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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?

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If you "eliminate the middle man" you will be responsible for payroll taxes, social sec taxes, workman's comp, etc.
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It is not the taste of the antibiotics that is the problem it is the fact that good bacteria are killed by the antibiotics as well as bad ones allowing the newly introduced bad ones in new food to run riot. The balance is upset and it can take many months if ever to restore that balance is restored.
A nutritionalist can provide guidance on a helpful diet.
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Antibiotics can leave a horrible taste in the mouth. I've been told it takes a while to get rid of the taste after the antibiotics stop. Try Insure or Boost for calores.
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At 86 any hospitalization is a big deal and takes a long time for complete recovery, think many months. If he had a lot of antibiotics he may not fancy a lot of food especially if he has to cook it himself.
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.
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SaraKay - I think his Doc was saying that sometimes that Levadopa may not help some PD patients. But he did ask me how he was when he decided to stop taking the Levadopa. I said he was not good and showed great regression - which answers his questions and mine.

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.
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Padre,
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.
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Dehydration is why my Mom is with me for now. This is serious. He is not eating or drinking. Dehydration will effect cognitive, too. When ur the age ur Dad and Uncle are, the brain no longer tells the body that its hungry or thirsty. Throw in Dementia and they don't remember if they did or not.

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.
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I really appreciate everyone's feedback. This has been very helpful. To answer a few questions, my Uncle is seeing a GP in addition to his Neurologist. When he was hospitalized he was in fact severely dehydrated and suffered Acute Kidney Injury. This is my fear about him is that he seems to play his own Doctor and likes to overlook the advice of his Doctors. I have put my foot down with this and put the fear of God into him but it is not a sure thing with him.

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.
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Sorry, didn't read all the responses, eyes are tired. Your father is too old to take care of ur Uncle. Next time ur Uncle is in the hospital, have him evaluated there or in rehab. Explain ur situation. No one to really take care of him. This is the best way to get them on medicaid. U have enough with ur Dad.
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Dad probably wants to have his brother at home for as long as possible...and by the time something else happens or it just gets bad enough that it's not possible, if he has Medicaid, it would cover skilled nursing care rather than assisted living. If he has Medicaid, there might be a community waiver option that would offer some home health supervision and assistance. Check with your local Area Agency on Aging.
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I have to comment on a word you used in your last paragraph,"Conflicted".To me ,"Conflicted:, is like running into a brick wall. We know the answer to our problem but are afraid to act on it! I'm going through that now with my wife and I know what to do, but I don't want to do it.
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Sarakay gave you excellent info on Parkinsons Disease, and her comments were helpful to me too. I know you are asking more for information on how to handle the living arrangements and financials looking ahead, and wanting a good life for your dad, but I’d like to add what I’ve learned with my husband’s PD, diagnosed ten years ago.
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.
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Sarakay I really appreciate your story. My Uncle's meds are 100/25. He is really slow in reacting and has a hard time to speak - at times. He does not like to use his walker so he uses a cane and shuffles around the house. He is one fall away from an injury. You know what is interesting about the depression meds, is that his Doctor took away his anti depression meds because he figures less medicine for my Uncle to tamper with and possibly cause more issues. I think you are correct about the hallucination being caused by the medicine. He has not had any issues since he has been on his meds on a regular basis. Also, when I asked his Neurologist if he thinks Carbidopa Levopda is helping he said it may not since some patients do not respond to it. Who knows - I am not even going to try that approach. Thanks again.
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My husband has PD and has had it for at least 6 years. he is 79 and I am his caregiver. He sees his neurologist every six months. He is on 200/50 Sinamet 4 times a day. Many people with PD have "off" times when they can hardly move. I think his hallucinations in the hospital were caused by the meds.
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.
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Thank you NeeSey. I am researching the Office of Aging in our area to see what they offer. I am hoping that they might provide some advice on how to handle my situation as my Dad gets older and my Uncle's Parkinson's progresses. I suppose their savings might be factor in proceeding but at least it is good to research this. Thank you so much.
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My elderly mother and sister are in a similar situation. My local county Office for Aging and Disabled helped me to get them both on Medicaid based on their combined Soc. Sec. Income. Once that had been approved, I enrolled both of them in the NHTD program through our local nursing home. It's a nursing home transition program that lets them continue to live in their own home and due to their situation they get 24/7 Homecare aides (not nursing) at no cost. Since I'm the only other family member, I've agreed to be their backup in case a shift isn't filled due to an aide calling off sick, leaving the job, etc. until the nursing home fills that slot. The NHTD program Medicaid does not require a 5 year look back for finances; only a one year look back. I did have to cash in my mother's life insurance and apply most of it to a preplanned funeral to keep their assets within the required limits. They didn't count the house and my 86 yr old mom with Alzheimer's had quit driving and sold her car several years earlier. My handicapped 65 year old sister attends a social daycare program 8 to 4 Mon. through Fri. for no cost which she enjoys. Mom chose not to go to that but she has her Homecare aide with her all day and a different one all night. Since I'm the only other family member and have my own health problems, this NHTD program is a HUGE lifesaver for me. I hope this helps and I wish you the best of luck.
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Thank you so much for your feedback. He has no children and has never married. He has spent the majority of his life with my Dad. I know his condition is serious and cannot be taken lightly. I fear something will happen to my Dad and then I am left with a situation with my Uncle. He has a modest savings (yes he collects SS) and I suppose food stamps is an option. Do you know if food stamps looks at income or savings? I guess I need to research that. Also, since he has been home bound for the majority of his life, living anywhere other than my Dad's home would be a real challenge. Thank you Veronica91 and Oregongirl so much for replying.
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Boy this is a tough one. Your uncle never worked for long, so does he get ANY Soc Sec? If he does then he has medicare. I believe Home Health would collect payment from medicare. But, I have to agree, it is complicated and you should visit your local aging care office. I am almost certain your Uncle IS I am sure eligible for food stamps and State health care. That too, would help with Home Health care. But, that is usually only one day a week visiting nurse. Quite a problem... That would also assist paying for part of the groceries. There is also assistance for phone and utilities. You would have to help him fill out the paperwork as it would have to be a percentage of the entire utility bill, phone bill etc.
Good luck it is difficult isn't it.
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Does your uncle have children? If so they should be taking responsibility for him. it sounds as though Dad owns the home and is living there for free. That of course is up to Dad. Would Dad be lonely without him. the incident you describe illustrates that uncle is not safe living alone with Dad and although he appears to be a hyperchrondiac he does have significant heath issues. a good place to start would be your local aging care office.
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