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 Introduction 
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Joined: Wed Dec 08, 2010 9:41 pm
Posts: 1
Post Introduction
Hello everyone. My dear mother, age 79, has manifested the symptoms of DLB for over three years but did not get a diagnosis until her bradykinesia, fatigue and cognitive problems worsened after knee surgery a year ago. (Having been a "lurker" for a while I realize that this is a familiar situation to many of you.) As of late December Mom is in an AL facility ten minutes from my family in Dallas, Texas. This was after moving from her home town seventy miles away; a traumatic but necessary move since she is widowed and I am the nearest child. Long distance caregiving, even with inhome daytime care, was no longer feasible. Medication management alone--she has polyendocrine disorder(Addison's disease plus hypothyroidism), high cholesterol and high blood pressure--made the AL placement necessary.

Mom's continuing decline in balance and mobililty as well as her fluctuating mental state led us to add private caregivers about a month ago. She is still "with us" enough that my brother who shares in care management with me and I decided to keep her in AL with these caregivers to make her life as homelike as possible for as long as possible.

We have her meds stabilized right now, although as her autonomic dysfunction advances I anticipate dropping more blood pressure meds.

Right now she is participating in the Texas Voice Project for Parkinson Disease, a four week intensive speech therapy course to strengthen the vocal cords and improve speech and swallowing, and to also provide social outlets for people with parkinsonism. I was apprehensive about the program because of her mild-moderate dementia, but it has been terrific for her. She can't control anything else about this terrible disease, but she has been able to improve her voice. Sometimes when I talk to her on the phone her voice is almost like it was four years ago, before Lewy, and I forget and think that I still have all of my mother with me...

Before she became sick, Mom did all the right things, setting up financial and medical POA's, making me(I am the financial POA) co-signatory but not co-owner on her bank accounts. She has made the material and financial aspects so easy for me. Mom already had an Advanced Directive and the AL Director advised us to add an out of Hospital DNR to avoid "bringing her back" if she has a crisis.

Reading this, I realize that Mom probably doesn't sound very advanced. However, she still has mild hallucinations(no more scary ones, thanks to a low dose of Seroquel twice a day) and delusions--what was that term for Capgras towards locations? I've learned from the wisdom of this Forum and our local support group not to challenge her, but to be noncommittal when she tells me about the duplicate kitchen "down the stairs" in her apartment(no surprise, there is no downstairs). Time and numbers are gone, word retrieval is increasingly difficult, and she is incapable of planning or executing even the simplest task, such as dressing, without assistance. She had uncorrected double vision before Lewy and now her vision is really bad, with the spatial perceptual impairments inherent in DLB. Her sleep cycle is disrupted and it is difficult for her to sleep more than 3 hours at a time at night. Daytime naps are routine and esssential. She is sleeping about 12-14 hours a day.

Mom knows that she has DLB. She has some general idea of what is involved and knows that complications of this disease will kill her. She has gone through anger and denial as her health declined this summer and fall. Yesterday she was in a good place.

She still takes pleasure in some things. She loves the Texas Voice Project that I described above, going for frozen yogurt with my fifteen year old and me after I pick him up from school, and sitting outside enjoying the soft Texas spring(which is the weather that passes for summertime up north!). She loves seeing my dogs, my garden and her grandsons, although it is increasingly difficult for her to retrieve their names. She treasures the cards from friends back home.

I am working for moments of pleasure and enjoyment, and for companionship and security. I realize that her time to get out and do many of these things may be short. When I look at the course of her disease and what is happening to her mind, it is like watching a sand castle at the edge of the beach: each gentle wave relentlessly washes away a few more grains of sand and the castle diminishes steadily, surely, with each wave.

Thanks for letting me tell a little of our story.

Lee Jones, age 54 (almost 55), daughter of Jerry, age 79
Dallas, Texas


Sat Apr 16, 2011 3:58 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Introduction
Welcome Lee, so sorry for your need to be here, but you have come to the right place for advice, support and, all too often, a shoulder to cry on. I hope you will make good use of all the support and advice that the good people on this forum have to offer. It has made this journey more bearable for me, and has helped my dad indirectly, as the advice and support have made life easier for all of us. It is an enormous help to know that we are not alone in this. God bless you and your mother and family,
Ger x

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sat Apr 16, 2011 4:18 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Introduction
Welcome, Lee! God bless you for taking care of your mother! How wonderful that she is involved in the voice program and that it has helped her. Enjoy as much as you can with her while you can. As they say, carpe diem!

_________________
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 Apr 16, 2011 10:21 am
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Introduction
Welcome to the forum. It has helped me immensely, since I live in a rural area where no one, including the doctors, has heard of LBD. Luckily, these docs were willing to learn. I am considering having my MIL participate in Speech Therapy for her swallowing. Glad to read of your positive experiences with this.

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Sat Apr 16, 2011 11:59 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Introduction
Welcome, Lee.

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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 Apr 16, 2011 1:05 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Introduction
Welcome from me, as well. I was soothed by finding this forum and people who knew firsthand what I was experiencing. It is a lonely road if you do not have others who understand. Smiles, Nan


Sat Apr 16, 2011 1:11 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Introduction
Hello Lee,

Thanks for not lurking for a bit to introduce yourself.

Glad to hear that the speech therapy is helping your mother. I'm also surprised that she tolerates the therapy and seems to enjoy it. Is there homework and is she able to do this?

Good that your mom took care of her advance directive and assigning you financial POA. Do you and your brother share the healthcare POA? Most advance directives I've seen don't include the person's wishes with regard to brain donation and body autopsy. As you know, the LBD diagnosis can only be confirmed upon brain autopsy. I mention body autopsy as some people in our local support are starting to request them once their family members die; they report that it brings them peace of mind to learn what the cause of death is. But I don't think it's always possible to learn the COD from a body autopsy.

Robin


Sat Apr 16, 2011 5:16 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Introduction
Welcome Lee, I'm glad you have support and your mom can still enjoy some activities with family members. I wish you the best, and visit here as often as you'd like/need to. Lynn

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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 Apr 16, 2011 8:23 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Introduction
Lee,
Welcome to the LBDA forums, hopefully this can be a place for information and comfort for you!

_________________
Irene Selak


Sat Apr 16, 2011 8:34 pm
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