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 New here - Dad diagnosed with LBD 
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Joined: Mon Nov 25, 2013 7:34 pm
Posts: 2
Post New here - Dad diagnosed with LBD
So glad to have found this forum! My Dad has been diagnosed with LBD. He is only 66.

About 4 years ago, Dad had a stroke that affected his speech and seemed to have trouble finding words. After the stroke, he was very depressed and sleeping a lot. Both are common after-effects of stroke. Thankfully, he didn't have any paralysis. This June, he started falling, soiling himself, and having constant incontinence. He also started sleeping a LOT more - some days up to 20 hours. He spent 4 weeks in a long term care wing of our local rural hospital undergoing physical therapy for his shuffling gait and problems moving. He was also fainting a lot and his blood pressure was all over the place. Eventually, he checked himself out of the hospital and my Mom has been taking care of him at home.

Mom was mentioning to their GP how she felt he was having some sort of neurological problem and the doctor was shocked they didn't do a MRI this summer. So, after a MRI and EEG, the neurologist was able to diagnose LBD. Neurologist also found Dad continues to have small strokes deep in his brain.

Overall, Dad's memory is not as bad as his mobility. He is not only shuffling when he walks, but very unsteady and sort of listing to one side - sort of like a leaning tree just waiting to topple. I feel powerless and sad watching the changes in him. The neurologist has been helpful prescribing meds that seem to be helping a little. However, it's difficult for him to get full doses of meds each day because he is asleep most of the time. With all the sleeping, his mobility seems to get worse almost daily.

I know Mom wants to keep him at home as long as possible and I agree. Once he is no longer mobile, she won't be able to help him anymore (she is 5'2" and he is 6'4"). Mom is literally working herself to death trying to keep up with his laundry, doctor's appointments, finding items he has misplaced, etc. It's awful seeing her so tired, sad and stressed.

I know I am preaching to the choir's just nice to have a place to share this experience with others who "get it". And thank you to all the others here who take their time to share what is going on with their loved ones. Prayers to you all.

Sat Dec 14, 2013 9:19 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: New here - Dad diagnosed with LBD
Welcome, Shelley and I'm sorry for your need to be here. Can your mom get someone to come in a few hours a day (or a few times a week)? She literally could be working herself to death so it's really important that she get some breaks to relax and to take care of herself. Has she considered getting hospice to evaluate your dad? If he is sleeping that much it may be appropriate to get hospice involved and that would give your mom a helping hand (plus more moral support) in helping out with your dad. Take care, come back often. 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.

Sat Dec 14, 2013 11:09 pm

Joined: Mon Nov 25, 2013 7:34 pm
Posts: 2
Post Re: New here - Dad diagnosed with LBD
LTCVT - thank you for your suggestions. We are going to start getting someone to come hang out with my Dad so my Mom can have a break. She is a champ for doing what she is doing. (She and Dad met when they were 15, married at 20. She keeps telling me she will do this for as long as she can and wouldn't feel right about putting him in a facility. Sadly, with the decline in his mobility, that day is coming.)

I don't think he is close to needing hospice, but I do think a home health aide would be helpful. He does sleep a lot, but is still able to walk with a walker and feed himself. All the sleeping (inactivity) is not helping his balance and mobility problems.

For Dad, his mental state is dramatically altered when he has any type of infection. So, we are really trying to stay on top of things for him.

Appreciate everyone who takes the time to participate here. We are sure learning a lot.

Sun Dec 15, 2013 9:03 pm

Joined: Sat May 25, 2013 3:53 pm
Posts: 330
Post Re: New here - Dad diagnosed with LBD
Hi Shelley and welcome to the forum! My Mom had LBD and my Dad took care of her at home by himself and refused to have any help for as long as he could. Finally there came a point where he absolutely had to have help. We managed to get a live-in nanny and she made all the difference in the world. My mom had the care and attention she needed and my Dad was able to get some sleep and some time away and that made a BIG difference for everyone. Caregiving, as everyone here knows, is an exhausting job! I too found this to be a great place to get information and just confirmation that the different things that come up are common to a lot of LBD patients. Hang in there!

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

Mon Dec 16, 2013 11:50 am
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