My father who is 86 years old and currently has Multiple Myeloma is very active and doing fine. I have been taking him to the doctors and doing all his financials and meds for several years. My Dad lives with his brother who is 79. That is where the story starts.
What has happened through the years is that my Uncle has become very fragile and pretty much a hypochondriac. He dwells over all his problems and has become his own Doctor. He suffers from severe hearing loss, bone pain and most recently has been diagnosed with Parkinsons disease.
A month ago he decided to play Doctor and decided on his own to stop taking his Carbidopa Levopda . He had a very bad reaction and if I had not come by to visit my Dad my Uncle would have died. We took him to the ER and he was hospitalized for 5 days. During those 5 days he experienced some drastic hallucinations and confusion. He recovered after 4 days and was sent home.
The issue I am experiencing is that his Neurologist feels that he should be in an Assisted Living situation where someone can make sure he is taking his meds properly. I am putting his meds out every week and Dad is making sure that he takes only what I put out. The concern here is that my Dad who is 86 is like the blind leading the blind. My Dad is a great guy but he is so into his own thing with all his projects that his focus is limited when it comes to my Uncle.
My Uncle, who really never held a job for any length of time or has ever paid for any groceries or utilities, does not share the sentiment about helping my
Dad out with anything financially. When I mentioned about the Assisted Living to my Uncle, he was not pleased. My Uncle does not have the funds for
Assisted Living or for paying for home care for any length of time. I realized that but I simply wanted my Uncle to start thinking about the future since my Dad is 86. I do not have plans or wish to have my Uncle move in with my wife and I, since that would greatly impact our lives beyond belief.
I am uncertain on what is the best approach in handling my Uncle and Dad. My sister goes to the house once a week to help clean, but other than that, I am on my own to make sure my Dad is properly taken care of and my Uncle stays out of harms way. I sometimes question my Dads judgment at times, but overall, he is rather dependable, for now.
I am really conflicted because I want whats best for my Dad and want him to have a quality life, but my Uncle seems to be a challenge that I have not yet been able to resolve. My Uncles Parkinsons will progress with Dementia and in hand leave my Dad with a challenge that is really unfair for him in his later years. What do I do?
Good luck it is difficult isn't it.
With this disease your uncle must be monitered to be sure he takes his meds when he is supposed to.
As the disease progresses he will get weaker unless he has a regular exercise program or a PT who can come in. He will probably have cognition issues also and should be on depression meds.
Area on Aging in your area can be of immense help and their services are free. We have a volunteer who comes in once a week to visit with my husband who is now very very quiet and does not make conversation even with me.
Area on aging can provide equipment like walkers, lift chairs, potty chairs etc. if the need arises.
If there is a support group for PD and their caregivers that would be great for you to attend. We started our own group and it meets here twice a month, one meeting for caregivers and folks with PD and the other meeting is for caregivers.
Does your uncle see a doctor for his other medical issues, or only the neurologist? I wonder if you need a different neurologist to confirm the Parkinson diagnosis; my understanding of carbidopa-levodopa is that it treats symptoms, and that going without would mean his symptoms are not controlled, but that wouldn’t be life-threatening in itself. I’m wondering what else might have caused him to go to the ER and be hospitalized for 5 days. Was he dehydrated?
In Assisted Living, he might have caretakers who can help him get the right dosages and schedule for the Parkinsons, which can take time to observe and experiment until the best scheme is found. This would be really hard for your dad to do. Since your uncle is newly diagnosed and also not able to make good observations about his own reactions to the meds, it requires a caregiver who sees him throughout the day and evening. Parkinson’s people respond differently from one patient to the next, and that’s why it gets complicated. Since no one is at home to do this with him, AL or the right skilled nursing just until his meds routine gets established does make sense. I hope someone can point you to getting this help for him, affordably.
Once he understands that his meds/meals/hydration/exercise/sleep all need to be regulated, he may see that he needs help and will be willing to look ahead with you about his future living arrangement.
Yours is a complicated situation; the brothers are fortunate to have you care about them and check on them, and I wish you good luck.
For the longest time I attempted to overlook my Uncles situation. I felt it unfair to have to deal with my Uncle when in fact I wanted only to deal with my Dad. It bothers me a bit that my Uncle is taking my emotional well being away from my Dad. I guess this is where the chips fall. I cannot let my Uncle wither away because he is taking time away from Dad.
I really want to thank everyone again.
Back in the 60s, my Gmothers sister was living with my grandparents. When y GF retired he toldthe sister she would need to go into a home. My GM and GF were having their own health problems and with the sister having broke a hip, there was no one to take care of her. They lived in a two story and the bathroom was upstairs.
If ur uncle was able to help ur Dad would be one thing. Your peace of mind is more important.
I have never heard of a neurologist saying that it doesn't matter if a person with PD takes levadopa. My husband and every other person with PD that we know personally has been put on levadopa after a year. One person we know waited two years before he started and he saw quite an improvement in his symptoms once he started taking it. It does not improve tremors and it can cause diskenisia, involuntary movements. It depends on how each person responds to the meds.
Most PD folks walk with a shuffle. They can tire easily especially if their med runs it course. That is why it is so important that the doses are spread out and taken on time, an hour before a meal.
As the disease progresses his meds will have to be increased.
Most people with PD are depressed because of the effects and disabilities of the disease itself. Many of them get cognitive issues.
My husband has all of these problems to deal with. He sees his Neurologist every six months unless there is an issue. IF the meds are not regulated they can get very weak and can't function well.
He seems to be taking his meds at morning, noon and evening on a regular basis and he seems to have become stable. The only thing is that he cannot seem to put on weight. He is 5' 3' and weighs 111 Lbs. His Doc said that he is still recovering from being hospitalized. I know he is eating but I think the calorie intake is not much. We will have to keep an eye on it for the next 6 months.
Thank you so much for your feedback.
have you considered having Dad but not uncle move in with you or both go to AL.
It is really down to what Dad wants to do, while he has capacity it is his decision.
A nutritionalist can provide guidance on a helpful diet.