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 Made big--and sad--decision today! 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Made big--and sad--decision today!
I'm with you, Jeanne! No, he didn't like things like that before, either. But he did do some painting before and he just won't do it now. I think it's because he knows he lacks the control of the brush that he once had and he never did care for abstract art. While I was home I tried everything. He did do crossword puzzles for a while but can't do them any more. Hasn't been able to piece together the simplest child's jigsaw puzzle in at least over a year nor put Lincoln Logs together. Hasn't a clue what to do with them, even after it's demonstrated. No executive function at all.

As I have said before, he was a brilliant man with a PhD in biochemistry and a long research career. In a way, I'm glad he's not fully aware of just how debilitated he has become. He seems aware of his physical limitations but not so much his cognitive ones.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Jan 13, 2011 10:20 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Made big--and sad--decision today!
Dale can't be content with anything for more than 10-15 minutes. He is always thinking that there is some meeting he is missing. He figits because has to gather the documents... and yet, he still has too much awareness for me to pretend that just any papers are the right ones.

He was always interested in sports but they don't interest him now either. He keeps trying to get out of the chair every few minutes... but he can't usually stand on his own - which really frustrates him. The clock moves too slowly for him. He wants bedtime right after dinner except that he isn't tired enough to go to sleep. The only relief for him is sleep.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Jan 13, 2011 10:42 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Made big--and sad--decision today!
Quote:
He seems aware of his physical limitations but not so much his cognitive ones.

That is probably a mercy, don't you think?

Do you have photo albums or scrapbooks? Would he enjoy those? That was one thing Coy could get interested in, even at his worst. It might only be for 10 minutes at a time back then. Now he enjoys paging through an entire book when he is in the mood.

It is so sad to see these once vibrant people in this shape. And scary to think that it could happen to us, too.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Jan 13, 2011 10:50 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Made big--and sad--decision today!
We used to look at albums but he is not interested in them any more.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Jan 13, 2011 11:36 pm
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Joined: Sat Aug 21, 2010 12:30 am
Posts: 15
Post Re: Made big--and sad--decision today!
I'm so sorry to hear that you are sad and upset, but from reading your posts, you are definitely not a failure--more like an angel. You have also been kind enough to post encouragement to so many caregivers, including me. Take care of yourself, now....


Fri Jan 14, 2011 1:46 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Made big--and sad--decision today!
I fed him his lunch, he wanted into the bed but we put him into the recliner and he fell asleep so I left. I'll return later. He's bent over so far forward now it's really hard to feed him, having to push the spoon or fork upward into his mouth. The soup was a lot of fun but he did eat half of it, a few bites of meatloaf, some potatoes and half a glass of milk. And half a brownie and some coffee. I tried tying his 'shirt saver' [apron] to the back of the wheelchair to keep him more upright but his head is so slumped forward his chin is on his chest.

Good news is that his UTI is resolved [he'll be on the antibiotic for a while] but he is not snapping back the way I'd hoped he might. Very disappointing.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jan 15, 2011 3:36 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Made big--and sad--decision today!
Quote:
he is not snapping back the way I'd hoped he might. Very disappointing.
Disappointing indeed. I'm so sorry.

Would a neck brace hold his head up better during feedings?

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Jan 15, 2011 3:49 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Made big--and sad--decision today!
It might, Jeanne. Good idea. I'll talk to OT about it, although I have a feeling Derek would not like it. Still would be worth a try. I don't think he even realizes how bent over he is. Yesterday the PT kept trying to get him to 'sit tall' and 'stand tall' but without much success. He's straighten up a little bit, then slump back down again.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jan 15, 2011 4:28 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Made big--and sad--decision today!
I'm so sorry Pat. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Jan 15, 2011 5:00 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Made big--and sad--decision today!
I was there three times today and every time he was angry with me and with the caregivers and of course he gets furious when I leave. But this afternoon when I left at 4:00 I couldn't wait to get out of there! I must confess that, unhappy as I am with this arrangement, sometimes it's nice to be able to just walk out!

I'm thinking that the increased Sinemet is responsible so now I'll have to ask the doctor [the one I had to complain to about slowness of response to the UTI] to put the dosage back to three times a day instead of four I guess I was hoping his mobility would improve and it really hasn't. The CNA and I tried to get him on the toilet and we were both sweating. Should have used the sit-to-stand but I already had taken him in his w/c into the bathroom because he couldn't wait for the call light to be answered. I'll never learn. :-(

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jan 15, 2011 8:30 pm
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Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Post Re: Made big--and sad--decision today!
Oh, Pat.... I am so sorry you have had to make that decision. I am worrying that I might need to start thinking about it, too. I just don't know. When do you know it is time? I have a caregiver 4 days a week and now my husband is getting tired of the caregiver. Husband is lucid then delusional then lucid again. It is just so very hard!!!! He is angry. I am sure he is so frustrated with his inability to communicate. He is suspicious of me. Pat, my heart is with you. That is so tough. Cheryl (Cheryl 64, Ron, 60)


Tue Jan 18, 2011 2:45 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Made big--and sad--decision today!
I didn't really make the decision--it made itself. I hurt my back transferring him and I knew it wouldn't heal without a break in the lifting/transferring so I put him in the SNF for a week respite care. In the meantime, after much difficulty and another week of respite, I managed to order a sit-to-stand lift so I could lift and transfer him at home. I observed that it was sometimes a two-person operation at the SNF ['two-person transfer' is ordered on his care plan] and realized that, realistically, I was not going to be able to do this. The aides have told me that, at night, they have to use a Hoyer lift to get him into bed because he's totally immobile and unable to stand. In the past three or four months his condition has declined steeply. I'm able to see the extent of that now. I'm spending five or six hours in two or three visits a day right now but, since I'm going to need to get a job, I'm going to have to cut it down a bit. I was feeding him two main meals but now just lunch ['brunch' at 10-10:30]. The other main meal is at 4:30 and if I'm not there they take him into the dining room and help him eat so he's not just left on his own. He also usually takes his snacks [3] in a common area. I won't know if he's lost further weight until tomorrow. So far, he's lost 11 pounds. :cry:

I should add, as I posted last week, that I have found an excellent adult family home that I believe would be much better and, if an opening should come up, I plan to move him there. It's only a six-bed facility but has two aides each shift so he will get more individualized attention. Unfortunately, since there are only six beds, it's not too likely an opening will come up soon and there is another party on the waiting list ahead of us. :cry:

Hurt my back again yesterday Helping the aide transfer him [we were too impatient to wait for the lift] Hope I learned my lesson.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Jan 18, 2011 4:05 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Made big--and sad--decision today!
Cheryl -I'll chime in too and say "you'll know when it's time." As our LOs needs change due to their limited mobility, ADL needs, and the behaviors that happen because of the dementia, it will get clearer and clearer. Some who are doing the CGing at home have been able to have their LO there the whole time. But, when they can no longer stand, roll over in bed, sit up, walk, etc. the transferring issue gets HUGE. You can't afford to hurt yourself, like Pat so well knows. Then who takes care of BOTH of you? All the best in these trying times, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Jan 18, 2011 4:19 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Made big--and sad--decision today!
Pat,
The back is an area that once you hurt it, it doesn't take much to hurt yourself again, you have got to let the aides do the lifting in the future, how will you ever work if you are having such back issues? Please take care of yourself! Thats why Derek is there, there are so many other things you can help with besides the lifting part !!

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Irene Selak


Wed Jan 19, 2011 8:58 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Made big--and sad--decision today!
Oh, I know, Irene. He just gets so impatient and miserable waiting for help. I've made up my mind I'm NOT going to do it any more. Since I had successfully transferred him earlier that morning I though we could do it. The difference was like night and day--I should realize that by now. He can bear weight one minute and not the next. That's why the PT warned the staff not to assume he was a one-person transfer just because it was sometimes possible. As I have said before, I tend to be a slow learner. I have transferred patients who were essentially 'dead weight' using a gait belt, just as I did with Derek, but their knees and hips weren't locked in a bent position. Makes a huge difference.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Jan 19, 2011 11:22 am
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