Hi Everyone. I am very very lost. My mother was diagnosed with Frontal Lobe Dementia / Pick's Disease last May 2008. I first noticed signs of dementia confirmed by doctors in Dec 2007. Her neurologist confirmed it with a pet scan. I relocated to an isolated area of NY to care for her a little over a year ago. She was preyed upon not once but twice most recently by a nurses aid. All told my poor mother is out close to 75K.
I have taken care of her all alone with no husband or children and been the primary caregiver. Removing her car, all doctor's appt, physical therapy, shopping, cleaning etc.
Basically most recently I feel like I made a mistake and I am having a very difficult time with it.
One trait of Pick's disease is the over consumption of both food and alcohol. My poor mother would drink bloody mary's at any time day or night. Sometimes I couldn't figure out exactly how much she was drinking because she would pour the drinks and then I would find them full in the freezer.
In any case, for the second time in two months I had to call 911 last tuesday evening around 11:30 pm. She was very sick, this happened back in February as well after being sick since christmas. I continued to get her to doctors and they misdiagnosed her over and over. Both time she was hospitalized it was metabolic assidosis. Which is basically extreme malnutrition mixed with any alcohol over a prolonged period of time causes the body to go into crisis. Both time she almost died. Was in the ICU for 5 days in february, and she is still in the hospital now.
If anyone is wondering why I allowed alcohol in the house and cigarettes it is because if I didn't have the stuff she wanted in the house she would walk out of the house and try to get to a store to get the items. This was a dangerous situation as well. I had the police help me several times when I could not find her. Anyhow, I told my siblings and my father that I can't take care of her anymore. She cried to me yesterday in the hospital said she wasn't sick and wants to go home. I am devastated that I am not doing the right thing for her. She can't control the pick's disease or the frontal lobe dementia and its not her fault. I feel awful that she will not be returning home, to her cats etc.
My older three siblings have done nothing to help me or their mother. They all have families and husbands. I am single with no children. I feel like I let my mother down but she doesn't think anything is wrong and just wants to go home. I just feel like I didn't make the right decision. If she is happy at home even if it shortens her life maybe i didn't make the right choice. Yesterday I went home to get her more ensure. She asked me to put vodka in it. That's how severe this pick's disease and the compulsion to drink alcohol is. I do not want to go to her house all alone, its too upsetting. I am in a rural community that I didn't grow up in. I have very little support in this area. Actually, I have found there is very little support out there. My overall statement would be that people just don't get it. It makes going through this horror even worse by being all alone and having no one that even somewhat understands fronta lobe dementia or picks disease. I feel like being in assisted living or nursing home will kill her spirit so much that she will decline even more rapidly than I am already witnessing. Maybe I should allow her to come home. I have no idea and she is my best friend. I am devastated. If anyone has any advice I could sure use it.

thanks.

Constance, welcome to the message boards. You will find some of the support you so badly need here.

You have a lot to deal with, but it seems to me the immediate issue is where Mom should live. She cannot live alone. She has already proved that 1) by wandering and needing the police to find her and 2) eating so poorly that she created a serious medical condition for herself.

She needs to live in a supervised setting, but neither an ALF or a NH will allow her to drink alcohol to the extent she is currently doing. (Some allow a glass of red wine per night on doctor's orders, for example, but a steady diet of vodka will not fly.) You need to get her doctor involved on determining the safest place for her to live, and she may require detox first. I don't know if something like Antabuse might help her stay off the alcohol, or if the dementia would not allow her to pair the drug with the negative reaction to alcohol. She will not like any of this, but caregiving includes making tough decisions.

I would suggest you also call the Helpline at 1-800-272-3900 for suggestions and support.

Please keep us posted -- we care!

Hi Constance, thanks for your incredibly painful post. I'm a lot more self aware than most dementia patients, but I still have insights that I want to offer.

You do what you have to do, to keep her safe and well cared for. I can see where the time might come that I can't be safe outside of a supervised, locked facility. If Seroquel hadn't worked so well with me, I'd already be locked up somewhere.

I have more frontal lobe features than most with AD. There's even a fancy name, Alzheimer's Disease, Frontal Variant, or something like that. The way I am during the worst hour of my worst day, I should not be allowed to do what I want.

Perhaps it would help if, for a few minutes, you didn't think about what your mom wants, OK? Just think as a sober and compassionate judge, what is in her best interests? I'm certain you'll do whatever is right for your mom. Be sure and let me, all of us, know what you decided.

Constance, hi, and welcome to the boards.

I am going to copy your post onto the Caregiver forum. It is much more active than this one, and I want to be sure that plenty of people see your post and have the opportunity to respond. Some of our members have had to deal with the alcohol detox issue for their loved ones, and hopefully, they can tell you what worked for them. Although, if I recall correctly, their loved ones had AD, which is a very different disorder from FTD / Pick's!

The thread will have the same title as the one here.