PD Dementia

pk,
When my mom-in-law was suffering from hallucinations we found that they were sometimes due to her medications... It was difficult for her because she would often feel sad and hurt because of imagined slights, missing items (someone stole them?) and unsubstantiated fears that we were going to put her in a nursing home. She also had horrible nightmares and these too were side effects from the meds. We switched some of them around and this helped some, but some of the problem was from the PD itself.

We couldn't remove all of the offending meds because she needed them for pain relief and sleep. (She had several other health problems.) We had her in our home during the hospice part of her end of life and it was very trying at times, I have to say. In her better moments she was able to understand that we were trying to help her and that she was safe but many times at night when she had pain and anxiety about being 'frozen' she would call out for us to come and move her. My son (who was 24 at the time) spent the better part of two years sleeping on the floor at her bedside so he could move her every 15 minutes all night long.

In our home we had my husband, myself, my adult son and college age daughter at home and we all took turns helping her with her daily activities. She had health aids who came in each morning to do her bed bath and help with her daily grooming. We pretty much spoiled her as much as possible. She spent the last months of her life living on instant breakfast made with icecream and half and half (because of so much weight lost), green grapes, snickers and potato chips. (That was what she asked for!) We made an attempt at meals every day and offered her whatever we were eating. She picked and chose what she wanted and we left it at that. We had arguments with some of her care nurses about nutrition and rehab but we finally got the point across that she was terminal and some respect should be given to her need for comfort and happiness.

The books I found did not help me much. Every patient with PD is different and so are their needs. I know that when her anxiety about imagined things got out of hand and all my explaining didn't work my husband stepped in and kind of 'yelled' at her. He explained that we loved her and we would always love her and we weren't taking her things. He also told her that he was the boss now (dad had passed away a few months previously) and he was making the decisions. She was going to stay with us and like it! She had become almost child like in her manner, petulant and whining, so she accepted his boss-like attitude and that finally got thru to her.

For my part, I tried to balance my treatment of her between treating her like a child (when she was acting that way) and talking to her like an adult when she was in her better moods. I wasn't patronizing, just very firm about how much we could help.

Is your mom in your home? Do you have health aids who are helping out? Do you have family members who are old enough to understand the need to share her care responsibilities? I'll help you all I can with what is coming but it's different for all. Just take it one day at a time and do the best you can. Oh, and one thing that helped... When mom's depression wasn't responding to the meds so well we started renting funny movies for the TV in her room. Anything from old 1940's comedies to things from current actors like BIG by Tom Hanks. She liked being able to watch part of a movie and stop to rest when she felt tired, then resume later. Hope this helps.