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 Newbie from Ohio 
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Joined: Sun Jun 02, 2013 5:24 pm
Posts: 3
Post Newbie from Ohio
My 64-year-old husband was diagnosed with LBD earlier this year, but I have been fairly sure that was what he had for the last three years or so. Like so many others, he was initially diagnosed with Parkinson's, but he had enough other symptoms that I suspected it was something more. I'm going through a very stressful time in my life right now. In addition to my husband's LBD, I recently had to put my mom and dad in a nursing home. My father has advanced melanoma, but despite his problems, he had been caring for my mother, who also has dementia. She has never been diagnosed with a specific type, but she may also have LBD, as her symptoms are similar to my husband's. Dad's melanoma spread to his brain earlier this summer, and we went though a bad time when between the steroids, the radiation, and the disease, he had all kinds of complications, including not being able to walk, which is why he and mom went into the nursing home. Dad is feeling much better now, but neither he or Mom will be able to live at home again. Dad will probably only live a few more months. Right now I'm just feeling overwhelmed. I have two sisters and two sons, but all of them live 100+ miles away, so the bulk of the care and decision making falls on my shoulders. I feel as if I'm not able to give my husband, my mom, or my dad the attention that they deserve. That, of course, makes me feel guilty as well. I don't want to make it sound as if everything is gloom and doom because it isn't. My younger son got married in June, and my older son and his wife just had their first child last December. I'm plugging along, and making it through, but the going is rough. I guess another thing that could be viewed as a positive, is that now that we are doing some planning about my dad's end of life journey, we are also talking about our own preferences. I have always been a planner, and part of my frustration is that things just seem out of control right now. As you all know, I never know what to expect from my husband from one day to the next. I have some specific questions I would like to ask, but I will try to find the best forum for those.

Buckeye Susie

Wed Sep 04, 2013 10:48 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Newbie from Ohio
Susie, you certainly have a multitude of issues you are dealing with! Please do what you need to do to keep your health and sanity. God bless you!

My father died from melanoma. I nursed him through his last two weeks of life. :cry:

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.

Thu Sep 05, 2013 12:48 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Newbie from Ohio
Susie - welcome to the forum. I hope you can figure out a way to get more help. Being a CG for 3 people does not sound very doable and you don't want to collapse from fatigue or get sick from the stress. I'm glad your parents are in a facility so they have 24/7 trained people with them, but it still is a lot of work keeping track of what's going on, visiting, managing their affairs, etc.

I hope you come back often for support. There are lots of us out here willing to help wherever we can. Big hug, 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.

Thu Sep 05, 2013 4:58 pm

Joined: Sat May 25, 2013 3:53 pm
Posts: 330
Post Re: Newbie from Ohio
I'll also say Welcome to the Forum Susie. You have an awful lot on your plate right now so hang in there! As someone who's made it through a very intense caregiving time, I can only say - take one day at a time, find a little time for yourself everyday - and don't feel guilty about it. You need you time to survive the stress so you can continue to be a great caregiver!

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

Fri Sep 06, 2013 11:02 am
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