I am living with my 83-yr-old mom, who has dementia.. I moved back home with her when my dad died after a 5-year-plus battle with vascular dementia. That was 6 years ago. She is taking Ocuvite multivitamins, Citracal calcium, Diovan, Amlodipine, Levothyroxine, Ranitidine, Lexapro, Mirtazapine, Namenda, Donepezil, and, most recently Resperidone was added. Each one made some improvement that wore off after a short while, but if she goes without any of them, things get worse. The Resperidone made a marked improvement, especially in personality and behavior, for about a month, but now she is back to her "Dr. Jekyll and Mr. Hyde" mood swings, with more time on the nasty, hateful, selfish, etc., etc., obsessive "I want to go home to be with my mother and father" (who died more than 30 and 40 years ago) pacing and trying all the doors for hours, and paranoid "The bad people will come and do terrible things to us" if I don't do what she wants ...side. We live in Southern California, and are in the midst of the worst, actually the first real heat wave of the year, so that may be a factor, too, I can't complain much about that, because I know the rest of the country has had it so much worse for much longer, and we have been spared until now, but I am terribly affected by the heat- weakness, digestive upset, difficulty sleeping, feeling generally sick, depressed and irritable and having a very short fuse, so I know that some of her current negative behavior is a reaction to the heat and my impatience, so I don't know if this current downturn is the Resperidone losing its effect or just the current miserable conditions, or both. I know she gets bored and needs stimulation, and that's part of what triggers her negative behavior, but there is not much that she can do any more, and if I try to help her, she gets mad or loses interest. The only things that help her mood is to go for a walk down the street and back, or go do any kind of shopping, or go to a movie, or just go drive around, or eating special foods like popsicles and ice cream, but we can't do those things all day or every day - too expensive and too fattening!. She doesn't seem to enjoy anything in the house except obsessive, repetitive folding and sorting of laundry, and asking me repetitive questions about the laundry items, then disagreeing with me whatever I answer and telling me to shut up if I try to explain my answer. On the other hand, she is so contrary and wants be the one in control, so that if I suggest going somewhere before she starts saying she has to go home, she often turns me down with, "I don't want to, I don't feel very good". She is very strong willed and I cannot get her to do anything if she doesn't want to or if it wasn't her idea in the first place, even something I know she enjoys! but there is not much she can do without my help, and she asks me to help her, but then she gets annoyed when I try to participate in whatever she is trying to do and gets verbally abusive, etc. etc. etc.
Wow, sorry, this has been quite a rant and I guess I have wandered away from my initial point in trying to provide more details. I have been reading your newsletter for months now, and it is the only one I can bear to read because the things posted, and the responses are so real and honest and empathetic, not trite and like standard answers from a textbook. This is my first post, and I guess I've been storing up a lot of stuff. My main question is about the coconut oil, and, if anyone has any suggestions for activities we can do at home Oh, she also has very poor vision from macular degeneration, and poor hearing, which adds to her frustration and my difficulty in coming up with something we can do for her stimulation and to make the days more enjoyable.(she has lost 2 sets of hearing aids and many pairs of reading glasses and sunglasses, and refused to get out of the car when we went to an eye doctor appointment - I was hoping to find some new help for the vision problems), Her behavior has been escalating, and my tolerance fading, and if the Respiridol has really just faded (and it's not the weather at all), then I am truly desperate for something that will help, like coconut oil, if what I read is true. If it is helpful, I need to know what brand or brands are recommended, how much to give and how, or any negative side effects, or conflicts with her current meds, etc, I really appreciate any input anyone can give me! Thanks for reading this .
ps....I tried an adult day health care, which was started at just a few hours two times a week, but after a couple of months of struggle to get her out of the car and into the center, I decided it was too stressful on her and no respite for me for the measly half hour or hour she would actually spend there if I could even get her in the door! And they were so nice to her and bent over backward to try to engage her, but she would only talk about how terrible they were!