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 Will there be any more "good" days? 
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Joined: Thu Dec 08, 2011 5:24 pm
Posts: 12
Post Will there be any more "good" days?
My father is now in a memory care unit at an alzheimers home. He has been there since12/23, he was in the psych ward at the hospital for three weeks prior. I went home to visit him while in the hospital and for the most part he was out of it, hallucinating, paranoid, and dozing off most of the time. When he moved he actually had 2good days where he was making sense and seemed to kind of know what was going on. The past couple weeks have not been good. With this disease, will he get to a point where he has no moments of lucidity or will there at times be times when he knows at least who we are? I am trying to prepare myself, when he was in the hospital hospice did evaluate him and upon discharge he had declined so rapidly they were saying we had 6 months or less. He has lost a lot of weight and is incontinent now. My parents 50th anniversary is next month, which he did remember a couple of weeks ago, we as a family are trying to decide if we do anything to celebrate it and if we could take him out of the home on an outing or would that be too much? Also, trying to decide if I should go there for it since I live many many miles away.

Tue Jan 17, 2012 11:33 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Will there be any more "good" days?
Terry - so sorry for this heartbreaking disease entering your lives. The meds he is on, or not, can make a big difference for some people with regard to all the symptoms you are describing about your dad. If you haven't already done so, I'd read about "typical" meds prescribed LBD patients, their benefits and unintended bad side effects they can have. Then I'd check with his dr. about what he has been prescribed, and see if changing, eliminating or starting new meds (1 at a time and slowly) can help some of his symptoms.
Since you haven't posted a lot about him, it's hard to know what to tell you about taking him out for a celebration. There was a point at which I knew that taking my dad out was NOT good for him and that was (a) he could not help me help him get out of the car and into a wheelchair and back again (b) when I took him out for a ride he wanted to go "back to that place where I live now" 5 min. after he was in the car (c) he seemed anxious and confused being out of his confined space of the ALF.
About a month or two after that, the ALF people decided he couldn't even be wheeled to the handicapped bus in his wheelchair for the same reasons as above, and he was getting worse.
My guess is, if hospice thinks he has less than 6 mo. and with the symptoms you just listed, it might be best to have a smaller, quieter celebration where he is. Lots of people, noise and activity can make them upset, frustrated and exhausted, and they spend a lot of energy trying to "hold it together" in front of people. A week or so before my dad died I got a bunch of the metallic helium balloons and put them where he could see them from his bed. He seemed to really like to watch them - it seemed soothing and calming for him. I would not recommend a whole bunch of people coming in all at the same time. The closer they are to the end, the more they start withdrawing and not wanting or needing the outward focus of socializing. Hospice can provide you with one of their very informative pamphlets that describes the final stages - months, weeks, and days. I found it really helpful.
Good luck, 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 17, 2012 11:46 am

Joined: Thu Dec 08, 2011 5:24 pm
Posts: 12
Post Re: Will there be any more "good" days?
The meds of course have been an ongoing issue. Most of the time he refuses to take his meds, and now he is on a very small dose of carbidopa levodopa and something for anxiety. What is really strange is that when he was in the hospital he was having really bad tremors and on all sorts of meds but now he takes very little if anything at all and all his tremors are pretty much gone. Meds have only seemed to make him worse. My mom said last time she visited him he spent some time with her but then walked off and sat down with another resident there, ignoring my mother. I sent him pictures of his grand kids framed for his room and they seemed to make him sad, which breaks my heart. He talks about my son (6) all the time, doesn't remember my daughter (3). At one point I was thinking of taking my son, Mason, home with me to see my dad but now I think it might be too much?

Tue Jan 17, 2012 12:15 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Will there be any more "good" days?
Every case is different but I can tell you that our experience has been that this disease fluctuates wildly and there can be some better days ahead for your father. My husband can go from practically comatose to conversant [though delusional] in a day or two. We can only take each day as it comes. I know that is an oft-used adage but in Lewy it's really the only course open to us. God bless you and your family! Hugs to you, too.

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 17, 2012 1:20 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Will there be any more "good" days?
It could be your father has Alzheimer's Disease or he's had a stroke affecting the hippocampus such that memories are gone. To help you prepare for your father forgetting who you are, you might read "Deeper into the Soul: Beyond Dementia and Alzheimer's Toward Forgetfulness Care," by Nader Robert Shabahangi, PhD and Bogna Szymkiewicz, PhD. The authors also have a website where you can read an excerpt and maybe get an idea of what the book is all about --
Good luck,

Tue Jan 17, 2012 2:35 pm

Joined: Tue Aug 30, 2011 1:36 pm
Posts: 48
Post Re: Will there be any more "good" days?
So sorry for all you're facing. I just wanted to mention that your dad's cognition may continue to come and go. He may indeed have good days, or at least moments within the day. My mom's cognition varies a lot, all within the same day or same 10 minutes. She can usually call me by name (though not always), but sometimes I'm a sister, an aunt, a great-aunt (yikes!), but usually her daughter. I think your dad would like to see your children. There are books to read to children about what's happening to their grandparent or great-grandparent. I wouldn't force them, of course. But being with her great grandchildren are the happiest moments my mom has now, I believe. It could help build compassion in your children to visit your dad (again, not if they don't want to, though. At first, the oldest great grandchild was very leery of being around Mom while the litter ones treated her as they always had, and finally he came around. No one forced him to interact with her, though. He took his time. I think that's important.). That's my 2 cents.

How does your mom feel about the anniversary? My first thought would be to keep things really low key next month, and celebrate later if your dad gets better.....and he may. Our very worst days were in the first weeks home from the hospital when all this started. At that time 2 years ago, I really didn't think I would still have my mom through much of 2010, much less be starting off 2012 with her. Your dad may indeed be in a final phase, but he may not. Has he typically enjoyed big gatherings? (my dad does not; my mom always has) If he gets better and has always liked a party, I'd say throw one if he gets better. Being in a big crowd wipes Mom out for 2 or 3 days, but she seems to enjoy it while it's happening and relives the joy as we look at photos.

Last, anti-anxiety drugs are not good for my mom at all. They would make her worse and more out of it when they gave them at the hospital. May or may not be good for your dad. Each person is different.

Praying for all of you as you adjust to your new reality.

Donna G, 52, helped Dad take care of Mom, who died at home surrounded by family in June 2012.

Wed Jan 18, 2012 9:59 am
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