Hi all,

First I want to say that I'm sorry we're all here - but since we're in this situation with a loved one with LBD, it's certainly a blessing to have a forum.

I built a duplex in 2000 so that my recently single mom could be closer to me. She was 70 at the time and robustly healthy. She moved into the apartment in my home and enjoyed gardening, many social activities, and the cats we adopted. At age 76 she was out in the side garden one afternoon and found that she could not get up from the ground. The neighbor helped her back to her sun porch and I was called home. She said simply 'my legs wouldn't work'.

We went to several neurologists - her muscles and nerves were fine. It was an episode that seemed to resolve, mostly. Initially. Stairs became increasingly more difficult for her to manage, but she would try, hanging on to the rail with both hands, moving slowly. Her once quick walk became a shuffle. She began forgetting things and we hired a personal financial assistant to help with bill paying. She had an accountant she still used in her home state for taxes, and the fact that she stopped paying taxes in 2005 sort of fell through the cracks. I'm working on 2006 and 2007 still.

We bought her a lift chair, a shower chair and a walker, and installed grab bars. Mom became incontinent and began to need help with her medications. We hired in-home care givers, and I watched out for her when they were not with her. As her ability to do normal activities diminished, she felt more and more isolated at home. She told me she wanted to move to assisted living because there were more opportunities there to interact with others. I undertsood and agreed with her decision. We spent last Christmas at home, then in January I moved her to assisted living. She selected the residence herself - the one closest to our home.

We weren't absolutely sure it was LBD. We admitted her to a hospital to drain some cerebrospinal fluid to check to see if maybe normal pressure hyrdocephalus was responsible for her symptoms. Her condition did not improve after the removal of the fluid, making this diagnosis unlikely. So it's LBD by process of elimination. She had a meltdown there at her first assisted living residence, and was miserable. After several months we moved her to an assisted living home a little farther away, but nicer and with more amenities. She had met a man at the first assisted living place (!) and he could not move to her residence do to his unmanageable diabetes, so they both moved to a modern and upscale luxury assisted living residence. His health was poor, and she was declining mentally. The relationship was doomed. Mom was very depressed by the breakup but never seemed to bounce back in terms of her mood, agitation, and ability to deal with frustration. She had several public outbursts, and the manager of the new facility asked that she be admitted to the hospital to work on stabilizing her meds.

Turns out she was on too much sinemet (sp?) and that in high doses this drug can cause delusions and agitation. On a reduced dose she is friendly and docile. However, caring for my mother is still a great deal of work and I think the manager at facility 3 can pick and choose and had no intention of letting her back through the doors. The manager suggested a rehab hospital owned by the same company for a month... then moving back, perhaps, if she improved. The rehab hospital is unacceptable, and she has no real medical need now that her meds are stabilized...so she's moving back to facility 2. What a mess. This will be 4 moves in one year.

I wouldn't have minded this roller coaster year and all of the inconvenience so much if any of it had helped her. She's declining rapidly before my eyes. In August she could dress herself and use the toilet herself. Both slowly... and with difficulty - but she could do it. She enjoyed conversation and social interaction. She seems to be failing physically and slipping away mentally. On a good day she can take a few steps if you stand her on her feet and hold her hands. Now it's getting difficult to move her on and off the toilet, and in and out of bed. She's essentially wheelchair bound. I had tried getting her a motorized chair last summer, but she was dangerous with it, and the salesman refused to leave it with her. Devastating.

I talked to her tonight about moving back to residence 2. She didn't seem upset. They have an adjacent memory care facility there that she can transition to without moving. We don't discuss her dementia. She's frustrated being trapped in a body that doesn't work properly. She often forgets that she can't get up, and tries... and is surprised. She does better with a great deal of distraction and attention. It takes a village. She's effectively been kicked out of a really posh residence where she has a 2 room apartment and they serve every meal on tablecloths. So ambiance is definitely going to take a hit. Now she needs the best care, so I think this next move is the right one.

2009 was rough, and I know that things can and will get worse.

I'm guessing that the key is to try to provide the best possible quality of life for the LBD patient while staying physically and mentally healthy as possible as a caregiver.

I wish I knew what to expect so that I could prepare better.

Scientist,

Welcome to this Forum, though sorry you have need to be here.

Was a PD diagnosis made at some point in the story and that's why she was put on Sinemet? Has someone made the LBD diagnosis on the basis of hallucinations that are not medication-related and on the basis of progressive dementia?

I think many of us don't discuss the "D" word with our loved ones. I did discuss it with my father and in front of my father, and now regret that.

Sounds like the memory care facility is the right place. Hope that works out!

Good luck,
Robin

Hi Robin,

No, PD was never considered. The neurologist told me that PD and LBD have a similar root cause and that the sinemet helps movement disorders in both diseases. Mom has that 'feet-stuck-to-the-floor' behavior. The LBD diagnosis was made on the basis of cognitive testing, symptoms, and the elimination of NPH as the cause by the cerebrospinal fluid drainage.

Her doc at the teaching hospital told me that she thinks that sinemet helps LBD patients, but only in smaller doses - that higher doses can cause/increase psychosis particularly in LBD patients. In the opinion of the new docs she was on too much sinemet and prozac was the wrong antidepressant. She's currently on aricept, namenda, celexa, abilify, detrol, and lisinopril. She takes CoQ10, fish oil, calcium and a baby aspirin as well.

This diseases is so bad and so variable it's really hard to tell what the meds are doing.

Probably fewer than one-third of the LBDers in our local support group (SF Bay Area) take Sinemet. You don't see it that much in the LBD community. That's why I'm surprised it was the first drug given.

You know the Detrol is anticholinergic, and typically should be avoided in someone with dementia??

Perhaps you can offer the name of the neurologist or geriatric psychiatrist involved (new or old), if you recommend him/her/them.

Scientist,
I really think that if you can keep your mother at the residence she is at now so there is not another major move for her, that would be good. In September 2005 we moved and I had no idea that it would cause my husband to become so paranoid!! I think we took him out of his comfort zone.
Lorraine

Your Mother sounds much like mine with the decline - we just go day by day. She does know what she has- sometimes she threatens what she'd like to do with Lewy if she ever gets her hands on him. I think she has been pleased to know a disease is causing the problems- more and more she is losing that awareness and gets very agitated and frustrated with everything
Sharon

Yikes, I could absolutely strangle my mother's neurologist - for someone inolved in LBD clinical research he doesn't seem to have done his homework... to much sinemet, and then giving her an anticholinergic. I'm stopping the detrol immediately. He has also been so unhelpful and therefore he is so not recommended.

Are all incontinence drugs anticholinergics?

The regular psychiatrist is Dr. Jennie Byrne with Doctor's Making Housecalls, who has been responsive and extremely good, and Mom also saw a femal psychiatrist named Dr. He at UNC (she told me 'He' was a 'She' and I thought she was having an incoherent spell) who was also excellent.

There's no way Mom can stay at her current residence... she's actually moving back to a place where she has lived before and has social contacts. She also feels that the place she's returning to is 'more human'. Her own words.

Sharon, I'm ready to pummel Lewy myself.

My mother has moved 4 times in a year and met so many people - she just told me as I was covering her up for a nap ... that the past year...was "wonderful" likely because she is a social person and assisted living surrounds her with people in her age group. It was absolute hell for me, but I was so grateful to hear her say that.

It took me over 2 hours to do her shower, hair, makeup, oral care and clothes today. I watch the 'pro' caregivers and admire their skills.

It takes me about that long to get Mother ready also- she gets distracted by everything so there is no logical progression to anything these days. I'm glad your Mother enjoys the other people. That helps
Sharon

You asked: "Are all incontinence drugs anticholinergics?"

Off the top of my head, the only one I can think of that is not is anticholinergic is desmopressin (DDAVP).

EricSEA, a member here ages ago, did a nice little list here:
http://community.lbda.org/forum/viewtopic.php?t=382
I think some of EricSEA's non-anticholinergic meds are for men only but am not sure.

When EricSEA was around, he and I searched the web for days trying to find a list of all anticholinergics and even better would be a list of varying degrees. We found nothing. I think EricSEA even asked a DPharm about this. I had heard from my dad's neurologist that Ditropan was to a minor degree anticholinergic but I could never find anything to back this up. A local support group member told me that her husband's neurologist had said that Vesicare was to a minor degree anticholinergic. Again, no substantiation could be found. So, I conclude that it's better to avoid these meds in those with dementia.

I sent a note to Mom's doc and informed her new residence that she should not get the Detrol.

I asked her about the other drug you mentioned. Mom is getting frustrated with everything, so taking pills is hard now. The most medically important ones are given first.