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Joined: Sun Jul 08, 2012 7:39 pm
Posts: 2
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I've been reading your forum for a few weeks now. My mom was diagnosed with LBD just about a week and a half ago. I was not suprised by the diagnosis, but had never heard of the disease up until a few months ago. Mom's problems started about a year ago, mainly with hallucinations. She voluntarily gave up driving last year, and of course we have seen a steady decline in her health and abilities. She was always anti-doctor, and has not been seen for ANYTHING since the mid 70's. She's 81, and she lost her husband, my step-dad, in January of this year. Her symptoms got worse after the stress of his illness - a misdiagnosed cancer that took him in less than a month, but he was hospitalized nearly all that time, over the holidays. Her main problems at this point are executive functioning, misplacing things and blaming it on the "kids," some sporadic paranoia that her house is bugged and people are trying to get her money, etc., and the hallucinations of mostly kids in her house and just about everywhere else we go.

It wasn't until March that I finally got her to agree to see a specialist. We've been taking her to a speciality clinic with doctors who are very up to date on LBD and other types of dementia, which I'm very grateful for! She has good days like yesterday, where I can have a typical mother/daughter conversation with her, and bad days like today, where she felt her house was full of people and they weren't going to let her back in. My brother lives with her now, but she is often alone during the day. She handles it well for the most part, but I know it cannot continue long term. Right now I'm just trying to get her into some day programs so she can keep a routine, and keep herself busy. When she has too much free time she tends to go into more delusions and paranoia. She'll be starting on Aricept as soon as the authorization goes through - it's already been over 10 days and it's frustrating.

I have 6 siblings, most of which have never gotten along, but things really declined after my step dad's death and mom's illness. It's hard to get everyone to agree on what's best, so I'm just doing what I can and trying to focus on what she needs and the heck with everyone else. One of my sisters has been a huge help, as she has taken over my mom's financial dealings and pays her bills for her, etc. I moved mom's mail to a P.O. Box at her request, so she wasn't losing all her mail before we could help her with it. (Our siblings were really mad about that, for some reason.) I take care of all mom's health needs, and I try to get her out of the house for trips to the store, etc. as much as I possibly can. The two of us sisters sat my mom down and explained her diagnosis to her last week. She took it well, and almost seemed relieved that this wasn't her fault. Her husband's name was Lou, so when we mentioned the name "Lewy bodies" she started laughing and said that it was funny that was the name of it. Now when something comes up that upsets her, like today, I tell her that it's just Lewy making her confused and to try and remember that.

It hasn't been easy, and I know it's just going to getting harder. I've tried to get her to move in with us so I can help her more, but she has not agreed to that as of yet. I have a 23 year old son with autism, a 20 year old "adopted" daughter with cognitive impairment, and my son's girlfriend who stays with us 4 or 5 days a week, who has cerebral palsy and is confined to a wheelchair. My husband lost his job a year and a half ago, and I'm an exhausted professional house cleaner who sometimes wonders how many more days I can take of this. That's all I can do is go one day at a time, and I try not to think beyond that. Otherwise, I think I might go crazy.

Thanks for listening,

Sun Jul 08, 2012 11:52 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New here
Welcome, Becky! My, but you certainly have your hands full!! I hope you can find some much-needed assistance in addition to the support and information to be found here. You will be in my prayers. Hugs to 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.

Mon Jul 09, 2012 12:29 am

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: New here
Becky, WOW!! It will get harder, but it might be easier for you and your sister to do what you feel is in the best interest of your mom, and not worry about what the other siblings say. You need to take care of yourself, I bet you're saying "yah right", but a healthy diet and some kind of exercise will help, even 1/2 hour walk can help. All the best, you have a lot on your plate.

Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.

Mon Jul 09, 2012 6:56 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: New here
Welcome Becky. It sure sounds like you could use some help with all of the CGing you are doing! Like others have said, just do what you know is right and try not to pay attention to the "advice" or unconstructive criticism coming from siblings and others who aren't willing to step up and do their part.
You do need to take care of yourself - that is so important. You cannot possibly care for others if something happens to you and you owe it to yourself to be healthy.
Stop back here often - you will need more and more support and info. and there is lots of both here. 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.

Mon Jul 09, 2012 10:02 am

Joined: Mon Feb 14, 2011 10:22 pm
Posts: 194
Location: Portland, Or
Post Re: New here
Welcome Becky! Your situation with your family sounds similar to mine. I was one of 10 children (8 living) and yet most of Mom's care is done by me. There are a couple of sisters who occasionally come over and give me break for a few hours when Mom gets really bad. Most of them have been very supportive and have my back on any decisions I have to make for her.
You're right, all you can do is take it a day at a time and do your best for just that day. I've found the forums to be very helpful and hope you do, too!

Ellen 60, caregiver for mom Marion 82, dx LBD Feb 2011 died April 11, 2015

Mon Jul 09, 2012 10:49 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New here
Welcome to the LBDA forums, Wow you certainly have a great deal on your plate, as to the siblings if it were me I would print out copies of the brochures for each one and let them decide :

I would continue looking for a day program and getting yourself educated on LBD will go along way, there are many books out there: ... giving.htm

As you spend time here on the forums interacting with everyone, you will see you are not alone in this fight and I encourage you to move to areas that best fit the statement or question in order for more people to help you !

Good Luck , Visit often !

Irene Selak

Mon Jul 09, 2012 11:12 am
Profile WWW

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 349
Post Re: New here
Becky, bless your heart!
I can really identify with your feelings of being overwhelmed so soon after diagnosis. And you have more than I did to cope with.
Try to take one day at a time and follow Irene's advice (just above) to get your bearings and start to share reliable independent info with your family. Sometimes you have to choose to go with those who are working with you in your mom's best interest and letting the other voices kinda bounce off of you----easily said, harder to learn to do, I know.
You are in my prayers.
Hugs to you,

Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url][/url]

Tue Jul 10, 2012 3:31 pm

Joined: Tue Jun 12, 2012 10:22 pm
Posts: 9
Location: Northern California
Post Re: New here
Hi Becky,
I'm sorry you have so much to cope with.
As others suggested, an adult day health center can be a safe, nuturing place for your mother to go for a few hours each day and would relieve some of your worry about her being home alone during the day. I'm looking into that for my husband. How to pay for it can be tricky though -- the one near us takes Medicaid, LTC insurance (some policies cover adult day health centers), veterans benefits or private pay.

I'm new here also.

Cherie, CG to husband (81) with LBD

Fri Jul 13, 2012 3:39 pm

Joined: Thu Apr 21, 2011 9:07 pm
Posts: 248
Post Re: New here
Hi Becky,
So sorry that you have this diagnosis to face, but glad your sister is there for you, to help. It sure sounds like you have a lot to manage, and an uncertain future to plan for. I hope you can figure out a good plan that will not drain your own health and energy completely. Do know that there are many folks here who will provide practical advice, referrals, or just plain holding you in their thoughts and prayers -

Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.

Fri Jul 13, 2012 11:51 pm

Joined: Sun Jul 08, 2012 7:39 pm
Posts: 2
Post Re: New here
Thank you all for your kind words and prayers! I haven't been able to get on the website for awhile. Things are going okay with my mom, she is now taking Aricept and is tolerating it pretty well so far. She is finally agreeing that she needs some help with things, so that makes it a little easier. Thanks again for all your input!


Fri Aug 03, 2012 10:17 pm
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