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 Introduction to LBD Family 
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Joined: Mon Jan 27, 2014 11:05 pm
Posts: 12
Post Introduction to LBD Family
My journey started almost four years ago when my husband starting saying things that didn't make sense and forgetting a lot. After six months of testing and a vacation that scared me when my husband seemed to be forgetting how to drive, and we went somewhere we we went every year and he kept saying he had never seen it before the doctor diagnosed him with LBD. He immediately stopped driving and since I had no way to get him to work he had to stop working as well. In the next three years he developed Parkinson's, his movements have become very slow. He sleeps a lot. And gets lost in our home all the time. He can't find the bathroom, the closet, the trash can, to name a few. Last spring I had to stop working to become his full-time caregiver because he could no longer be left alone.
I feel like my life has been on a never ending roller coaster ride for the last 4 years and I can never get off. I just turned 55 and my husband will be 62 next month. We just had our 10th wedding anniversary. I was hoping I could work longer but that wasn't possible so we are living off of my husband's disability. After a year of red tape we have been approved for some home care but that will probably be another couple of months.
I have frequently read through this site and others to gain as much knowledge as I can but have never written anything. I am presently dealing with a new decision and was hoping to get some input and experience from those of you who have gone thru this. My husband was in the hospital over Christmas with a new problem, he had Afib, and was in 4 days. since then he has been more confused and he constantly thinks someone is taking his stuff. We have been suffering financially since this all started and I am tired of fighting. We will probably lose our home which doesnn't bother me as much as if I move my husband into an apartment with me, will that hasten his decline. I want to keep him with me as long as possible and I'M afraid if we move with his constant fear of people taking his stuff he will not be able to handle it and it may hasten his decline. Sorry if I'm babling, but any input would be appreciated.
Thanks
God Bless
Mary


Tue Jan 28, 2014 4:17 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Introduction to LBD Family
Hi Mary - I am so sorry for what you are going through. Hospitalization can really throw these folks for a loop, but many times they can eventually come back to where they were before the hops. so you may need to just give it a bit more time.

Do you have a financial advisor who might be able to help you with your current situation so you don't lose your house? (Maybe you're good with that sort of thing, I'm not, so I'd hire someone who knows more about options than I do if I were in that situation.)

As far as moving your husband, you've just witnessed what moving can do to a person with LBD so I totally understand why you aren't keen on having to move him anywhere. Thus, one more reason to see if there isn't something that can be done so you don't lose your house, like a reverse mortgage or other options… When he becomes a 2 - 3 person assist, what will you do then? Have you looked into facilities, because much as none of us wanted to move our LO to a ALF or SNF, inevitably that does happen to lots of folks unless they can afford in-home care, which is quite expensive. If he is nearing the point where you may not be able to help him transfer, lift him out of bed, etc. he may need to move anyway. Has he been evaluated by a healthcare professional who might be able to give you some kind of idea of the trajectory he is on?

There is a lot to think about and plan for, all of it is stressful and I'm sure not how you expected to be spending your time. But, if you can try to anticipate the future as best as you can, you will be less at wit's end when those Lewy "surprises" happen. If you haven't already, I'd suggest you read as much as you can, particularly on topics that are the most important to both of your right now.

Again, I'm so sorry. Please come back often - there's a ton of info. here and lots of support from people who are or have gone through similar circumstances. 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.


Tue Jan 28, 2014 6:20 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Introduction to LBD Family
Welcome Mary! I agree with Lynn about checking into a reverse mortgage, it may be just the thing to enable you to stay in your own home . I have no idea what your financial situation is, but I know my mom was able to get a reverse mortgage several years ago and will be able to stay in her own home until she dies. One less thing to worry about.
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Last edited by empritchard on Thu Jan 30, 2014 12:14 am, edited 1 time in total.



Wed Jan 29, 2014 10:47 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Introduction to LBD Family
A reverse mortgage is quite different from a second mortgage and might be just the ticket, as you will not have to make any payments but you can receive payments, based on how much equity you have in your house. Reverse mortgages are for those 62 or older. Worth checking into.

_________________
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.


Wed Jan 29, 2014 2:08 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Introduction to LBD Family
Thanks for pointing out the difference Pat. I had said "reverse" in my posting but it got mis-translated in the next posting. A 2nd mortgage does not sound like what they might need at this point. If you have equity in a home it may be the best choice in a situation like this. 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.


Wed Jan 29, 2014 5:45 pm
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Joined: Mon Jan 27, 2014 11:05 pm
Posts: 12
Post Re: Introduction to LBD Family
Thanks for your responses. We don't have enough equity to get a reverse mortgage. I wish I new how long I could keep him with me. I hate the thought of moving and causing him any more confusion and hastening his need for more care. I'll have to keep looking for my crystal ball that shows me which path to take. A funny thing happened today my husband picked up something off the floor and walked right over to the trash can and threw it away. He hasn't been able to fine the trash can for over a year. It put the biggest smile on my face. He couldn't find his breakfast but hay, with Lewy we can't expect too much.
Keep smiling
God Bless
Mary


Wed Jan 29, 2014 9:24 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Introduction to LBD Family
Hi again Mary - I hope you can sell your house, rather than "lose" your house as you stated. Perhaps meeting with a realtor and putting it on the market so that you don't lose the amount you've put into it is the best you can do at this point. It would be awful to lose what equity you DO have in it. If you think he can be with you for another year or more, I think moving to an apt. and selling your home would be preferable to just about anything else I can think of. All the best figuring out which is the best path for the 2 of you now, 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.


Wed Jan 29, 2014 10:21 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Introduction to LBD Family
Oops! I meant reverse mortgage. Sorry,I went back and fixed it.

_________________
Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Thu Jan 30, 2014 12:16 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Introduction to LBD Family
Thanks Ellen. :P

_________________
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.


Thu Jan 30, 2014 8:56 am
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Joined: Sat May 25, 2013 3:53 pm
Posts: 251
Post Re: Introduction to LBD Family
Hi Mary,
Welcome to the forum! I know it's hard but have you thought about the extended care facility option. It doesn't sound like you're quite ready for that but as things change it gets harder and harder to care for a LO at home and over time YOU wear out. I've seen it work very well to have the LO in a care facility and you can visit as much as you want but you go home to sleep and get a good nights sleep which makes all the difference in the world to the next day! Enjoy those moments wear you get to see your husband again. I think of those times with my Mom all the time. :)

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Fri Jan 31, 2014 11:57 am
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