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My dad hates the fact that he needs help, and I try very hard to be understanding of it all. He is used to being very independent, but now lives in an Assisted Living Facility and has had a lot of problems. He is very weak in his legs and falls a lot. He now has aides during the day to help him and the assisted living handles his medications. They now have said he should not use a rolling walker because he pushes it too far from front of him and leans halfway over because his walking is not good. He is now using a wheelchair and a regular walker, which he is angry about. I do sympathize with him, and I want to try and help him live a good life, but I also have been the one getting calls in the middle of the night or going to the hospital once a week. Even his doctors don't feel he is safe independently.



He has not been diagnosed with dementia, but I do see beginning signs. I don't want to make him feel like an invalid or take away his sense of independence, but I also want him safe and he needs to understand how he is acting. Instead of enjoying life, he just hates everything and attacks everyone.

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Has he been assessed for Lewy Body Syndrome? This form of dementia is very common in those who have PD. Also, maybe time to request meds for his agitation. With dementia (or depression) people are less able to bring themselves into a calm state because their cognitive changes rob them of this ability.
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Kmi7688 May 2022
I have been talking to the doctors about it, and they are going through the tests and have adjusted his meds. He is just very stubborn, has always been. He never went to the doctor unless he absolutely had to. Instead of resting when he had the flu or a bad cold, he would push himself until he ended up with pneumonia. His parents always instilled in him that it was bad to rely on others. It also does not help that the ALF he is in is the one his mother was in before she passed. It is one of the better facilities here, which is why he is in this one.
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Nobody likes to accept their limitations. But his safety has to be the highest priority. He's in a safe place and is going to have deal with reality, whether he accepts it or not. Maybe he could benefit from some meds to help him not be so hateful and attacking everyone.
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Kimi
About the walker issue. Does your dad receive physical or occupational therapy? That might help. My aunt had Parkinson’s for years. She did the Rock Steady program for Parkinson’s and it was helpful.
It will be difficult for drugs to “change” your dads personality but might take the edge off.
Would he be able to see a talk therapist? He has a lot to manage. I’m sorry.
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You don't see the beginning signs of dementia? Denial in spite of the evidence is the first sign of dementia. It's called ANOSOGNOSIA.
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There are special walkers for those with Parkinson's. It was explained to me when a person with Parkinsons falls, they fall backwards not forward. This special walker is weighted somehow that helps prevent this.

Maybe Dads doctor needs to have a good talk with him. That by allowing himself to fall, he could break a hip, his femur and cause a whole series of other problems which would mean care in a NH. ALs are limited in the care they can give. Maybe time for a wheelchair.

I agree that maybe getting an order from his doctor for "in home" therapy would be a good idea. The therapist can then evaluate him. Rollators are not good for everyone.
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KMI,
Nobody can give you right or wrong answer. PD is complicated and frustrating for family members/ caregivers.
Almost weekly, as it is in case of my husband with advancing PD, things change, but sometimes it gets better.
My husband is not falling, but realistically I know it could happen, no matter what. He uses walker and sometimes does the same as your Dad, especially walking from different surface like carpet to hardwood and vice versa, there is methods to overcome that, ask PT as your father situation could be different. One thing about PD almost everybody is different, is it due to meds, physical or mental state, nobody gives you right answer, if any at all. My husband is working on prevention of falls and muscle building with therapist and results are sometimes amazing, he can walk on his own at times, does treadmill or stationery bike, he works hard on keeping his muscles strong, he is encouraged by different professionals to be as independent as possible.
His neurologist adjusts his meds often because as much as they help, wrong dosage or timing is also a factor that works against improvement.
Sorry to hear your father is stubborn, but try to understand his independence is important to him. I am strong proponent of having anything resembling normal life. I, as much as I try to understand this disease, cannot imagine most of it, there is no trajectory or much help with later stages of it and very little has been done to help people understand advanced PD as experts say many people do not reach last stage as they die of falls or aspiration, very sad but true for about 70%.
I am optimistic person believing my husband can stay strong, but being pragmatic as well, seeing set backs, I have to accept how fast this disease could progress.
My husband joined a PD group in this area, he is on waiting list for going to daily sessions to start with one day and maybe increasing to 3 days weekly, I think it will be helpful for him to socialize and have activities, exercises geared towards some of symptoms, engaging him for five hours.
The more he gets involved socially etc. the better his quality of life is, then again week after could be too much pain and if strong meds are required he will be sleeping mostly. Like I said unpredictable and frustrating.
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I am sorry you and your father are going through this. My motherinlaw struggled with PD for many years. She died last year at 96. She had a rollator:rolling walker which she liked because it had a seat. It became unsafe for her to use it- like you described your dad, she would lean way forward on it and it would get going pretty fast and she’d have trouble stopping. It was a fall risk. So on the advice of physical therapists, she switched to a traditional aluminum walker (with tennis balls on the bottom of the legs) but she often asked to have the rolling walker back. She lived with me and my husband and I did a lot of the Caregving. She grew increasingly frustrated and unhappy with her limitations; she had falls, usually when she got up by herself and lost her balance or fell due to weakness in her legs. It got to where we urged her not to get up by herself . It wasn’t safe and it caused a lot of tension between us. So even though I don’t have any good advice for you, I just want you to know you’re not alone, others like me have been where you are and know it isn’t easy. You are obviously a caring daughter, who wants safety for your dad and to respect his dignity and his wishes which can be a fine line to walk. Keep posting, it helps to express your feelings and receive support from others. All the best to you and your dad.
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