Hi everyone,

I have read a lot of information on this website and am so glad that it exists and grateful to the creators and contributors.

In some ways my mom's story fits and in some ways it doesn't but I thought I would introduce it and hopefully get some information from those of you who are going through this or have been going through it for a while.

In March of 2011 my mom (70) went on a walk and said that she was starting to feel as if her body was getting ahead of her feet, as she tried to correct herself but fell forward, tearing both rotator cuffs and scraping her face up pretty badly. (She was thinking that she was just having some inner ear problems.) She was referred to a neurologist who diagnosed Parkinsons and put her on Sinemet and Mirapex. She lives about 45 minutes away but would continue to drive to our house to see my sons little league games, (she claims with no difficulty). At this point (April 2011) her balance was poor and she was using a cane. Other parents at the baseball games, having remembered her being there from pervious years, thought she had had a stroke as the difference in her balance and mobility as well as social interaction from last year was so apparent. Seemed way too fast to be parkinsons. Short term memory had worsened and she couldn't keep any details straight as far as dates and would have to ask us repeatedly for details. Her memory had always been pretty poor but when I questioned her about it she just kept saying she must not have been paying attention when I was answering her.

After several repeated phone calls and some missed appointments I came out to get her so she could stay with us through her upcoming surgery that Monday and through rehab (about 3 months). After RC surgery she had a terrible time coming out of anesthesia. Very difficult to wake her up and VERY disorriented. She was a nurse in day surgery for 35 years so it's not that environment was really novel for her but her reaction to Anesthesia was not normal for her.

In the subsequent days at my house she would constantly pick at and re-arrange her arm brace, get up in the middle of the night to shower for a 10 am appointment the next day that she thought was at my house but was to be at hers. Lots of stuff happening like that. We thought maybe some of her behavior was drug related. Once she stopped taking Mirapex, she was like a new person. Quiting that had made a HUGE difference.

OT visits and testing suggested she not be without access to immediate help at all times. (neuro agreed). Translate that to 24 in home care which is prohibitively expensive. She was upset but after discussing all options and ramifications of each, agreed to look at some assisted living places (she had been living with me and my family for 3 months...my husband and our 2 boys 12 and 14).

We found an awesome place just 10 minutes down the road that is attached to a senior center by a garden walkway. Four years old, bright, beautiful, friendly...really a great facility. She moved in there and after a few weeks seemed to improve dramatically in steadiness and memory. So much so that my husband and I are wondering if the right decision was made to mover her there. She will occassionally say that she'd still really like to stay at her house for a little bit to "prove herself" and that she's still looking to have that chance. (OT also did a full driving assessment and suggested that driving us unsafe so that isn't an option at home or AL).

We did find a different neuro in the meantime who felt that it is Lewy Body (as we also suspected) and not parkinsons (no tremor, quick onset, memory problems, lack of spatial/directional skills etc) .

I feel absolutely sick about it and her sadness at wanting to go back but feel, in my heart, that the AL facility is the best thing for her. I also take her to PT and dr appnts about 3 times a week and can get her whatever she needs or take her wherever she wants to go regularly because she is only 10 mins away as opposed to 45. One thing that probably bothers her as well is that she is pretty young in relation to others at the facility. She says she doesn't want to die there.

She seems like she is doing so well yet from everything I read this can be short-lived.

P.S. I am taking her to Vegas for her 70th (her request this weekend). Hoping she has a great time.

Anway, so sorry for the looong intro! Just wanted to lay it all out there and see if anyone has any thoughts.

This was wrirren long ago but in view of your introduction, I think it bears repeating. I'm sorry you find yourself here but please know you are among friends:

Thanks so much for your reply and pointing me to that post. I guess even though she seems great, I am not seeing her 24/7 like I did before she moved there. She put on quite a "show" for the long term care nurse coordinator (not a great time to be at your best when someone is trying to assess your eligibility for payouts). Never occurred to me that she might be putting on a "show" for me as well. Light bulb moment right there

You didn't mention whether your mom had any Neuro-psych testing done, but that was the definitive answer about my mom's LBD, although as I'm sure you've heard the only absolute in diagnosing Lewy's is a brain autopsy after death.
Most of the time my mom is fine, too. She sleeps a lot, but when she's awake she usually does pretty well cognitively. But if she gets run down or a cold or any kind of infection her cognition immediately drops away. As a matter of fact when I took her to have some compression stockings tried on last week, the nurse commented that "You'd never know she had Lewy's". She can go on like this for days or even weeks, but then something happens and she's "out of it" again. I'm really fortunate that I was able to stay home to take care of her because there's no way that I would let her live alone. She also has other medical problems besides Lewy's and is going to turn 79 the end of this month.
Welcome to the forums and hold on because this is a very bumpy ride!
Ellen

"Putting on a show" in the LBD community is called "show time." I'm always amazed when I hear from caregivers that their loved ones's neurologists are unaware of this (possible) aspect of LBD.

Jcuy,

Welcome to the LBDA forums, sorry for your need , as I am sure you have read and are experiencing this illness has some strange twists and turns and the LBD journey can be a challenge to say the least, I would say your Mom is probably better off in the ALF than being so far away at least there you can be on top of things with her care, if it is LBD she won't get better I am sorry to say but with that said she can have quality of life with the proper care, meds and management!

Good Luck and I hope you join us often !