For those who care for someone with Parkinson's disease
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By lostdaughter On 2008.12.30 13:18
Thank you so much for your input & advice to my earlier post.

Mom, sis & I met with a home care provider & the 3 of them agree that Mom needs someone with her during the day but that sis & I can cover when we're not at work. Me? Although we can't afford 24-7 assistance I don't think sis will hold up for more than a couple weeks under the pressure of sleeping on Mom's floor but I'm stepping back & holding my tongue in an effort to avoid a family war. Mom told the home care provider if we tried to put her in NH she'd figure a way to get out & find her way home.

My plan at the present time is to PUSH her neurologist to test for PD dementia. I need to know - for her overall health & my own mental health. I'm sick of trying to figure out if she's doing things intentionally or if there's a medical reason. I really don't care if the neurologist thinks it's necessary or not. Testing is the only way to know for sure & will give us something to plan future care around.

Since she's been home she's as docile & cooperative as can be. We give her meds, make sure she eats & walk beside her whenever she needs to move around. She's the center of attention & she loves every minute of it.

I'm angry - angry that I've spent the past few months trying to figure out what the devil is going on with her, angry that sis quit helping with no advance warning then turned into Super Woman once everything went to pot, angry that they've been making plans behind my back without telling me they don't agree with the NH idea, angry that sis volunteered to do things she knows she isn't capable of handling long term - just really angry.

Please keep your fingers crossed, pray for me, or whatever you believe will help that I won't have to show my rear in order to convince the neurologist to test for dementia.

By susger8 On 2008.12.30 18:32
Your posts make me feel so sad.

I don't think there's any question that your mother has dementia. (Or medication-induced psychosis which theoretically is different but in actual practice might as well be the same.) Your description of her behavior sounds very typical. It's not your mother who's making your life hell -- it's the disease.

I had my dad tested at a university hospital so I could get feedback about whether he should stop driving and stop living alone (the answer to both was yes). It was not done by his neurologist, but by a team of a geriatric psychiatrist, a psychologist and a social worker. They gave me recommendations after getting the results, which was quite helpful.

Your neurologist does not have to order the testing. I would suggest trying to locate a geriatric psychiatrist. In my area the best way to find one was through the county department on aging.

I hope you find a way to work things out. You said your mother qualifies for Medicaid. I am pretty sure there are ways to get in-home care paid for at least partly -- in my state there is a program, and there is also a federal one, though it doesn't pay a whole lot. You should see if you can get a social worker through your city or county. My dad's social worker has been hugely helpful in guiding me though the maze of available services.

By annwood On 2008.12.30 22:20
Glad to hear from you again. Thanks for the update.

I feel certain that your mother has dementia but can also understand why you want to know for certain.

You should know that anger is a very natural part of caregiving and it is actually beneficial for you to express that as a feeling. You have every reason to be angry. You life has changed dramatically, you are tired, nobody seems to appreciate what you do, etc. It seems the norm for one particular individual to become THE caregiver. Everyone else sits on the side and criticizes. This probably won't make it any easier for you but it is quite normal in other families, including mine.

Let superwoman take over for awhile and get some rest - do something you want to do.

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