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 Famous Last Words 
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Famous Last Words
My mother-in-law is scheduled to start PT this week. I will watch for signs that it may be too much for her. I think that sometimes LBD patients spend all of their mental energy trying to follow the therapist's directions that it wears them down. A little story: we went to the doc for a check up this past week. As we were waiting, my MIL dozed slumped in the chair (and hadn't spoken much that day). She had said earlier that she was dragging. As soon as she heard the doc knock she sat up straight and put on a bright smile. She answered the initial questions as clear as day. Of course, with her delusions she told the doc that she was great and had lots of energy, slept well, yada, yada (you know the drill). I let her answer, then the doc would look at me and I would tell him the real deal. MIL looked so confused, poor thing. She also told the therapist at her initial consult that she had been in a couple of different nursing homes. News to us! Because she she doesn't talk we don't know how many other delusions are lurking in her brain. Yeesh.

Donna (age 56) caregiver for mother-in-law Margaret (age 88).

Sun Feb 13, 2011 11:17 am

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Famous Last Words
SNF visits can be so tough, can't they? Thank God for good nurses and aides. They spend a lot of their time offering sympathy to residents and reminding them that this is their home.

My sister and I take Mom out once a month or so for a mani-pedi or a haircut. I have to avoid driving anywhere near the house Mom and I shared or there is this huge air of disappointment when we don't stop there.

To add to it, I want to take Mom home. I know I can't. Sometimes I think I'm the one that is having a tough time with this - not so much Mom. Though I do remember how difficult it was to accept that the SNF had to put an alarm on her so that she couldn't "walk" out the front door.

I'm almost certain that Mom doesn't know who I am about half the time. But I still have trouble leaving her. I seem to keep waiting for some sign from her that she is alright where she is. Like that's ever going to come.

I wish, back when I told Mom I understood her desire to die at home, I'd realized what that entailed for both her and me. I know now that I can't handle that. But I feel guilty for letting her believe it was possible.

The only reason Mom doesn't ask me to take her home is because she can't speak the request. Knowing what she wants makes it all so hard. I go to the car and sometimes just sit and try to remind myself of the realities of the situation. It helps, a little.

So I have no words of advice to make it easier. I'm sending you a virtual hug, instead.


Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]

Mon Feb 14, 2011 2:59 pm

Joined: Fri Jan 23, 2009 4:11 pm
Posts: 31
Location: N Calif
Post Re: Famous Last Words
Leaving the ALF is always difficult for me too! GW has been there for 6 months now-- I still go visit for a couple hours almost every day. He almost always recognizes me when I arrive- and will usually give me a big smile, but after I've been there a while it seems he just thinks I'm another of the carehelpers. Sometimes he will hold on to my arm with both hands so tight!!! When I leave I tell him that I have a meeting or choir practice etc, and will be back soon. I never say good bye--just see you later. This works for him as he has had no sense of time for several years. When he was still at home-he also said he wanted to go home. I have also told him that we are at the "hotel" and "since this one is so nice I think we should stay another day or two"


Tue Feb 22, 2011 4:32 pm

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Famous Last Words

My mother is always glad to see us but after 30-45 minutes, she'll say, "Well I suppose you ought to be getting home now." I think focusing for that long makes her tired because her attention span just is not good anymore. Maybe it's similar for GW? Anyway, it does make it a little easier to leave.


Tue Feb 22, 2011 5:02 pm

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Famous Last Words
mockturtle wrote:
It's so nice to see him walking, even with two people holding him up.
I decided the 'walking' was putting too much pressure on Dale. He was always too 'wired' after the Physical Therapist had visited. He was confused by the instructions and told me that he didn't want to do it anymore.

However, he still thinks he did walk somewhere. His delusions are usually about having gone somewhere and returned here.

Is Derek still walking?

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

Thu Feb 24, 2011 9:16 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Famous Last Words
Yes, six times a week with his walker, the PT holding his gait belt on one side, aide on the other, me behind with the wheelchair. Once he gets the feet moving he does pretty well with that walker. There are some days he doesn't feel like it so we skip it but I think being able to walk makes him feel less discouraged.

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 Feb 24, 2011 11:10 am
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