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 New Member from Cleveland OH 
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Joined: Fri Feb 06, 2009 7:22 pm
Posts: 10
Post New Member from Cleveland OH
I'll start with a laugh. I have been reading the forums and sending a few $ to LBDA for quite a while, and finally decided to join in the discussion.

Poor Jim, the forum administrator, asked me for a "few words" on why I wanted to join. Thinking he was a member of the club, I poured it all out for him. :) He said I should copy and paste my book here, so that's what I'm doing.

Thanks for the caring ear, Jim! Poor guy! :)

And here's my story.

Where to begin... my father was a chronic alcoholic whose behavior got much
worse in his 70s. He wasn't diagnosed with Alzheimer's until things had
gotten completely out of hand and Mom and I could no longer care for him. He
was given Haldol. If I could revisit that experience, I now feel I could
have done much better by him. He died in a nursing home in 1998.

Mom and I talked about her future, setting up a living trust and all
appropriate papers "just in case", but she was adamant that she never wanted
to end up "in a home" like my father did.

In 2003, I discovered that things were going terribly wrong. It started with
Sears sending Mom a nasty letter about her credit account not being paid and
it snowballed from there. I took over financial matters at that point and we
started to work as a team to take care of everything. I started carrying a
copy of The 36 Hour Day.

By 2005/2006, the problems had gotten worse. I moved Mom's healthcare to
Blue Cross so I could take her to a geriatrician. Mom was always extremely
sensitive to ANY medications, but the behavioral or sleeping type meds put
her over the edge very quickly. We tried a number of them, but had to take
her off in each case. She was getting more Sun-Downy by the day. At least
she was wearing her safe-return bracelet for me - one of the few little
battles I won.

Mom wanted to sleep all day and be up all night. She ran out of the house
after unknown assailants who had stolen her baby (me). She was incontinent.
Her handwriting, when she wrote at all, betrayed a tremor that was not
obvious otherwise. I collected samples and showed them to the doctors, but
still got no help.

I tried home health aides, but my charming little Irish mother ran them all
off. I put in an accessible bathroom with walk-in shower - big mistake! She
wouldn't use it. The battles got worse.

The hallucinations, the talking (often yelling) in her sleep, and dashes out
the door - all got worse. I used to be able to leave her for a few hours in
the afternoon to run errands, but that stopped too. Her doctor wasn't
offering anything new, and we both agreed she couldn't tolerate behavioral
meds, so it seemed that we had hit a wall.

Meanwhile, I had joined the local Alzheimer's Association here in Cleveland,
and our social worker would check in regularly. I had been checking out and
visiting nursing homes "just in case", too. I checked out a daycare/respite
facility, and they felt Mom wouldn't be a good fit (mainly due to her lack
of controlling meds, I suspect).

It came to a head in early November, 2008. I had a ridiculously elaborate
scheme for changing Mom's bed (a funny story for another time), and my
teenagers would distract Mom so I could get away with it. Well, one day she caught me. I ended up in tears, with a black eye, and right then our social
worker called. She recommended an "inpatient behavioral assessment" and
assured me that it was the right thing for Mom at this time. I agreed.

I met the director of the program. Showed him my "36 Hour Day", now stuffed
with clippings, notes, and samples of Mom's writing. I showed him the notes
on Mom's inability to tolerate meds. He dismissed my concerns outright, and
I should have taken her home, but with no other avenues, I had to trust him.

She went in feisty, walking, and talking, even if confused. I had to lie to
her to get her there. (and I am still haunted by that)

1 1/2 days later, she was in a geri-chair, slack-faced and drooling. Against my wishes, he had medicated her to oblivion. Haldol and all. A real chemical lobotomy, I realized later. He backed her off the meds, but the damage was
already done. He conceded that, yes, she might be a Lewy Body afterall, but
he wasn't entirely sure.

I couldn't take Mom home. I placed her in the facility at the top of my
short list, and there she remains. I asked hospice to come in, and they
decided she was End-Stage Lewy Body Dementia. She sleeps most of the time,
but still gives em hell at night. I'm familiar to her - she knows I'm
someone special, but she isn't entirely sure if I'm one of her sisters or

I try not to cry as much now. I lost some weight, colored my hair, and have
pursued a new career in health care. We're learning to live in our new
worlds, Mom and I, but my loss and grief occasionally threaten to drown me.

I have continued to read and research, and I still print articles for the
staff. I want to be a strong advocate for the elderly in general, and the
Lewy Body/Alzheimers people in particular. I want to raise awareness of the
dangers and overuse of neuroleptic medications. I want more discussion of
CPAP therapy for the elderly (and I do understand the enormous difficulty of
keeping an oxygen mask on a confused and agitated person), and mostly, I
want to "be there" for all of these people and their families.

You asked for a little info, and I poured forth like a waterfall! Sorry! I
had read a few more posts to the forum, and thought maybe I could contribute
something from my experience. And I promise not to write a book every time.

Thank you for your consideration, for "listening" to my story, and THANK YOU
for volunteering!


Mary B
Cleveland OH


Sat Feb 07, 2009 9:51 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Dear Mary B,
Welcome to the LBDA forums, sorry for the need to be here but I think you will find information and compassion here . What a terrible story you have, dealing with 2 parents with similar issues.You can not blame yourself for the outcome with your Mother, you were desperate for help and had no idea she would be so medicated from the gitgo, its sad to know that many doctors just don't LISTEN to the families and the people who know these patients so well. I am sure you can contribute here.
Yes Jim is a dear heart and he too cares! I thank you for your donations to the LBDA , everyone of them counts and I pray one day there will be a medication, cure for LBD, that is my hope.

Irene Selak

Sat Feb 07, 2009 10:24 am
Profile WWW
Site Admin

Joined: Sat Mar 24, 2007 3:23 pm
Posts: 5
Location: Panaca, NV

I was honored and humbled to read your story. Please do not feel sorry for me, as I only wish I could provide more for the forum. Unfortunately I do not have the experience with LBD to begin to offer what caregivers and patients bring forward. To reinforce what Irene said, we are very happy you decided to participate.


Jim Manner

Sat Feb 07, 2009 10:34 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Jim ,
I was just about to send you Mary's note, glad you came in to read it yourself!

Irene Selak

Sat Feb 07, 2009 10:38 am
Profile WWW

Joined: Fri Feb 06, 2009 7:22 pm
Posts: 10
Thank you, Irene! And that kid, Jim!

I wish I didn't have to be here, either. Ha ha. I hope I can help others get through this experience by sharing my own.

Is this group mostly spouses? Any "kids", like me? I'm 45 yo. I have two older siblings who are not willing/able to cope with this. My own children (25, 21, and 20) have been wonderful throughout.

I invite other members to ask me anything - I've probably seen it, or can suggest reading material for it.

Onward and upward!

Sat Feb 07, 2009 10:40 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Mary B,
The group that is here is mixed and yes there are many children, sisters, brothers and not all spouses. As you become more familar with the forum, you will find more replies in the sub categories that apply to the questions and comments.

Irene Selak

Sat Feb 07, 2009 10:45 am
Profile WWW

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Mary B,

Welcome to the group though sorry you have a need to be here. You have a lot on your plate.

You might take some time to read through the first page of posts in each of the subforum areas, so you can get to know some of the people here.


Sat Feb 07, 2009 2:35 pm

Joined: Sun Jan 04, 2009 9:04 pm
Posts: 5
Mary B, I also have learned so much just from reading so many of the posts. Even through your story I learn. I feel this forum is where the rubber meets the road. The loved ones who deal with this moment to moment, along with the guidance of those who have been there, with mile markers of what to keep an eye out for along the way.Welcome and know you are not alone. My Dad has LBD, and Mom experiencing failing health as well with signs of dementia.This web site keeps me gounded, and keeps me from flying off in anger. Thanks.

Tue Feb 10, 2009 11:05 am

Joined: Fri May 11, 2007 12:54 pm
Posts: 115
Dear Mary B,

Welcome to this forum. So sorry that you are a member of the Lewy Body society. You have certainly had more than your share of heartache. You will find a lot of knowledge and understanding here.

I became a member of this society in September 2004 when this disease struck my mother-in-law. Even though I was her daughter-in-law I had been looking after her for over 20 years. We too were the victims of a health care system that did not have a clue about Lewy Body. Before we could figure out what she had, she was already in a full blown psychotic episode. She ended up in a psych ward where the doctors never talked to me or bothered to return my phone calls. The only time I met her psychiatrist was the day my loved one was released from the psych ward. The doctor was not much help and kind of lumped her illness in with Alzheimer's and sent us on our merry way. All the professionals kept telling me Alzheimer's, but I knew it wasn't the same thing. I grew up around people with Alzheimer's as my mother was placed in a nursing home when I was four(she had a brain aneurysm that left the rights side of her body paralyzed and unable to function on her own) so I saw how people acted with this disease. I researched dementias at our local library and managed to stumble upon one little blurb in a medical book about Lewy Body. Unfortunately, I didn't start on the internet research until mom was back home for quite a while. Just didn't have the time. I thank God that I finally stumbled onto this site. As I look back, I wish I had discovered this site at the beginning of mom's illness,but better late than never. You will find that the people here are intelligent, kind, helpful, and with great senses of humor. I know I would not have gotten through this journey without them. I am forever grateful.

So, you see there are many different situations here and relationships that were and are affected by this illness. You are not alone and we are all here to support you on this journey.

Joyce K

Wed Feb 11, 2009 9:47 am
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