I knew DSS would be here later.
He sat in the chair all day ... probably around 6 hours. DSS helped me get him out before he left, and then DH sat in the wheelchair probably another hour to hour and a half. I think it was around 8:30 when he went back to bed. That was very early, but hopefully with no napping he was tired enough to sleep through.
Eating, however, is something else. His chair and the floor all around him is a mess. He doesn't seem to have a clue how much he's spilling/dropping. He did eat a sausage biscuit that I heated for him. But he barely touched his dinner. He kept saying he was eating, and it sat in front of him for hours. In the end, he ate a few pieces of meat only. He did eat a bowl of sherbert later; unfortunately, he claimed there were fruit flies in it. I can't see them, but I do know they're here (DIL gave me a recipe to get rid - no idea if it's working or not). And I don't know how they would get in his bowl unless they were buzzing around when I was fixing it. As I said, I can't even see them. :( He did get them out with a tissue and eat the rest of the sherbert.
When it was time for his evening pills, he was so sound asleep I couldn't get him to wake up enough to take them. I ended up putting each one into his mouth, and he finally did sip water and take them (but not without some coughing). Then he insisted on keeping the cup of water. No problem, it just won't be cold in the morning.
People:
TGF and her kids (plus one) got here an hour later than they were supposed to. She had planned to grill, but decided it was too late (after *I* had to buy a gas cannister for her grill), so used the oven. She experimented on us. Grilled meat (which she burned, but still tasted good); grilled green beans (which didn't get even close to hot enough, but tasted good), and pasta with Parmesean cream sauce (which was excellent, so the boys managed to gobble up most of it). DSS did come along later, and then stayed later after she had to leave to take one of the boys to football practice. The boys from next door and some cousins came over to play, but I didn't see the little girls.
Emotions:
I felt weepy most of the day. At least in part, later in the day, because I was showing TGF the spreadsheet I had created for "pre-planning". Obviously, I hope I have years and years to work out the plans, as well as figure out where the money will come from (once I got a price sheet and now have a rough idea of costs).
I also sent a copy of what I have so far to DIL, who said she would add some notes.
I do hope I'm being realistic, and not just in denial.
Physical:
In some ways this was actually a bit better. It took awhile, and prodding, to get DH to take his morning pills. I later found one on the floor, but no telling when it came from. It's scary how many times that happens; but I don't know what to do about it. He's really not to a point where I can stand there and force him to take each one. He keeps saying he's going to do something (like take the pills) but then going back to sleep (at one point I went in just in time to take the cup of drink out of his hand before he dumped it all over himself!). Once he got up (and as usual, surprised and puzzled that his underwear and bed were wet), I let him get in the recliner since I knew DSS would be here later.
He sat in the chair all day ... probably around 6 hours. DSS helped me get him out before he left, and then DH sat in the wheelchair probably another hour to hour and a half. I think it was around 8:30 when he went back to bed. That was very early, but hopefully with no napping he was tired enough to sleep through.
Eating, however, is something else. His chair and the floor all around him is a mess. He doesn't seem to have a clue how much he's spilling/dropping. He did eat a sausage biscuit that I heated for him. But he barely touched his dinner. He kept saying he was eating, and it sat in front of him for hours. In the end, he ate a few pieces of meat only. He did eat a bowl of sherbert later; unfortunately, he claimed there were fruit flies in it. I can't see them, but I do know they're here (DIL gave me a recipe to get rid - no idea if it's working or not). And I don't know how they would get in his bowl unless they were buzzing around when I was fixing it. As I said, I can't even see them. :( He did get them out with a tissue and eat the rest of the sherbert.
When it was time for his evening pills, he was so sound asleep I couldn't get him to wake up enough to take them. I ended up putting each one into his mouth, and he finally did sip water and take them (but not without some coughing). Then he insisted on keeping the cup of water. No problem, it just won't be cold in the morning.
People:
TGF and her kids (plus one) got here an hour later than they were supposed to. She had planned to grill, but decided it was too late (after *I* had to buy a gas cannister for her grill), so used the oven. She experimented on us. Grilled meat (which she burned, but still tasted good); grilled green beans (which didn't get even close to hot enough, but tasted good), and pasta with Parmesean cream sauce (which was excellent, so the boys managed to gobble up most of it). DSS did come along later, and then stayed later after she had to leave to take one of the boys to football practice. The boys from next door and some cousins came over to play, but I didn't see the little girls.
Emotions:
I felt weepy most of the day. At least in part, later in the day, because I was showing TGF the spreadsheet I had created for "pre-planning". Obviously, I hope I have years and years to work out the plans, as well as figure out where the money will come from (once I got a price sheet and now have a rough idea of costs).
I also sent a copy of what I have so far to DIL, who said she would add some notes.
I do hope I'm being realistic, and not just in denial.
Sunday, August 4, 2013
Day 73
Saturday August 3, 2013
I'm not actually sure why I'm bothering to keep this blog. I have 2 followers - and have no idea who either of them are. And it appears that only 1 person ever reads this.
I acknowledge it's probably boring to any and every random reader. And I seriously doubt I'll ever go back and reread any posts; unless for some odd reason I want to track progress.
I never get comments on any of my blogs; but I guess I can't complain, since I never leave comments either. But I must say, I don't because you have to fill in the "secret word" nonsense; and I simply can't read them. So to Google, I must be a robot. Perhaps my one reader is a robot too! LOL!
OK, the last few days:
Physical: DH seems about the same. He seems a bit lethargic, and it's hard to tell if he's just in a fog or bored or sleepy. He continues to *announce* that he's going to do this or that. His mind seems to be getting worse in that regard. And it seems to be getting harder to get him to process simple requests. Example: when trying to hold the oxygen tubing out of the way of wheels, he tries to help. He grabbed a handfull of tubing; unfortunately, where he got hold was the end that is closest to the machine - so I couldn't push him all the way up to his bed. And he could not understand when I kept asking him (eventually demanding!) to let go. When he finally did, he took his entire tubing and cannula off.
He also continues to be surprised at his incontinence. He isn't even aware any more if his clothes are wet. I do now have pull-ups; I've avoided putting them on him, but it's either that or laundrhy every day. I have a rubber backed sheet to protect the bed; but he tends to get his coveres wrapped around him - so the sheets and blanket have to be washed as well.
Since he really can't walk or even stand without help, I can't tell if he's getting weaker or not. The wheezing doesn't seem to be any worse; but then, I wonder just how fast I expect him to go "downhill" just because he's on hospice. (I think I'm terrified that they'll decide he's "improving" and drop him; and without the help I get from them, even though it is minimal right now, I don't think I could manage at all).
People:
On Friday the aide came; and the neighbor lady came over and cooked lunch. I thought it was good; he ate, but won't eat any more because it has peas in it.
On Saturday DS & family came for the day. DIL and DGD and I went out awhile (got my toenails done!!). DH was laying down, and I suspect DS was asleep too. DGD12 was here. The neighbor had offered to take my trash off, but never came by (unless he did and DGS didn't answer the door). Also the "other son" had said he was coming; but as far as I know, he never showed up either.
Emotions:
Up and down like a yo=yo. Exasperated, frustrated, depressed, exhausted ... they all run together.
It's a very odd thing. So many months we sad here alone. I couldn't leave him; but no one considered him "that bad". The family wasn't around all that much, except for DSS would (usually) come by one week night, plus his whole crew coming every Sunday for dinner. I understand why it's always here (at first because they don't even have a kitchen; and now because we wouldn't be trying to get DH out there anyway). But it's still exhausting to have them all (ALL those little boys) And this week we have to turn it around - for THEIR convenience. Not having everyone here so late at night will be fine; but I have less time to myself to do things too, and by night I'm too tired.
Anyway, my point is, all that lonely time; and then he got accepted into a hospice program. And suddenly we're never alone. I'm under even more stress, because I always feel like I have to get up early and have the house presentable at all times - because I have no idea who will show up when (which is also not fair; but I don't seem to be allowed any control). A lot of the "company" is from next door. The little girls come over nearly every day; but if I just don't feel up to having them, I just tell them and they're very nice about just going on home. But their mom comes several days, and even brought the preacher. Neither of us minds them wanting to come pray for us. But it tends to bother me that they insist on praying - demanding even - that he be healed. I do believe in miracles; I just don't think he is going to be one again. It tends to make me wonder - do they seriously expect God to cure EVERY person who is sick or hurt or even old?
Maybe my faith is too weak. Maybe I'm completely wrong. It just seems to me it would be more appropriate to pray for peace, comfort, acceptance, and strength.
I'm not actually sure why I'm bothering to keep this blog. I have 2 followers - and have no idea who either of them are. And it appears that only 1 person ever reads this.
I acknowledge it's probably boring to any and every random reader. And I seriously doubt I'll ever go back and reread any posts; unless for some odd reason I want to track progress.
I never get comments on any of my blogs; but I guess I can't complain, since I never leave comments either. But I must say, I don't because you have to fill in the "secret word" nonsense; and I simply can't read them. So to Google, I must be a robot. Perhaps my one reader is a robot too! LOL!
OK, the last few days:
Physical: DH seems about the same. He seems a bit lethargic, and it's hard to tell if he's just in a fog or bored or sleepy. He continues to *announce* that he's going to do this or that. His mind seems to be getting worse in that regard. And it seems to be getting harder to get him to process simple requests. Example: when trying to hold the oxygen tubing out of the way of wheels, he tries to help. He grabbed a handfull of tubing; unfortunately, where he got hold was the end that is closest to the machine - so I couldn't push him all the way up to his bed. And he could not understand when I kept asking him (eventually demanding!) to let go. When he finally did, he took his entire tubing and cannula off.
He also continues to be surprised at his incontinence. He isn't even aware any more if his clothes are wet. I do now have pull-ups; I've avoided putting them on him, but it's either that or laundrhy every day. I have a rubber backed sheet to protect the bed; but he tends to get his coveres wrapped around him - so the sheets and blanket have to be washed as well.
Since he really can't walk or even stand without help, I can't tell if he's getting weaker or not. The wheezing doesn't seem to be any worse; but then, I wonder just how fast I expect him to go "downhill" just because he's on hospice. (I think I'm terrified that they'll decide he's "improving" and drop him; and without the help I get from them, even though it is minimal right now, I don't think I could manage at all).
People:
On Friday the aide came; and the neighbor lady came over and cooked lunch. I thought it was good; he ate, but won't eat any more because it has peas in it.
On Saturday DS & family came for the day. DIL and DGD and I went out awhile (got my toenails done!!). DH was laying down, and I suspect DS was asleep too. DGD12 was here. The neighbor had offered to take my trash off, but never came by (unless he did and DGS didn't answer the door). Also the "other son" had said he was coming; but as far as I know, he never showed up either.
Emotions:
Up and down like a yo=yo. Exasperated, frustrated, depressed, exhausted ... they all run together.
It's a very odd thing. So many months we sad here alone. I couldn't leave him; but no one considered him "that bad". The family wasn't around all that much, except for DSS would (usually) come by one week night, plus his whole crew coming every Sunday for dinner. I understand why it's always here (at first because they don't even have a kitchen; and now because we wouldn't be trying to get DH out there anyway). But it's still exhausting to have them all (ALL those little boys) And this week we have to turn it around - for THEIR convenience. Not having everyone here so late at night will be fine; but I have less time to myself to do things too, and by night I'm too tired.
Anyway, my point is, all that lonely time; and then he got accepted into a hospice program. And suddenly we're never alone. I'm under even more stress, because I always feel like I have to get up early and have the house presentable at all times - because I have no idea who will show up when (which is also not fair; but I don't seem to be allowed any control). A lot of the "company" is from next door. The little girls come over nearly every day; but if I just don't feel up to having them, I just tell them and they're very nice about just going on home. But their mom comes several days, and even brought the preacher. Neither of us minds them wanting to come pray for us. But it tends to bother me that they insist on praying - demanding even - that he be healed. I do believe in miracles; I just don't think he is going to be one again. It tends to make me wonder - do they seriously expect God to cure EVERY person who is sick or hurt or even old?
Maybe my faith is too weak. Maybe I'm completely wrong. It just seems to me it would be more appropriate to pray for peace, comfort, acceptance, and strength.
Friday, August 2, 2013
Day 71
Thursday July 31, 2013
I only have one "incident" I want to record for this day. It sort of ties together with his general attitude, and I'm just at a loss how to handle it.
DH had been lying down. DSS got here, and we were sitting in the living room talking. DH woke up and heard us, so decided to come in the room and join us. DSS spotted him in the bedroom doorway!!! He had gotten off the bed and to the door. There are things for him to hold on to, although the getting off the bed in itself was an accomplishment.
The thing is: I don't know whether to be mad (because I'm wearing myself out lifting him up and down and yet he does it by himself when he *wants* to) or scared (because he doesn't have any grasp of what he can or can't do and that was a huge fall risk) or sad (because he really doesn't remember that it was not a safe thing to do).
It ties together with his stubborn determination to not ask for help. And I genuinely cannot tell how much of that is from the dementia, and how much is his underlying hard-headedness.
He so frequently sits there in the living room like he's just in a fog. People come over and have conversations, and he rarely says anything unless asked a specific question. I turn the TV on, but he just stares at it absently (and can't remember how to work the remote, so he usually doesn't try to change the channel).
Several times during the day he was pushing his hands on the arms of the wheelchair like he was going to get up. When I'd ask, he'd say he decided to sit in the recliner. And I'd tell him - again - that if he sits in the recliner he'll just have to stay in it, maybe all night, because I can NOT get him out of it by myself. And he will look at me like I'm the evil queen. So how much of his sitting there blankly is a form of pouting because he has decided I'm being mean?
I know, I'm not following my new format. I'm just putting down what I remember.
The neighbor came over again. She brought her oldest daughter, and their preacher. The daughter was translater (much faster at it than the little girls). It's very nice that they want to pray for him, for us.
But now I'm wondering if there's something really really wrong with me. I should be glad, I should be jumping right in with "Amen". But all I feel is a pervading sadness. She picked up on that and admonished me (and I told her I accept God's will, but I'm still only human and can't control the sadness). The thing is, they seem to be completely convinced that they can demand a "miraculous cure". And yes, I do know they happen. I just don't think it will. We've already had multiple miracles. Do they really believe he will just live forever, that everyone will, if they just keep praying for miracles? To me it just would be better to pray for peace and acceptance; and praise God that DH is not in pain, and not actually unhappy most of the time. He's allowed to do what he wants other than what I'm just not physically capable of helping with.
So is there something wrong with me? Is it horrible of me to want them to stop being so determined to pray his illness away? I'd be glad to have him back the way he was 30 years ago. That's not going to happen. If his lungs suddenly miraculously stopping failing - his kidneys still would not work. And worse, the dementia is caused by blood vessles "dying off" ... they can't come back, it's not reversable. So he's not going to be "miraculously cured" ... and regardless, that will most likely continue to get worse.
Maybe my faith just isn't strong enough. But I just can't help but resent people coming into my house - even though I know they mean well, and completely believe what they're doing - and trying to tell me how to feel. I'm afraid that as long as DH does not get better (and again, is my faith not strong enough? I don't believe he will get better - it's not that I don't believe God can do anything; it's just that I don't believe that is His plan at this point), they'll just keep coming over more and more, and trying to pray harder. Maybe they need to learn acceptance?
I don't know. I do not want to allienate good neighbors. And DH doesn't mind their coming over. I'm OK with them coming (as long as they don't expect to disrupt too many days); but just pray for God's will to be done instead of demanding miracles. And don't attack me (even gently) for my feelings.
I don't know if I'm the one with a bad attitude or if I'm just plain worn out.
I only have one "incident" I want to record for this day. It sort of ties together with his general attitude, and I'm just at a loss how to handle it.
DH had been lying down. DSS got here, and we were sitting in the living room talking. DH woke up and heard us, so decided to come in the room and join us. DSS spotted him in the bedroom doorway!!! He had gotten off the bed and to the door. There are things for him to hold on to, although the getting off the bed in itself was an accomplishment.
The thing is: I don't know whether to be mad (because I'm wearing myself out lifting him up and down and yet he does it by himself when he *wants* to) or scared (because he doesn't have any grasp of what he can or can't do and that was a huge fall risk) or sad (because he really doesn't remember that it was not a safe thing to do).
It ties together with his stubborn determination to not ask for help. And I genuinely cannot tell how much of that is from the dementia, and how much is his underlying hard-headedness.
He so frequently sits there in the living room like he's just in a fog. People come over and have conversations, and he rarely says anything unless asked a specific question. I turn the TV on, but he just stares at it absently (and can't remember how to work the remote, so he usually doesn't try to change the channel).
Several times during the day he was pushing his hands on the arms of the wheelchair like he was going to get up. When I'd ask, he'd say he decided to sit in the recliner. And I'd tell him - again - that if he sits in the recliner he'll just have to stay in it, maybe all night, because I can NOT get him out of it by myself. And he will look at me like I'm the evil queen. So how much of his sitting there blankly is a form of pouting because he has decided I'm being mean?
I know, I'm not following my new format. I'm just putting down what I remember.
The neighbor came over again. She brought her oldest daughter, and their preacher. The daughter was translater (much faster at it than the little girls). It's very nice that they want to pray for him, for us.
But now I'm wondering if there's something really really wrong with me. I should be glad, I should be jumping right in with "Amen". But all I feel is a pervading sadness. She picked up on that and admonished me (and I told her I accept God's will, but I'm still only human and can't control the sadness). The thing is, they seem to be completely convinced that they can demand a "miraculous cure". And yes, I do know they happen. I just don't think it will. We've already had multiple miracles. Do they really believe he will just live forever, that everyone will, if they just keep praying for miracles? To me it just would be better to pray for peace and acceptance; and praise God that DH is not in pain, and not actually unhappy most of the time. He's allowed to do what he wants other than what I'm just not physically capable of helping with.
So is there something wrong with me? Is it horrible of me to want them to stop being so determined to pray his illness away? I'd be glad to have him back the way he was 30 years ago. That's not going to happen. If his lungs suddenly miraculously stopping failing - his kidneys still would not work. And worse, the dementia is caused by blood vessles "dying off" ... they can't come back, it's not reversable. So he's not going to be "miraculously cured" ... and regardless, that will most likely continue to get worse.
Maybe my faith just isn't strong enough. But I just can't help but resent people coming into my house - even though I know they mean well, and completely believe what they're doing - and trying to tell me how to feel. I'm afraid that as long as DH does not get better (and again, is my faith not strong enough? I don't believe he will get better - it's not that I don't believe God can do anything; it's just that I don't believe that is His plan at this point), they'll just keep coming over more and more, and trying to pray harder. Maybe they need to learn acceptance?
I don't know. I do not want to allienate good neighbors. And DH doesn't mind their coming over. I'm OK with them coming (as long as they don't expect to disrupt too many days); but just pray for God's will to be done instead of demanding miracles. And don't attack me (even gently) for my feelings.
I don't know if I'm the one with a bad attitude or if I'm just plain worn out.
Thursday, August 1, 2013
Day 70
Wednesday July 31, 2013
Physical:
This was a much easier day. There were no trips anywhere, so minimal getting up and down. I let DH stay in bed until the aide came. Actually, the aide and the nurse got there at the same time, 11ish. That worked well for him. After the nurse checked vitals, we talked while the aide got him bathed.
I didn't ask about the pills, since it seemed clear that wasn't an option. She brought a pill box last week, which told me she had talked to the SW; but setting them up, or pre-filling syringes, never came up. I guess I should ask at some point. We did discuss what meds they cover, and she mentioned that everything in the "comfort kit" is covered. I haven't even looked to see wh's in it. They cover Dulcolax, which I have a half full bottle of; Ambien, which doesn't do him any good (and she is supposed to be checking on an alternate to that); and Paxil, which I just got refilled. But on the Paxil she's going to check with the hospice doctor to see if we can stop it - he's never thought it did him any good. She's also going to have the doctor review his meds to see if there are any others that aren't really necessary at this point.
He was up for approximately his usual 3 hours and then wanted to lay back down. He was only up after that long enough to sit on the commode.
He ate a pork chop for lunch, but only ate half of one for supper. I'd had to wake him up and he was convinced it was morning. He did eat a piece of cake at lunch, but didn't want any at night this time. And he refused to eat any sides; but before lunch he did eat a nectarine.
People:
As I mentioned, the nurse and the aide came by. I have a list started of questions for the nurse for next time.
Not long after they left, his cousin and her husband came by. They'd been to their (his and cousin's) grandmother's funeral. I didn't even know she'd died; but she was well over 100. I'm guessing his sister didn't tell us because she knew we couldn't go. Then again, she may have mentioned it Monday and I just missed the reference. I would have sent flowers I guess, if I'd known.
There were no more visitors, not even the little girls.
The insurance agent came by though, for me to sign yet another form.
The *other* son called, may come visit. And the *good* son's best friend's mother called, she also wants to come visit. I do appreciate knowing when people are coming!
Emotional:
I had a calmer day. It seems I have better days when the nurse comes, because I can tell her my concerns and she doesn't make me feel like I'm being a drama queen! At night I got a bit frustrated with him. I had to wake him up to take the last set of pills, and he was acting weird. Instead of just taking them, he kept trying to fish them out of the cup with his fingers. He wanted to know how many so he took the right amount. And he kept turning the cup over, so several got dropped. I ended up sticking most of them into his mouth! I definately have to come up with another system for night. Maybe I'll try getting him to pick them up one at a time from my hand.
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