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 Hello my story thus far........... 
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Joined: Sat Jan 23, 2010 12:57 am
Posts: 2
Location: Clover, SC
Post Hello my story thus far...........
My mother was diagosed in her 30's with Rheumatoid Arthritis. 5 years ago she was diagnosed with Pulmonary Fibrosis. She is 62. About 5-6 months ago she fell. She said she couldn't feel her right side. We took her to the ER and suspected a stroke. They admitted her to the hospital and ran multiple tests.

Her brain scan showed a significant loss of brain mass. The doctors told us she has Lewy Body Dementia/Parkinsons.

It is hard to believe that a few months ago she was up moving good and out shopping with me. Now she can barely walk and is falling alot. She has no problems with remembering things from years ago but is struggling with recent events. She is unable to make it to the bathroom and will not wear depends.

As far as hallucinations. I don't know. A couple times about 6 months ago she said she thought her house was haunted. But thats it.

She has problems finishing sentences when speaking.

This has all come on so very fast. Like I said we were just shopping together............and shes only 62.

My father has had multiple back surgeries as well as stints in his heart. He is literally running the house. The cooking, cleaning, lifting my mom when she falls, etc. Me and my sisters have thought about an assisted living home but my father refuses any kind of help and says he will take care of her.

I go over and clean and help as much as I can but its hard to get there alot. I have a husband and 2 kids and a house of my own.

I just can't believe this...........

Sat Jan 23, 2010 2:11 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Hi - welcome to the unfortunate world of LBD. I hope you read lots of the posts on this site - I think they will be very helpful to you. I've only been on this for a week, have learned a lot, made new friends, and feel like it's a lot of support for me. Please consider joining a support group and go to a counselor who knows a lot about LBD. Our local hospital has a Memory Center with social workers who do counseling and run support groups. I do both, and it is great to have a 1 on 1 with someone who knows about this dementia stuff inside and out.
You (and any siblings) may just need to get together, come up with a plan, then get up the courage to take charge, sit your dad down, and discuss the reality of the situation. If he already has health problems, they aren't going to get any better with him being the #1 caregiver for your mom.
Trying to juggle your own family life too is a struggle. I honestly don't know what I'd do if my kids were still little. When I still had 2 at home and my parents had health issues, I'd take a week of sick leave, fly down to take care of them, but I'd have to get back to my own family and job after a week or so. Luckily this didn't happen a lot, but last year things changed dramatically for my dad and my mom died 12 years ago. So, I spent most of the summer going back and forth from Vermont to Maryland taking care of things - my dad went from independent living, to being hospitalized, to rehab, to assisted living. In 3 weeks he went from independent living and driving to all of that. While he was still living at home in June he thought he was fine, should continue to drive, didn't need any help, etc. I had to be really strong and tell him I was going to get helpers coming in a few hours a day, he could not drive any more, and I didn't want him to have to have the burden of taking care of his finances. (at that point I thought he had been paying his bills and everything ok. turns out things were slippping through the cracks and I didn't even know it till I took over.) He seemed relieved that I would take care of his bills, etc.and finally agreed to my suggestions, unhappy as he was to not drive.
So, he lived at home 3 weeks with part time helpers, then he became totally helpless. Apparently this abrupt decline has happened for a number of LO of people on this forum. At least you can be ready for what is likely to happen by reading the postings on the forum and talking on the chat.
Reach out, and I am sure there will be lots of support here to help you through this difficult time. Best wishes, Lynn

Sat Jan 23, 2010 2:30 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Sorry you've had to join us here but welcome.

Sat Jan 23, 2010 3:25 pm
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