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!
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