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Joined: Sun Mar 11, 2012 7:40 pm
Posts: 3
Post New Member
My mother who will be 88 years old this May was just diagnosed with LBD. She lives with me and there are good days and bad. I found this site by searching the internet and just reading various blogs has been so helpful to me. Thank-you for being here.

Mon Mar 12, 2012 4:38 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New Member
Welcome to the forum, Mary! Hope you find it as helpful and supportive as we all have. God bless you for taking care of your mother.

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.

Mon Mar 12, 2012 5:18 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New Member
Welcome to the LBDA forums, sorry for your need but glad that you found us and I hope there are some helpful hints or tips to help with your Mom !

Good Luck !

Irene Selak

Sun Mar 18, 2012 6:25 pm
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Joined: Sun Jul 29, 2012 5:58 pm
Posts: 1
Location: Philadelphia, Pennsylvania
Post I too am a new member.
Hello Folks,
My mother will be 81 this year, she was just diagnosed with LBD about a month ago after having symptoms off and on for a few years, exacerbating after being left on her own to live ( both my brother, his wife, my wife, and myself live a city block away and physically see her for a period every day). She has had both knees and both hips replaced over the years so her mobility is somewhat hindered. Within the last 2 years she started with the shaking hands (Parkinson's onset?), within the last year she has had bowel/urinary "accidents", within the last 2-3 months she has had hallucinations and memory loss. She has found herself semi-living at my brothers house due to wandering outside while having amnesia. She seemed to get better, went back to her house, was coherent and functioning great. Yesterday, she took an unexpected nose-dive (mentally) and is back at my brothers house. My brother is in denial of her diagnosis, is caring for her day and night, which is causing family problems with all parties. He has taken over full control of her care, he took her once to the Neurologist other than disclosing the LBD diagnosis, he has been unwilling to share other information or schedule further appointments. The rest of the family can not continue with this arrangement. Any ideas?

[b]James L.

Sun Aug 05, 2012 2:16 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New Member
I guess the question to you is oversee's your mom's affairs? Dealing with several family members can be difficult when it comes to major illnesses as you have found out everyone has their own opinion and sadly the person who is sick and needs the help ends up getting lost in all the family issues.

I do hope you can can all work it out for your Mom's sake, sometimes a family meeting can work !

Good Luck !

Irene Selak

Sun Aug 05, 2012 3:13 pm
Profile WWW

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: New Member
James, if your mother still has lucid periods, and if she does not already have powers attorney for health care and finances, or if she has them but the agents she appointed might need to be revisited, that would be a good place to start. Perhaps you should consult with an elder law attorney to see what can be done. The web site (National Association of Elder Law Attorneys) is a good place to start. There is a search engine for finding elder law attorneys near where one lives.

Good luck,


Sun Aug 05, 2012 5:01 pm

Joined: Wed Aug 06, 2008 2:24 pm
Posts: 40
Post Re: New Member
Dear James,

Welcome to the LBDA forums. We hope you find this a welcoming, informative and supportive community!

If she has taken a sudden nose dive, it is best to take her to the doctor to explore whether there is any medical reason behind it. Pain or infection can cause a temporary and rapid decline in the abilities of someone with LBD. (Urinary tract infections are a very common culprit and she may not even realize she has one.)

It does sound like you need to research your mother's legal affairs. Does she have a power of attorney in place? If not, that absolutely is an essential first step.

And having a family meeting with all siblings/spouses to talk about how to best support her medical care and needs for increased living support may be necessary. Family dysfunction can run rampant at 'crisis' times, so be prepared for emotions to run high. If you can get everyone's agreement early that the goal is to evaluate and meet the needs of the person with LBD (over everyone else's emotional wants), that may be a helpful start. (Sometimes its helpful to establish a shared goal or objective before getting into the mechanics of how to address what sometimes are a multitude of differing priorities between the people involved.)

Best wishes for you, your mother and the whole family,

Angela Taylor
Director of Programs
Lewy Body Dementia Association

Mon Aug 06, 2012 11:35 am
Profile WWW
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