Helping Those Who Care for Parkinson's Patients
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Hi Everyone, I've just joined and I hope someone can provide some advice. My dad developed PD after my mom unexpectedly passed away. Since then he's been living with my brother as I live ex-US. It's progressively getting harder for my brother to take care of him. My dad is enrolled in an adult day care centre 3x per week...which is great. But when he's at home, he's very lazy and if my brother doesn't come home after work to make my dad a meal, he won't eat. And now, he's starting to refuse his medication (!). Argh! I try to help from where I'm at but there's not much I can do except be an ear for my brother. My brother tells me that Dad doesn't remeber how to use the microwave or the TV remote anymore. The thing that confuses me is that his neuro says Dad's fine and not getting worse and his mini-mental score is quite reasonable for someone who's 80. So, I'm not sure if Dad's just being lazy at home or if it's his PD that causeing his behaviour. No doubt he depressed and I believe he's on anti-depressants (alot that'll do if he doesn't take it). Any advice? Is it time to move him to a home? Tx, Caring4Dad |
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Don't downplay your participation -- a caring ear is all I get from my brother who lives at a distance but it means a lot sometimes! We see much of what you describe in my mother who will be 81 in March and lives with my husband and I. The mental health changes that are brought about by Parkinson's are many and could account for a lot of what you say. He very well could be depressed and it would be very common with Parkies. There is also a lack of motivation (not to be confused with laziness), a lack of planning abilities, an inability to learn new behaviors (the microwave, etc.) -- those things can come about in non-Parkinson's patients and are more likely some developing dementia (Parkinson's related or not). There is a dementia (Lewy Body Disease) that some Parkinson's patients develop but there are also many other kinds of dementia -- I'm not sure it's necessary to differentiate at this time though some meds are being developed specific to a type of dementia. My mother can WOW! her neuro with her mental status scores -- and forget who I am in the next minute! They all seem to be able to pull themselves together for these tests -- she'll also trot off and leave us in her dust if her disease is cooperating, and then need help getting to the bathroom the next minute. Very common in Parkinson's patients. The question regarding a home placement is a personal choice -- I think most of us here are caring for a Parkinson's patient at home, but I don't disagree that at some point my mother's care may be more than we can physically manage and we'll have no choice. With the right doctors, social workers, etc., some patients move willingly into an assisted living situation or even a nursing home and do well -- others give up and die. Bottom line -- you and your brother should educate yourselves as much as you can on the disease, and medications might help your father if it is indeed depression -- the right medications can even help make him more cooperative though I don't promise. If his behaviors are not normal behavior, he definitely needs to be evaluated by a doctor and your brother needs to accompany him and have some input with the doctor. This disease fights dirty and, unfortunately, it always wins in the end. But there are always some small victories along the way. Stay with us -- read as much as you can -- check back with questions and welcome! |
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There are often personality changes with PD, and that can include being uncooperative about meds, meals, just about anything. Some PD medications actually worsen or cause confusion. My father has lost the ability to work the remote, use the answer machine, turn on his radio, etc. He's an engineer, so it's hard to see this type of change in him. If your family can afford it, a home health aide may be an alternative to a nursing home, at least for a while. I'm not too enthusiastic about assisted living. If the person with PD wants to stay in their apartment all day and not interact with anyone, then they really don't get much help with their daily activities. Many people in assisted living end up having a health aide (hired privately) in addition. If your brother hasn't yet gotten help from the city or county Office on Ageing, he should check that out. Usually they will provide a free social worker who will help navigate the maze of available services. |
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| Thanks everyone! It's a huge help and it's given some other avenues to explore! |
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I am not sure you will see this post I know I am a little late responding but this is definitly a post that is close to me. I too cared for my Dad like your brother is and I had siblings that lived closed by to me. They never supported Dad or helped in any way. YOU are supporting and helping because you are an outlet for your brother to be able to vent. Just being there for him and listening to him means so much to him I am sure. That would have made all the difference for me if my siblings would have at least called me and said "how are you holding up"... Means a lot. So you are helping more than you know. Patti |