Tuesday, July 30, 2013
Physical:
DH had a clinic appointment, so today was a bit rough. He had to get up, get dressed, get in the car and out again at the clinic. It took around an hour and a half (because they, like everyone else, assume we have absolutely nothing to do and can't be bothered with letting us know what they scheduled, such as giving him an iron transfusion) before we could leave. During that time I had a brief (meaningless in my opinion) meeting with the nephrologist. He's nice enough and all, I just didn't see the point. I had long talks with the AD, a very nice girl (who had the good taste to be wearing the same colors I was and cute shoes too). It's very odd, all things considered, but his labs are actually excellent. His body in general is failing; but the dialysis is doing a better job than his real kidneys did. And even though he barely eats any more, his values are all in the good-to-acceptable range. And yet, when we were finally ready to leave, he didn't even know where we were. So again, the struggle to get him in the car. He waited while I ran in the pharmacy and grocery store. Then another struggle to get him out of the car. He's just not able to stand, even with help. His knees buckle, and he tries to sit down - even when there's nothing behind him to sit on. And his hands grab hold of the car and refuse to let go (so that I can get him turned around so that the wheelchair is behind him). It is exhausting and frustrating. Once I got him in the house, he was "not there". He wouldn't put the oxygen canula on, and couldn't say anything that made sense. Then he told me to go away, he was going to get on the bed. I did finally get him on the bed; and later (a few minutes) I went back and just put the canula on him; he promptly went to sleep! Later in the evening he was a little disoriented, but not so confused. (Confused is not really a good word, but I don't have one that is. He knows what he's saying, it just doesn't make sense to me.) I got him up later to eat supper while I got his bed made (had to strip off damp sheets in the morning, hadn't had time to make it then plus it needed to dry a bit. Sprayed the mattress pad with Lysol before we left) and get dialysis set up. I had multiple phone calls during that time, but got done. He chose to go on to bed around 8:30. I'm pretty sure he slept most of the night.
People:
Besides all the various people at the clinic, he actually didn't see anyone else except (briefly) my girlfriend. She was working in the yard when we got home, but since I took him straight back to his room, he didn't see her again. She is a huge help to me - because it doesn't bother her at all when I get stressed out and scream at her!! She just said sit down and eat cake!!
In the evening I had a long phone conversation with brother and sister-in-law in TX. That was so nice. Then DH's *other* son called, but the cordless phone died before they could say much more than hello. He will call back another night. (I since found out that he only called because #1 son called their mothr and told her of DH's condition and that *other* son needed to call his father!).
Also, the clinic nurse, whom I didn't get to see today, called. She's trying to work out a way to have to bring DH into the clinic fewer times. Even if everything is worked out, he'll most likely still have to go in twice a month - once for labs (blood drawn) and once to see the doctor (per Medicare requirements). She's trying to work out at least for the hospice nurse to give the EPO shots he gets every week.
The little girls came over, and I told them it was a bad day so to not come over to play. They came back later with cards they made for us! Sweet girls, and nice that they "get it" when I say to go away!
Emotions:
Because it was a rough day physically, it made for a very rough day emotionally. I cried a lot - from exhaustion, frustration, sadness - you name it.
Talking to family was great; and my sister-in-law understood a great deal of what I'm going through, as her mother lived with them and was on hospice in the end. She even understood the end-of-the-day craving for chocolate!!
The day ended fairly calmly, with DH getting to bed a bit early and no new drama.
Wednesday, July 31, 2013
Monday, July 29, 2013
Day 67
Sunday, July 28, 20
Physical:
He spent more time in bed today. I used to push harder to make him be "up" more; but I've quit stressing over it so much. He's not all that long before being completely bed-ridden (according to his nurse). So, he didn't get up until nearly 3:30. He sat on the commode awhile; but I think that may have been just habit. Once he got up, I couldn't get him interested in TV (or anything). He just sat there. The TV was on, but he didn't really pay it any attention. Since he hadn't eaten all day, I decided we couldn't wait later by 5:00, so fixed him some supper. All he would eat was one chicken leg and 1/2 ear of corn. I don't remember the time, but think it was around 7ish I gave up and let him get back in bed - he was trying to figure out how to move the wheelchair by himself (which he can't do).
I went back later and connected dialysis - had to wake him up to get him settled "in" bed, not just "on" it. He was very sound asleep when I took the 10:00 pills; and during the night I could hear him snoring a lot.
People:
The little girls came in the morning, but I sent them away. They came back in the late afternoon. They want to "help" so much, but there just isn't much they can do. I don't remember what time TGF got there, but I'm thinking it was after 6:00. DSS never did come - he was tied up at the shop, then went home and cut grass. DH was disappointed at that. It's kind of a shame, because it meant DH had to put up with a lot of kids tht get on his nerves, but not his son. DSS will come Monday, but there's a lot going on so DH might be too tired then.
TGF helped me with several things that I can't see well enough to do on my own. We got rid of a huge amount of out-of-date medicines, and cleaned out one of the refrigerators. Again, lots of out-of-date stuff - because I can't read the dates, and because things get shoved to the back, I can't see them, so forget they're there. No more than DH eats anymore, not much use in having much in there anyway.
Emotional:
For some reason it was a hard day. I suspect it's at least partly because of day after day after day after day of gray gloomy weather. Even when it doesn't rain, even when the prediction is for "partly" (as opposed to "mostly") cloudy, there's no sunshine to be seen. I don't deal with it very well. But I didn't even turn on lights. I just felt so blue and weepy all day. DH is so visably fading, and there's nothing I can do about it. It just feels like I'm not doing enough, or doing everything wrong. Should I *make* him get up - then he just sits in the wheelchair (gets uncomfortable) and nods off to doze anyway. He thinks he lays awake all night (actually he doesn't), but for years and years I've tried - completely unsuccessfully - to convince him that he just can't sleep most of the day and then expect to sleep at night too.
There really are things I could be doing. And things I should be doing. I am just not motivated to do much of anything except stress about whether my house is clean when people keep coming over to see DH (way too early in the morning!!).
Physical:
He spent more time in bed today. I used to push harder to make him be "up" more; but I've quit stressing over it so much. He's not all that long before being completely bed-ridden (according to his nurse). So, he didn't get up until nearly 3:30. He sat on the commode awhile; but I think that may have been just habit. Once he got up, I couldn't get him interested in TV (or anything). He just sat there. The TV was on, but he didn't really pay it any attention. Since he hadn't eaten all day, I decided we couldn't wait later by 5:00, so fixed him some supper. All he would eat was one chicken leg and 1/2 ear of corn. I don't remember the time, but think it was around 7ish I gave up and let him get back in bed - he was trying to figure out how to move the wheelchair by himself (which he can't do).
I went back later and connected dialysis - had to wake him up to get him settled "in" bed, not just "on" it. He was very sound asleep when I took the 10:00 pills; and during the night I could hear him snoring a lot.
People:
The little girls came in the morning, but I sent them away. They came back in the late afternoon. They want to "help" so much, but there just isn't much they can do. I don't remember what time TGF got there, but I'm thinking it was after 6:00. DSS never did come - he was tied up at the shop, then went home and cut grass. DH was disappointed at that. It's kind of a shame, because it meant DH had to put up with a lot of kids tht get on his nerves, but not his son. DSS will come Monday, but there's a lot going on so DH might be too tired then.
TGF helped me with several things that I can't see well enough to do on my own. We got rid of a huge amount of out-of-date medicines, and cleaned out one of the refrigerators. Again, lots of out-of-date stuff - because I can't read the dates, and because things get shoved to the back, I can't see them, so forget they're there. No more than DH eats anymore, not much use in having much in there anyway.
Emotional:
For some reason it was a hard day. I suspect it's at least partly because of day after day after day after day of gray gloomy weather. Even when it doesn't rain, even when the prediction is for "partly" (as opposed to "mostly") cloudy, there's no sunshine to be seen. I don't deal with it very well. But I didn't even turn on lights. I just felt so blue and weepy all day. DH is so visably fading, and there's nothing I can do about it. It just feels like I'm not doing enough, or doing everything wrong. Should I *make* him get up - then he just sits in the wheelchair (gets uncomfortable) and nods off to doze anyway. He thinks he lays awake all night (actually he doesn't), but for years and years I've tried - completely unsuccessfully - to convince him that he just can't sleep most of the day and then expect to sleep at night too.
There really are things I could be doing. And things I should be doing. I am just not motivated to do much of anything except stress about whether my house is clean when people keep coming over to see DH (way too early in the morning!!).
Sunday, July 28, 2013
Day 66
Saturday July 27, 2013
I skipped a day as there was nothing of note to write.
Physical:
While he continues to grow weaker, we've had 2 fairly good days. No falls, and we're (well, ME) getting better at learning how to transfer. He does tend to forget sometimes that he needs my help. I had to give up getting him into the recliner unless there will be someone heere to help him get out.
He occasionally asks to use the commode (although some of those times he thinks he's going to just go in the regular bathroom; and occasionally gets annoyed with me when I don't "let" him); but he gets more and more incontinent, especially at night. I requested some Depends (or equivilent), but what I got were adult diapers. I've not yet figured out how to get one on him. And the fact that he even allows me to try (no comments at all) speaks volumes about his mental status. His body doesn't work on a regular basis any more either - but that could be as much as anything because he has practically no appetite any more.
People:
On Friday the aide came, got him washed up. The nurse came by to bring the official DNR form to be posted, and we talked a bit. The neighbor children have been coming over every day, to the point that it's a little annoying. But they're nice kids, and they mean well (keep asking if they can help me with something. Sadly, there's really very little they can do, as a lot of what keeps me busy is DH's care)). On Friday the mom came; and since there was nothing she could do to "help" me, she cooked lunch. It was actually dinner, and she's a good cook.
Also on Friday, in the morning, DH's brother camee to visit. I believe he was a bit shocked; after all, he hasn't seen DH since last october. He (brother) is recently recovering from a bout of heat stroke. Seems none of those kids (DH is one of 4) are very healthy. I'm ever so grateful that mine are!
Emotional:
I've had some very weepy days lately. It's not as much his physical decline as the mental. I think he's doing OK and suddenly he will say something that lets me know his mind is somewhere else. Last night he'd had a nap and I was trying to get him to wake up enough to eat some supper. He seems alert and oriented; and then he asked me "is there a bathroom in this place?". I asked where he menat, and he was pointing towards the back wall. I told him his bedside commode was right there, and asked where he thought he was. He seemed puzzled that I asked - he, of course, was in the art room at the aquarium. It seemed to upset him when I told him he was in his own room at home ... not because I told him;, but because he wasn't where he thought he was. As soon as I said where he was, he realized it. But that doesn't always happen.
So far he's not been to the point of not knowing anyone. He's very grateful and happy when people come to visit him. In his more lucid moments he keeps thanking me for what I do.
At one point (long before his mind began going so much) I tried to tell him that it hurt my feelings to be appreciated for all I do for him - I'd rather simply be appreciated, or at least appreciated for all I do. But it was only "for him". He never did understand that.
Now most of the time I bounce between depressed and weepy, and just tired and robotic.
It's good that people are coming to visit him, though it is a little annoying that they've been ignoring him for so long (and it's been a long time since we were able to be going anywhere, long before this hospice); but now keep showing up. I wish they would have bothered to visit when he was more able to appreciate it, and do things together - or at least capable of carrying on a conversation.
And stupid as it may sound, I'm still lonely. People come to see him. We have the nurse once a week (and she'd come more if he needed something), and the aide 3 times a week. I enjoy talking to them, especially the aide because we talk about some similar interests. I have a friend who says how much she cares ... but she rarely calls me (even though I pay for her phone); and she hasn't been able to come over because of the weather. She's found her a new friend who can afford to pay better than me, and has a car, and apparently no conflicts. She told me this new friend will take us to the fair this year .. but I really can't see me being able to leave DH with someone for a whole day. That would include his meds, his dialysis -nope, can't see that happening. They will go without me.I have another friend who keeps nagging me about wanting to come visit .. yet my schedule and hers don't seem to match up. I'm not as relaxed wheen she's here; and she's not at all interested in how I'm feeling. She only wants to tell me her experiences (when her husband died, and her mother was on hospice but in a facility), and makes it sound like I'm doing everything wrong.
My brothers and sisters are all very busy, and have no time to email or call, much less visit. And the more people that show up here, the more alone I feel.
Friday, July 26, 2013
Day 64
Thursday July 25, 2013
Physical:
There were no falls again today. I didn't even try to get him into the recliner, because I knew there would be no one around when it was time to take him out. I got him up in the morning, and back down for a nap; DSS was here to help me get him up after napping.
There was some minor confusion: he didn't remember talking to DGS the night before. But there was no "major" episode.
Eating, however, appears to be becoming an issue. At lunch he only ate half a pork chop, which is normally one of his favorite things. Dinner got late - again - with various people in and out. And because of his lack of appetite, I fixed him a pot pie. This is normally something he likes a lot. He*ate* most of it .. only I later discovered that a lot of what got gone off his plate actually hit the floor. Sitting in the wheelchair makes it a bit difficult to pull any sort of surface close to him. One time we moved the over-bed tray out. That's a lot more complicated, but I think I'll have to go back to that anyway. He knew he was dropping and spilling (but not how much), but he just couldn't help it.
Mental:
If there were any strange things going through his mind, he didn't express them. The only thing was the memory loss. Short term memory is pretty much gone, he didn't even remember talking to his beloved DGS.
Emotional:
It was a very rough day for me, and I'm not even sure why. I guess it started with his sister coming over so early. I had tried very hard to get house cleaning done. It frustrates and infuriates me for people to pop in and say it doesn't matter. It matters to ME. And I'm really tired of my feelings not mattering. Nevertheless, I got some things done. I didn't get vacuuming done. It's really hard ... DH is either sleeping or watching TV, so when do I do it???
The little girls next door are nice, and seem well behaved. But I don't especially want them to just start coming over and spending every day here. I don't like to hurt people's feelings, so I tend to put up with things I probably shouldn't. And I have certainly noticed that the more tired I get, the more weepy I get. Several days of getting up in the middle of the night for the alarm, and then waking up too early, are really taking a toll on me. I've still not heard anything about getting a volunteer, so I'm now wondering if that's going to happen.
The social worker is supposed to drop by on Friday, hopefully I can remember to ask her.
Physical:
There were no falls again today. I didn't even try to get him into the recliner, because I knew there would be no one around when it was time to take him out. I got him up in the morning, and back down for a nap; DSS was here to help me get him up after napping.
There was some minor confusion: he didn't remember talking to DGS the night before. But there was no "major" episode.
Eating, however, appears to be becoming an issue. At lunch he only ate half a pork chop, which is normally one of his favorite things. Dinner got late - again - with various people in and out. And because of his lack of appetite, I fixed him a pot pie. This is normally something he likes a lot. He*ate* most of it .. only I later discovered that a lot of what got gone off his plate actually hit the floor. Sitting in the wheelchair makes it a bit difficult to pull any sort of surface close to him. One time we moved the over-bed tray out. That's a lot more complicated, but I think I'll have to go back to that anyway. He knew he was dropping and spilling (but not how much), but he just couldn't help it.
Mental:
If there were any strange things going through his mind, he didn't express them. The only thing was the memory loss. Short term memory is pretty much gone, he didn't even remember talking to his beloved DGS.
Emotional:
It was a very rough day for me, and I'm not even sure why. I guess it started with his sister coming over so early. I had tried very hard to get house cleaning done. It frustrates and infuriates me for people to pop in and say it doesn't matter. It matters to ME. And I'm really tired of my feelings not mattering. Nevertheless, I got some things done. I didn't get vacuuming done. It's really hard ... DH is either sleeping or watching TV, so when do I do it???
The little girls next door are nice, and seem well behaved. But I don't especially want them to just start coming over and spending every day here. I don't like to hurt people's feelings, so I tend to put up with things I probably shouldn't. And I have certainly noticed that the more tired I get, the more weepy I get. Several days of getting up in the middle of the night for the alarm, and then waking up too early, are really taking a toll on me. I've still not heard anything about getting a volunteer, so I'm now wondering if that's going to happen.
The social worker is supposed to drop by on Friday, hopefully I can remember to ask her.
Thursday, July 25, 2013
Day 63
Wednesday, July 24, 2013
Physical: There were no falls. At different times I had help with getting him moved from one place to another. When it was his "normal" time to get up I was dealing with the insurance agent, so I just took his pills and disconnected the dialysis. About the time I was going back to help him dress, the aide called. So we decided he could just stay in bed and wait for her. That was a good decision, as she was earlier than expected. After he was washed up and dressed, she and I together got him into the wheelchair, and then into his recliner.
Later in the afternoon I was not able to get him out of the recliner, but I persuaded him to at least put the footrest up (he does Not like his feet up like that) and he napped. When the agent came by to pick up a form I'd had to print and sign, he helped me get DH into the wheelchair. From there I got him back on the bed for a nap. Later he wanted to sit on the commode. He was unsuccesful; I'm rather glad, because I later discovered he'd never taken his underwear off (the aide had gotten an old pair, too small, out of the drawer; when he sat down I couldn't tell).
Around that time, he did have a "minor" spell of nonsense. I had told him earlier that I had gotten a rubber backed sheet for when he gets his bath on the bed. He told me he wanted the rubber sheet to make a sail for a submarine. And when our DGS called, he told DGS that he was "trying outmy new rubber toilet paper".
After he got back in bed, I brought him a pork chop - usually one of his favorite things. It was around 7:30 by then, later than we usually eat. But he thought it was morning, and said it was too early to eat. He never ate more than half of it. He was asleep before I even finished getting the dialysis set up and connected. I doubt he slept all night, but at least the alarm only went off once.
People:
It was a totally crazy day for me; but he only had to deal with a few people. The aide, of course, getting him clean and dressed; the agent who helped me get him out of the recliner; and talking to his DGS.
For me there were several phone conveersations with DSS, one long one with DS, and one with DGS. the agent, the aide, the nurse stopped by, and the sweet little girls from next door came by. And I had quite a few email exchanges with DIL, TGF, a girlfriend, and a secretary.
Emotional:
It's been quite a roller coaster. I was weepy most of the day, but not even sure if it was from being tired, overwhelmed, frustrated, or just sad.
Physical: There were no falls. At different times I had help with getting him moved from one place to another. When it was his "normal" time to get up I was dealing with the insurance agent, so I just took his pills and disconnected the dialysis. About the time I was going back to help him dress, the aide called. So we decided he could just stay in bed and wait for her. That was a good decision, as she was earlier than expected. After he was washed up and dressed, she and I together got him into the wheelchair, and then into his recliner.
Later in the afternoon I was not able to get him out of the recliner, but I persuaded him to at least put the footrest up (he does Not like his feet up like that) and he napped. When the agent came by to pick up a form I'd had to print and sign, he helped me get DH into the wheelchair. From there I got him back on the bed for a nap. Later he wanted to sit on the commode. He was unsuccesful; I'm rather glad, because I later discovered he'd never taken his underwear off (the aide had gotten an old pair, too small, out of the drawer; when he sat down I couldn't tell).
Around that time, he did have a "minor" spell of nonsense. I had told him earlier that I had gotten a rubber backed sheet for when he gets his bath on the bed. He told me he wanted the rubber sheet to make a sail for a submarine. And when our DGS called, he told DGS that he was "trying outmy new rubber toilet paper".
After he got back in bed, I brought him a pork chop - usually one of his favorite things. It was around 7:30 by then, later than we usually eat. But he thought it was morning, and said it was too early to eat. He never ate more than half of it. He was asleep before I even finished getting the dialysis set up and connected. I doubt he slept all night, but at least the alarm only went off once.
People:
It was a totally crazy day for me; but he only had to deal with a few people. The aide, of course, getting him clean and dressed; the agent who helped me get him out of the recliner; and talking to his DGS.
For me there were several phone conveersations with DSS, one long one with DS, and one with DGS. the agent, the aide, the nurse stopped by, and the sweet little girls from next door came by. And I had quite a few email exchanges with DIL, TGF, a girlfriend, and a secretary.
Emotional:
It's been quite a roller coaster. I was weepy most of the day, but not even sure if it was from being tired, overwhelmed, frustrated, or just sad.
Wednesday, July 24, 2013
Day 62
I'm going to try doing this a little different, so maybe it won't be quite so disjointed and rambling.
This is for Tuesday, July 23, 201
Physical:
There were no problems during the night. Since the nurse got here right at 10:00 (time I usually get him up), she did her eval while he was still in bed. His sat levels were 93% with the oxygen, so down. After she left, when trying to get him into his wheelchair, he had another fall. This time he, the wheelchair, the walker that was too close by, and me all went down. I finally had to call DSS to come help get him up.
He sat in the wheelchair in the living room long enough for me to get his bed changed, and to eat some lunch (spaghetti). He napped for a few hours, and then decided he wanted to get up for awhile. We got him to his recliner, and he stayed there until 9:00. It took over half an hour to get him out of the recliner and back into the wheelchair - and issue I knew was going to be a problem, but he just can't sit comfortably anywhere else. He then had to use the commode. It was after 10:00 before I finally got him into bed and the dialysis hooked up.
People:
The hospice nurse got here at 10:00. She checkd over DH, did vitals. Then she and I sat in the living room to talk. She commented that he is noticably declining - in addition to the lowering of sats, he wheezes and "whistles" almost all the time. She answered a lot of my questions, and made notes to check on things she couldn't answer right away.
After she left, while DSS was here, the landlord finally sent someone to repair the roof where it leaks. We won't know until another hard rain how well they did. And then the phone company sent men to bury the new phone cable a previous repair man had run. No one will go under the house, so he had draped it across the bushes in front. These guys dug a trench all along the driveway, across the front yard, and then down the other side. In the process the moved sprinklers which they didn't bother to replace; and the broke the kitchen/laundry drain, and I had to stop the washer until they fixed it. They never even told me when they were done.
Still later, the social worker came by. I had planned to go to the grocery store when TGF got here, so that plan went on hold for 2 more days. The SW is a very nice young girl, and was able to give me more helpful information. I had more questions that she is going to research. She had some suggestions that will be enormously helpful - for example, when the nurse comes once a week she can set up the week's pills!! I will no longer have to stress over that, worrying that I've done something wrong because of not seeing what I'm doing well enough.
Emotions
I got a little weepy talking to the nurse, and much more so talking to the SW. I honestly don't know if I'm refusing to accept the reality of the situation, or if he isn't as bad as the impressions. He's extremely weak; and his dementia is worse (the nurse said he has "sundowners syndrom"). His breathing is worse, as is the cough. The nurse said it's likely the lung issues and/or kidney failure (despite the dialysis) will be what fails him. And there's always the possibility that he'll have another heart attack. He's had 2 that no one - including him - even knew he had at the time; and obviously, he survived them. I'm reasonably sure he's had another stroke fairly recently; the nurse agrees it's a strong possibility. But knowing (or suspecting) that doesn't change his condition anyway.
Sometimes I worry, sometimes I get annoyed. I cry a lot, and I don't know if it's depression or just plain exhaustion.
Tuesday, July 23, 2013
Day 61
There have been no more falls in the last few days. On Sunday he got off the bed ... I don't know if he fell or got off on purpose. He'd been napping, and when I went back to check on him, he was on his knees. He insisted he was looking for something. He actually got back on by himself.
Sunday night, however, was rough. He woke up (and sat on tubing, causing the alarm to go off, which of course got me up) around 4 AM. I hesitate to say he was "confused" or "disoriented", yet I don't know what to call it. The conversation was sort of like this:
Me: What are you doing?
Him: Waiting for someone to get back.
Me: Why
Him: So I can go home.
Me: And where are you now?
Him: At your house (said in a tone that implied I was asking pretty dumb questions).
Me: So we've lost 30 plus years of marriage and are now back to separate homes?
Him: (puzzled) No. What did the doctor say?
Me: It's 4 in the morning. Don't be worrying about doctors and houses. Go back to sleep.
Him: (as I was walking out the door) Betty is going to be wondeering where I am.
It took me over an hour to get back to sleep (he did not have any trouble at all!). Then I had to get back up at 6:30 because it was supply delivery day. So, anything else that happened all day was shaded by my being so very tired.
At 9:30 he called me. Now, "normal" is to go in about 10:00, take his B/P, disconnect the dialysis, change the bandage on his catheter site, then put his pills and protein drink where he can reach. After all that he gets dressed (or goes back to sleep). So, I go back and he's semi sitting on the side of the bed (he actually can't sit up at all without some sort of support, or else he must be holding on to something, such as a railing). He asked me to hand him his jeans. Why? So he can get dressed. Why this time of day? Because that's what you do in the morning. While he wasn't as "off" as during the night, that was still a confused conversation. At some point I asked him where we were, and he guessed Smithfield (a place we've never ever lived!).
I did finally get him up, dressed, took his pills. Since I can't read the guage, I asked him to check how much oxygen was in his portable tank. First he said it was full; but I knew that wasn't possible. After looking at it some more, he said it was "half" full. We had to go to the clinic (to make up the visit he missed last week). It was tricky getting him and the tank loaded, but I managed. At the clinic, they were super slow. This new nurse is nice and all, but I sure liked the other one better. Oh well, it's not about what we like. When they brought him back out to go, she informed me that his tank was nearly empty! Well, we'd been there well over an hour .. so they used up my "spare" time. I stopped at the pharmacy for refills, and we went straight home. No grocery stop. He wanted to just lay down .. and never got up again. He refused to eat, too. Later in the evening - later than we normally have supper - he finally ate one pot pie. During the time I was trying to get him settled in bed and the dialysis started, he made the comment "something is wrong". He couldn't figure out what, but something was really confusing or bothering him.
He did have a quiet night though. I hope he actually slept most of it!
Sunday night, however, was rough. He woke up (and sat on tubing, causing the alarm to go off, which of course got me up) around 4 AM. I hesitate to say he was "confused" or "disoriented", yet I don't know what to call it. The conversation was sort of like this:
Me: What are you doing?
Him: Waiting for someone to get back.
Me: Why
Him: So I can go home.
Me: And where are you now?
Him: At your house (said in a tone that implied I was asking pretty dumb questions).
Me: So we've lost 30 plus years of marriage and are now back to separate homes?
Him: (puzzled) No. What did the doctor say?
Me: It's 4 in the morning. Don't be worrying about doctors and houses. Go back to sleep.
Him: (as I was walking out the door) Betty is going to be wondeering where I am.
It took me over an hour to get back to sleep (he did not have any trouble at all!). Then I had to get back up at 6:30 because it was supply delivery day. So, anything else that happened all day was shaded by my being so very tired.
At 9:30 he called me. Now, "normal" is to go in about 10:00, take his B/P, disconnect the dialysis, change the bandage on his catheter site, then put his pills and protein drink where he can reach. After all that he gets dressed (or goes back to sleep). So, I go back and he's semi sitting on the side of the bed (he actually can't sit up at all without some sort of support, or else he must be holding on to something, such as a railing). He asked me to hand him his jeans. Why? So he can get dressed. Why this time of day? Because that's what you do in the morning. While he wasn't as "off" as during the night, that was still a confused conversation. At some point I asked him where we were, and he guessed Smithfield (a place we've never ever lived!).
I did finally get him up, dressed, took his pills. Since I can't read the guage, I asked him to check how much oxygen was in his portable tank. First he said it was full; but I knew that wasn't possible. After looking at it some more, he said it was "half" full. We had to go to the clinic (to make up the visit he missed last week). It was tricky getting him and the tank loaded, but I managed. At the clinic, they were super slow. This new nurse is nice and all, but I sure liked the other one better. Oh well, it's not about what we like. When they brought him back out to go, she informed me that his tank was nearly empty! Well, we'd been there well over an hour .. so they used up my "spare" time. I stopped at the pharmacy for refills, and we went straight home. No grocery stop. He wanted to just lay down .. and never got up again. He refused to eat, too. Later in the evening - later than we normally have supper - he finally ate one pot pie. During the time I was trying to get him settled in bed and the dialysis started, he made the comment "something is wrong". He couldn't figure out what, but something was really confusing or bothering him.
He did have a quiet night though. I hope he actually slept most of it!
Saturday, July 20, 2013
Day 59
This is for yesterday. I do that a lot (early morning seems to be "my" time); but I get myself confused too.
It was an odd day, but did not end particularly well. It started out somewhat OK. DSS brought DGS over early so he could finish mowing grass. While DSS was here (DH was still in bed) I made a quick trip to the grocery store. As soon as I got back (and DGS helped me bring in the groceries and put them away), I got DH's morning ritual done. DGS helped grandpa get dressed, and got him into the wheelchair (strong little fellow!).
We didn't even try to get him out of the wheelchair. He sat there, watched some TV, and I fixed him some lunch.
When the aide arrived, she said giving him a bath is a problem because he can't stand up for her to get him washed all over. Well, I said that from the very first day! So, I got him back and laid down on the bed and she washed him there. If that's to be the routine, I'm going to have to have a plastic cover for the bed. And that expensive shower transfer bench is so quickly obsolete. I won't get rid of it, or the no longer used walkers. I'm getting older as are my siblings - who knows who might need any of that equipment.
The aide did get him back into the wheelchair, though she admitted it was difficult. But after she left, after waiting a short time for the nurse (who said she'd come out because I had things to discuss with her), he decided he needed his nap. I got him back on the bed ... the only difficult part is trying to get him to sit far enough up along the edge of the bed to have room for his legs and feet when he lies down. He just can't seem to grasp that concept. And for some reason that I truly cannot understnad, he lies "crooked". He got his head against the railing, and kept letting his feet dangle off the bed. I kept telling him that was bad for his circulation, but I had to scoot him back several times. I told him if he couldn't keep his feet up where they belong I'd put that side rail up; but then I tried raising the foot of the bed a small amount, and that seemed to work for him.
He only got off the bed long enough to use the commode, and wanted right back on it. By a little before 8:00 he was undressed and under the covers; and while I set up the dialysis, he was snoring. Oh, I had taken him some fried chicken; but he only ate a few bites. He insisted that he wasn't "sick" but just didn't feel good. He says that frequently, and I'm not at all sure what it means.
The nurse never showed up or even called. I realize they most likely have other patients that are "critical". And they could well have had a crisis. And I know that while they agree he needs hospice services, he's not in any "immediate danger". Even so, she could have spared one minute to call. I have a list of questions, and right now I'm feeling about as deserted as I've been feeling for months now.
It's a weekend, so unless there's an emergency I guess no one is available. DSS is out of town to take DGS back to his mother. And, I let him use my car (safer than having some of the kids ride in the back of the pickup, not to mention more legal!!!), so unless I want to try to drive his truck, I'm stranded. I have no plans to go anywhere, that's not the point. I just - as usual - feel so totally alone.
So, I wonder what today will bring.
It was an odd day, but did not end particularly well. It started out somewhat OK. DSS brought DGS over early so he could finish mowing grass. While DSS was here (DH was still in bed) I made a quick trip to the grocery store. As soon as I got back (and DGS helped me bring in the groceries and put them away), I got DH's morning ritual done. DGS helped grandpa get dressed, and got him into the wheelchair (strong little fellow!).
We didn't even try to get him out of the wheelchair. He sat there, watched some TV, and I fixed him some lunch.
When the aide arrived, she said giving him a bath is a problem because he can't stand up for her to get him washed all over. Well, I said that from the very first day! So, I got him back and laid down on the bed and she washed him there. If that's to be the routine, I'm going to have to have a plastic cover for the bed. And that expensive shower transfer bench is so quickly obsolete. I won't get rid of it, or the no longer used walkers. I'm getting older as are my siblings - who knows who might need any of that equipment.
The aide did get him back into the wheelchair, though she admitted it was difficult. But after she left, after waiting a short time for the nurse (who said she'd come out because I had things to discuss with her), he decided he needed his nap. I got him back on the bed ... the only difficult part is trying to get him to sit far enough up along the edge of the bed to have room for his legs and feet when he lies down. He just can't seem to grasp that concept. And for some reason that I truly cannot understnad, he lies "crooked". He got his head against the railing, and kept letting his feet dangle off the bed. I kept telling him that was bad for his circulation, but I had to scoot him back several times. I told him if he couldn't keep his feet up where they belong I'd put that side rail up; but then I tried raising the foot of the bed a small amount, and that seemed to work for him.
He only got off the bed long enough to use the commode, and wanted right back on it. By a little before 8:00 he was undressed and under the covers; and while I set up the dialysis, he was snoring. Oh, I had taken him some fried chicken; but he only ate a few bites. He insisted that he wasn't "sick" but just didn't feel good. He says that frequently, and I'm not at all sure what it means.
The nurse never showed up or even called. I realize they most likely have other patients that are "critical". And they could well have had a crisis. And I know that while they agree he needs hospice services, he's not in any "immediate danger". Even so, she could have spared one minute to call. I have a list of questions, and right now I'm feeling about as deserted as I've been feeling for months now.
It's a weekend, so unless there's an emergency I guess no one is available. DSS is out of town to take DGS back to his mother. And, I let him use my car (safer than having some of the kids ride in the back of the pickup, not to mention more legal!!!), so unless I want to try to drive his truck, I'm stranded. I have no plans to go anywhere, that's not the point. I just - as usual - feel so totally alone.
So, I wonder what today will bring.
Thursday, July 18, 2013
Day 58
This day is not over, but close enough. As I'm sitting here writing, DH is napping - and I don't think he'll get out of bed again today. I'm not sure how he will feel about that; but there's only so much I can take. It wouldn't be so bad except that he did something to mess up his TV. He does have a personal DVD player if he feels up to watching something.
It's been such and up and down day that my nerves are stretch to the breaking point. Let me see if I can recap:
1. I had to try to get DH up earlier than usual because of a clinic appointment. I asked DGS to go help grandpa get dressed; DH told him he didn't need any help. So, I ended up helping him ... he just isn't at the point of admitting he needs help. And, apparently he thinks I have absollutely nothing else to do but just stand there and wait on him. (yes, I know, that was bitter and sarcastic. sorry, it's that kind of day). Once we finally got him dressed, I absolutely could NOT get him off the bed and into the wheelchair.
2. Right at the time we should have been leaving, the telephone repair man showed up. I had been told 7:45 to 8:00; not sure who it was that called me, but this guy showed up at 10:30, and knew nothing about any other time. He parked right where I would have needed to put the car to get DH into it (although the way the morning was going, not at all sure I could have gotten him in it anyway). The repair man informed me that the "dead" phone needed a new wire. He did that, and informed me someone else would come by within the next week to bury the wire.
3. I called the hospice nurse to let her know about the fall last night and for some advice about the current issues. It was much later before she called me back (I had said it was not "urgent"). She and the social worker will come by tomorrow to see if they can help me come up with solutions to the mobility issue.
4. I talked to DSS, turned out BGS was supposed to work for a guy today. DSS came out and picked up both boys, but will bring DGS back in the morning to finish grass cutting (it was just too hot for him to get it all today). When he comes, I'll make a quick run to the grocery store.
5. Shortly after they left, the neighbors came over again. The lady and 2 of her daughters came - just to visit. While they were here, one of the girls went back home and got the oungest child, toddler boy. We had a very nice, though complicated (mom doesn't speak much English) visit. After they left, the one girl came back, wanting to help me. She swept the kitchen, and then sat and talked for a long time. Sweet little girl!
Then the mom came back with the oldest daughter (that I hadn't met yet), and they brought us take out dinners!! What a lovely generous gesture! And with the day I've had, what a relief not to have to cook! The dinner is fish and chicken, mash potatoes, field peas, and corn. I don't think DH will like the fish, but I have chicken left from last night he can have. And - there's desert! Looks like strawberry cream pie!
6. While it has nothing to do with DH, one more "little" issue put me over the top. I was trying to read email, and accidently hit a wrong button ... and "lost" my Google Chrome (IE replaced it!). That took away all my bookmarks and everything!! It was like the last straw, all I could do was sit here and weep. Well, I accidently found the way to put it back without losing anything. But I'm so burnt out tonight, I just can't stop the weeps.
Tomorrow just has to be a better day!
It's been such and up and down day that my nerves are stretch to the breaking point. Let me see if I can recap:
1. I had to try to get DH up earlier than usual because of a clinic appointment. I asked DGS to go help grandpa get dressed; DH told him he didn't need any help. So, I ended up helping him ... he just isn't at the point of admitting he needs help. And, apparently he thinks I have absollutely nothing else to do but just stand there and wait on him. (yes, I know, that was bitter and sarcastic. sorry, it's that kind of day). Once we finally got him dressed, I absolutely could NOT get him off the bed and into the wheelchair.
2. Right at the time we should have been leaving, the telephone repair man showed up. I had been told 7:45 to 8:00; not sure who it was that called me, but this guy showed up at 10:30, and knew nothing about any other time. He parked right where I would have needed to put the car to get DH into it (although the way the morning was going, not at all sure I could have gotten him in it anyway). The repair man informed me that the "dead" phone needed a new wire. He did that, and informed me someone else would come by within the next week to bury the wire.
3. I called the hospice nurse to let her know about the fall last night and for some advice about the current issues. It was much later before she called me back (I had said it was not "urgent"). She and the social worker will come by tomorrow to see if they can help me come up with solutions to the mobility issue.
4. I talked to DSS, turned out BGS was supposed to work for a guy today. DSS came out and picked up both boys, but will bring DGS back in the morning to finish grass cutting (it was just too hot for him to get it all today). When he comes, I'll make a quick run to the grocery store.
5. Shortly after they left, the neighbors came over again. The lady and 2 of her daughters came - just to visit. While they were here, one of the girls went back home and got the oungest child, toddler boy. We had a very nice, though complicated (mom doesn't speak much English) visit. After they left, the one girl came back, wanting to help me. She swept the kitchen, and then sat and talked for a long time. Sweet little girl!
Then the mom came back with the oldest daughter (that I hadn't met yet), and they brought us take out dinners!! What a lovely generous gesture! And with the day I've had, what a relief not to have to cook! The dinner is fish and chicken, mash potatoes, field peas, and corn. I don't think DH will like the fish, but I have chicken left from last night he can have. And - there's desert! Looks like strawberry cream pie!
6. While it has nothing to do with DH, one more "little" issue put me over the top. I was trying to read email, and accidently hit a wrong button ... and "lost" my Google Chrome (IE replaced it!). That took away all my bookmarks and everything!! It was like the last straw, all I could do was sit here and weep. Well, I accidently found the way to put it back without losing anything. But I'm so burnt out tonight, I just can't stop the weeps.
Tomorrow just has to be a better day!
Day 57
Yesterday was July 16, in case I've gotten my numbering messed up - which is quite possible.
The day was mostly OK. It was DH's second night in the hospital bed, and he seems to be doing OK with it. He cannot get the concept of sitting on the bed and laying over to the side (which means he tends to flop backward and barely be on the far side of the bed; the first time he did that he banged his head on the rail). I'm mostly having to help him lift his feet up onto the bed too.
Anyway, in the morning, he got on up when I came in to do B/P and pills. It didn't even take him quite as long to get dressed. As it turned out, the aide came very early - 11:30 instead of 2:00. It's a bit disconcerting to not know when she'll be there. But he got washed up nicely, and then we got him into his chair for awhile. I fixed him some lunch, and then he went back for his nap.
He laid down for around 2 hours .. not sure if he slept or not, but I think he did. Then he was ready to get up again.
DSS brought DGS and BGS15 over fairly late; but I sent them off to get supper anyway, as I had nothing to fix and didn't know the boys were coming until late in the afternoon.
OK, all of this up and down all day, we had no problem with. We're sort of getting the hang of how to do it. Even though the nurse said to stop using the walker, he still has to get from bed to wheelchair, wheelchair to recliner, and then back.
So, last night he decided he wanted to sit up late to watch a TV show. I really think somewhere in the back of his mind - what's left of his reasoning ability - he was doing that on purpose because I had said he needed to go back "on time" (which is normally around 9:00) because his Thursday clinic appointment was earlier than it used to be. (the new nurse there hasn't grasped how difficult it is, and keeps scheduling him "early"). If he doesn't want to do something - such as get up earlier - he just doesn't do it no matter what I say or do.
So anyway, all of that up and down all day was done with no problem. Then at bedtime I try to get him up, and his legs just won't work. He says he "can't help it"; and probably he can't. But I still think there's a touch of stubborness there too. So, we keep trying and keep trying. Finally, I get him up. When he stands, he frequently won't straighten his legs. I don't know, maybe he's just not able to understand that by straightening his legs he'd be stronger when upright. He just keeps trying to sit too soon ... seems to think he can just swing his butt around to where he wants to be. He also apparently doesn't get the concept of arms on chairs! So, finally, I get him mostly up; and we're nearly to the wheelchair (a matter of about 3 or 4 steps to the side from the recliner), and suddenly instead of sitting down he starts toppling to one side. And there was no way I could hold on, and we both went down.
The boys were here to come get him up. But what happens next time? What if there's no one here? What if my phone .. and/or DSS's phone ... are all dead?
I know I'm supposed to call the nurse when he falls. But it was late. The only landline that works is the cordless, and the battery on that was run down. And the cell phone wasn't picking up a signal. I guess I should call today; but we're getting ready to go to clinic. Well, later. The phone repairman is duein maybe 15 minutes or so; I guess after that I'll call it in.
When the nurse was here Tuesday she noted me trying to get cleaning done, and dismantle the bed. She asked if I had "help". That's a joke, right? We're struggling to get help with DH. There's really no one who cares about what I have to do, aside from his care. Well, there are some who think we should move to a smaller house for more rent, just to live closer to town. But not because they have any intention of helping me do anything.
Clearly I'm not in a very good mood this morning, so guess it's time to stop for now!
Tuesday, July 16, 2013
Day 56
Just a brief update as it's gotten late. Last night .. around 3:15 this morning to be more precise ... DH decided to get up to use the commode. And then he couldn't get back on the bed. So of course he called me. I did manage to get him back up (didn't have to lift him, just swing his legs over).
Then the dialysis alarm went off at 6:30. Yes, I'm tired tonight!
(not to mention that I vacuumed the house, swept and mopped the kitchen, did 3 loads of laundry... AND ... completely dismantled and moved DH's bed!
The hospital bed was delivered this afternoon, including an APP and an overbed table. I got it all made up with clean sheets. Now I really hope he has a good night!!
Then the dialysis alarm went off at 6:30. Yes, I'm tired tonight!
(not to mention that I vacuumed the house, swept and mopped the kitchen, did 3 loads of laundry... AND ... completely dismantled and moved DH's bed!
The hospital bed was delivered this afternoon, including an APP and an overbed table. I got it all made up with clean sheets. Now I really hope he has a good night!!
Monday, July 15, 2013
Day 55
This was another not very good day. This morning, while in the process of getting up and dressed, DH had another fall. He was trying to reach for something, over balanced, and fell. I heard the fall and went to check on him. He was on the floor up against the cabinets in the corner. It took around 2 hours for him to get up. I tried to help him get turned so that he was on his knees - the only way he's able to get up. I tried to call DSS, but his phone - and DGS's - are both out of minutes.
I admit, I got so angry and frustrated. Not really angry *at* him. Fate maybe? He just can't get it through his head that there are things he can't do. Like balance. He did finally manage to get up from the kneeling position and onto the bed. After that he got his jeans on (well, mostly on). And then lay right there and went back to sleep.
I woke him up at 2:00 when the aide got here. I told her about the morning, and she said I should have called it in. Well, I didn't know that; and frankly, I'm not used to anyone really caring (other than family I mean). She called, and the nurse will be coming tomorrow.
The aide (used the wheelchair) got him into the bathroom and got him washed up really good, even his hair. Though I usually take him back to the bed for a nap after a bath, she didn't do that. She brought him to his chair. We sat there and talked a good while (and also, I fixed him some lunch).
Very soon after she left, TFG got here. About the same time DH decided he just had to go back and lay down again. TGF and I talked awhile, then I took a trunk full of trash to the dump while she stayed here with him.
When I got back, she left. Around 7:00 I got DH up again. He had an extremely hard time walking back to the living room. I was practically holding him up; and if I hadn't been holding on, he would most definately have fallen.
He still didn't want much to eat. One pot pie at lunch, and just one for supper.
At 9:00 he was sitting in his chair nodding. I went to help him get up, and he was acting a little muddled. He was trying to get up holding on to a bottle of water and the TV remote. I helped him to stand - just barely - enough to move a few steps sideways. ThenI pushed the wheelchair behind him so he could sit down. I've been trying to avoid having to push him around, but it's fast coming to the point where I have no choice. And yet, he still thinks he can just stand up and reach for things.
At times I think he's just being lazy and stubborn and I get frustrated. But then, sometimes I think he's fading, and wonder if I'm just fooling myself?
I'm curious what the nurse will say tomorrow. The thing is, no one but me for the most part sees some of the things that worry me so. All the doctors and nurses just see him sitting in a chair or wheelchair. No one ever sees him try to walk around at all. So I'm having a hard time expressing my fears/frustrations about what's going on with him.
Yesterday DGS got him up from a nap, and he walked into the living room fairly well. But today, he could barely manage at all. Did something change? Was he just that tired? Did his fall cause more problems? Or did something other than balance (lack of) cause the fall?
I'm very weepy tonight.
I admit, I got so angry and frustrated. Not really angry *at* him. Fate maybe? He just can't get it through his head that there are things he can't do. Like balance. He did finally manage to get up from the kneeling position and onto the bed. After that he got his jeans on (well, mostly on). And then lay right there and went back to sleep.
I woke him up at 2:00 when the aide got here. I told her about the morning, and she said I should have called it in. Well, I didn't know that; and frankly, I'm not used to anyone really caring (other than family I mean). She called, and the nurse will be coming tomorrow.
The aide (used the wheelchair) got him into the bathroom and got him washed up really good, even his hair. Though I usually take him back to the bed for a nap after a bath, she didn't do that. She brought him to his chair. We sat there and talked a good while (and also, I fixed him some lunch).
Very soon after she left, TFG got here. About the same time DH decided he just had to go back and lay down again. TGF and I talked awhile, then I took a trunk full of trash to the dump while she stayed here with him.
When I got back, she left. Around 7:00 I got DH up again. He had an extremely hard time walking back to the living room. I was practically holding him up; and if I hadn't been holding on, he would most definately have fallen.
He still didn't want much to eat. One pot pie at lunch, and just one for supper.
At 9:00 he was sitting in his chair nodding. I went to help him get up, and he was acting a little muddled. He was trying to get up holding on to a bottle of water and the TV remote. I helped him to stand - just barely - enough to move a few steps sideways. ThenI pushed the wheelchair behind him so he could sit down. I've been trying to avoid having to push him around, but it's fast coming to the point where I have no choice. And yet, he still thinks he can just stand up and reach for things.
At times I think he's just being lazy and stubborn and I get frustrated. But then, sometimes I think he's fading, and wonder if I'm just fooling myself?
I'm curious what the nurse will say tomorrow. The thing is, no one but me for the most part sees some of the things that worry me so. All the doctors and nurses just see him sitting in a chair or wheelchair. No one ever sees him try to walk around at all. So I'm having a hard time expressing my fears/frustrations about what's going on with him.
Yesterday DGS got him up from a nap, and he walked into the living room fairly well. But today, he could barely manage at all. Did something change? Was he just that tired? Did his fall cause more problems? Or did something other than balance (lack of) cause the fall?
I'm very weepy tonight.
Saturday, July 13, 2013
Day 52
This was not a gooI day. I don't know what's wrong; every now and again DH has a day where he just wants to stay in bed all day, won't eat, says he doesn't feel good. Nothing specific, no pain, no temperature. He just doesn't feel good.
I'm inclined to attribute it today to such a busy week. He's had to get up early (for him) every day. Normal for him is, most days, to lay in bed until noon or later. Sometimes he says he didn't sleep well; sometimes he just doesn't want to bother to get up. He's been being told for months and months now that it is bad for him to lay down so much. It promotes pneumonia among other things. It weakens him. And yet, when he doesn't want to get up .. unless I "force" him to for some reason (an appointment) ... he just doesn't.
Today was the 22nd day of rain. I didn't count, someone else told me - but I believe it. Maybe more. We've had an enormous amount of rain so far this summer. Apparently due to too much water,as of today, the toilets don't want to flush. That is, obviously, majorly invonvenient. I can Pplunge" them; but can't get them to flush and run freely. And of course (sorry if this is TMI - but then, not enough people are reading this for it to be an issue), he's had to use the commode twice. Normally I have to empty and clean it once a day (and if I don't, he needs a laxative). Yesterday ... no, Thursday ... he had a bad episode of diarhea. That was the first time in a very long time, and I suspect it had to do with his change of diet on Wednesday So anyway, I guess he's getting sort of back to "normal" for him. But doesn't it just figure, twice on a day when the plumbing has gone haywire???
Even though he is now on hospice, it's all very new and I'm not really sure what/when I'm supposed to do. I mentioned that, and he quickly and emphatically said he didn't need a nurse. That is just stubborness, and I don't know how to deal with it. If I had really thought he was sick, I guess I would have called someone anyway. But I just don't know. Is the a sign he's getting sick? Or just getting weaker?
He also mentioned the bandage on his catheter site hurt. I put it on exactly the same as always. And I'm not sure if he really meant the bandage hurt or the site. So there again, I am concerned. Is he developing an infection? And since that has to do with the dialysis, does the nurse even look at it? Or do I call the clinic. No, wait, they're closed on Sunday. And this would not be considered an emergency.
The nurse said she'd be coming once a week. I don't even know when. Will she come on Wednesdays since that was the day she started? Well, I do know the aide will come Monday. Perhaps she'll at least have an idea if I should call the nurse. But then, I most seriously hope he's gotten over this *spell* anyway.
I said he stayed in bed all day; but I guess I need to amend that. He did get up this morning. In fact, he got up earlier than usual - and I don't know why, because there was no special reason. He got into the living room ... but then, just sat there. He never turned on the TV. I did persuade him to put the foot rest up on his chair. I fixed him a bowl of soup, he only ate about half. He was up a bit less than 3 hours before he went to lay back down, but never got back up except to use the commode before getting in bed. I had to help him get undressed. He said something about being weak, and I pointed out that not eating will do that. Nevertheless, he went to bed, and got dialysis connected, about an hour earlier than usual.
And the questions inside my head continue. Is he really "fading" that much, or just having a bad day? Am I over reacting to his being over tired, or am I really in denial? I really don't know if his doctors have been "straight" with us ... either under- or over-stating his condition.
All these questions are giving me a headach. :(
I'm inclined to attribute it today to such a busy week. He's had to get up early (for him) every day. Normal for him is, most days, to lay in bed until noon or later. Sometimes he says he didn't sleep well; sometimes he just doesn't want to bother to get up. He's been being told for months and months now that it is bad for him to lay down so much. It promotes pneumonia among other things. It weakens him. And yet, when he doesn't want to get up .. unless I "force" him to for some reason (an appointment) ... he just doesn't.
Today was the 22nd day of rain. I didn't count, someone else told me - but I believe it. Maybe more. We've had an enormous amount of rain so far this summer. Apparently due to too much water,as of today, the toilets don't want to flush. That is, obviously, majorly invonvenient. I can Pplunge" them; but can't get them to flush and run freely. And of course (sorry if this is TMI - but then, not enough people are reading this for it to be an issue), he's had to use the commode twice. Normally I have to empty and clean it once a day (and if I don't, he needs a laxative). Yesterday ... no, Thursday ... he had a bad episode of diarhea. That was the first time in a very long time, and I suspect it had to do with his change of diet on Wednesday So anyway, I guess he's getting sort of back to "normal" for him. But doesn't it just figure, twice on a day when the plumbing has gone haywire???
Even though he is now on hospice, it's all very new and I'm not really sure what/when I'm supposed to do. I mentioned that, and he quickly and emphatically said he didn't need a nurse. That is just stubborness, and I don't know how to deal with it. If I had really thought he was sick, I guess I would have called someone anyway. But I just don't know. Is the a sign he's getting sick? Or just getting weaker?
He also mentioned the bandage on his catheter site hurt. I put it on exactly the same as always. And I'm not sure if he really meant the bandage hurt or the site. So there again, I am concerned. Is he developing an infection? And since that has to do with the dialysis, does the nurse even look at it? Or do I call the clinic. No, wait, they're closed on Sunday. And this would not be considered an emergency.
The nurse said she'd be coming once a week. I don't even know when. Will she come on Wednesdays since that was the day she started? Well, I do know the aide will come Monday. Perhaps she'll at least have an idea if I should call the nurse. But then, I most seriously hope he's gotten over this *spell* anyway.
I said he stayed in bed all day; but I guess I need to amend that. He did get up this morning. In fact, he got up earlier than usual - and I don't know why, because there was no special reason. He got into the living room ... but then, just sat there. He never turned on the TV. I did persuade him to put the foot rest up on his chair. I fixed him a bowl of soup, he only ate about half. He was up a bit less than 3 hours before he went to lay back down, but never got back up except to use the commode before getting in bed. I had to help him get undressed. He said something about being weak, and I pointed out that not eating will do that. Nevertheless, he went to bed, and got dialysis connected, about an hour earlier than usual.
And the questions inside my head continue. Is he really "fading" that much, or just having a bad day? Am I over reacting to his being over tired, or am I really in denial? I really don't know if his doctors have been "straight" with us ... either under- or over-stating his condition.
All these questions are giving me a headach. :(
Day 51
I'm still trying to get used to how fast everything is happening. It's a good thing of course, just so unexpected. I guess I'm just having trouble switching gears with no notice!
Thursday DH had his regular clinic appointment. That went OK, but they didn't do labs because they were too crowded. I think the new nurse is not doing as good a job as the one we'd had for so long. But, I'm trying to give her time to get adjusted to the job (she's been a nurse for 30 years; it's just this position she's not used to yet). She's made his appointment for next week earlier .. so she clearly doesn't *know* him well yet, because it's going to be really hard to get there on time.Even if he doesn't start getting up until 10:00, it takes him from an hour to an hour and a half to be ready to leave. (and trying to help him doesn't work, because he simply resists any effort to hurry him). To be at clinic by 11:00, we have to leave here by not long after 10:30. So, I'll have to get him up early; and that also means I'll have to (TRY) to get him to bed and hooked up to dialysis earlier the night before - also hard to do as he dawdlees a lot at night.
After the appointment, we ran a few errands (he had to just wait in the car - this is an ongoing problem; and even with some volunteer help, it's not going to completely change).. We got home just as a storm came up, so had to wait in the car for around 20 minutes. Once we finally got inside, DH had a problem that took a good bit of time and energy for both of us. But once that was dealt with, and he got a bit of a nap, the rest of the evening was fine.
On Friday it got really busy!! The chaplain and social worker came out.They are both very nice (as has been eveery one we've met!), and we had a nice visit - mostly their getting to know him (and me). While they were here, the nurse's adie came. The overlap was due to some confusion over timing, but it was OK. They left before she did; but she didn't do anything but talk about what things she could or couldn't do to help out. She also brought us a lot of those wonderful liner pads (that I especially like to use to protect the floor under the commode). They're not as big and heavy as the hospital ones; but much better than the little lap pads that dialysis supplies have. She will come again Monday, help DH get a bath and shave!
A short time after she left (barely had time to get DH some lunch, and didn't even get to eat mine), our new neighbors came over. It was funny and sweet - the lady speaks no English, and had 2 of her daughers with her to translate. They had seen so many cars coming and going all week, so came to the conclusion someone in the house was sick; so they asked if they could read the Bible and pray with us. Of course! They were so nice., and it was nice to meet them.
That, fortunately, was the end of the "activity" for DH, and he was ready for a nap!
More going on for me: the insurance man came by again. I told him which things I was not willing to change, took out some additional life insurance, and began the steps to change my 401K (that is losing $$ fast!!! Totally unacceptable!).
Later, one of my nieces got here. Her boyfriend brought her, and I fixed us all hamburgers. Then he went home, and she is spending the weekend with us.
Other than the fact that my kitchen sink is totally clogged, hopefully it will be a quiet uneventful weekend!
Thursday DH had his regular clinic appointment. That went OK, but they didn't do labs because they were too crowded. I think the new nurse is not doing as good a job as the one we'd had for so long. But, I'm trying to give her time to get adjusted to the job (she's been a nurse for 30 years; it's just this position she's not used to yet). She's made his appointment for next week earlier .. so she clearly doesn't *know* him well yet, because it's going to be really hard to get there on time.Even if he doesn't start getting up until 10:00, it takes him from an hour to an hour and a half to be ready to leave. (and trying to help him doesn't work, because he simply resists any effort to hurry him). To be at clinic by 11:00, we have to leave here by not long after 10:30. So, I'll have to get him up early; and that also means I'll have to (TRY) to get him to bed and hooked up to dialysis earlier the night before - also hard to do as he dawdlees a lot at night.
After the appointment, we ran a few errands (he had to just wait in the car - this is an ongoing problem; and even with some volunteer help, it's not going to completely change).. We got home just as a storm came up, so had to wait in the car for around 20 minutes. Once we finally got inside, DH had a problem that took a good bit of time and energy for both of us. But once that was dealt with, and he got a bit of a nap, the rest of the evening was fine.
On Friday it got really busy!! The chaplain and social worker came out.They are both very nice (as has been eveery one we've met!), and we had a nice visit - mostly their getting to know him (and me). While they were here, the nurse's adie came. The overlap was due to some confusion over timing, but it was OK. They left before she did; but she didn't do anything but talk about what things she could or couldn't do to help out. She also brought us a lot of those wonderful liner pads (that I especially like to use to protect the floor under the commode). They're not as big and heavy as the hospital ones; but much better than the little lap pads that dialysis supplies have. She will come again Monday, help DH get a bath and shave!
A short time after she left (barely had time to get DH some lunch, and didn't even get to eat mine), our new neighbors came over. It was funny and sweet - the lady speaks no English, and had 2 of her daughers with her to translate. They had seen so many cars coming and going all week, so came to the conclusion someone in the house was sick; so they asked if they could read the Bible and pray with us. Of course! They were so nice., and it was nice to meet them.
That, fortunately, was the end of the "activity" for DH, and he was ready for a nap!
More going on for me: the insurance man came by again. I told him which things I was not willing to change, took out some additional life insurance, and began the steps to change my 401K (that is losing $$ fast!!! Totally unacceptable!).
Later, one of my nieces got here. Her boyfriend brought her, and I fixed us all hamburgers. Then he went home, and she is spending the weekend with us.
Other than the fact that my kitchen sink is totally clogged, hopefully it will be a quiet uneventful weekend!
Wednesday, July 10, 2013
Day 49
So it looks like hospice really is happening. The nurse came out this afternoon for her initial assesment. I was telling her some of the other things we've been tld, and she was a bit shocked. For example - the dialysis does NOT have anything to do with his lungs! The dialysis keeps him alive because it does the work of his kidneys; it has no effect whatsoever on his failing lungs!
She (Marnie) explained how things work from her end, and helped us make some choices about care options. For example, someone will come out 2 or 3 times a week to help him bathe, and even wash his hair!
Earlier this morning I got a call that a hospital bed had already been ordered. While here, the nurse called a doctor on call, and got an order for oxygen. Finally!! He will get some oxygen, which will make him feel better!!
I'm really very encouraged. It just feels like finally, someone is going to offer services that will help him, and me too.
Next will be a visit from Marnie with the social worker. Not sure what to expect; but that will probably be Friday.
Deep breath.
She (Marnie) explained how things work from her end, and helped us make some choices about care options. For example, someone will come out 2 or 3 times a week to help him bathe, and even wash his hair!
Earlier this morning I got a call that a hospital bed had already been ordered. While here, the nurse called a doctor on call, and got an order for oxygen. Finally!! He will get some oxygen, which will make him feel better!!
I'm really very encouraged. It just feels like finally, someone is going to offer services that will help him, and me too.
Next will be a visit from Marnie with the social worker. Not sure what to expect; but that will probably be Friday.
Deep breath.
Tuesday, July 9, 2013
Day 48
Assuming I've counted right - 48 days. Today we had the home visit from a nurse/administrator from the "middle" hospice agency. This is the one that got an actual order from Dr. Todd. And - he was accepted!
I thought I would feel elated. Or depressed. Orrelieved. Something. But - I just don't feel anything in particular. Except tired. So now I'm wondering - has it just not really sunk in yet? Am I having trouble believing a "yes" after so much negative?
And as long as he was denied, it meant he's really not "that bad". And Dr. Todd was careful to explain how it could be renewed. So was she being reassuring? Or am I really in complete denial?
I don't know. I really just don't know.
But, from here on out (well, unless Medicare changes the rules again and he gets kicked out), this will be tracking his hospice care/health issues. And maybe occasionally my emotions.
Saturday, July 6, 2013
Day 45
Yesterday the nurse came by from the hospice that the PCP's office referred. She was over an hour late, which kind of messed up my day but oh well.
She did a quick evaluation of Jimmy. That involved doing B/P (a little high but apparently not "critical" .. told her about it going up and down so much, but like everyone else she wasn't concerned); temp (normal), and sat (93%). He told her it would have been "more accurate" if he hadn't just been using the BIPAP. Nothing anyone says will convince him that the BIPAP is "forced" air, but NO supplemental oxygen. She listened to heart and lungs (wheezing, crackles). Then she and I went over all his meds and history. When she left, I had a strong impression that she had decided we don't qualify, we don't need anything. I guess it didn't help that he told her he was "fine", no pain, and he could get up and walk to the front door, and his appetite was good in the evening (didn't mention that it's only good if I give him something he wants to eat, and if for any reason he doesn't like something, he just won't eat. And if I put any kind of vegetable other than a potato on his plate, he mostly ignores it completely).
I got a clear impression, too, that (1) kidney issues don't qualify because of dialysis (and she told me that there ARE patients on hospice who continue dialysis); (2) lung issues don't count because he continues to take the anti-rejection drugs; and (3) heart issues don't count because he is taking medication (even though it's actually for blood pressure). Gee, there's more about hospice that I didn't understand. The one nurse told me people "wait too late". Not true. Seems to get hospice care you have to completely give up. They "say" it's for quality care for end-of-life. Dropping ALL medicines is quality care???
Well, she's referring upline. I know what that means. Two down, one to go.
The lady from hospice #2 (the above was #3; #1 was the one that already denied him). emailed me. She had tried several times to get a reply from Duke and asked me to see if I could get something going. I emailed the coordinator - several times, actually. He said everything needs to be sent to him. Clearly doctors are too high and mighty to be bothered by such mundane things as patient needs. Anyway, I verified that I had given the lady the right fax #. Late in the afternoon she emailed me again, still no reply. This time I called and talked to him (and got a little bit of a run around before I was actually connected to him! What's up with that???). He told me that as we talked the requested form had been handed to him. Not sure I believe that, but whatever. He said it is a form for Dr. Todd to sign authorizing hospice. Well, of course, all the doctors had already gone for the weekend. Figures. I suspect the form was deliberately held so that would happen. I geuss I'm just in a negative frame of mind. He said he would make sure it went to the doctor first thing Monday. I let the hospice lady know ... so, one more weekend with no real answers anywhere. My guess is that when that form is received by the hospice people, one more time someone will come out and do an evaluation. I wish one of them would actually see him try to get up and walk or something.
This morning he tried to sit on the edge of the bed (to use the urinal). He slid right off. He can't grasp how to do things safely, plus has no strength. So ... on the floor he goes. It was NOON before we figured a way to get him up. Now he's back in bed sleeping. My son and family are on the way to visit for the day ... I don't know if DH will even get up. Well, maybe, but not until late afternoon.
But we don't need anything.
I foresee, in the relatively near future, that he will pretty much be restricted to a wheelchair. I've tried to make him walk as much as possible; I fear that once he starts letting me push him around, he'll no longer even try. Plus, even getting from the wheelchair to bed or chair is getting harder. I can get a patient lift, but I'm not sure how mobile they are and where it would be helpful. I'm also thinking really hard about a hospital bed. The biggest advantage would be the locking rails so no more falls getting out of bed. That also would force him to call me when he needs to use the toilet. That I can deal with. But there is the fact that those reasons wouldn't qualify with Medicare. I don't want to have to adjust my budget to come up with an extra $200 a month to rent a bed! If he got on hospice, they could order a bed - no "qualification" needed, and cheaper. But I'm pretty discouraged about the whole thing right now.
The nurse told me that with recent Medicare cutbacks, "failure to thrive" is no longer a qualifying condition - meanting people that were receiving hospice were no longer eligible. Even if Jimmy were accepted, if after 6 months he has the nerve to NOT die, and isn't measurably worse, he could be dropped. Medicare has made it nearly impossible for our generation to have any kind of quality healthcare.
She did a quick evaluation of Jimmy. That involved doing B/P (a little high but apparently not "critical" .. told her about it going up and down so much, but like everyone else she wasn't concerned); temp (normal), and sat (93%). He told her it would have been "more accurate" if he hadn't just been using the BIPAP. Nothing anyone says will convince him that the BIPAP is "forced" air, but NO supplemental oxygen. She listened to heart and lungs (wheezing, crackles). Then she and I went over all his meds and history. When she left, I had a strong impression that she had decided we don't qualify, we don't need anything. I guess it didn't help that he told her he was "fine", no pain, and he could get up and walk to the front door, and his appetite was good in the evening (didn't mention that it's only good if I give him something he wants to eat, and if for any reason he doesn't like something, he just won't eat. And if I put any kind of vegetable other than a potato on his plate, he mostly ignores it completely).
I got a clear impression, too, that (1) kidney issues don't qualify because of dialysis (and she told me that there ARE patients on hospice who continue dialysis); (2) lung issues don't count because he continues to take the anti-rejection drugs; and (3) heart issues don't count because he is taking medication (even though it's actually for blood pressure). Gee, there's more about hospice that I didn't understand. The one nurse told me people "wait too late". Not true. Seems to get hospice care you have to completely give up. They "say" it's for quality care for end-of-life. Dropping ALL medicines is quality care???
Well, she's referring upline. I know what that means. Two down, one to go.
The lady from hospice #2 (the above was #3; #1 was the one that already denied him). emailed me. She had tried several times to get a reply from Duke and asked me to see if I could get something going. I emailed the coordinator - several times, actually. He said everything needs to be sent to him. Clearly doctors are too high and mighty to be bothered by such mundane things as patient needs. Anyway, I verified that I had given the lady the right fax #. Late in the afternoon she emailed me again, still no reply. This time I called and talked to him (and got a little bit of a run around before I was actually connected to him! What's up with that???). He told me that as we talked the requested form had been handed to him. Not sure I believe that, but whatever. He said it is a form for Dr. Todd to sign authorizing hospice. Well, of course, all the doctors had already gone for the weekend. Figures. I suspect the form was deliberately held so that would happen. I geuss I'm just in a negative frame of mind. He said he would make sure it went to the doctor first thing Monday. I let the hospice lady know ... so, one more weekend with no real answers anywhere. My guess is that when that form is received by the hospice people, one more time someone will come out and do an evaluation. I wish one of them would actually see him try to get up and walk or something.
This morning he tried to sit on the edge of the bed (to use the urinal). He slid right off. He can't grasp how to do things safely, plus has no strength. So ... on the floor he goes. It was NOON before we figured a way to get him up. Now he's back in bed sleeping. My son and family are on the way to visit for the day ... I don't know if DH will even get up. Well, maybe, but not until late afternoon.
But we don't need anything.
I foresee, in the relatively near future, that he will pretty much be restricted to a wheelchair. I've tried to make him walk as much as possible; I fear that once he starts letting me push him around, he'll no longer even try. Plus, even getting from the wheelchair to bed or chair is getting harder. I can get a patient lift, but I'm not sure how mobile they are and where it would be helpful. I'm also thinking really hard about a hospital bed. The biggest advantage would be the locking rails so no more falls getting out of bed. That also would force him to call me when he needs to use the toilet. That I can deal with. But there is the fact that those reasons wouldn't qualify with Medicare. I don't want to have to adjust my budget to come up with an extra $200 a month to rent a bed! If he got on hospice, they could order a bed - no "qualification" needed, and cheaper. But I'm pretty discouraged about the whole thing right now.
The nurse told me that with recent Medicare cutbacks, "failure to thrive" is no longer a qualifying condition - meanting people that were receiving hospice were no longer eligible. Even if Jimmy were accepted, if after 6 months he has the nerve to NOT die, and isn't measurably worse, he could be dropped. Medicare has made it nearly impossible for our generation to have any kind of quality healthcare.
Wednesday, July 3, 2013
Day 42
In case I've gotten my days really mixed up (never claimed to be able to count! LOL), today is July 3, 2013.
There may or may not be interesting developments as of yesterday. As (I think) I previously posted, the idea was to talk to the PCP about a hospice referral. So, we go out for appointments in an all day long pouring rain. We were late to the dialysis clinic (he just couldn't get moving. Plus, he couldn't keep the time right in his mind. And for some reason he thought "the other appointment" was on Friday. I have no idea where that came from). They were busy, so we were cutting it close leaving. I didn't get to talk to the nurse, because I had to park in the open lot (let DH, DGS and BGS off under shelter at door).
We made a quick stop through town (next town over actually - appointments were in 2 different towns, but only 10 or so miles apart) to get food - had to feed 2 teenage boys!!
When we got to the doctor's office, the parking lot was strangely empty; but the waiting room filled up fast as we waited. After a few minutes I was called up to the window and told the the PCP was on vacation; that they had tried to get in touch with us, and it has been rescheduled. (side note: the new appointment IS on my calendar ... but no note anywhere about cancelling this one! So, my bad.) I told the nurse that it was only a follow up, nothing special going on; but that I had wanted to talk to the PCP about hospice. A few minutes later a nurse called me back, and we had a discussion ... I believe she really understood the situation and my frustration. She said she'd see what she could do. The problem, of course, is that his regular PCP is the one he sees and knows him; the other doctors don't.
I couldn't remember the name of the hospice agency. When we got home (still in rain!) I located the card the nurse left, and left a message at the doctor's office.
She called me back and said that another doctor (one who DH had seen at one time; I just didn't recognize her married name) did do a referral; but they sent it to a different hospice agency since they weren't familiar with the one I gave them. They based the referral on COPD (well, chronic rejection IS a "chronic obstructive pulmonary" condition if not a disease) and on Dementia.
Meantime, I had emailed the coordinator at Duke. He did answer me promptly, but only told me that any contact had to go through him. Well, he did answer me right away - but he doesn't always, so I find that a bit troubling. But, I emailed the PC nurse (because the phone number on her card is so tiny I simply couldn't make it out. I'm desperately hoping I at least got the email right!) his contact information. I also told her about the visit to the doctor's office and the name of a contact there. That was before I got the call; and the nurse is going on vacation.
If the PC nurse contacts Duke ... we could end up with hospice referrals to two different agencies from two different doctors! And, he still has to be evaluated ... for all this, we could very well end up exactly as things are right now!
And meantime, we're still plahying the wating game.
There may or may not be interesting developments as of yesterday. As (I think) I previously posted, the idea was to talk to the PCP about a hospice referral. So, we go out for appointments in an all day long pouring rain. We were late to the dialysis clinic (he just couldn't get moving. Plus, he couldn't keep the time right in his mind. And for some reason he thought "the other appointment" was on Friday. I have no idea where that came from). They were busy, so we were cutting it close leaving. I didn't get to talk to the nurse, because I had to park in the open lot (let DH, DGS and BGS off under shelter at door).
We made a quick stop through town (next town over actually - appointments were in 2 different towns, but only 10 or so miles apart) to get food - had to feed 2 teenage boys!!
When we got to the doctor's office, the parking lot was strangely empty; but the waiting room filled up fast as we waited. After a few minutes I was called up to the window and told the the PCP was on vacation; that they had tried to get in touch with us, and it has been rescheduled. (side note: the new appointment IS on my calendar ... but no note anywhere about cancelling this one! So, my bad.) I told the nurse that it was only a follow up, nothing special going on; but that I had wanted to talk to the PCP about hospice. A few minutes later a nurse called me back, and we had a discussion ... I believe she really understood the situation and my frustration. She said she'd see what she could do. The problem, of course, is that his regular PCP is the one he sees and knows him; the other doctors don't.
I couldn't remember the name of the hospice agency. When we got home (still in rain!) I located the card the nurse left, and left a message at the doctor's office.
She called me back and said that another doctor (one who DH had seen at one time; I just didn't recognize her married name) did do a referral; but they sent it to a different hospice agency since they weren't familiar with the one I gave them. They based the referral on COPD (well, chronic rejection IS a "chronic obstructive pulmonary" condition if not a disease) and on Dementia.
Meantime, I had emailed the coordinator at Duke. He did answer me promptly, but only told me that any contact had to go through him. Well, he did answer me right away - but he doesn't always, so I find that a bit troubling. But, I emailed the PC nurse (because the phone number on her card is so tiny I simply couldn't make it out. I'm desperately hoping I at least got the email right!) his contact information. I also told her about the visit to the doctor's office and the name of a contact there. That was before I got the call; and the nurse is going on vacation.
If the PC nurse contacts Duke ... we could end up with hospice referrals to two different agencies from two different doctors! And, he still has to be evaluated ... for all this, we could very well end up exactly as things are right now!
And meantime, we're still plahying the wating game.
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