Helping Those Who Care for Parkinson's Patients
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When I was with my Mom yesterday, she kept apologizing for being "so stupid" and was so frustrated that she couldn't remember what she was trying to do/how to do things. I tried to comfort her, and started telling her, "It's just the Parkinson's, Mom; it's part of the disease." Is this a good thing to tell her? Also, she gets really frightened that she's going to fall/we're going to drop her when we're helping her move from one chair/bed to another, so I told her that PD gives you the sensation of falling even when you're not. It seemed to reassure her a little. Here's a funny thing. Despite her confusion, she played Scrabble with me and probably would have won if I hadn't been lucky enough to play a 7 letter word on a "triple word" square. At first, she was telling me, "I don't remember how to play...I'm not sure if this is a word or not..." etc., but then I noticed that she made sure to place every word she made on a "double word" square! Not bad for an 83-year-old PD patient! Katydid (kew1957) |
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I say that to my dad all the time....especially in the middle of the night when he's experiencing anxiety or confusion. I also often say "You're not stupid, Mr. Parkinsons is." I think I know what you mean. A few months ago my dad and I had a long talk and I kept trying to tell him "you are not your disease. you're still you." If it were me, I hope I could find comfort in that distinction but who knows. |
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Pick: Thanks for your input. I wonder if Bob could respond, too, since he is going through PD himself? Katydid |
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| Bob's additional answers: I waited on one of the comments because I knew my son and daughter-in-law would be visiting over the last weekend. the last time they saw of me was at their wedding about two years ago. I had not been diagnosed with PD at that time but had several of the symptoms e.g. food cutting, drooling memory loss slight tremors, Poker face etc At that tme it was all attributable to my back (degenerative disk disease, scoliosis, "spondy", etc.) and...age (70s). Now they were witnessing the PD patient. in our frank discussions I speculated I probably would last three to five years. The response=="dad you are going to live a lot longer than that--you have a great attitude and you dont let it(PD + back) get you down". That simple remark has been enough to keep me thinking positively whenever I feel poorly like this a.m. when my blood pressure dropped to 81/33. As to sleep problems I had trouble sleeeping three days last week. I believe I am about to enter the hallucination phase because I kept seeing flashing lights and dark spots on our bedroom walls. My caretaker wife deals with this by listening to what I have to say,agreeing it is PD related and then dropping the topic until I want to tell her about any new episodes. I really think she has taken the right path--be a listener, but don't try to "cure" the problem or dwell on the topic. Finally, I would like to comment on "professional caregivers". While I believe there are good ones avaiable they are hard to find especially in rural areas. I had an opportunity to interview with Veteran's Administration caregivers as well as those at a state operated care facility in Texas and got the impression that as soon as a patient exhibits or threatens violent behavior you are dumpped back on the family. Since in one of my dreams I almost choked my wife I suspect they would kick me out quickly. |
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Just wanted to say thanks, Bob, for your input. I will remember what you said when I talk with my mom. I'm glad your son and daughter-in-law got to see you, and that their visit did you good. My mom really perked up last fall when her younger brother came to see her. She did really well for a couple of months after his visit. Regarding what you said about "entering the hallucination phase" - check your meds. We took my mom off of Amantadine and her delusions were gone within a week. The doctor also cut back on her Mirapex (1/2 tab instead of a whole one 3 times/day) and she seems less confused now, according to my brothers. I haven't seen her in a couple of weeks and my four brothers have been taking turns caring for her. It will be interesting to hear from them at our next family meeting. Take care, Bob, and everyone else at the forum. Have to add a word of thanks to Annwood again, too. I'm so glad you're keeping us informed of your journey and continuing to share your experiences and knowledge with us. Good for you on your plans to take care of yourself (i.e., the face lift) which you mentioned in a different post. Go for it! Katydid |
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| Katydid: Thanks for the advice on cuttting back on meds (Mirapex) to avoid hallucinations. Intrerestingly enough my neuro doubled my dose to 1 mg to eliminate RLS which was active during the nightime hours. I will monitor the increased dosage and its affect on both symptoms. Bob |
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| I know my grandma is always saying "I dont know why I do that " or "I feel so stupid" And i say "its just the parkinsons's grandma" that seems to reassure her at times that its really not "her" its the disease. |
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| My Dad is not comfortable talking, even with family, because he feels he sounds "stupid" and "no one can understand anyway." I encourage him to talk and if he has to repeat something a couple times, so what. |