Helping Those Who Care for Parkinson's Patients
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My mom can't walk more than 5 or 6 feet without losing her balance. Her falls are getting more numerous by the day. She often can't get from a sitting position alone. During the night she barely walk with assistance. She is on oxygen which means she easily gets tangled in the tubing. She won't use her walker unless we make her & she resents that. We've tried explaining our concerns about her safety but she says we're trying to make her a prisoner. When she was hospitalized the last time they documented all her cuts, scrapes & bruises & mom said they asked her if they were all caused by falls. She has a motorized chair but can't use it because she runs over furniture & into walls. Has anyone had to deal with a situation where the Parkinson's patient would fall every time they got up if they didn't have assistance? My sister & I are at our wit's end trying to do everything possible to make sure we're available to help mom while she seems intent on showing us that she can & will do what she wants. |
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Yes, as I have said in the past my husband would fall many times a day and often with someone sitting right there. It got to the point that I had to strap him into his chair and turn the fastener to the back so he could not get to it. The falls are inevitable but it makes you feel terrible when they happen. In your mother's case it will do no good to explain things to her - you just have to go ahead and do what needs to be done. Our neurologist explained that at that point the patient is operating on pure instinct and is no longer capable of thinking through the consequences of any action. She is now like a two year old, spiteful child and nothing will change that. Don't waste your breath. Give her very simple explanations and even those may not register. She may tell you that she understands but probably doesn't and if she does she will forget it in 10 minutes. She is going to be angry, threatening and abusive - it just goes along with the dementia. It sounds to me like you need a sturdy walker at the very least and a bedside commode Have you checked into the alarms yet? I have a motorized chair and ramps in my basement. The chair may have 2 miles on it because my husband was not able to control it and it frightened him. More money wasted. I wish I had some answers for you but I don't. As hard as it may be you have to forge ahead and realize that you are never going to please her. Falls are going to happen no matter how careful you are. Try to remember that this is the disease and not your mother. |
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You're so kind, annwood. You keep saying it's like dealing with a two year old, I hear & understand & I'm truly trying to deal with her that way. I thought of that often yesterday & today but if she WERE two years old I'd have paddled her rear end for continuing to defy my instructions! I have no control over it but sister will never quit trying to explain everything in great detail & reason with mom. That coupled with the fact that sister explodes & acts childish herself keeps me constantly worried that I'm going to wind up having to deal with this alone & I know I can't do that. We have a sturdy walker & I'm going to try to take care of a bedside commode, alarm & bed rail this week. I'm also going to contact her neuro to see if one of her meds might be making some of her problems worse. She takes Elavil to help her sleep but she rarely sleeps more than an hour at a time. She talks in her sleep, is constantly moving around in the bed (her dyskinesia isn't bad) & has hallucinations that she remembers later. I was reading something on the internet earlier that indicated Elavil might cause those things & it certainly isn't helping her sleep. How did your husband react when you strapped him in the chair? What did you use for a strap? Mom will go into orbit but we may have to resort to that in order to do other things & have a little peace of mind. Thank you again for your advice & kindness. You give so much here. I hope you are making a life for yourself. You clearly deserve that. |
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Pts get refractory to almost all meds so the Elavil probably isn't helping with sleep. My husband was on Clonazapan and Serequel but finally reached a point where that wasn't working. While I know that many of the drugs can cause problems I also know that it is most likely progression of her PD and dementia. There just isn't any magic bullet out there. Like your mom my husband was up most of the night hunting squirrels, under the bed fixing the car and/or talking to invisible people. He generally slept in two hour increments. It was so exhausting. I used a gait belt to keep my husband in the chair. You can purchase one at any medical supply house but don't tell them that is what you are going to do with it. It is designed to help lift people and to steady them while they walk. Back in the dark ages we were allowed to restrain patients with one but not today. I thought it was interesting that the neuro unit used one on him all of the time. I don't have to tell you that she will hate it. Do what you have to do and make her as safe as possible. Since I don't know your family it sounds to me as if your sister is trying to work out some issues with your mom and isn't ready to accept that she has dementia and all that it entails. Thank you for your concern. I think that I am doing ok and I certainly stay very busy. Today I went to church, had lunch with a friend, wrote the newsletter for the rose society and cleaned the basement. As you can see I am a night owl but I now have the luxury of sleeping as late as I want in the morning. Life is good. This coming Saturday I am leaving for Egypt for two weeks - this is a lifelong dream of mine. If I find Omar Shariff I may stay but I won't marry him. I don't intend to be a caregiver again so if he so much as coughs I am out of there. Now who is delusional? I often wonder why, and if, I should stay on this forum. I do think it is a way to hold onto my husband and to work through my caregiving experiences. I have the knowledge that I gain here to serve as a caregiver advocate when I teach the nursing students. I question how effective and helpful I will be as time goes by and I hope all of you will let me know when I become full of hot air. |
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Annwood, as women, I think we are all full of hot air. Just kidding. I look forward to reading your posts. Lorraine |
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| I agree - we tend to be the more verbal of the two sexes. You know what I mean't. I just don't want to be giving advice when I get to far away from the actual experience. |
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Annwood, Yes I know you are sensitive to trying to meet the needs that are ever present in the PD world. I do not think you will ever forget the experience and may have more to share as you get away from the experience and give a different perspective than those in the trenches. Already, you can say that there is life after PD. Lorraine |
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| Annwood, I hope you're kidding!!! You're one of (if not the) gurus on this forum. Have fun in Egypt. Sounds exciting and glamourous. |
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| I read everything you say and it always helps me get through the tought times. Things were going along really well till this morning when again I was accused of having an army of men in my bedroom and sneaking around. He refuses to take his meds because he thinks I am poisoning him. This forum and your words are what get me through this. I would love to be going to Egypt, I would love to be going anywhere! If you do meet Omar, give him a kiss from all of us PD wives who need a hug. |
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| You are indeed a siren! During this past year I haven't seen any evidence of all those men with whom I was having affairs. Remember that is what we do with all of the spare time. Perhaps they were attracted to the circles under my eyes, accompanied by that vacant, sleep deprived stare and the hair that rarely got combed. |
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Don't forget no make-up, lucky to get a quick shower Lorraine |
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| On another note, what do you do when he won't take his meds cause he thinks I'm poisoning him? |
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annwood, please do not give another thought to leaving this forum. We need you! I hope your trip to Egypt was absolutely wonderful! |