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 new and needing help 
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Joined: Tue Aug 30, 2011 1:57 pm
Posts: 2
Post new and needing help
This my first post but I am feeling desperate. I am a 65 year old with MS caring for a 69 year old with yet to be diagnosed LBD. No doubt in my mind that that is what he has. He has been treated for Parkinsons since age 62. A few minor hallucinations attributed to medication. Very manageable.

But in the past three months he has changed completely. Unable to read for very long, living with frequent hallucinations most of the day, easily lost, cannot remember how equipment such as the TV remote works, unable to think of ways to occupy his time, financial matters confound him (he has a PhD in finance), etc., etc. Very low blood pressure upon rising. I fear leaving him alone for very long. I do most of the driving and know I need to cut him off of the rest. All of this is accompanied by periods of relative calm and normalcy.

Our life is boiling down to the fact that I can care for myself but not the both of us. We are scheduled to move into an excellent and expensive continuing care community. We both have passed the physical for independent living. Hence, my reluctance to have the new symptoms entered on his record until after the move. Once we move, the community is free to determine what level of care we need. I am pretty sure that because of the way things are going, they will eventually (not too distant future ) place him in the Memory Support unit . How well does that work with the fluctuating nature of this disease.? Or should we stay in our home and try to navigate the perilous caretaker route.

Any advice would be welcome. Naturally this decision has to be made very soon. I am paralyzed with indecision and feaar

Sat Sep 03, 2011 8:53 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: new and needing help
First, welcome to the forum. We are always glad that someone who needs it has found this place to vent, to learn and to feel they are not alone. Secondly, my two cents worth about the living arrangements: There will most certainly come a time when your husband will need to be in a separate facility as you will no longer be able to care for him. Don't wait too long. MS, as you know, is exacerbated by stress and, as you probably have already found out, living with Lewy is very stressful. There will also reach a point at which you won't be able to physically care for him. The time line differs from person to person but it is inevitable that you will either need to have in-home care or place him in an appropriate facility.

It is important that you learn what the 'memory care' facility will allow in terms of care and behavior. Lewy can be tricky, sometimes even violent. And also there are some facilities that will not keep them when they become totally incapacitated.

Hope your situation will not be as dire as this sounds any time soon but you must take care of yourself and get help in taking care of him. God bless you!

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 Sep 03, 2011 9:09 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: new and needing help
Welcome, and I "second" Pat's excellent advice. If you are already heading to a continuous care community, I'd get in there as fast as possible. His situation can worsen overnight, literally, so getting him in at the level where he is now may be imperative for you.
You are so right - you do need to take care of yourself, so do everything you can to get him the help he needs from others too so you are able to take care of you.
Keep in touch here often. There's a lot about LBD on this forum, the caregiving role, and it's a place to vent and get support. Take care, 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.

Sat Sep 03, 2011 9:47 am

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: new and needing help
It sounds like a continuous care community is a good solution for your situation. Lewy is highly unpredictable. It may be that now that dementia symptoms are showing it will progress rapidly. Or it may be that once these symptoms are addressed by a medical professional very familiar with Lewy that they will be managable and you will have a little more time together. In any case, being somewhere with alternatives available should relieve some of the stress.

Welcome to the forums.

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 Sep 03, 2011 7:25 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: new and needing help
Welcome to the LBDA forums, it sounds like you are being really realistic with what the future holds and you have already been given some great advice and I would like to add that if you go to the there are many things you can print off and present to the memory care unit when the time comes to see how they would be with working with a person who has LBD and perhaps they even have a resident there already with this !

Good Luck, visit us often!

Irene Selak

Sat Sep 03, 2011 8:17 pm
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