Day 196
(Friday and) Saturday December 7, 2013
Physical:
Friday was a quiet day for DH; he stayed in bed all day. Partly because he didn't feel like "bothering"; but also because I couldn't get the remote in the living room to work, so he just watched his TV in his room. He asked to have his hair washed, but the CNA can only use a chemical "dry" wash. I don't much like the way it makes his hair feel .. but we'll have to wait for a warmer day to attempt a regular shampoo. On Saturday he got up early, and stayed up until around dark. He was still awake after 11:00 though. I was told he ate pretty good, though a lot was snackis and treats.
People:
On Friday the CNA came as usual. A friend came by and helped me with some decorating. On Saturday DSS spent the whole day here with DH. I spent the day with DS and DIL and grands 2 hours away. TGF was here from mid afternoon until we got home. I think it was a bit of an eye-opening experience for DSS to see what I deal with daily. When they brought me home .. 10:30ish I think .. everyone stayed and visited a bit. That was actually very nice (at Thanksgiving the families were divided because of the space).
Emotions:
Getting Christmas decorations up helped my mood a lot. I still have more to do, but I'm less worried about it now. I don't even care if trees get decorated (although I think a lot of the grands plan to tackle that next weekend). I got extremely frustrated with DH this morning. But I had a good "day off", and I'm really trying to be more patient.
It's a very very cold gray wet day, and that makes it hard for me to accomplish much. I have laundry to do; but thankfully tI did not come home to a big mess last night. I may move furniture today .. that should make me tired enough to not get moody in this weather!
Sunday, December 8, 2013
Friday, December 6, 2013
Day 194
Day 194
Thursday December 5, 2013
I believe I got my days mixed up yet again. I don't think the actual number matters all that much since I started dating each entry anyway.
I think yesterday's entry got a bit jumbled .. that happpens when I'm too tired and get interruptions!
Physical:
Thursday was a bit of a better day. Well, mostly. I went to get DH up .. because he kept stirring around and fretting. But then he didn't want to get up. He ended up staying in bed until the CNA came. Once he was up, he seemed OK, only minorly confused; and he was alert in between naps.
I changed the meals regimen a bit. I gave him a pot pie around 4:00, and then a ham sandwich around 7:30. I don't know if my theory was right or not; but once he finally went to slee, he did sleep through the night (other than the coughing). About 11:00 (PM) he insisted on getting up to use the commode. I was NOT happy .. could barely hold my eyes open at the time. And then he did Nothing!
People:
A substitute CNA came, a lady we've had before and she's very nice. We ended up having a long conversation. The chaplain came. I'm always delighted to see him .. he's one of those kind people who just make me feel comforted. Unfortunately, timing was not great. We did chat some, but then the CNA got there. He went in to see DH before the CNA got started with the bath. But then he got a page, so the visit was shortened. That was disappointing, but it happens. He did say he'd come back next week.
Emotions:
I've said before, emotions expressed when I'm tired are not "true" feelings, as they are colored by exhaustion and not to be trusted. I did get a better night's sleep, once I finally got to settle down. I don't ever sleep soundly, as I'm very aware when he gets a coughing spell. But if I don't have to wake up enough to get up, I am usually able to go back to sleep. I did not want to get up, but it wasn't as hard as yesterday!
I have been able to make a bit of a start on Christmas decorating. But the outside looks quite horrible. The black cat from Halloween is still on the porch (under the glider). An old worn out "bookcase" (that was actually the top plart of a china hutch that someone threw away years ago) is on the porch waiting to get to the burn pile - along with, again, many weeks worth of cardboard tht they refuse to put into the truck with the trash (but then, they keep ignoring part of the trash even when very specifically reminded). I thinkTGF wanted it .. but they think I should just leave things in the house until it suits them to take them away. I am NOT a warehouose, and I'm tired of doing that. (frankly, I'm sick to death of the whole attitude that I shouldn't have or do anything that they can't have or do .. I think after having done the best I could to riase my son, partially raise DSS, have both of them along with wife and 2 kids (NOT at the same time!) live with us for several years, I've earned the right to try to have my home the way I want it.
I *might* have some help today (no idea with what .. decorating, books, yard, or what?) .. but I've been let down so many times that I won't count on it until it happens. Also, I still *might* get to go to the parade tomorrow. At one point it was looking like the parade might get rained out, or at least the band not be able to be in it. But it's sounding more like the rain will be earlier in the day (parade is not until 3:00) .. so waiting to see how things go. I SO need that day off!!
Thursday December 5, 2013
I believe I got my days mixed up yet again. I don't think the actual number matters all that much since I started dating each entry anyway.
I think yesterday's entry got a bit jumbled .. that happpens when I'm too tired and get interruptions!
Physical:
Thursday was a bit of a better day. Well, mostly. I went to get DH up .. because he kept stirring around and fretting. But then he didn't want to get up. He ended up staying in bed until the CNA came. Once he was up, he seemed OK, only minorly confused; and he was alert in between naps.
I changed the meals regimen a bit. I gave him a pot pie around 4:00, and then a ham sandwich around 7:30. I don't know if my theory was right or not; but once he finally went to slee, he did sleep through the night (other than the coughing). About 11:00 (PM) he insisted on getting up to use the commode. I was NOT happy .. could barely hold my eyes open at the time. And then he did Nothing!
People:
A substitute CNA came, a lady we've had before and she's very nice. We ended up having a long conversation. The chaplain came. I'm always delighted to see him .. he's one of those kind people who just make me feel comforted. Unfortunately, timing was not great. We did chat some, but then the CNA got there. He went in to see DH before the CNA got started with the bath. But then he got a page, so the visit was shortened. That was disappointing, but it happens. He did say he'd come back next week.
Emotions:
I've said before, emotions expressed when I'm tired are not "true" feelings, as they are colored by exhaustion and not to be trusted. I did get a better night's sleep, once I finally got to settle down. I don't ever sleep soundly, as I'm very aware when he gets a coughing spell. But if I don't have to wake up enough to get up, I am usually able to go back to sleep. I did not want to get up, but it wasn't as hard as yesterday!
I have been able to make a bit of a start on Christmas decorating. But the outside looks quite horrible. The black cat from Halloween is still on the porch (under the glider). An old worn out "bookcase" (that was actually the top plart of a china hutch that someone threw away years ago) is on the porch waiting to get to the burn pile - along with, again, many weeks worth of cardboard tht they refuse to put into the truck with the trash (but then, they keep ignoring part of the trash even when very specifically reminded). I thinkTGF wanted it .. but they think I should just leave things in the house until it suits them to take them away. I am NOT a warehouose, and I'm tired of doing that. (frankly, I'm sick to death of the whole attitude that I shouldn't have or do anything that they can't have or do .. I think after having done the best I could to riase my son, partially raise DSS, have both of them along with wife and 2 kids (NOT at the same time!) live with us for several years, I've earned the right to try to have my home the way I want it.
I *might* have some help today (no idea with what .. decorating, books, yard, or what?) .. but I've been let down so many times that I won't count on it until it happens. Also, I still *might* get to go to the parade tomorrow. At one point it was looking like the parade might get rained out, or at least the band not be able to be in it. But it's sounding more like the rain will be earlier in the day (parade is not until 3:00) .. so waiting to see how things go. I SO need that day off!!
Thursday, December 5, 2013
Day 194\3
Day 194
Wednesday, December 4, 2013
Physical:
I don't know if we're entering a new phase, or if the past few "quiet" weeks were just a fluke. DH is not sleeping well the last few nights, is restless, and is becoming more adamant about what he believes is going on; and argumentative. I have not been able to "sooth" him into going back to sleep without a huge amount of stress. Last night (Wednesday night) was particularly bad. To start with, he resisted going to bed until close to 9:00. When I tried to move him from his chair to the wheelchair, he just went completely limp. In the end, he just "sat" .. and there was no way I could lift him. I tried to get him back down in the chair, but I couldn't hold him and reach the control; so he slid down to the foot rest .. which couldn't hold him, so he ended up tipping the chair over (not no top of him) and slid to the floor. I had no choice but call DSS to help get him up.
That made it after 10:00 before getting him settled in bed. By 1`2:45 he was awake again, flippping the covers and trying to get out of the bed. I got him calmed down; but around 3:30 he started again. He was convinced there was a mortuary upstairs and he was NOT going to stay here. It took nearly an hour to persuade him there is no mortuary and no up or down stairs. And then he suddenly told me he didn't want to get up (as if I'd been trying to get him up!). He did finally go back to sleep, but was restless the rest of the night.
I got interrupted and completely lost my train of thought. The phone rang several times (non important calls). DH couldn't make up his mind if he wanted to get up or not. The chaplain came by, which is always a welcome visit even if short. A substitute CNA came, very nice lady.
The nurse was here yesterday, chatted with her.
I'm too sleep-deprived to trust whatever feelings I have right now. Hopefully I can sneak in an afternoon nap!
Another note: on Tuesday I made a pot roast in the crock pot. DH ate that the last 2 nights. I wonder if there's any relation between his "bad" nights and a heavier meal? I think he'll have something light tonight, and see if it makes a difference. If it seems to .. much as he loves beef .. I'm thinking it's going to have to be much more restricted, and only for lunch instead of at night.
Then again, maybe I'm just grasping at straws.
Wednesday, December 4, 2013
Physical:
I don't know if we're entering a new phase, or if the past few "quiet" weeks were just a fluke. DH is not sleeping well the last few nights, is restless, and is becoming more adamant about what he believes is going on; and argumentative. I have not been able to "sooth" him into going back to sleep without a huge amount of stress. Last night (Wednesday night) was particularly bad. To start with, he resisted going to bed until close to 9:00. When I tried to move him from his chair to the wheelchair, he just went completely limp. In the end, he just "sat" .. and there was no way I could lift him. I tried to get him back down in the chair, but I couldn't hold him and reach the control; so he slid down to the foot rest .. which couldn't hold him, so he ended up tipping the chair over (not no top of him) and slid to the floor. I had no choice but call DSS to help get him up.
That made it after 10:00 before getting him settled in bed. By 1`2:45 he was awake again, flippping the covers and trying to get out of the bed. I got him calmed down; but around 3:30 he started again. He was convinced there was a mortuary upstairs and he was NOT going to stay here. It took nearly an hour to persuade him there is no mortuary and no up or down stairs. And then he suddenly told me he didn't want to get up (as if I'd been trying to get him up!). He did finally go back to sleep, but was restless the rest of the night.
I got interrupted and completely lost my train of thought. The phone rang several times (non important calls). DH couldn't make up his mind if he wanted to get up or not. The chaplain came by, which is always a welcome visit even if short. A substitute CNA came, very nice lady.
The nurse was here yesterday, chatted with her.
I'm too sleep-deprived to trust whatever feelings I have right now. Hopefully I can sneak in an afternoon nap!
Another note: on Tuesday I made a pot roast in the crock pot. DH ate that the last 2 nights. I wonder if there's any relation between his "bad" nights and a heavier meal? I think he'll have something light tonight, and see if it makes a difference. If it seems to .. much as he loves beef .. I'm thinking it's going to have to be much more restricted, and only for lunch instead of at night.
Then again, maybe I'm just grasping at straws.
Wednesday, December 4, 2013
Day 191
Day 191
Tuesday December 3, 2013
Physical:
Tuesday was a very odd day. It started out more or less "normal" (for here). I don't know how long he would have slept, but the CNA got here a little earlier than usual. She went on and got him up, and he seemed to be awake .. though he went back to sleep in his chair even before she left. He spent a lot of the afternoon dozing in his chair, which is about "normal". In the evening he ate fairly well, and even managed to not sill much. I did, however, notice that he was all slumped over to the right. He's been leaning to the right for a long time; but more and more the last few days I've noticed a more pronounced whole body"curling" to the right. It was tricky to get a tray (improvised) on his lap, but I finally managed.. After (and while) eating, he watched his favorite show. When it was over, I asked if he was ready to go to bed. He said he was, but he was very mumbly, like he was already half asleep. When I got him into the wheelchair, he kept fretting about not being able to find the book he was reading. I made the mistake of trying to tell him there was no book, and he got angry. Anyway, finally got him to bed .. after a short commode break .. got dialysis all hooked up, got the extra blanket he wanted. He was acting "off", so I asked what was wrong . and he said he hadn't been ready to go to bed! Geez, talk about a mind reverting to a 2 year old!!
He did go right on to sleep. But he woke up around 3:30. When I had to go check on him, he said he was struggling because the shower curtain was too tight. Then he said he was too hot, so I took the extra blanket off; then he started tossing off the rest of the covers. He was absolutely determined he was in a shower. He pulled all his clothes off (pajamas and pull-us). I finally got him to settle down ... and in less time than it took me to get to the other side of the house, he was thrashing again. When I went back, he had the covers off again, insisting he had to get out of the tub. I sure was wishing some of the people who say I should just "play along" and "humor" him were here at 4 AM dealing with this!!!! I did finally persuade him to settle down, and within minutes he was back to sleep. I, of course, was not.
This morning he's alternating between sleeping and asking where are his clothes.
People:
The CNA came early, as I said. In the afternoon TGF stopped by to bring me the MO to pay the rent (which she helped fill out and took to mail).
Emotions:
I'm trying really hard to NOT give in to depression, but it's a super struggle. It's been pointed out to me that it might not be a good idea to persue any information about blind services right now .. because social services might decide I'm not able to continue to be caretaker, and forcefully take DH ... somewhere. And where would that be? And would he be allowed any dignity? And choices about anything? Would the fact that I have a health-care PoA matter? I don't know, but not willing to take that chance. But I'm equally frustrated at being told I will NOT be getting the "help" we were initially told we were entitled to have. Is it because (in theory) I have sons who are supposed to be pitching in(when told about the volunteers, we weren't asked if there was family to help me).
I probably shouldn't try to write on mornings when I haven't had enough sleep. It's much harder to just "suck it up" and do what I need to do.
Oh yeah, DSS called this morning. My poor car needs around $500 work .. fuel pump, alternator (why?? has had one within the last 3 years), something about temperature. So much for savings. I MUST have that car in good condition. Merry Christmas to me.
Tuesday December 3, 2013
Physical:
Tuesday was a very odd day. It started out more or less "normal" (for here). I don't know how long he would have slept, but the CNA got here a little earlier than usual. She went on and got him up, and he seemed to be awake .. though he went back to sleep in his chair even before she left. He spent a lot of the afternoon dozing in his chair, which is about "normal". In the evening he ate fairly well, and even managed to not sill much. I did, however, notice that he was all slumped over to the right. He's been leaning to the right for a long time; but more and more the last few days I've noticed a more pronounced whole body"curling" to the right. It was tricky to get a tray (improvised) on his lap, but I finally managed.. After (and while) eating, he watched his favorite show. When it was over, I asked if he was ready to go to bed. He said he was, but he was very mumbly, like he was already half asleep. When I got him into the wheelchair, he kept fretting about not being able to find the book he was reading. I made the mistake of trying to tell him there was no book, and he got angry. Anyway, finally got him to bed .. after a short commode break .. got dialysis all hooked up, got the extra blanket he wanted. He was acting "off", so I asked what was wrong . and he said he hadn't been ready to go to bed! Geez, talk about a mind reverting to a 2 year old!!
He did go right on to sleep. But he woke up around 3:30. When I had to go check on him, he said he was struggling because the shower curtain was too tight. Then he said he was too hot, so I took the extra blanket off; then he started tossing off the rest of the covers. He was absolutely determined he was in a shower. He pulled all his clothes off (pajamas and pull-us). I finally got him to settle down ... and in less time than it took me to get to the other side of the house, he was thrashing again. When I went back, he had the covers off again, insisting he had to get out of the tub. I sure was wishing some of the people who say I should just "play along" and "humor" him were here at 4 AM dealing with this!!!! I did finally persuade him to settle down, and within minutes he was back to sleep. I, of course, was not.
This morning he's alternating between sleeping and asking where are his clothes.
People:
The CNA came early, as I said. In the afternoon TGF stopped by to bring me the MO to pay the rent (which she helped fill out and took to mail).
Emotions:
I'm trying really hard to NOT give in to depression, but it's a super struggle. It's been pointed out to me that it might not be a good idea to persue any information about blind services right now .. because social services might decide I'm not able to continue to be caretaker, and forcefully take DH ... somewhere. And where would that be? And would he be allowed any dignity? And choices about anything? Would the fact that I have a health-care PoA matter? I don't know, but not willing to take that chance. But I'm equally frustrated at being told I will NOT be getting the "help" we were initially told we were entitled to have. Is it because (in theory) I have sons who are supposed to be pitching in(when told about the volunteers, we weren't asked if there was family to help me).
I probably shouldn't try to write on mornings when I haven't had enough sleep. It's much harder to just "suck it up" and do what I need to do.
Oh yeah, DSS called this morning. My poor car needs around $500 work .. fuel pump, alternator (why?? has had one within the last 3 years), something about temperature. So much for savings. I MUST have that car in good condition. Merry Christmas to me.
Tuesday, December 3, 2013
Day 189
Day 190
Monday, December 2, 2013
Random Note: I started this blog mainly to track DH's journey through the hospice experience, and my reactions. I know I occasionally get off track; but since I often feel overwhelmed and alone, I won't apologize. This is my "outlet" for whatever I'm feeling.
After being rejected by 2 hospice agencies, we were quite relieved to be accepted into this one. (Side Note: Hospice of Wake County ... a non-profit agency). One of the things we were told on the first day was that they had a huge number of volunteers who would be available for patients and/or the families/caretakers up to 4 hours a week, for anything .. including for the caretaker to just get a break. This aspect was one of the reasons the dialysis center originally started pushing the hospice idea .. thinking it would be the only way we might get a bit of "help". Well, we are getting help: the CNA comes 5 days a week. She brings any supplies he needs that aren't provided by dialysis. A nurse comes once a week, and she now gives him an epogen shot .. so we have been relieved of at least 3 trips a month to the dialysis center. DH no longer has to go to any other doctor's office (although we are now having an issue with his original ordering doctor). A social worker and a chaplain come by at odd intervals.
But. There is NO volunteer help to be had. I got a phone call yesterday afternoon from the coordinator. She asked if I still needed help with some things. Really?? I've gotten NO help, and she's asking if I still need it? And she pproceeded to tell me there is no volunteer service available for us. It sort of felt like a slap in the face. "do you need help? you're not getting any!" I am so discouraged.
Tomorrow (as far as I know) the nurse will come, and she will ask if I talked to the kids on Thursday. I'll have to say no, because the girls were both sick and DSS was in a snit and didn't even show u until the last minute (and then made a point of only hanging out with his friend). They do *know* what's going on. There has been little to no discussion about "what happens when". One batch of family is too far away (although my DIL is the most willing to try to help .. but she has had a lot of serious health issues herself). The other batch .. well, TGF doesn't have time (and frankly, although she does help me some, she isn't willing to make any concessions at all to make any more time for us); and DSS is simply in denial.
It will be interesting to see how he handles being the only one here with DH for a long stretch Saturday. That is, if the parade doesn't get cancelled, since the forecast is for cold and rainy. :(
Monday, December 2, 2013
Random Note: I started this blog mainly to track DH's journey through the hospice experience, and my reactions. I know I occasionally get off track; but since I often feel overwhelmed and alone, I won't apologize. This is my "outlet" for whatever I'm feeling.
After being rejected by 2 hospice agencies, we were quite relieved to be accepted into this one. (Side Note: Hospice of Wake County ... a non-profit agency). One of the things we were told on the first day was that they had a huge number of volunteers who would be available for patients and/or the families/caretakers up to 4 hours a week, for anything .. including for the caretaker to just get a break. This aspect was one of the reasons the dialysis center originally started pushing the hospice idea .. thinking it would be the only way we might get a bit of "help". Well, we are getting help: the CNA comes 5 days a week. She brings any supplies he needs that aren't provided by dialysis. A nurse comes once a week, and she now gives him an epogen shot .. so we have been relieved of at least 3 trips a month to the dialysis center. DH no longer has to go to any other doctor's office (although we are now having an issue with his original ordering doctor). A social worker and a chaplain come by at odd intervals.
But. There is NO volunteer help to be had. I got a phone call yesterday afternoon from the coordinator. She asked if I still needed help with some things. Really?? I've gotten NO help, and she's asking if I still need it? And she pproceeded to tell me there is no volunteer service available for us. It sort of felt like a slap in the face. "do you need help? you're not getting any!" I am so discouraged.
Tomorrow (as far as I know) the nurse will come, and she will ask if I talked to the kids on Thursday. I'll have to say no, because the girls were both sick and DSS was in a snit and didn't even show u until the last minute (and then made a point of only hanging out with his friend). They do *know* what's going on. There has been little to no discussion about "what happens when". One batch of family is too far away (although my DIL is the most willing to try to help .. but she has had a lot of serious health issues herself). The other batch .. well, TGF doesn't have time (and frankly, although she does help me some, she isn't willing to make any concessions at all to make any more time for us); and DSS is simply in denial.
It will be interesting to see how he handles being the only one here with DH for a long stretch Saturday. That is, if the parade doesn't get cancelled, since the forecast is for cold and rainy. :(
Monday, December 2, 2013
Day 189
Day 189
Sunday, December 1, 2013
Physical:
DH had a fairly good day. He slept late so wasn't miserably tired by bedtime. He did wait until after he was in bed, and I was just before turning the light out .. when he announced he had to go to the bathroom. Annoying, but nothing I could do but get him back up. And wait. (for nothing).
He requested that I get him a Coke because he had a "bad taste" in his mouth. But when he got the Colke, he didn't really like it. I wish I had thought to get him something like a ginger ale.
He ate "light", but did snack a bit. He was not particularly hungry
People:
DSS and TGF came as usual on Sunday, but the day was very haphazard.
Emotions:
I have come to realize that Sunday's are actually highly stressful. They didn't start out that way. I guess it's because of the failing vision .. there are more and more things I need help with. And there's just little to no help to be had.
They didn't get here until just after 3:00 (because DSS had insisted they had to rake leaves before coming over here). And of course, as usual, the boys were starving. So TGF and I got out what left overs there were and the boys "grazed". (I had made DH a sandwich earlier). TGF and I went to the pharmacy, Wal-Mart, and grocery store (last stop only because I'm a snob and insist on FL brand bottled water! LOL!). I actually didn't have a huge grocery list this week, but had to get enough for a week and a half this time. Bh the time we got home it was dark, of course. We got the groceries put up; and then she helped me go through about 3 weeks worth of mail.(Good thing I didn't just throw everything away .. there was an Ebates check!).
We had to get the boys to put the trash in the truck, hurry them up through showers, etc.
Once they headed home, I still had to get the silly cat to come in; and it was past the time I usually get dialysis set up. I did finally get DH settled .. and the kitchen was a mess. :( I still had to get what food was left put away, and try to get dishes soaking.
Monday mornings are depressing only because I wake up and see how much disaray I have to straighten out.
And there are Still so many things undone. I've never before not had Christmas decorations up by December .. and right now I don't even know if I'll have any. I still have to get fall put away. And I don't have room to put trees like I've done in the past few years. Right now I don't even have room for my one "big" tree. I was told that next Saturday they'll get an a/c and an aquarium out of the house .. but I've been hearing that, and it still hasn't happened. And that puts me another whole week into December. If I'm going to decorate, I like to have things out long enough to enjoy (last year TGF decorated on Christmas Eve, and finished on Christmas morning .. to me, why bother?) I know at this oint I'm sort of babbling. I'm not curl-up-in-my-chair-and-cry depressed. I'm more just that I have no enthusiasm, no motivation, none of the Christmas spirit I used to have.
Sunday, December 1, 2013
Physical:
DH had a fairly good day. He slept late so wasn't miserably tired by bedtime. He did wait until after he was in bed, and I was just before turning the light out .. when he announced he had to go to the bathroom.
He requested that I get him a Coke because he had a "bad taste" in his mouth. But when he got the Colke, he didn't really like it. I wish I had thought to get him something like a ginger ale.
He ate "light", but did snack a bit. He was not particularly hungry
People:
DSS and TGF came as usual on Sunday, but the day was very haphazard.
Emotions:
I have come to realize that Sunday's are actually highly stressful. They didn't start out that way. I guess it's because of the failing vision .. there are more and more things I need help with. And there's just little to no help to be had.
They didn't get here until just after 3:00 (because DSS had insisted they had to rake leaves before coming over here). And of course, as usual, the boys were starving. So TGF and I got out what left overs there were and the boys "grazed". (I had made DH a sandwich earlier). TGF and I went to the pharmacy, Wal-Mart, and grocery store (last stop only because I'm a snob and insist on FL brand bottled water! LOL!). I actually didn't have a huge grocery list this week, but had to get enough for a week and a half this time. Bh the time we got home it was dark, of course. We got the groceries put up; and then she helped me go through about 3 weeks worth of mail.(Good thing I didn't just throw everything away .. there was an Ebates check!).
We had to get the boys to put the trash in the truck, hurry them up through showers, etc.
Once they headed home, I still had to get the silly cat to come in; and it was past the time I usually get dialysis set up. I did finally get DH settled .. and the kitchen was a mess. :( I still had to get what food was left put away, and try to get dishes soaking.
Monday mornings are depressing only because I wake up and see how much disaray I have to straighten out.
And there are Still so many things undone. I've never before not had Christmas decorations up by December .. and right now I don't even know if I'll have any. I still have to get fall put away. And I don't have room to put trees like I've done in the past few years. Right now I don't even have room for my one "big" tree. I was told that next Saturday they'll get an a/c and an aquarium out of the house .. but I've been hearing that, and it still hasn't happened. And that puts me another whole week into December. If I'm going to decorate, I like to have things out long enough to enjoy (last year TGF decorated on Christmas Eve, and finished on Christmas morning .. to me, why bother?) I know at this oint I'm sort of babbling. I'm not curl-up-in-my-chair-and-cry depressed. I'm more just that I have no enthusiasm, no motivation, none of the Christmas spirit I used to have.
Sunday, December 1, 2013
Day 188
Day 188
(Friday and) Saturday Novembber 30, 2013
Physical:
The last few days have been fairly "calm" .. no extreme episodes of any sort. DH, as always, is convinced he's not "home"; and that he can walk anywhere he wants to. But he's not been overly agressive with me about challenging this. He's eaten fairly well, and is actually sleeping fairly well too. His sleep is interrupted a lot with coughing, but it doesn't wake him to the point of trying to get up. He still drops off to sleep often during the day.
I also want to make a bit of a note about some observations. It's been suggested that some of DH's confusion and/or disorientation come from not being able to tell the difference between dreams and reality. This would certainly explain some of the odd things he says (as opposed, as other say, to just living in a time warp) But there are also times when he is awake and reasonably alert, and says something "off". I can explain to him, and then he will say something else that shows me whatever I just said did not register at all. I'm sure it must be scary for him to not know where (or when) he is; it's certainly weighs heavy on my heart that there's no way to make it easier for him. I'm told to just "go along" with him .. but sometimes that's just not possible.
People:
Friday was a quiet day, only the CNA coming for DH's bath. She went on and got him dressed and up this time (which is a bonus for me ... very small matter, but I welcome any "break" I get!).
On Saturday we had company, my brother and sister-in-law and our niece. They brought pizza, and we had a wonderful visit. I wish it were possible to see more family (his and mine), but everyone has busy lives and most live too far away.
Emotions:
All over the place! I enjoyed visiting with family, both Thursday and Saturday. I have a treasure of a daughter-in-law who, despite multiple health issues of her own, has shown a lot of care and concern for me. But there are long stretches of time where we have no contact with anyone (not even from DSS or TGF, though we see them every weekend); and when I hear from someone, they'll ask how DH is doing. No one ever asks how I am doing or if I need anything. Well, his sister did tell me that if I needed anything to let her know .. and I asked if she would come over one afternoon and help me sort books. She said she would; but that was 2 weeks ago, and she never came. She told me on the phone she just hadn't had a chance to get over here (she lives 3 miles down the road and is retired). But she did have time to go to DSS's house in town to look for pecans. Oh well, this is how it goes. It feels like people offer to do something because they think they're "supposed" to do that; but they want me to say "thank you, I'll call" and then forget about it.
I'm also feeling sad because it's now December 1st and I have no Christmas decorations done. I used to have a friend who helped me, and did almost all of the outside stuff as well as helping inside. But she doesn't have time to bother with me any more. And really, between taking care of DH, keeping up with ordinary household stuff, and everything being a struggle because of my vision .. I just don't know if I even feel like bothering any more. I used to practically beg people to come over and enjoy the decorations; but everyone is mostly just too busy. If I can't see things (not stumbling in the dark blind yet, but can't see any detail at all), and DH has never cared one way or the other, and very few people want to bother to come out here .. then why go to all that effort?
OK, today is the day DSS and crew come, so I need to get busy and stop feeling so sad. I'm hoping I can persuade TGF to spend a day here so I can get a "day off". I've had 3 half days "off" (NOT going to the grocery store!) in the last 9 months, and I'm really stressed and tired!!
(Friday and) Saturday Novembber 30, 2013
Physical:
The last few days have been fairly "calm" .. no extreme episodes of any sort. DH, as always, is convinced he's not "home"; and that he can walk anywhere he wants to. But he's not been overly agressive with me about challenging this. He's eaten fairly well, and is actually sleeping fairly well too. His sleep is interrupted a lot with coughing, but it doesn't wake him to the point of trying to get up. He still drops off to sleep often during the day.
I also want to make a bit of a note about some observations. It's been suggested that some of DH's confusion and/or disorientation come from not being able to tell the difference between dreams and reality. This would certainly explain some of the odd things he says (as opposed, as other say, to just living in a time warp) But there are also times when he is awake and reasonably alert, and says something "off". I can explain to him, and then he will say something else that shows me whatever I just said did not register at all. I'm sure it must be scary for him to not know where (or when) he is; it's certainly weighs heavy on my heart that there's no way to make it easier for him. I'm told to just "go along" with him .. but sometimes that's just not possible.
People:
Friday was a quiet day, only the CNA coming for DH's bath. She went on and got him dressed and up this time (which is a bonus for me ... very small matter, but I welcome any "break" I get!).
On Saturday we had company, my brother and sister-in-law and our niece. They brought pizza, and we had a wonderful visit. I wish it were possible to see more family (his and mine), but everyone has busy lives and most live too far away.
Emotions:
All over the place! I enjoyed visiting with family, both Thursday and Saturday. I have a treasure of a daughter-in-law who, despite multiple health issues of her own, has shown a lot of care and concern for me. But there are long stretches of time where we have no contact with anyone (not even from DSS or TGF, though we see them every weekend); and when I hear from someone, they'll ask how DH is doing. No one ever asks how I am doing or if I need anything. Well, his sister did tell me that if I needed anything to let her know .. and I asked if she would come over one afternoon and help me sort books. She said she would; but that was 2 weeks ago, and she never came. She told me on the phone she just hadn't had a chance to get over here (she lives 3 miles down the road and is retired). But she did have time to go to DSS's house in town to look for pecans. Oh well, this is how it goes. It feels like people offer to do something because they think they're "supposed" to do that; but they want me to say "thank you, I'll call" and then forget about it.
I'm also feeling sad because it's now December 1st and I have no Christmas decorations done. I used to have a friend who helped me, and did almost all of the outside stuff as well as helping inside. But she doesn't have time to bother with me any more. And really, between taking care of DH, keeping up with ordinary household stuff, and everything being a struggle because of my vision .. I just don't know if I even feel like bothering any more. I used to practically beg people to come over and enjoy the decorations; but everyone is mostly just too busy. If I can't see things (not stumbling in the dark blind yet, but can't see any detail at all), and DH has never cared one way or the other, and very few people want to bother to come out here .. then why go to all that effort?
OK, today is the day DSS and crew come, so I need to get busy and stop feeling so sad. I'm hoping I can persuade TGF to spend a day here so I can get a "day off". I've had 3 half days "off" (NOT going to the grocery store!) in the last 9 months, and I'm really stressed and tired!!
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