(Friday and) Saturday September 28, 2013
Physical: The most noteable thing this whole week has been the sleep/wake patterns. Saturday, he got up around 10:30. He sat in his chair watchng random TV. Around 1:00 or thereabouts he said he needed to use the commode. One of his problems (is it relaated to the dementia?) is that he actually can't tell when he needs to go. So, upon gtting him onto the commode, we discovered it was already too late (but he was not done eitehr). To avoid TMI, suffice to say I had a lot of less than pleasant clean up to take care of. He seems to vary between constipation and border-line diarhea.
At that point he decided he needed to lay down awhile. He went to sleep, and slept extremely soundly - for TEN hours! I couldn't get him to wake up for anything. But about 12:30 or so, he was wide awake, wanted to eat, wanted to use the commode, thought it was time to get up. The dialysis was going so he couldn't get up. I got him food, helped him on and off the commode (and cleaned up everything again). Then I sat up with him until around 3:00 AM. Well, I was in and out - turned the TV on. He finally went back to sleep, and I settled in my chair for a few hours.
People:
On Friday his cousin came to visit again. She brought us a gorgeous mum. I dearly love mums - usually I go to a nursery out on Old Stage Rd and get a bunch in different colors (but I'm partial to the bright yellow). I won't be able to this year, so I'm very happy for the one she brought.
The aide also came on Friday. Otherwise there has been no one here.At times it's very lonely; but I am grateful to not have the neighbors barging in.
Emotions:
The good thing is that I'm mostly too tired to *feel* anything. I cry a lot - but that's a combination of tiredness and my eyes bothering me as much as just sadness.
Sunday, September 29, 2013
Friday, September 27, 2013
Day 125
Thursday September 26, 2013
P\Physical:
As always, I see no noticeable physical change. He seemed to be more sleepy - but there are many days like that. Because of the dialysis issue, he stayed in bed until after 3:00. Part of the time he sat up and watched TV, but then napped more. He also sat up for visiting. He *almost* seemed "normal", thinking wise. And then out of the blue said something that didn't make sense. In the evening he got so sleepy again I could barely wake him up to eat (and that was in his recliner, not in bed). But, he actually slept through the night. I know better than to hope we've hit on a good system; but we're closer anyway.
People:
The chaplain came by. He's an awfully nice young man. He's clearly very good at what he does - he listens. And unlike the nurses (whether they mean to or not), he never makes us feel like he's got to hurry off to another patient.
DSS came by in the late afternoon to do the heparin; also to park a car (with Mule Days in town, it wouldn't be safe!)
Emotions:
Even with less sleep than I would have liked, I was better until late afternoon. Then I completely ran out of steam, and had a really hard time pushing myself to cook some supper and get the night's dialysis set up. I had really wanted to watch Elementary - but not only never saw the end of it, I woke up briefly much later to find only the "Dish" symble (meaning it had been on a really long time and Dish seems to think we have no right to just put it on one channel and leave it, so they decide we're not watching any more).
When the chaplain was here, I gave him 2 devotion books I had. I'd enjoyed them, but can no longer read them and thought he might be able to share (he likes to read passages). He opened one and picked something completely at random - and it was so perfect it tok my breath away. It was about "I want to be 5 again, just for an hour". The gist of it was wanting to be held and taken care of. I don't want to be 5 (at that time I had a younger brother and infant sister, and was expected to be a "big girl" already). But nobody takes care of the caretaker. I'm here alone with DH the vast majority of the time. People are in and out, whenever it suits their schedules. My DIL was very thoughtful about letting me get a "day off" last spring. And they did find days to come visit during the summer. Now that school has started, they're too busy to even pick up the phone or send an email. TGF has a job, classes, 3 boys, plus DSS, their home, his business. She has NO time for anything else (except when it's to her benefit of course). Really, everyone has their own life. I don't blame them for that. I certainly don't expect anyone to put their life on hold just because I'm whining. But it does hurt that the ones who *should* care don't seem to.
And hugs. Oh God how I miss hugs. There is no physical contact in my world. Well, except hefting DH up and down. Somehow that's just not quite the same! I married into a family of mostly touch-me-nots. I have a brother, a brother-in-law, and a grandson who are really good huggers; and they're the ones I see the least.
I know I need to just get over myself. It is what it is, and complaining about it is not going to change anything. If I can just get to the point of not being so tired, I'll be OK. Last night (it's now Friday morning) was better. Even though I woke up shortly after 4:00, I still got over 5 hours sleep; and I think I dozed maybe an hour or so more after that. I've learned to just give in and allow myself to rest/doze in the afternoon. And I know I am less depressed when I feel like I've accomplished things during the day. - which of course I can't do if I'm so tired I don't care!
So, today will be better.
P\Physical:
As always, I see no noticeable physical change. He seemed to be more sleepy - but there are many days like that. Because of the dialysis issue, he stayed in bed until after 3:00. Part of the time he sat up and watched TV, but then napped more. He also sat up for visiting. He *almost* seemed "normal", thinking wise. And then out of the blue said something that didn't make sense. In the evening he got so sleepy again I could barely wake him up to eat (and that was in his recliner, not in bed). But, he actually slept through the night. I know better than to hope we've hit on a good system; but we're closer anyway.
People:
The chaplain came by. He's an awfully nice young man. He's clearly very good at what he does - he listens. And unlike the nurses (whether they mean to or not), he never makes us feel like he's got to hurry off to another patient.
DSS came by in the late afternoon to do the heparin; also to park a car (with Mule Days in town, it wouldn't be safe!)
Emotions:
Even with less sleep than I would have liked, I was better until late afternoon. Then I completely ran out of steam, and had a really hard time pushing myself to cook some supper and get the night's dialysis set up. I had really wanted to watch Elementary - but not only never saw the end of it, I woke up briefly much later to find only the "Dish" symble (meaning it had been on a really long time and Dish seems to think we have no right to just put it on one channel and leave it, so they decide we're not watching any more).
When the chaplain was here, I gave him 2 devotion books I had. I'd enjoyed them, but can no longer read them and thought he might be able to share (he likes to read passages). He opened one and picked something completely at random - and it was so perfect it tok my breath away. It was about "I want to be 5 again, just for an hour". The gist of it was wanting to be held and taken care of. I don't want to be 5 (at that time I had a younger brother and infant sister, and was expected to be a "big girl" already). But nobody takes care of the caretaker. I'm here alone with DH the vast majority of the time. People are in and out, whenever it suits their schedules. My DIL was very thoughtful about letting me get a "day off" last spring. And they did find days to come visit during the summer. Now that school has started, they're too busy to even pick up the phone or send an email. TGF has a job, classes, 3 boys, plus DSS, their home, his business. She has NO time for anything else (except when it's to her benefit of course). Really, everyone has their own life. I don't blame them for that. I certainly don't expect anyone to put their life on hold just because I'm whining. But it does hurt that the ones who *should* care don't seem to.
And hugs. Oh God how I miss hugs. There is no physical contact in my world. Well, except hefting DH up and down. Somehow that's just not quite the same! I married into a family of mostly touch-me-nots. I have a brother, a brother-in-law, and a grandson who are really good huggers; and they're the ones I see the least.
I know I need to just get over myself. It is what it is, and complaining about it is not going to change anything. If I can just get to the point of not being so tired, I'll be OK. Last night (it's now Friday morning) was better. Even though I woke up shortly after 4:00, I still got over 5 hours sleep; and I think I dozed maybe an hour or so more after that. I've learned to just give in and allow myself to rest/doze in the afternoon. And I know I am less depressed when I feel like I've accomplished things during the day. - which of course I can't do if I'm so tired I don't care!
So, today will be better.
Thursday, September 26, 2013
Day 124
Wednesday September 25, 2013
\Physical:
Although DH again was wanting to get up "early" (9:00 this time), within a short time he was ready to lay back down. He did have a morning of unusual clarity - when asked, he knew exactlywhere he was and that is it "home". Of course, he then proceeded to tell about some place we went yesterday (which, of course, only happened in his head). His B/P and sats were actually very good.
The dialysis from the night before messed up, but I didn't realize it until after he was up. I didn't figure out what the problem was until time to try to set things up. The machine had changed a setting - it's an area I never touch, so no way it was done "accidently". I had to have help getting it back to the proper setting; but whenever turning the machine on, instead of going straight to the start up screen, it's going to the USB screen and I have to check the settings. I will HAVE to have the machine replaced.
Trying to get dialysis gong was a complete nightmare. The first time it kept trying to drain for a long time; I finally decided that the screwed up exchange from last night had not left a "dwell" so there was nothing to drain. I bypassed, but as soon as the fill started he was saying he was in pain, to stop it. I bypassed and went to dwell, then skipped that back to drain again. It drained this time; but when it went to "fill", the machine absolutely refused to work. I checked all the lines, the clamps, everything there is to check. But the machine simply wasn't pumping (could tell because the fluid is warmed, and the tubing was still cold). By then it was nearly midnight, and I'd still not had any sleep. So I turned it off; and started over again this morning (Thursday). Don't know yet if it's going to work; but at least he's sleeping soundly.
People:
When it rains it pours! The nurse came, fairly early - so glad I had gotten an early start! The social worker also came. Turns out it was time for his re-evaluation. It's sort of ironic that of all days, everything was "good". But they didn't even hint that he could be removed from hospice - which would of course be a complete disaster! Not long after they left the aide got here. While she was here I tried to just sit and rest some - having had NO sleep the night before. He laid down during the afternoon but didn't really nap much. I dozed off and on; but every time I would nod off, the phone would ring. Even the doorbell once - little girl from next door wanted to know if I had an old lunchbox she could have. But the only one I had was just plain blue, and she wanted something "girly". I pointed out to her that I had all boys - I never get much that's "girly"! DSS also came later. I had told him it was OK to park a car in our yard. It's one he's trying to sell and he's afraid if he leaves it in town it will get damaged over the weekend (Mule Days). He was able to help me with getting the machine settings back where they belong. He also wrote down the phone # so I can call them, which I will do today.
Emotions:
As always, I'm so tired that everything is becming overwhelming. The nurse and social worker were asking if I had any "help". No, I don't. But really, if we can just get the dialysis back right (first problems we've had in a very long time; and it probably is time for a new machine anyway). and get DH to sleep through the night, I'd be able to manage. It's very frustrating to not be able to see what I'm doing, and not be able to go anywhere. I don't like having to depend on DSS's girlfriend - even though I'm sort of paying them (helping with storage), she's still not overly concerned with what I need. She did stop by the grocery store yesterday (oh yeah, forgot that, one more person stopping by). She only got a few basics - about $15 worth, and I gave her $20. Pretty good "tip" I'd say! I really need to get the new reading glasses - I don't even know how much good they will do, but it can't be worse. But since the only time the girlfriend can manage to spare me aany time is on Sunday (yesterday she was here less than 15 minutes - only came by because she had to pick up the boys at the school only 3 miles away anyway) No eyeglass places are open on Sunday (and the only place remotely near that is affordable (no insurance) is Wal-Mart.
As tired as I was, by the time I gave up on the dialysis last night I was beyond sleep; so I mopped the kitchen floor. He woke up around 4:30, wanated to get up to pee. But he did go on back to sleep after that. I got the kitchen put back together, dried and folded a load of laundry; then got about another hour of sleep.
I'm still tired today, but not quite as bad as yesterday. I'm still struggling with overwhelming sadness .. not even sure if it's because of exhaustion, depression, or what. Maybe today will be better.
\Physical:
Although DH again was wanting to get up "early" (9:00 this time), within a short time he was ready to lay back down. He did have a morning of unusual clarity - when asked, he knew exactlywhere he was and that is it "home". Of course, he then proceeded to tell about some place we went yesterday (which, of course, only happened in his head). His B/P and sats were actually very good.
The dialysis from the night before messed up, but I didn't realize it until after he was up. I didn't figure out what the problem was until time to try to set things up. The machine had changed a setting - it's an area I never touch, so no way it was done "accidently". I had to have help getting it back to the proper setting; but whenever turning the machine on, instead of going straight to the start up screen, it's going to the USB screen and I have to check the settings. I will HAVE to have the machine replaced.
Trying to get dialysis gong was a complete nightmare. The first time it kept trying to drain for a long time; I finally decided that the screwed up exchange from last night had not left a "dwell" so there was nothing to drain. I bypassed, but as soon as the fill started he was saying he was in pain, to stop it. I bypassed and went to dwell, then skipped that back to drain again. It drained this time; but when it went to "fill", the machine absolutely refused to work. I checked all the lines, the clamps, everything there is to check. But the machine simply wasn't pumping (could tell because the fluid is warmed, and the tubing was still cold). By then it was nearly midnight, and I'd still not had any sleep. So I turned it off; and started over again this morning (Thursday). Don't know yet if it's going to work; but at least he's sleeping soundly.
People:
When it rains it pours! The nurse came, fairly early - so glad I had gotten an early start! The social worker also came. Turns out it was time for his re-evaluation. It's sort of ironic that of all days, everything was "good". But they didn't even hint that he could be removed from hospice - which would of course be a complete disaster! Not long after they left the aide got here. While she was here I tried to just sit and rest some - having had NO sleep the night before. He laid down during the afternoon but didn't really nap much. I dozed off and on; but every time I would nod off, the phone would ring. Even the doorbell once - little girl from next door wanted to know if I had an old lunchbox she could have. But the only one I had was just plain blue, and she wanted something "girly". I pointed out to her that I had all boys - I never get much that's "girly"! DSS also came later. I had told him it was OK to park a car in our yard. It's one he's trying to sell and he's afraid if he leaves it in town it will get damaged over the weekend (Mule Days). He was able to help me with getting the machine settings back where they belong. He also wrote down the phone # so I can call them, which I will do today.
Emotions:
As always, I'm so tired that everything is becming overwhelming. The nurse and social worker were asking if I had any "help". No, I don't. But really, if we can just get the dialysis back right (first problems we've had in a very long time; and it probably is time for a new machine anyway). and get DH to sleep through the night, I'd be able to manage. It's very frustrating to not be able to see what I'm doing, and not be able to go anywhere. I don't like having to depend on DSS's girlfriend - even though I'm sort of paying them (helping with storage), she's still not overly concerned with what I need. She did stop by the grocery store yesterday (oh yeah, forgot that, one more person stopping by). She only got a few basics - about $15 worth, and I gave her $20. Pretty good "tip" I'd say! I really need to get the new reading glasses - I don't even know how much good they will do, but it can't be worse. But since the only time the girlfriend can manage to spare me aany time is on Sunday (yesterday she was here less than 15 minutes - only came by because she had to pick up the boys at the school only 3 miles away anyway) No eyeglass places are open on Sunday (and the only place remotely near that is affordable (no insurance) is Wal-Mart.
As tired as I was, by the time I gave up on the dialysis last night I was beyond sleep; so I mopped the kitchen floor. He woke up around 4:30, wanated to get up to pee. But he did go on back to sleep after that. I got the kitchen put back together, dried and folded a load of laundry; then got about another hour of sleep.
I'm still tired today, but not quite as bad as yesterday. I'm still struggling with overwhelming sadness .. not even sure if it's because of exhaustion, depression, or what. Maybe today will be better.
Wednesday, September 25, 2013
Day 123
Tuesday Septembeer 24, 2013
Physical:
I still can't tell any difference in his brathing. At times he sounds like he's struggling other times he seems to breathe as normally as anyone else. The cough hasn't gotten noticeably worse that I can tell.
Mentally, he simply has no clue where he is any more. Ever. And he does know he's been told he's "home" - he just doesn't accept that.
But what scares me the most (and I'm sure I'm repeating myself - that's just an indication of how much the problem disturbs me) - is his not being able to realize what he can or can't do. Even when he has to ask me to help him sit up on the edge of the bed - he still doesn't realize that he can't just stand up and walk to where he wants to be.
The new sleeping pills seemed to work the first 2 nights - and then not. I don't know if it's how they work or what, but DH had a totally weird schedule. So last night (Tuesday) I did not give him one. The thing is, he was ready to get up at 8:30 in the morning; and then about 1:30 had to use the commode. (missed - huge mess for me to clean up). Then he laid down - and went very sound asleep. I tried multipole times from late afternoon into the evening to wake him. I had lights on, TV on, and the head of the bed raised - and the best I could get was a slurred mumble about "tired". But. About 11:00 - he woke up. And thought it made perfect sense for me to get him up to use the commode, and then wantd his supper. And then wanted me to sit up with him since he was wide awake. It was after 1:00 AM before he got drowsy enough that I could leave. He did sleep, though fitfully. How do I know? Because I could not get to sleep at all.
People:
No one came here. Not even my *friend* who keeps promising to come, and yet on 2 perfectly gorgeous days in a row she neither showed up nor bothered to contact me in any way. DSS called - although, oddly enough, his calls seem to be as much wanting to just talk to me about what's going on as they are asking how his dad is doing. DH's sister called - the one I don't like. Says she's coming to see him soon. I dread that, but can't tell her not to come.
Emotions:
Everyone keeps telling me that all these mental aberations are "normal", and "to be expected". No one tells me how to live with them. They say I should just go along. Well, how can I do that when he says "it's time to go home, his car is in the driveway". And I have no one to talk to at all but this stupid blog.
I never know when the nurse is coming - and lately, I don't even know which nurse is coming. The social worker and the chaplain had said they try to visit every 2 weeks or so .. but it's now been 3 weeks since they were here. The chaplain did at least ask if I get any "me" time. How can I? I'm "on duty" 24/7 - and not only that, DH's sleep/wake patterns seem to change daily, so I can't even try to carve out any time (have had to stop twice this morning even just writing this).
Physical:
I still can't tell any difference in his brathing. At times he sounds like he's struggling other times he seems to breathe as normally as anyone else. The cough hasn't gotten noticeably worse that I can tell.
Mentally, he simply has no clue where he is any more. Ever. And he does know he's been told he's "home" - he just doesn't accept that.
But what scares me the most (and I'm sure I'm repeating myself - that's just an indication of how much the problem disturbs me) - is his not being able to realize what he can or can't do. Even when he has to ask me to help him sit up on the edge of the bed - he still doesn't realize that he can't just stand up and walk to where he wants to be.
The new sleeping pills seemed to work the first 2 nights - and then not. I don't know if it's how they work or what, but DH had a totally weird schedule. So last night (Tuesday) I did not give him one. The thing is, he was ready to get up at 8:30 in the morning; and then about 1:30 had to use the commode. (missed - huge mess for me to clean up). Then he laid down - and went very sound asleep. I tried multipole times from late afternoon into the evening to wake him. I had lights on, TV on, and the head of the bed raised - and the best I could get was a slurred mumble about "tired". But. About 11:00 - he woke up. And thought it made perfect sense for me to get him up to use the commode, and then wantd his supper. And then wanted me to sit up with him since he was wide awake. It was after 1:00 AM before he got drowsy enough that I could leave. He did sleep, though fitfully. How do I know? Because I could not get to sleep at all.
People:
No one came here. Not even my *friend* who keeps promising to come, and yet on 2 perfectly gorgeous days in a row she neither showed up nor bothered to contact me in any way. DSS called - although, oddly enough, his calls seem to be as much wanting to just talk to me about what's going on as they are asking how his dad is doing. DH's sister called - the one I don't like. Says she's coming to see him soon. I dread that, but can't tell her not to come.
Emotions:
Everyone keeps telling me that all these mental aberations are "normal", and "to be expected". No one tells me how to live with them. They say I should just go along. Well, how can I do that when he says "it's time to go home, his car is in the driveway". And I have no one to talk to at all but this stupid blog.
I never know when the nurse is coming - and lately, I don't even know which nurse is coming. The social worker and the chaplain had said they try to visit every 2 weeks or so .. but it's now been 3 weeks since they were here. The chaplain did at least ask if I get any "me" time. How can I? I'm "on duty" 24/7 - and not only that, DH's sleep/wake patterns seem to change daily, so I can't even try to carve out any time (have had to stop twice this morning even just writing this).
Tuesday, September 24, 2013
Day 122
Monday September 23, 2013
We seem to have entered a new phase.It starts early (7:30 - 8:00) in the morning. He's decided to get up. Monday, he sat up until the aide got here. Then he stayed in bed from then on (1:30ish I think). He slept very soundly for several hours (when I tried to wake him at one point, he said "tired", very slurred). He woke up somewhat in the evening, and watched TV and ate some supper while I set up dialysis. By 8:30 or so he was sound asleep again.
And Tuesday morning (I always write in the morning for the day before) he's up again, with the added bonus that I get to clean him up.
So I no longer have my nice quiet time in the morning.
I feel like a non-person any more.
We seem to have entered a new phase.It starts early (7:30 - 8:00) in the morning. He's decided to get up. Monday, he sat up until the aide got here. Then he stayed in bed from then on (1:30ish I think). He slept very soundly for several hours (when I tried to wake him at one point, he said "tired", very slurred). He woke up somewhat in the evening, and watched TV and ate some supper while I set up dialysis. By 8:30 or so he was sound asleep again.
And Tuesday morning (I always write in the morning for the day before) he's up again, with the added bonus that I get to clean him up.
So I no longer have my nice quiet time in the morning.
I feel like a non-person any more.
Monday, September 23, 2013
Day 121
Sunday September 22, 2013
Physical:
For someone who hasn't the strength to stand alone, he certainly pulls off some amazing (and frightening) feats.
Sunday was a fairly good day. The dialysis was off, due to my negligance. But, it ran smoothly and I stopped it approximately half way. I got him up and dressed just as DSS got here, so DH ended up sitting in his chair around 6 hours. He also ate surprisngly well. He had a bowl of grapes and watermelon; then a small bag of Cheetos; then 2 grilled cheese sandwiches. He asked for a 3rd, but I told him dinner was in the works. He ate 2 (smallish) servings of meatloaf and mashed potatoes. By 7:30 he was starting to doze and exhausted, so I took him back to bed .. and by 8:00 he was sound asleep.
At 12:30ish he woke up. And, of course, so did I. He was sitting up (albeit holding on to the railings) with his feet hanging off the end of the bed where the railings stopped. Scared me good!! He had decided to get up and explore the room. I persuaded him to lay back down; and I know he slept at least off and on, if not soundly, until very early morning. I, of course, did not. :(
People
DSS and TGF and the 2 little boys came over. She helped me get my cell phone programmed; and also got a new cordless phone set up (old one was dieing, would no longer hold a charge). She forgot part of what she needed to cook so we went to the store and then grabbed some burgers for the kids (lunch). Naturallly, I paid for everything. Everything ran too late, so we didn't get the shopping done that we intended - which means we will run out of things before next
Emotions:
I'm weepy again; but that's at least in part because I'm tired again. At 4:30 I quit trying to sleep, and turned on the news, got some coffee, and did a bit of handwork on a sewing project. I tried to doze again around 5:30, but no luck. At 6:20 I gave up and got up, ; and another day has started.
Physical:
For someone who hasn't the strength to stand alone, he certainly pulls off some amazing (and frightening) feats.
Sunday was a fairly good day. The dialysis was off, due to my negligance. But, it ran smoothly and I stopped it approximately half way. I got him up and dressed just as DSS got here, so DH ended up sitting in his chair around 6 hours. He also ate surprisngly well. He had a bowl of grapes and watermelon; then a small bag of Cheetos; then 2 grilled cheese sandwiches. He asked for a 3rd, but I told him dinner was in the works. He ate 2 (smallish) servings of meatloaf and mashed potatoes. By 7:30 he was starting to doze and exhausted, so I took him back to bed .. and by 8:00 he was sound asleep.
At 12:30ish he woke up. And, of course, so did I. He was sitting up (albeit holding on to the railings) with his feet hanging off the end of the bed where the railings stopped. Scared me good!! He had decided to get up and explore the room. I persuaded him to lay back down; and I know he slept at least off and on, if not soundly, until very early morning. I, of course, did not. :(
People
DSS and TGF and the 2 little boys came over. She helped me get my cell phone programmed; and also got a new cordless phone set up (old one was dieing, would no longer hold a charge). She forgot part of what she needed to cook so we went to the store and then grabbed some burgers for the kids (lunch). Naturallly, I paid for everything. Everything ran too late, so we didn't get the shopping done that we intended - which means we will run out of things before next
Emotions:
I'm weepy again; but that's at least in part because I'm tired again. At 4:30 I quit trying to sleep, and turned on the news, got some coffee, and did a bit of handwork on a sewing project. I tried to doze again around 5:30, but no luck. At 6:20 I gave up and got up, ; and another day has started.
Sunday, September 22, 2013
Day 120
Saturday Septembeer 21, 2013
Physical:
I still don't see many changes. He's not any weaker that I can tell. He breathing seems to be the same, as long as he keeps the oxygen on. Mentally, it's a slow decline; but that I see at least. He almost never knows where he is any more.
He refuses to be put on a schedule any more than he can help (I do my best to keep the pills on schedule; but that's about all I can control).
Saturday night just as I was hooking up the dialysis he wanted me to do something or other. I don't remember now, but he distracted me - and I never completed turning on the machine. That just scares me. It's the 2nd time it's happened. Last time I didn't catch it until too late; at least this time I did. I turned it on, and he'll stay hooked up until mid day today (Sunday). It'll only be half a session, but better than none; and staying in bed til noon or 1:00 won't be that unusual for him anyway.
People:
No one came today. DSS called in the late afternoon.
Emotions:
I'm scared. Last night I got distracted just as I was getting him settled - and didn't ever turn on the dialysis machine. That's the 2nd time that's happened, although this time I "caught" it. It'll only run half the usual time, but that's better than nothing. That is, as long as the cycler doesn't mess up ... since there's an extra 11 hours on "dwell" fluid, the machine may try to drain more than there is; but it may not, I just don't know. Wait and see game.
I don't like that I get distracted so easily and forget what I'm doing. Am I showing signs of dementia or alzheimers too?In addition to going blind? I don't know what's going to happen to me. I'm not sure the boys really grasp what's going on with DH to start with; and they're completely ignoring any issues I have. I'm terrified someone in "authority" will come along and decide (without caring what the situation is) that I can't take care of DH adequately alone. With no other options, they'll forcefully put him in some sort of facility. If he's confused now, how much worse would he be there? And I would have no way of even going to visit, much less be with him. And me? I guess the boys would come take everything away, including my beloved kitties, and park me in some crappy crackerbox government apartment - and then continue to ignore me, figuring I can cope on my own that way.
I know, I'm "borrowing" trouble that doesn't exist. But I'm scared.
Physical:
I still don't see many changes. He's not any weaker that I can tell. He breathing seems to be the same, as long as he keeps the oxygen on. Mentally, it's a slow decline; but that I see at least. He almost never knows where he is any more.
He refuses to be put on a schedule any more than he can help (I do my best to keep the pills on schedule; but that's about all I can control).
Saturday night just as I was hooking up the dialysis he wanted me to do something or other. I don't remember now, but he distracted me - and I never completed turning on the machine. That just scares me. It's the 2nd time it's happened. Last time I didn't catch it until too late; at least this time I did. I turned it on, and he'll stay hooked up until mid day today (Sunday). It'll only be half a session, but better than none; and staying in bed til noon or 1:00 won't be that unusual for him anyway.
People:
No one came today. DSS called in the late afternoon.
Emotions:
I'm scared. Last night I got distracted just as I was getting him settled - and didn't ever turn on the dialysis machine. That's the 2nd time that's happened, although this time I "caught" it. It'll only run half the usual time, but that's better than nothing. That is, as long as the cycler doesn't mess up ... since there's an extra 11 hours on "dwell" fluid, the machine may try to drain more than there is; but it may not, I just don't know. Wait and see game.
I don't like that I get distracted so easily and forget what I'm doing. Am I showing signs of dementia or alzheimers too?In addition to going blind? I don't know what's going to happen to me. I'm not sure the boys really grasp what's going on with DH to start with; and they're completely ignoring any issues I have. I'm terrified someone in "authority" will come along and decide (without caring what the situation is) that I can't take care of DH adequately alone. With no other options, they'll forcefully put him in some sort of facility. If he's confused now, how much worse would he be there? And I would have no way of even going to visit, much less be with him. And me? I guess the boys would come take everything away, including my beloved kitties, and park me in some crappy crackerbox government apartment - and then continue to ignore me, figuring I can cope on my own that way.
I know, I'm "borrowing" trouble that doesn't exist. But I'm scared.
Saturday, September 21, 2013
Day 119
(Thursday and) Friday September 20, 2013
Note: I'm really not sure how long I'll be able to keep doing this blog. Visability is getting to be a major problem. I can make the font even larger; but there are so many other things that I can't see. I'll do the best I can.
The last few days have not been great.Some of it is me - my eyes ache, and cause headaches. Plus, it's really hard to have the motivation to do anything when I live in a permanent blurry fog. We had a lot of bad to non sleep nights (not all because of DH), and the last 2 days I've barely managed to get the basics done. I've spent the last 2 days just sitting and sleeping whenever I could, like I just couldn't get enough sleep. I know I could completely "burn out" at this rate - and yet - what choice do I have? The hospice nurse has asked me several times if I've given any thought as to what I'm going to do (presumably when I can no longer keep this up). The better question would be, what are the boys going to do?
DH seems to stay almost permanently in a state of mild confusion. He doesn't know where he is; but (so far) he knows who people are. He went through that spell of thinking I was his mother, but that hasn't happened for a long time now. His days and nights have been mixed up as far as sleeping; but by yesterday he couldn't seem to get any sleep at all, or not more than an hour or so at a time.
Yesterday I received a FedEx package - the hospice provided a generic Dulcolax AND the sleeping pills the nephro had prescribed. And last night he really did have a better night. He slept most of it; and when he wasn't sleeping, he wasn't thrashing around. I had a better night too, once I got the mouse to go away (MUST get traps!!!).
DH is becoming more and more incontinent. He does not seem to be able to tell if he needs "relief" or not; and more and more often that's leading to me cleaning up a mess. Thank goodness for washable protective bed covers.
The aide came Friday to get him cleaned up. This was her last time, as the regular lady is due back by Monday. She got him shaved really well, which was nice She got here around 12:30 or so, earlier than I expected. DH was awake, but I let him just stay in bed anyway - seemed less stress on him to just wait for her and then get up. But, he didn't want me to put him into his chair. He *said* that he'd sit in the wheelchair awhile, then the other - on the premise that he could stay sitting up longer. But barely over an hour later I caught him trying to walk his wheelchair back to the bedroom to lay down. And he did not get up again all day except for a late evening session with the commode.
I thought he'd eaten a fairly good supper; and then discovered that instead of eating his salad, he'd just picked the grapes out.
It's early Saturday morning now, and I can hear him getting restless. I think he'll settle back down, because he usually seems to sleep well in the mornings. I don't feel as exhausted as the last few days, so I am hoping for a better day.
Note: I'm really not sure how long I'll be able to keep doing this blog. Visability is getting to be a major problem. I can make the font even larger; but there are so many other things that I can't see. I'll do the best I can.
The last few days have not been great.Some of it is me - my eyes ache, and cause headaches. Plus, it's really hard to have the motivation to do anything when I live in a permanent blurry fog. We had a lot of bad to non sleep nights (not all because of DH), and the last 2 days I've barely managed to get the basics done. I've spent the last 2 days just sitting and sleeping whenever I could, like I just couldn't get enough sleep. I know I could completely "burn out" at this rate - and yet - what choice do I have? The hospice nurse has asked me several times if I've given any thought as to what I'm going to do (presumably when I can no longer keep this up). The better question would be, what are the boys going to do?
DH seems to stay almost permanently in a state of mild confusion. He doesn't know where he is; but (so far) he knows who people are. He went through that spell of thinking I was his mother, but that hasn't happened for a long time now. His days and nights have been mixed up as far as sleeping; but by yesterday he couldn't seem to get any sleep at all, or not more than an hour or so at a time.
Yesterday I received a FedEx package - the hospice provided a generic Dulcolax AND the sleeping pills the nephro had prescribed. And last night he really did have a better night. He slept most of it; and when he wasn't sleeping, he wasn't thrashing around. I had a better night too, once I got the mouse to go away (MUST get traps!!!).
DH is becoming more and more incontinent. He does not seem to be able to tell if he needs "relief" or not; and more and more often that's leading to me cleaning up a mess. Thank goodness for washable protective bed covers.
The aide came Friday to get him cleaned up. This was her last time, as the regular lady is due back by Monday. She got him shaved really well, which was nice She got here around 12:30 or so, earlier than I expected. DH was awake, but I let him just stay in bed anyway - seemed less stress on him to just wait for her and then get up. But, he didn't want me to put him into his chair. He *said* that he'd sit in the wheelchair awhile, then the other - on the premise that he could stay sitting up longer. But barely over an hour later I caught him trying to walk his wheelchair back to the bedroom to lay down. And he did not get up again all day except for a late evening session with the commode.
I thought he'd eaten a fairly good supper; and then discovered that instead of eating his salad, he'd just picked the grapes out.
It's early Saturday morning now, and I can hear him getting restless. I think he'll settle back down, because he usually seems to sleep well in the mornings. I don't feel as exhausted as the last few days, so I am hoping for a better day.
Thursday, September 19, 2013
Day 117
(Tuesday and)Wednesday September 18, 2013
I am not using my "regular" format, just need to write about Wednesday.
The day started out reasonably well (considering a lack of enough sleep again). Although he kept trying to go do things that he can't do, I managed to get him up, dressed, and into the car with minimum trouble. We got to his clinic appointment on time.
This month's doctor is the nice one. Also, I like the male nurse better than the regular PD nurse (she was on vacation). He's kinder; and also voluntarily helpful. The social worker and the dietician also came into the room. The SW was mostly just saying Hi and not to worry about the bill (supposed to be a waiver, but that takes a long time). The dietician went over his labs - everything is actually very good. That's kind of sad. They're keeping him in great shape so he can die more slowly. OK, that's not really a fair statement; and I know they're doing their jobs. It just feels so much like they and the other doctors (who have turned his care over to hospice) are at cross purposes. The one says do everything we can to make him comfortable; the other keeps wanting to change meds, give him shots, stress about what he eats. He has very little appetite, and I fix him - as best I can - what ever he will eat. He likes Hamburger Helper, so I occasionally fix that. She keeps harping on how UN nutritional that is. And they keep trying to push on him the protein stuff - shakes, bars, ice cream. He doesn't like any of that stuff; I'm lucky I've hit on a "recipe" for his morning drink that he'll accept.
With help from the male nurse, I got him back into the car. I stopped for med refills (3 for him, 3 eye drops for me) - and to my everlasting frustration, I completely forgot the new Rx the nephro gave him for a different sleep aid.
After that I went by DSS's shop. I have 2 cell phones - both paid for this month - and neither work. I have to get that straightened out! So I let DSS know we were going to stop by the grocery store and then go home, and he was to meet us at home.
I got groceries, got home, unloaded the car, got food put away. I was about to go on and try to get DH out of the car myself (he'd already been trying to get out by himself, even though his wheelchair wasn't even there for him). Then DSS got there. After getting DH into the hosue - again, no trouble and no falls - DSS finished mowing the grass.
Just after gtting DH settled down for a nap, the nurse called. Not the regular one, the first one who subbed for her. She said she didn't know why, just that she had been given his name for her visits today. She got here in the late afternoon, checked him out, talked to me a bit. I didn't ask what his vitals were; apparently she was satisfied with them. She did see, however, that his confusion is more or less a permanent condition any more (he told her he wanted to go "downstairs"!).
Our talk was brief; and since she doesn't come every week, she couldn't really address any issues I had. She did make a note to order the only medicine he takes that they cover (Dulcolax). It's begun to seem like ones that come make notes about things - and then nothing happens. I know they have other patients that are more critical than DH is right now. But I don't think that means he deserves less attention. It is starting to feel like thenurses (and aides) are so rushed, and have such a huge territory to cover daily, that they rush in and out and don't have time for us. It's frustrating to me to have no one to really talk to about him.
He neveer got back out of bed except to use the commode (around 7:30ish; and again around midnight). I brought him some supper and he ate while I was setting up the dialysis. Once I got him connected and he had finished eating, I left him watching TV .. and he went to sleep. He woke a bit when I turned the TV and lights off
Later he woke up again, and I could not get him to go back to sleep. He was convinced he was in a school this time. And at one point - while sitting on the commode - he told me call the police, call his mama, call anybody to come get him out of here. The night went downhill from there. Every time I left the room he started rattling the bed rails until I came back (and was doing that on purpose). I gave up and sat in the cahir for over an hour. He would almost get to sleep - then pop his head up to see if I was still there. It was close to 2:00 before I finally left and got to my own "bed" to sleep.
I got about 2 hours of sleep before the phone rang. DSS called - some (insert as many dirty words as you can think of) jerk had set fire to the boat. Again. He tried it once before, burned up the tarp. This time he succeeded, and burned the shop. DSS is caught between furious and distraught. I'm totally amazed that I'm the one (after his GF of course) that he called!
The boat was DH's. He bought it for way too much $$ when he got a retirement settlement. He was SO proud of that boat - even though he never set foot on it. For several years he paid for it to be stored; we finally persuaded him to go on and pay someone to haul it up here, and it was stored (slowly be refinished) in the parking lot to DSS's shop.
The GF called about an hour later. They were finally able to get inside (oh, forgot, police wouldn't let DSS in the shop; but he did walk around to the back and find that the dog was safe).. It seemed - as best they could tell by flashlight - that there isn't too much damage inside, so a huge relief (even though it will take DSS a very long time to get over his fury).
By then I gave up completely any chance of getting more sleep. I turned on the TV, started a load of laundry, got some coffee.
DH is still not sleeping. In a very ironic twist of fate, when I went in around 6:00 to find out what he was up to this time - he said he was in the bottom of a boat, out to sea, waiting to go fishing.
I do not know how we will go on. Putting him in a facility is not an option. If he's confused now, what would happen if he were forced into completely unfamiliar surroundings with no one familiar around him at all?
There are people who, for whatever reason (jealousy?), just hate that we live in this big house. We don't own it. It has a lot of problems, and we try not to call on the landlord for anything more than absolutely necessary (rent is relatively cheap for the size of the house and yard). And yet there are people telling me that we pay way too much. I supposed it's possible we could rent a trailer or cracker box apartment for less. But why would we want to? Why is it so wrong to have enough room? And are we not to be allowed to ever have family visit again just to satisfy busy-bodies who think we should live somewhere else? Yes, the electricity is "iffy"; the plumbing is lousy; and technology is practically non exhistant. But why do other people object to us having *things* and the space to have them? Have we not earned the right to have anything?
OK, I'm getting off subject and into a bit of a rant. I'm just so totally exhausted and stressed; My head aches and my eyes burn because I can't stop crying. And the only person with the remotest chance of giving me a break now has huge worries of his own to deal with (and without his dad every knowing about the shop, and especially that the boat is completely gone).
.
I am not using my "regular" format, just need to write about Wednesday.
The day started out reasonably well (considering a lack of enough sleep again). Although he kept trying to go do things that he can't do, I managed to get him up, dressed, and into the car with minimum trouble. We got to his clinic appointment on time.
This month's doctor is the nice one. Also, I like the male nurse better than the regular PD nurse (she was on vacation). He's kinder; and also voluntarily helpful. The social worker and the dietician also came into the room. The SW was mostly just saying Hi and not to worry about the bill (supposed to be a waiver, but that takes a long time). The dietician went over his labs - everything is actually very good. That's kind of sad. They're keeping him in great shape so he can die more slowly. OK, that's not really a fair statement; and I know they're doing their jobs. It just feels so much like they and the other doctors (who have turned his care over to hospice) are at cross purposes. The one says do everything we can to make him comfortable; the other keeps wanting to change meds, give him shots, stress about what he eats. He has very little appetite, and I fix him - as best I can - what ever he will eat. He likes Hamburger Helper, so I occasionally fix that. She keeps harping on how UN nutritional that is. And they keep trying to push on him the protein stuff - shakes, bars, ice cream. He doesn't like any of that stuff; I'm lucky I've hit on a "recipe" for his morning drink that he'll accept.
With help from the male nurse, I got him back into the car. I stopped for med refills (3 for him, 3 eye drops for me) - and to my everlasting frustration, I completely forgot the new Rx the nephro gave him for a different sleep aid.
After that I went by DSS's shop. I have 2 cell phones - both paid for this month - and neither work. I have to get that straightened out! So I let DSS know we were going to stop by the grocery store and then go home, and he was to meet us at home.
I got groceries, got home, unloaded the car, got food put away. I was about to go on and try to get DH out of the car myself (he'd already been trying to get out by himself, even though his wheelchair wasn't even there for him). Then DSS got there. After getting DH into the hosue - again, no trouble and no falls - DSS finished mowing the grass.
Just after gtting DH settled down for a nap, the nurse called. Not the regular one, the first one who subbed for her. She said she didn't know why, just that she had been given his name for her visits today. She got here in the late afternoon, checked him out, talked to me a bit. I didn't ask what his vitals were; apparently she was satisfied with them. She did see, however, that his confusion is more or less a permanent condition any more (he told her he wanted to go "downstairs"!).
Our talk was brief; and since she doesn't come every week, she couldn't really address any issues I had. She did make a note to order the only medicine he takes that they cover (Dulcolax). It's begun to seem like ones that come make notes about things - and then nothing happens. I know they have other patients that are more critical than DH is right now. But I don't think that means he deserves less attention. It is starting to feel like thenurses (and aides) are so rushed, and have such a huge territory to cover daily, that they rush in and out and don't have time for us. It's frustrating to me to have no one to really talk to about him.
He neveer got back out of bed except to use the commode (around 7:30ish; and again around midnight). I brought him some supper and he ate while I was setting up the dialysis. Once I got him connected and he had finished eating, I left him watching TV .. and he went to sleep. He woke a bit when I turned the TV and lights off
Later he woke up again, and I could not get him to go back to sleep. He was convinced he was in a school this time. And at one point - while sitting on the commode - he told me call the police, call his mama, call anybody to come get him out of here. The night went downhill from there. Every time I left the room he started rattling the bed rails until I came back (and was doing that on purpose). I gave up and sat in the cahir for over an hour. He would almost get to sleep - then pop his head up to see if I was still there. It was close to 2:00 before I finally left and got to my own "bed" to sleep.
I got about 2 hours of sleep before the phone rang. DSS called - some (insert as many dirty words as you can think of) jerk had set fire to the boat. Again. He tried it once before, burned up the tarp. This time he succeeded, and burned the shop. DSS is caught between furious and distraught. I'm totally amazed that I'm the one (after his GF of course) that he called!
The boat was DH's. He bought it for way too much $$ when he got a retirement settlement. He was SO proud of that boat - even though he never set foot on it. For several years he paid for it to be stored; we finally persuaded him to go on and pay someone to haul it up here, and it was stored (slowly be refinished) in the parking lot to DSS's shop.
The GF called about an hour later. They were finally able to get inside (oh, forgot, police wouldn't let DSS in the shop; but he did walk around to the back and find that the dog was safe).. It seemed - as best they could tell by flashlight - that there isn't too much damage inside, so a huge relief (even though it will take DSS a very long time to get over his fury).
By then I gave up completely any chance of getting more sleep. I turned on the TV, started a load of laundry, got some coffee.
DH is still not sleeping. In a very ironic twist of fate, when I went in around 6:00 to find out what he was up to this time - he said he was in the bottom of a boat, out to sea, waiting to go fishing.
I do not know how we will go on. Putting him in a facility is not an option. If he's confused now, what would happen if he were forced into completely unfamiliar surroundings with no one familiar around him at all?
There are people who, for whatever reason (jealousy?), just hate that we live in this big house. We don't own it. It has a lot of problems, and we try not to call on the landlord for anything more than absolutely necessary (rent is relatively cheap for the size of the house and yard). And yet there are people telling me that we pay way too much. I supposed it's possible we could rent a trailer or cracker box apartment for less. But why would we want to? Why is it so wrong to have enough room? And are we not to be allowed to ever have family visit again just to satisfy busy-bodies who think we should live somewhere else? Yes, the electricity is "iffy"; the plumbing is lousy; and technology is practically non exhistant. But why do other people object to us having *things* and the space to have them? Have we not earned the right to have anything?
OK, I'm getting off subject and into a bit of a rant. I'm just so totally exhausted and stressed; My head aches and my eyes burn because I can't stop crying. And the only person with the remotest chance of giving me a break now has huge worries of his own to deal with (and without his dad every knowing about the shop, and especially that the boat is completely gone).
.
Tuesday, September 17, 2013
Day 115
Monday, September 16, 2013
Physical
He stayed in bed pretty much all day. He said he didn't feel good. In the late evening he rallied a bit, and ate a few slices of pizza. The only time he got out of bed was when he said he needed to use the commode. When he was ready to get off - to put it "delicately" - he needed help getting cleaned. I got him to the bed as usual; but instead of getting on his side, he let his legs dangle off the side of the bed. And it was downhill (literally) from that. He ended up on his knees, so I tried what had worked in the past: to raise the level of the bed to where I could get the wheelchair behind him to sit back in. But this time before I could get the bed high enough, he was telling me to stop. So, it wasn't high enough, he could only reach the edge of the wheelchair. I tried very hard to pull him into it; but in the end, he just slithered onto the floor. He didn't "fall", and wasn't hurt. But no matter what I tried I douldn't get him up; and in the end had no choice but call DSS. By then DH was ready to just get back in bed, although that's when he was at least ready to eat and watch some TV.
People:
The supply delivery came around 8:30; DH actually rarely sees that guy. The aide came in the early afternoon. She got him washed up, and clean sheets on the bed (she's very good at doing that even with him in it!) And, as I said, DSS was there; and once DH was back on the bed, DSS did stay and talk a little while; but he had to get back home before dark (had a trailer on his truck with no lights)
Emotions:
I am tired, frustrated, and discouraged. My daily "plan" has 4 parts to it. One, the things that must be done: dishes, laundry, DH's care (medicines, dialysis, getting him up and down, etc), personal cae, pet care. Two, keeping the house clean - trying to get "routine" cleaning done every week by assigning a specific chore to each day. Three, deep cleaning: a "project room" per week, to be completed by Thanksgiving. Four, working on Christmas (and other) sewing projects.The first part always gets done. My problem is, one or more of the other three often don't get done. I'm tired all the time, I'm sad most of the time, and there are so many variables that I'm having a hard time functioning like I feel like I should be doing. People are always telling me "it doesn't matter". Why is it fair to say that what matters to me (i.e., my home being clean and presentable) "doesn't matter"? The message I'm getting is that I just don't matter at all
I will add one exception though: DSS mowed the grass - first time in over 30 years he's done it voluntarily. He told his GF it was partly because he was afraid when I had to walk out to the car in or near tall grass that I'd encounter a snake and not see it.
Physical
He stayed in bed pretty much all day. He said he didn't feel good. In the late evening he rallied a bit, and ate a few slices of pizza. The only time he got out of bed was when he said he needed to use the commode. When he was ready to get off - to put it "delicately" - he needed help getting cleaned. I got him to the bed as usual; but instead of getting on his side, he let his legs dangle off the side of the bed. And it was downhill (literally) from that. He ended up on his knees, so I tried what had worked in the past: to raise the level of the bed to where I could get the wheelchair behind him to sit back in. But this time before I could get the bed high enough, he was telling me to stop. So, it wasn't high enough, he could only reach the edge of the wheelchair. I tried very hard to pull him into it; but in the end, he just slithered onto the floor. He didn't "fall", and wasn't hurt. But no matter what I tried I douldn't get him up; and in the end had no choice but call DSS. By then DH was ready to just get back in bed, although that's when he was at least ready to eat and watch some TV.
People:
The supply delivery came around 8:30; DH actually rarely sees that guy. The aide came in the early afternoon. She got him washed up, and clean sheets on the bed (she's very good at doing that even with him in it!) And, as I said, DSS was there; and once DH was back on the bed, DSS did stay and talk a little while; but he had to get back home before dark (had a trailer on his truck with no lights)
Emotions:
I am tired, frustrated, and discouraged. My daily "plan" has 4 parts to it. One, the things that must be done: dishes, laundry, DH's care (medicines, dialysis, getting him up and down, etc), personal cae, pet care. Two, keeping the house clean - trying to get "routine" cleaning done every week by assigning a specific chore to each day. Three, deep cleaning: a "project room" per week, to be completed by Thanksgiving. Four, working on Christmas (and other) sewing projects.The first part always gets done. My problem is, one or more of the other three often don't get done. I'm tired all the time, I'm sad most of the time, and there are so many variables that I'm having a hard time functioning like I feel like I should be doing. People are always telling me "it doesn't matter". Why is it fair to say that what matters to me (i.e., my home being clean and presentable) "doesn't matter"? The message I'm getting is that I just don't matter at all
I will add one exception though: DSS mowed the grass - first time in over 30 years he's done it voluntarily. He told his GF it was partly because he was afraid when I had to walk out to the car in or near tall grass that I'd encounter a snake and not see it.
Monday, September 16, 2013
Day 114
Sunday, September 15, 2013
Physical:
I saw no particular difference. It was actually a fairly good day. He sat in the recliner around 5 hours I think. And, he seemed to be mostly "here" most of the day.
Sleep continues to be an issue; but I think maybe I've been looking at it wrong. He doesn't stay awake at night because he sleeps all day .. he sleeps all day because he can't sleep at night. And, having said that, he did a bit better Sunday night. He woke up around 2:30; and I finally got up about 3:00 to see what he was doing to cause the bed rails to rattle.
He said he had peed in the bucket. The trash can was on it's side, and the floor - and sheets - were damp. I told him to roll on over to the other side of the bed (the way he normally sleeps), threw a towel over the damp area. He went back to sleep. I watched a movie, and gave up trying and got up about 6:00.
This HAS to change!
People:
Sunday was a pretty good day, with one small time frame exception. TGF and the boys got here mid afternoon. She and I cleaned out 3 freezers (1 chest, 2 fridges). DSS came a little later and cut most of the grass. NOTE: this is the first time in over 30 years he has voluntarily cut our grass!!!
TGF and I went to take a few things from the freezer to their house, then pick up some groceries, pizza, and lawnmower gas.
It was a bit frustrating to get home and find the boys all outside. We'd tried to get them out earlier (beautiful weather), but they wouldn't go. When they were supposed to be keeping an eye on grandpa - they left him in the house alone!
Emotions:
As usual, I'm tired. If I don't get a decent night's rest, I just don't know what to do. A long time ago he was on Ambien; then it quit working. The nurse told me it is generally only a short term solution. Well, I still have some. I think I'll add one to his nightly pills one time. I know it can't hurt him; so if it gives him (and me!) a full night's sleep, what a blessing that would be!!
I do at least feel less angry at TGF. I think DSS must have told her how upset I was about her comment last weekend. It was never mentioned; but she certainly had a better attitude towards helping. Of course, it didn't help that I gave her a lot of things out of the freezer; and I bought pizza!
But by the time they left, I picked up the left over trash and clutter, finished getting dialysis set up and DH to bed .. I was so tired I was literally stumbling.
Physical:
I saw no particular difference. It was actually a fairly good day. He sat in the recliner around 5 hours I think. And, he seemed to be mostly "here" most of the day.
Sleep continues to be an issue; but I think maybe I've been looking at it wrong. He doesn't stay awake at night because he sleeps all day .. he sleeps all day because he can't sleep at night. And, having said that, he did a bit better Sunday night. He woke up around 2:30; and I finally got up about 3:00 to see what he was doing to cause the bed rails to rattle.
He said he had peed in the bucket.
This HAS to change!
People:
Sunday was a pretty good day, with one small time frame exception. TGF and the boys got here mid afternoon. She and I cleaned out 3 freezers (1 chest, 2 fridges). DSS came a little later and cut most of the grass. NOTE: this is the first time in over 30 years he has voluntarily cut our grass!!!
TGF and I went to take a few things from the freezer to their house, then pick up some groceries, pizza, and lawnmower gas.
It was a bit frustrating to get home and find the boys all outside. We'd tried to get them out earlier (beautiful weather), but they wouldn't go. When they were supposed to be keeping an eye on grandpa - they left him in the house alone!
Emotions:
As usual, I'm tired. If I don't get a decent night's rest, I just don't know what to do. A long time ago he was on Ambien; then it quit working. The nurse told me it is generally only a short term solution. Well, I still have some. I think I'll add one to his nightly pills one time. I know it can't hurt him; so if it gives him (and me!) a full night's sleep, what a blessing that would be!!
I do at least feel less angry at TGF. I think DSS must have told her how upset I was about her comment last weekend. It was never mentioned; but she certainly had a better attitude towards helping. Of course, it didn't help that I gave her a lot of things out of the freezer; and I bought pizza!
But by the time they left, I picked up the left over trash and clutter, finished getting dialysis set up and DH to bed .. I was so tired I was literally stumbling.
Sunday, September 15, 2013
Day 113
Saturday September 14, 2013
Physical:
I think he seemed a bit more "lucid" for the most part. At least where he was confused about where he is, he seemed to realize something was "off".Those times are fewer and farther between, but they happen.
He seems to be losing more control over body functions; or at least, his awareness of what he needs and when is slipping.That is creating more problems, because it means more episodes of getting him up and down - and yet, still having to clean up messes occasionally. The "clean up" doesn't bother me nearly as much as realizing he isn't aware of needing it.
He had a bad night (Friday night); but was ready to get up by about 12:30. That's unusual, as a lot of days he wants to stay in bed until middle or even late afternoon. He spent a lot of the afternoon dozing in his chair though.
people:
It was a a bit of an odd day. The next door little girls came over (while he was laying down). A friend came to visit me, and we sat in the den. She brought some chili, which he enjoyed. Then DSS came by in the evening. It would have been nice if he could have gotten there earlier so he could take off trash for us; but it didn't work that way. He visitedf awhile, and DH seemed to be mostly clear and alert.
Emotions:
Thursday night and Friday night were both nights of only 2 to 3 hours of interrupted sleep. By Saturday I was so exhausted, I was stumbling over my own feet. So anything I felt was tained by that. Saturday night started out the same ... less than an hour after waking him up for pills, he was awake again and wanted to get up to use the commode. An hour later he was "up" again - had turned on a light and had managed to reach the bookcase (but couldn't get the book back again). I got my quilt and pillow and sat in the chair in his room ... not at all a good night's sleep, but better than running through the house off and on. At daylight I got up and got an hour in my own comfy chair. Something has to change though, I can't continue to function at all if I can't get any rest.
Physical:
I think he seemed a bit more "lucid" for the most part. At least where he was confused about where he is, he seemed to realize something was "off".Those times are fewer and farther between, but they happen.
He seems to be losing more control over body functions; or at least, his awareness of what he needs and when is slipping.That is creating more problems, because it means more episodes of getting him up and down - and yet, still having to clean up messes occasionally. The "clean up" doesn't bother me nearly as much as realizing he isn't aware of needing it.
He had a bad night (Friday night); but was ready to get up by about 12:30. That's unusual, as a lot of days he wants to stay in bed until middle or even late afternoon. He spent a lot of the afternoon dozing in his chair though.
people:
It was a a bit of an odd day. The next door little girls came over (while he was laying down). A friend came to visit me, and we sat in the den. She brought some chili, which he enjoyed. Then DSS came by in the evening. It would have been nice if he could have gotten there earlier so he could take off trash for us; but it didn't work that way. He visitedf awhile, and DH seemed to be mostly clear and alert.
Emotions:
Thursday night and Friday night were both nights of only 2 to 3 hours of interrupted sleep. By Saturday I was so exhausted, I was stumbling over my own feet. So anything I felt was tained by that. Saturday night started out the same ... less than an hour after waking him up for pills, he was awake again and wanted to get up to use the commode. An hour later he was "up" again - had turned on a light and had managed to reach the bookcase (but couldn't get the book back again). I got my quilt and pillow and sat in the chair in his room ... not at all a good night's sleep, but better than running through the house off and on. At daylight I got up and got an hour in my own comfy chair. Something has to change though, I can't continue to function at all if I can't get any rest.
Saturday, September 14, 2013
Day 112
(Wednesday, Thursday and)Friday Septembeer 13, 2013I'm not keeping up with this very regularly. I'm just too tired; and it keeps getting harder to type when I can't see what I'm writing very well.
I am also not going to keep adding the vital signs. I don't do them every day .. some days it just doesn't work out. I still keep a spreadsheet, though that's more habit than anything else.
Physical:
There was no particular change until Friday evening. He said it had been an especially hard day, as he felt like he couldn't breathe well. That's the first time in over 12 years he's said that. He wasn't wheezing, and didn't sound "out of breath" .. but seemed to feel he wasn't getting enough oxygen. If he has another day like that I'll have the nurse check him again. I hope it's not time to up his O2 liter flow.
He's also almost never "here" any more. Nothing DSS or I say registers. Conversation (technically at 5:00 AM Saturday morning):
Me: what are you doing?
Him: trying to get up to go pay my bill.
Me: you're at home, there is no bill, it's 5 in the morning.
Him: OK.
Him: (a minute later) is the car outside?
Me: the car is parked where it always is, here at home.
Him: OK.
Him: (maybe 2 or 3 minutes later) This is no way to run a restaurant.
Me: no restaurant, you're at home.
Him: well is there any other staff here?
Me: just take a nap while you wait for them.
Thursday night when I said "see you in the morning", he said "maybe". I asked what he meant by that, and he said hi might drop dead in the night. Friday night he told me he didn't think he'd be around in another year. And more and more of his "mind trips" are with relatives of his that are dead.
Does all this mean anything? I have no idea., other than it shows clear mental changes. His "theme" of wanting to go home gets stronger ... all I can imagine is that he's unhappy with the way things are, and some how thinks that going "home" will make everything all right again.
He still has very little appetite; and his body functions are slowing down way too much too.
People:
The aide came Wednesday to bathe him. This was not the regular lady, but a nice sub. On Thursday the nurse came. A very odd thing happened: the neighbor came over with her 2 y/o. I couldn't understand her, but with the nurse's help, we figured she wanted to take the baby to use the bathroom. Apparently something was wrong with hers. That was the only time I've seen her in over a week.
On Friday the aide came very early, just after 9:00. I had slept late (due to another 3 AM wake up and couldn't get back to sleep for hours), and really had to scramble Just as she was finishing up, the dialysis nurse came to draw blood for labs. The good thing is that they can do that, and one more week of not having to struggle to take him to clinic. Of course, that also meant I can't get out to get groceries or pick up medicines.
Emotions:
Anything I say is suspect since I'm severely sleep-deprived. Two nights in a row, going on 3 or 4 hours (and the 4 hours was 2 at a time with a 3 plus hour interval). I'm depressed and sad, and very weepy.
When the nurse visits and we sit and talk, I tell her how he's been doing. She writes down everything, all the little incidents I describe, etc. But then she says something along the lines of "he's going to continue to get worse. have you given any thought as to what you're going to do?".. What I'm gong to do? About what??? I don't see anything here changing. No one is going to do any more about helping me out, other than DSS will try his best to at least get him to clinic. DSS's girlfriend made sure I was aware that "they work" and can't be coming out here ... so clearly not only does she have no intention of doing anything to help me, she's doing her best to limit DSS's time here too. And my son and DIL, now that school has started, have no more time for us at all .. no emails, no calls, nothing. My one girlfriend, who claims to "understand" my position (she was caretaker to her mother; but dementia was not an issue) seldom has time for me unless it's something *she* needs.
I want my house to look nice, and I'm discouraged that I'm not getting done the things I want to because I'm so tired that I seem to spend the afternoon in a fog, and have no energy
I wish there was something that could help DH sleep at night (he even stayed mostly awake Friday for an unusually long time, over 7 hours between his chair and his bed). I think there's something in the "care kit" I have - but I can't read the labels and certainly can't fill a syringe. I've told the nurse that, but she doesn't seem to remember. At one time she had said that when the time came that it looked like I might need anything from the kit, she'd prefill syringes for me; but that hasn't happened. I guess it's not tme. I wonder how much sleep he needs - so that I can get some - before it matters?
I've heard nothing else still about the lift (and forgot to ask the nurse). Maybe they've decided it's not needed until he's more completely bed-bound (since it won't help me get him from wheelchair to recliner and back). I know it takes a lot of space, maybe that's an issue. Whatever. I'll just keep taking Aleve and muddle through the best I can.
I'm really going to have to do a better job of keeping this up daily. Even if it seems there's nothing in particular to write about, it's too hard to remember when I let it go several days.
I am also not going to keep adding the vital signs. I don't do them every day .. some days it just doesn't work out. I still keep a spreadsheet, though that's more habit than anything else.
Physical:
There was no particular change until Friday evening. He said it had been an especially hard day, as he felt like he couldn't breathe well. That's the first time in over 12 years he's said that. He wasn't wheezing, and didn't sound "out of breath" .. but seemed to feel he wasn't getting enough oxygen. If he has another day like that I'll have the nurse check him again. I hope it's not time to up his O2 liter flow.
He's also almost never "here" any more. Nothing DSS or I say registers. Conversation (technically at 5:00 AM Saturday morning):
Me: what are you doing?
Him: trying to get up to go pay my bill.
Me: you're at home, there is no bill, it's 5 in the morning.
Him: OK.
Him: (a minute later) is the car outside?
Me: the car is parked where it always is, here at home.
Him: OK.
Him: (maybe 2 or 3 minutes later) This is no way to run a restaurant.
Me: no restaurant, you're at home.
Him: well is there any other staff here?
Me: just take a nap while you wait for them.
Thursday night when I said "see you in the morning", he said "maybe". I asked what he meant by that, and he said hi might drop dead in the night. Friday night he told me he didn't think he'd be around in another year. And more and more of his "mind trips" are with relatives of his that are dead.
Does all this mean anything? I have no idea., other than it shows clear mental changes. His "theme" of wanting to go home gets stronger ... all I can imagine is that he's unhappy with the way things are, and some how thinks that going "home" will make everything all right again.
He still has very little appetite; and his body functions are slowing down way too much too.
People:
The aide came Wednesday to bathe him. This was not the regular lady, but a nice sub. On Thursday the nurse came. A very odd thing happened: the neighbor came over with her 2 y/o. I couldn't understand her, but with the nurse's help, we figured she wanted to take the baby to use the bathroom. Apparently something was wrong with hers. That was the only time I've seen her in over a week.
On Friday the aide came very early, just after 9:00. I had slept late (due to another 3 AM wake up and couldn't get back to sleep for hours), and really had to scramble Just as she was finishing up, the dialysis nurse came to draw blood for labs. The good thing is that they can do that, and one more week of not having to struggle to take him to clinic. Of course, that also meant I can't get out to get groceries or pick up medicines.
Emotions:
Anything I say is suspect since I'm severely sleep-deprived. Two nights in a row, going on 3 or 4 hours (and the 4 hours was 2 at a time with a 3 plus hour interval). I'm depressed and sad, and very weepy.
When the nurse visits and we sit and talk, I tell her how he's been doing. She writes down everything, all the little incidents I describe, etc. But then she says something along the lines of "he's going to continue to get worse. have you given any thought as to what you're going to do?".. What I'm gong to do? About what??? I don't see anything here changing. No one is going to do any more about helping me out, other than DSS will try his best to at least get him to clinic. DSS's girlfriend made sure I was aware that "they work" and can't be coming out here ... so clearly not only does she have no intention of doing anything to help me, she's doing her best to limit DSS's time here too. And my son and DIL, now that school has started, have no more time for us at all .. no emails, no calls, nothing. My one girlfriend, who claims to "understand" my position (she was caretaker to her mother; but dementia was not an issue) seldom has time for me unless it's something *she* needs.
I want my house to look nice, and I'm discouraged that I'm not getting done the things I want to because I'm so tired that I seem to spend the afternoon in a fog, and have no energy
I wish there was something that could help DH sleep at night (he even stayed mostly awake Friday for an unusually long time, over 7 hours between his chair and his bed). I think there's something in the "care kit" I have - but I can't read the labels and certainly can't fill a syringe. I've told the nurse that, but she doesn't seem to remember. At one time she had said that when the time came that it looked like I might need anything from the kit, she'd prefill syringes for me; but that hasn't happened. I guess it's not tme. I wonder how much sleep he needs - so that I can get some - before it matters?
I've heard nothing else still about the lift (and forgot to ask the nurse). Maybe they've decided it's not needed until he's more completely bed-bound (since it won't help me get him from wheelchair to recliner and back). I know it takes a lot of space, maybe that's an issue. Whatever. I'll just keep taking Aleve and muddle through the best I can.
I'm really going to have to do a better job of keeping this up daily. Even if it seems there's nothing in particular to write about, it's too hard to remember when I let it go several days.
Wednesday, September 11, 2013
Day 109
(Monday and)Tuesday September 10, 2013
VS: 09/09/13, B/P 170/87, HR 83; 09/10/13, B/P 152/79, HR 76
Physical:
The last few days DH has mostly just stayed in bed. On Monday he was only up a few hours. Tuesday he was only up long enough to sit on the commode, and then just wanted to get back in bed. He was awake and alert for most of the evening, just watching TV. And, it took him close to an hour and a half to eat a small dinner - but at least he did eat most of it.
There has been some on-gong confusion, but it doesn't seem to be "extreme". He's not confused me for his mama for awhile now; but he rarely knows where he is (although some days, when asked, he'll just say "I'm not sure" or something, rather than give me a location). His mind continues to tell hiim he's not at home. I thought it might be the hospital bed throwing him off - but it's also happening when he's sitting in the living room.
People:
The aide came Monday to get him washed up. TGF came by in the late afternoon, but very briefly and he didn't see her. There was no one here Tuesday.
Emotions:
I'm still too mad at TGF to be depressed. I guess that's a good thing. Except that it's starting to wear off a bit, and be replaced by "what the heck am I going to do??"
The sad is always here, lurking underneath everything else.
VS: 09/09/13, B/P 170/87, HR 83; 09/10/13, B/P 152/79, HR 76
Physical:
The last few days DH has mostly just stayed in bed. On Monday he was only up a few hours. Tuesday he was only up long enough to sit on the commode, and then just wanted to get back in bed. He was awake and alert for most of the evening, just watching TV. And, it took him close to an hour and a half to eat a small dinner - but at least he did eat most of it.
There has been some on-gong confusion, but it doesn't seem to be "extreme". He's not confused me for his mama for awhile now; but he rarely knows where he is (although some days, when asked, he'll just say "I'm not sure" or something, rather than give me a location). His mind continues to tell hiim he's not at home. I thought it might be the hospital bed throwing him off - but it's also happening when he's sitting in the living room.
People:
The aide came Monday to get him washed up. TGF came by in the late afternoon, but very briefly and he didn't see her. There was no one here Tuesday.
Emotions:
I'm still too mad at TGF to be depressed. I guess that's a good thing. Except that it's starting to wear off a bit, and be replaced by "what the heck am I going to do??"
The sad is always here, lurking underneath everything else.
Monday, September 9, 2013
Day 107
(Saturday and)Sunday September 8, 2013
V/S: 0/7, B/P 176/102 (down to "normal" range by noon); HR 77
9/8: BP 192/87, HR 77
Physical:
He is weaker at times, but at random times he seems stronger. His breathing at night continues to sound ragged; but there's a lot of snoring. He has refused to use the BIPAP since he got on the oxygen.
When he got up - somewhere between 2:30 and 3:00 - he wanted to sit on the B/C first. He kept sitting doubled over (said no pain, don't know why sitting like that). He couldn't seem to sit up straight though, when trying to get him dressed and into the wheelchair. He kept bending over in the wheelchair too. Then getting him into his chair was way more difficult than usual. He just couldn't seem to straighten his legs at all.
Once in the chair, he did sit up for longer than usual, around 5 hours; but he was clearly confused a lot. Even DSS saw a lot of that going on.
He is again eating very little.
He woke me again at 4 AM, talking. I went in and asked who he was talking to, and he said "those people at the bank in New Bern". I told him to go back to sleep - which he did; but I couldn't as usual.
People:
There was no one here on Saturday. On Sunday TGF brought her boys over to do some jobs for me (theey did not do a very good job though), and she helped me with some visual issues. DSS came over later. He did the heparin injection; and they both helped make some changes in the bedroom to make it safer and to move the TV so he can see it better.
Emotions:
I got a letter in the mail that I thought concerned my vision and my driver's license. TGF confirmed it - I have until the end of September to get a doctor to complete a form stating I can drive, otherwise my license will be revoked. There is NO doctor who would comlete that form ... aside from the fact that I have no way of making an appointment and having someone come stay with DH at the same time and all within the next few weeks.
Since TGF got a bit irritated with me, commenting that *they* all work (obviously I never did and sit around doing nothing now), they can't be running all the way out here every day. I wasn't aware that's what I had been asking of them, but it sure will stop now. I'll just keep driving illegally, nothing else I can do.
Back in July I paid for them to get a trash sticker, with the understanding that DSS would grab our trash when he came out here and take it with his shop trash. Early this month, when mine and his stickers were not only expired but past the "grace" period, and they still hadn't gotten theirs, I went on and ordered my sticker online. TGF got their sticker between the time I ordered one and it came in the mail. But she didn't give it to DSS, so the day mine came he put it on the car and took a car full of trash. Now I have another load .. bags piled up in the hall, and outside. Did anyone bother to grab any of it? Of course not. So TGF most graciously (sarcasm) said she'd come by today (since she picks her boys up from school a mere 5 miles away) so I can take my trash and go to the local quick mart for milk and bread (did NOT offer to do it for me of course).
She said we should call J-Cats (county transport service). I will call, but I think DH's physical problems might be an issue. I do have the option of calling EMS for transport to get him to clinic. *IF* they're available, it's a mere $115 each day. And I guess I'll be forced to give up getting meds at the pharmacy that has been so good, and go back to either mail order, or get from the MUCH more expensive pharmacy where TGF works.
And just how is all this whining related to DH? Well, he can't be left alone. So if I need someone to drive me somewhere, it would mean needing TWO people. And it's hard enough just to get one.
OK, enough of complaining. I'll just have to do what I can; but I certainly won't be imposing on TGF (or DSS since she doesn't like for us to take him away from work) any more.
Besides being angry and frustrated, I just feel sad. I'm not sure who is this stranger in my home that I'm taking cre of. The man I married has gone away, and he's not coming back.
V/S: 0/7, B/P 176/102 (down to "normal" range by noon); HR 77
9/8: BP 192/87, HR 77
Physical:
He is weaker at times, but at random times he seems stronger. His breathing at night continues to sound ragged; but there's a lot of snoring. He has refused to use the BIPAP since he got on the oxygen.
When he got up - somewhere between 2:30 and 3:00 - he wanted to sit on the B/C first. He kept sitting doubled over (said no pain, don't know why sitting like that). He couldn't seem to sit up straight though, when trying to get him dressed and into the wheelchair. He kept bending over in the wheelchair too. Then getting him into his chair was way more difficult than usual. He just couldn't seem to straighten his legs at all.
Once in the chair, he did sit up for longer than usual, around 5 hours; but he was clearly confused a lot. Even DSS saw a lot of that going on.
He is again eating very little.
He woke me again at 4 AM, talking. I went in and asked who he was talking to, and he said "those people at the bank in New Bern". I told him to go back to sleep - which he did; but I couldn't as usual.
People:
There was no one here on Saturday. On Sunday TGF brought her boys over to do some jobs for me (theey did not do a very good job though), and she helped me with some visual issues. DSS came over later. He did the heparin injection; and they both helped make some changes in the bedroom to make it safer and to move the TV so he can see it better.
Emotions:
I got a letter in the mail that I thought concerned my vision and my driver's license. TGF confirmed it - I have until the end of September to get a doctor to complete a form stating I can drive, otherwise my license will be revoked. There is NO doctor who would comlete that form ... aside from the fact that I have no way of making an appointment and having someone come stay with DH at the same time and all within the next few weeks.
Since TGF got a bit irritated with me, commenting that *they* all work (obviously I never did and sit around doing nothing now), they can't be running all the way out here every day. I wasn't aware that's what I had been asking of them, but it sure will stop now. I'll just keep driving illegally, nothing else I can do.
Back in July I paid for them to get a trash sticker, with the understanding that DSS would grab our trash when he came out here and take it with his shop trash. Early this month, when mine and his stickers were not only expired but past the "grace" period, and they still hadn't gotten theirs, I went on and ordered my sticker online. TGF got their sticker between the time I ordered one and it came in the mail. But she didn't give it to DSS, so the day mine came he put it on the car and took a car full of trash. Now I have another load .. bags piled up in the hall, and outside. Did anyone bother to grab any of it? Of course not. So TGF most graciously (sarcasm) said she'd come by today (since she picks her boys up from school a mere 5 miles away) so I can take my trash and go to the local quick mart for milk and bread (did NOT offer to do it for me of course).
She said we should call J-Cats (county transport service). I will call, but I think DH's physical problems might be an issue. I do have the option of calling EMS for transport to get him to clinic. *IF* they're available, it's a mere $115 each day. And I guess I'll be forced to give up getting meds at the pharmacy that has been so good, and go back to either mail order, or get from the MUCH more expensive pharmacy where TGF works.
And just how is all this whining related to DH? Well, he can't be left alone. So if I need someone to drive me somewhere, it would mean needing TWO people. And it's hard enough just to get one.
OK, enough of complaining. I'll just have to do what I can; but I certainly won't be imposing on TGF (or DSS since she doesn't like for us to take him away from work) any more.
Besides being angry and frustrated, I just feel sad. I'm not sure who is this stranger in my home that I'm taking cre of. The man I married has gone away, and he's not coming back.
Saturday, September 7, 2013
Day 105
(Thursday and) Friday September 6, 2013
V/S: 09/05/13 B/P 152/78; HR 76; did not take on Friday due to too much activity for accuracy.
Physical:
DH's breathing continues to sound ragged at night, like he's struglling. I often have to check that he's still actually breathing the oxygen. ISince it's more often at night, it seems like it would help if the head of the bed was a bit elevated; but usually he doesn't like that. A time or two I've tried it anyway, but since he often manages to wiggle toward the foot of the bed, and at an angle, it doesn't make much difference anyway.
It remains strange to me how much upper body strength he has (especially his hands), and yet none at all in his legs. If he were lucid all the time I'd suspect he was "faking"; but that's not the case. I've still not heard about the patient lift, which kind of surprises me.
He spends more and more time in bed.. He also spends more and more time in a confused state. On Friday he became convinced *people* (not sure who) were trying to steal his stuff. He thought someone had taken the little leather jacket (had been Carl's as a baby) ... even when I showed it to him with the flashlight, he thought it was gone. At one point duringg the morning he got the gun cabinet open and took out a shotgun. That unnerved me a lot, even though I knew that NONE of the guns are loaded.. It wasn't shooting the gun that worried me, it was the handling of it - possibly knocking things over, breaking glass, etc. was an issue.
Laater I caught him trying to pull the over-the-bed table into the bed with him. When questioned, he said he was putting it into the car. I just told him "no, it stays here". I noticed the water bottle was gone, and he said he had thrown it out the car window. Fortunately, the lid was on. Wednesday he dumped a bottle of water (not a full one, but still) "out the window" (large wet spot on carpet!). I have a "sippy cup" I use for him for early morning and night time pill taking. Maybe I need another one for bedside instead of regular water bottles.
(Note: Saturday morning - when questioned, he said he was in church. I'm glad he finally got out of the bank parking lot.)
People:
On Thursday DSS came over in the late afternoon. He visited awhile (which is always good for DH, as he seems to pay more attention to DSS than anyone else). He also took a load of trash to the dump and got gas in the car for me, as well as did the heparin injections. Later, just as we were trying to eat dinner, the neighbor came over with 4 of her kids. There was a little bit of translation, but mostly they talked to each other in Spanish and seemed happy for us to just "enjoy" the antics of the 2 year old. For someone who had tried so hard to push food at us, it seemed very odd that she ignored that Jimmy's dinner was sitting there getting cold! She wanted to pray for Jimmy, as usual. There's nothing at all wrong with that; but I think she truly has no clue what's really going on with his health.
On Friday his sister came by for a visit (she called first!!). She and I had a nice visit, and she only spent a few minutes with DH (still in bed, and a bit "out of it"). Also my girlfriend came over, and did some yard stuff. After sister left, we visited some.
Emotions:
Friday was an especially stressful day. It was very late at night before I was able to talk to DSS's girlfriend to update her. She will let DSS know (seems to come easier from her) the latest. I told her I will need them to help me (when they come on Sunday) to rearrange the bedroom, so that only safe (and non-breakable) things are within his reach from the bed. We're also going to move TVs around so one in his room will have a better line of sight from the bed. I'll have to give up my slightly bigger one since the TV will be farther away from him; but with my limited vision, I mostly listen rather than watch, so putting his smaller one in my room won't matter.
I had a problem with internet Friday morning (actually started Thursday evening). After an hour and a half on the phone with HughesNet, I was left extremely upset and frustrated, and still no internet. I was finally told I'd have to wait until Monday morning for a tech to come realign the dish. About an hour later, all the lights came back on. Am I suspicious??? You betcha!!!!
I'm glad when I have company (not necessarily the neighbors, but always family), because it does seem to distract me from being weepy so much. But I'm also frustrated with myself at not getting things done around the house. I have to try harder to waste less time!
V/S: 09/05/13 B/P 152/78; HR 76; did not take on Friday due to too much activity for accuracy.
Physical:
DH's breathing continues to sound ragged at night, like he's struglling. I often have to check that he's still actually breathing the oxygen. ISince it's more often at night, it seems like it would help if the head of the bed was a bit elevated; but usually he doesn't like that. A time or two I've tried it anyway, but since he often manages to wiggle toward the foot of the bed, and at an angle, it doesn't make much difference anyway.
It remains strange to me how much upper body strength he has (especially his hands), and yet none at all in his legs. If he were lucid all the time I'd suspect he was "faking"; but that's not the case. I've still not heard about the patient lift, which kind of surprises me.
He spends more and more time in bed.. He also spends more and more time in a confused state. On Friday he became convinced *people* (not sure who) were trying to steal his stuff. He thought someone had taken the little leather jacket (had been Carl's as a baby) ... even when I showed it to him with the flashlight, he thought it was gone. At one point duringg the morning he got the gun cabinet open and took out a shotgun. That unnerved me a lot, even though I knew that NONE of the guns are loaded.. It wasn't shooting the gun that worried me, it was the handling of it - possibly knocking things over, breaking glass, etc. was an issue.
Laater I caught him trying to pull the over-the-bed table into the bed with him. When questioned, he said he was putting it into the car. I just told him "no, it stays here". I noticed the water bottle was gone, and he said he had thrown it out the car window. Fortunately, the lid was on. Wednesday he dumped a bottle of water (not a full one, but still) "out the window" (large wet spot on carpet!). I have a "sippy cup" I use for him for early morning and night time pill taking. Maybe I need another one for bedside instead of regular water bottles.
(Note: Saturday morning - when questioned, he said he was in church. I'm glad he finally got out of the bank parking lot.)
People:
On Thursday DSS came over in the late afternoon. He visited awhile (which is always good for DH, as he seems to pay more attention to DSS than anyone else). He also took a load of trash to the dump and got gas in the car for me, as well as did the heparin injections. Later, just as we were trying to eat dinner, the neighbor came over with 4 of her kids. There was a little bit of translation, but mostly they talked to each other in Spanish and seemed happy for us to just "enjoy" the antics of the 2 year old. For someone who had tried so hard to push food at us, it seemed very odd that she ignored that Jimmy's dinner was sitting there getting cold! She wanted to pray for Jimmy, as usual. There's nothing at all wrong with that; but I think she truly has no clue what's really going on with his health.
On Friday his sister came by for a visit (she called first!!). She and I had a nice visit, and she only spent a few minutes with DH (still in bed, and a bit "out of it"). Also my girlfriend came over, and did some yard stuff. After sister left, we visited some.
Emotions:
Friday was an especially stressful day. It was very late at night before I was able to talk to DSS's girlfriend to update her. She will let DSS know (seems to come easier from her) the latest. I told her I will need them to help me (when they come on Sunday) to rearrange the bedroom, so that only safe (and non-breakable) things are within his reach from the bed. We're also going to move TVs around so one in his room will have a better line of sight from the bed. I'll have to give up my slightly bigger one since the TV will be farther away from him; but with my limited vision, I mostly listen rather than watch, so putting his smaller one in my room won't matter.
I had a problem with internet Friday morning (actually started Thursday evening). After an hour and a half on the phone with HughesNet, I was left extremely upset and frustrated, and still no internet. I was finally told I'd have to wait until Monday morning for a tech to come realign the dish. About an hour later, all the lights came back on. Am I suspicious??? You betcha!!!!
I'm glad when I have company (not necessarily the neighbors, but always family), because it does seem to distract me from being weepy so much. But I'm also frustrated with myself at not getting things done around the house. I have to try harder to waste less time!
Thursday, September 5, 2013
Day 103
Wednesday, September 4, 2013
V/S: B/P 170/89; HR 75
Physical:
This was another stay-in-bed-dall-day kind of day. The aide came around 11:30ish. He told her he felt extra sleepy. Of course, he also told her he couldn't leave because the car wouldn't start. His mind has been "stuck" at the bank for awhile now. Anyway, she got him bathed and dressed and up, and I got him into his chair. He likes the lift chair a lot, and likes it with the hoot rest up (which he didn't especially like to do on the previous recliner; but I think maybe it was because it was too hard to get up and down). By only 2 hours up he was saying he wanted to lay back down, but he did wait until it had been 3 hours (and I rushed to get in the room and do some dusting and change the sheets).
Later in the afternoon/early evening he said he was ready to get up but wanted to sit on the commode first. After sitting for awhile, he called me. He said he thought he was ready to get up but then felt "woozy" and wanted to lay back down instead. He said for the rest of the evening he "felt bad", but couldn't put a name to anything in particular. He didn't want to get undressed (highly unusual), and refused to eat anything (even when I offered a pork chop!). I did turn the TV on for awhile, for his favorite show, but he mostly slept through it.
Since he got his weekly epogen shot at home, I now wonder if that makes him feel bad. Always before he's been at the clinic; and by the time he'd had to get back in the car, ride a bit while I ran errands, then get out of the car at home, he always wanted to lay down the rest of the day. I never connected feeling bad with the shot because he was so exhausted; but this time he wasn't, and yet, by evening was feeling bad.
(Note: this morning when I took the "early" pill he said he felt OK, which seems to me to confirm my suspicion that the shot makes him feel bad).
People:
The aide came and got him bathed. In the late afternoon the supply delivery came (I was kind of surprised it was the "regular" guy since it was on a holiday schedule. He always askes how DH is doing; and he knows the cats by name and speaks to them if I don't have them shut up in another room). After the supplies, a nurse from the clinic came out to give DH his epogen shot (as mentioned above). They're working on getting it so he doesn't have to go into the clinic so often. The regular nurse will eventually be giving him the shots, but she's sick right now. Since they had already changed his instructions to "out patient", and had already had the suppies sent here, someone from the clinic had to come out. It wasn't the regular clinic nurse (I get the feeling she doesn't like having to come out here. She's nice, but I do miss the nurse he used to have. She was friendlier, and didn't mind coming out here sometimes). Later in the evening our grandson called so he could talk to grandpa. I heard DH tell DGS he was waiting in the bank parking lot (he had told the aide earlier he couldn't leave because the car wouldn't start). I found out later from DSS that DH told DGS that I had taken the hospital bed to work with me that morning. When I questioned DH about that later, he said he'd been in the bed of course.
I talked with DSS - he calls almost every day.
Emotions:
I've mentioned feeling lonely. I miss family when they aren't here, but I know perfectly well they can't be but just so much. The thing no one really grasps yet is that most of the time DH has already "left" me. He's off in his own little world, and often seems either puzzled or frustrated that I'm not sharing that world (and more and more often thinks I'm his mother anyway). He's not in pain, and doesn't too often say he feels bad. I know when he struggles to breathe he's uncomfortable; but we've not yet had to turn up the oxygen level. When the nurses come his sats are usually in the 90s still (with the oxygen). I wonder if they drop at night since he so often sounds like he's struglling more, but no way to check that.
Anyway, I've started having trouble sleeping. Not because he wakes me up; but I don't sleep very soundly to start with. So mice in the kitchen wake me up. Or DH breathing particularly hard, or wheezing, or coughing, wakes me up. And sometimes I don't even know what. But I almost always have a very hard time getting back to sleep. Last night I was awake for hours ... I checked email, watched news on TV, pinned the hem in a tablecloth, ate a bowl of cereal. Nothing helped, it was well after 5 AM before I got back to sleep; so of course I'm tired, groggy, headachy. So I'm not sure what emotions are valid and what are just from sleepy. I feel sad and lonely a lot, but I think that's just something I have to go through on this journey with DH. As I've told the different hospice people, there's no instruction manual for dementia. And unless someone else were physically living here (been there, done that, don't especially want to do it again!!), there's no way for anyone else to really comprehend what it's like.
I think the only way to not feel sad, or any of the other emotions I'm going through, would be to have no feelings at all. If that were the case, I'd put DH in a facility and never look back. That's Not gonna happen.
V/S: B/P 170/89; HR 75
Physical:
This was another stay-in-bed-dall-day kind of day. The aide came around 11:30ish. He told her he felt extra sleepy. Of course, he also told her he couldn't leave because the car wouldn't start. His mind has been "stuck" at the bank for awhile now. Anyway, she got him bathed and dressed and up, and I got him into his chair. He likes the lift chair a lot, and likes it with the hoot rest up (which he didn't especially like to do on the previous recliner; but I think maybe it was because it was too hard to get up and down). By only 2 hours up he was saying he wanted to lay back down, but he did wait until it had been 3 hours (and I rushed to get in the room and do some dusting and change the sheets).
Later in the afternoon/early evening he said he was ready to get up but wanted to sit on the commode first. After sitting for awhile, he called me. He said he thought he was ready to get up but then felt "woozy" and wanted to lay back down instead. He said for the rest of the evening he "felt bad", but couldn't put a name to anything in particular. He didn't want to get undressed (highly unusual), and refused to eat anything (even when I offered a pork chop!). I did turn the TV on for awhile, for his favorite show, but he mostly slept through it.
Since he got his weekly epogen shot at home, I now wonder if that makes him feel bad. Always before he's been at the clinic; and by the time he'd had to get back in the car, ride a bit while I ran errands, then get out of the car at home, he always wanted to lay down the rest of the day. I never connected feeling bad with the shot because he was so exhausted; but this time he wasn't, and yet, by evening was feeling bad.
(Note: this morning when I took the "early" pill he said he felt OK, which seems to me to confirm my suspicion that the shot makes him feel bad).
People:
The aide came and got him bathed. In the late afternoon the supply delivery came (I was kind of surprised it was the "regular" guy since it was on a holiday schedule. He always askes how DH is doing; and he knows the cats by name and speaks to them if I don't have them shut up in another room). After the supplies, a nurse from the clinic came out to give DH his epogen shot (as mentioned above). They're working on getting it so he doesn't have to go into the clinic so often. The regular nurse will eventually be giving him the shots, but she's sick right now. Since they had already changed his instructions to "out patient", and had already had the suppies sent here, someone from the clinic had to come out. It wasn't the regular clinic nurse (I get the feeling she doesn't like having to come out here. She's nice, but I do miss the nurse he used to have. She was friendlier, and didn't mind coming out here sometimes). Later in the evening our grandson called so he could talk to grandpa. I heard DH tell DGS he was waiting in the bank parking lot (he had told the aide earlier he couldn't leave because the car wouldn't start). I found out later from DSS that DH told DGS that I had taken the hospital bed to work with me that morning. When I questioned DH about that later, he said he'd been in the bed of course.
I talked with DSS - he calls almost every day.
Emotions:
I've mentioned feeling lonely. I miss family when they aren't here, but I know perfectly well they can't be but just so much. The thing no one really grasps yet is that most of the time DH has already "left" me. He's off in his own little world, and often seems either puzzled or frustrated that I'm not sharing that world (and more and more often thinks I'm his mother anyway). He's not in pain, and doesn't too often say he feels bad. I know when he struggles to breathe he's uncomfortable; but we've not yet had to turn up the oxygen level. When the nurses come his sats are usually in the 90s still (with the oxygen). I wonder if they drop at night since he so often sounds like he's struglling more, but no way to check that.
Anyway, I've started having trouble sleeping. Not because he wakes me up; but I don't sleep very soundly to start with. So mice in the kitchen wake me up. Or DH breathing particularly hard, or wheezing, or coughing, wakes me up. And sometimes I don't even know what. But I almost always have a very hard time getting back to sleep. Last night I was awake for hours ... I checked email, watched news on TV, pinned the hem in a tablecloth, ate a bowl of cereal. Nothing helped, it was well after 5 AM before I got back to sleep; so of course I'm tired, groggy, headachy. So I'm not sure what emotions are valid and what are just from sleepy. I feel sad and lonely a lot, but I think that's just something I have to go through on this journey with DH. As I've told the different hospice people, there's no instruction manual for dementia. And unless someone else were physically living here (been there, done that, don't especially want to do it again!!), there's no way for anyone else to really comprehend what it's like.
I think the only way to not feel sad, or any of the other emotions I'm going through, would be to have no feelings at all. If that were the case, I'd put DH in a facility and never look back. That's Not gonna happen.
Wednesday, September 4, 2013
Day 102
(Monday and) Tuesday, September 3, 2013
I am going to start adding vital signs. I used to take copies of the spreadsheets I keep to his doctor appointments, but now he has none. I also used to take them to the PD nurse; but the new one doesn't seem at all interested, so I quit. Now when the nurse comes I can show her the last few days sometimes, but she doesn't need to see my spreadsheet. I see a gradual trend that his B.P is getting higher. No one else sees it; and when they come, once a week, and take it - it's never quite as high as in the morning. I wonder why that is. Is my "cuff" faulty? I long since quit taking his temperature, because I cannot read the thermometer. No one seems concerned about that either - even though at the beginning they emphasized keeping track to ward off infection.
At (approximately) 10 AM 09/03/13, B/P 187/93, HR 78.
Physical:
I'm not seeing any particular change. In fact, there have been fewer nights with the loud wheezing. Perhaps he's keeping the oxygen on better. The confusion/disorientation is more of the time, but not extreme. I rarely "go along", and he seems for the most part to accept what I tell him.
I got him up around noon, and he sat in the lift chair a couple of hours or so - about 2 1/2 I think. Then he wanted to lay down. He never got back up. Some days he does that. He was more alert later in the evening, and I turned on his TV. Plus he ate a pretty decent supper.
One problem that's getting to be worse is being *wet*. Sometimes he can't tell. He has very little urinary output, due to the renal failure. But some days it's more than others. The most recent issue is that he thinks he has to pee, and knows he can't get to the commode in time, so reaches for the urinal. Only, he can't seem to manage that - he misses. So the disposable pull-ups do no good in that case. He got himself totally soaked, and I had to dry him off before putting dry pull-ups on him. I put a second (smaller) pad under him rather than try to get the big one off first (so today, Wednesday, I'll have to wash both). Then later, when I was trying to get the lights out, he kept fidgeting. He said he was trying to tell what was wet .. finally sadi the sheet was wet! So I had to partially unmake the bed, put a clean sheet on, remake it for him to sleep.
People:
I never know when the nurse is coming. It turns out she's still sick and not allowed back to work this week. So a different substitute came, a nice (cute) young girl. The social worker also came; and later, the chaplain showed up as well. The nurse checked him (this was not long after he had laid down, but he was snoring - and went right back to sleep after she left the room!). His B/P wasn't quite as high; and again, she didn't think the high B/P was something to be concerned about. He also had a bit of temperature (99.?, and "normal" for him is on the low side). But since he said he didn't feel bad, she wasn't overly concerned. I'll have to watch closely to make sure he's not getting another infection.
I enjoyed visiting with them. They're the only ones who come in and ask how *I* am, what do *I* need. They comfort and reassure me, and at times I really do need that. The social worker is going to check into getting us a patient lift. We should be able to get one, plus if they send it they'll send someone to train me on using it properly. Usually (so far) any request like that has happened very quickly.
Their visit didn't last very long. The nurse had to get on to other patients (and it was getting pretty late in the afternoon); the social worker had to leave to show the nurse the way; and the chaplain had to leave because he had them both blocked in.
In the evening our grandson (14) called. The cordless phone died, as usual (I believe it's time to replace. No idea how old it is, it was my parent's phone) so I couldn't take the phone to DH to talk to him. There's an outlet in the bedroom that doesn't work, and I see no reason to have a working phone in there to disturb him!
Emotions:
What a roller coaster. I always get weepy talking to the chaplain; and after they left, I couldn't seem to stop. No particular reason I could name; but after they walked out the door, I just felt so very alone. I guess that's just something I need to learn to live with.
Monday, September 2, 2013
Day 100
Sunday September 1 2013
It's hard to believe it's been 100 days since I started this record. Sometimes I ask myself ... since everything happened so fast ... would DH not be in the condition he's in if we had not started the whole hospice process? Or would he be the same, only I'd be more alone, more stressed, and totally bewildered?
Today (Sunday) instead of the usual "family" dinner, we went out. DSS and his girlfriend had a rare chance to go out without any kids aong, so decided we'd all go to a restaurant. Once before I turned down the chance to go out - I thought it might be too hard on DH. But, sDSS seemed to really like the idea of taking his dad out, so we tried it.
It was a mixed belessing to be sure. DSS now has a much clearer picture of the struggle I go through every time I have to take DH somewhere. It was hard with his strength and TGF and I to back up .. and I most often have to do it alone.
It was a struggle for DH as well. I believe he very much enjoyed his meal - he ate much better than normal (although he has been doing a little better recently). But he was clearly tired; he was slumped over in his wheelchair, and it took him way longer to eat a small amount than the ret of us took. I cut his meat up for him, but he continued to struggle with a knife anyway.
When we got home, he was SO ready to go to bed. I thought he'd sleep better all night; and maybe he would have if not for a strong (loud!) thunderstorm around 3 AM that lasted around an hour and a half. Since it woke me up, I went in to check on him - he was confused again; but I think he finally went back to sleep.
I don't know if this is something worth trying again or not; or at least, not often. He did enjoy the meal. But the process of getting him somewhere is exhausting for him and for whoever is having to physically help him. I'm not sure it's possible for him to get any weaker than he already is; but if he does, I really don't know how I'll be able to handle it.
A facility is clearly not an option. I may not do the best job. But a nurse working 12 hour shifts with multiple patients to deal with, plus all their paperwork, couldn't necessarily do a better one. And it's near impossible to find a facility (the doctors tried - I didn't!) that will take him on with his multiple health issues, medicines, and the dialysis. At best, they would forcefully take him (by stretcher in transport van) to hemodialysis instead of continuing peritoneal. I believe he would be not only confused and disoriented, he'd be depressed and miserable.
Nope. Not gonna happen.
So, we ust carry on as best we can, and wait and see what the next 100 days holds.
It's hard to believe it's been 100 days since I started this record. Sometimes I ask myself ... since everything happened so fast ... would DH not be in the condition he's in if we had not started the whole hospice process? Or would he be the same, only I'd be more alone, more stressed, and totally bewildered?
Today (Sunday) instead of the usual "family" dinner, we went out. DSS and his girlfriend had a rare chance to go out without any kids aong, so decided we'd all go to a restaurant. Once before I turned down the chance to go out - I thought it might be too hard on DH. But, sDSS seemed to really like the idea of taking his dad out, so we tried it.
It was a mixed belessing to be sure. DSS now has a much clearer picture of the struggle I go through every time I have to take DH somewhere. It was hard with his strength and TGF and I to back up .. and I most often have to do it alone.
It was a struggle for DH as well. I believe he very much enjoyed his meal - he ate much better than normal (although he has been doing a little better recently). But he was clearly tired; he was slumped over in his wheelchair, and it took him way longer to eat a small amount than the ret of us took. I cut his meat up for him, but he continued to struggle with a knife anyway.
When we got home, he was SO ready to go to bed. I thought he'd sleep better all night; and maybe he would have if not for a strong (loud!) thunderstorm around 3 AM that lasted around an hour and a half. Since it woke me up, I went in to check on him - he was confused again; but I think he finally went back to sleep.
I don't know if this is something worth trying again or not; or at least, not often. He did enjoy the meal. But the process of getting him somewhere is exhausting for him and for whoever is having to physically help him. I'm not sure it's possible for him to get any weaker than he already is; but if he does, I really don't know how I'll be able to handle it.
A facility is clearly not an option. I may not do the best job. But a nurse working 12 hour shifts with multiple patients to deal with, plus all their paperwork, couldn't necessarily do a better one. And it's near impossible to find a facility (the doctors tried - I didn't!) that will take him on with his multiple health issues, medicines, and the dialysis. At best, they would forcefully take him (by stretcher in transport van) to hemodialysis instead of continuing peritoneal. I believe he would be not only confused and disoriented, he'd be depressed and miserable.
Nope. Not gonna happen.
So, we ust carry on as best we can, and wait and see what the next 100 days holds.
Sunday, September 1, 2013
Day 99
(Friday and) Saturday August 31, 2013
Physical:
As far as I can tell, DH seems to be on a bit of a plateau lately. His breathing at night is very rough, and I often have to get up to see if he still has his oxygen canula in place. He has not had any "extreme" mind trips, but has on-going mild confusion. The biggest thing lately is the "wet pants" ... even though he is mostly incontinent, he at random times becomes aware that his pants are wet and wants them changed. Several times during the night he has called me and asked me to change his diaper (and honestly, I don't know if he's being sarcastic or not!)
He has a sore knee and a skinned place (and now showing bruising) from his fall Thursday, but isn't showing any other signs from that.
He now has a comfortable recliner he can sit in (I tried it out, it does seem to be comfy). It is much easier to get him up and down; but he still doesn't want to sit up any longer at a time.
Several nights he's wanted to go to bed but watch TV; and then call me to turn off the TV (he still can't remember how to use the remote; plus he keeps dropping it). One night he insisted I not raise the bed because it made it harder to watch TV - even though the TV was off.
People:
The aide was here Friday, but came very early. That put his up and down schedule off a bit - but since he hates being on any schedule, it didn't matter that much.
DS and DDIL came Saturday, but didn't stay long; they brought the chair, but had too many other things to do to be able to stay and visit. DSS called, as alwlays, to check on him.
Emotions:
Depressed that no one ever asks how I am. The nurses and the aide understand and sympathise, and try to encourage me. It would be nice if friends or family did. But since they don't really understand, they can't sympathize. So one day a week I get to tell someone my concerns, my fears, my sadness. The rest of the time I just write it down here - because even though no one reads this blog, it helps to try to verbalize my feelings. Some.
Physical:
As far as I can tell, DH seems to be on a bit of a plateau lately. His breathing at night is very rough, and I often have to get up to see if he still has his oxygen canula in place. He has not had any "extreme" mind trips, but has on-going mild confusion. The biggest thing lately is the "wet pants" ... even though he is mostly incontinent, he at random times becomes aware that his pants are wet and wants them changed. Several times during the night he has called me and asked me to change his diaper (and honestly, I don't know if he's being sarcastic or not!)
He has a sore knee and a skinned place (and now showing bruising) from his fall Thursday, but isn't showing any other signs from that.
He now has a comfortable recliner he can sit in (I tried it out, it does seem to be comfy). It is much easier to get him up and down; but he still doesn't want to sit up any longer at a time.
Several nights he's wanted to go to bed but watch TV; and then call me to turn off the TV (he still can't remember how to use the remote; plus he keeps dropping it). One night he insisted I not raise the bed because it made it harder to watch TV - even though the TV was off.
People:
The aide was here Friday, but came very early. That put his up and down schedule off a bit - but since he hates being on any schedule, it didn't matter that much.
DS and DDIL came Saturday, but didn't stay long; they brought the chair, but had too many other things to do to be able to stay and visit. DSS called, as alwlays, to check on him.
Emotions:
Depressed that no one ever asks how I am. The nurses and the aide understand and sympathise, and try to encourage me. It would be nice if friends or family did. But since they don't really understand, they can't sympathize. So one day a week I get to tell someone my concerns, my fears, my sadness. The rest of the time I just write it down here - because even though no one reads this blog, it helps to try to verbalize my feelings. Some.
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