From your profile: "I'm the wife of my "patient's" brother. I volunteered to move in and care for my brother-in-law when a series of health crisis effected his wife. She went to live with her brother's family to be taken care of. I've had experience with my mother when she needed care while suffering with Alzheimer's dementia. My brother-in-law suffers with Parkinson's with Lewy Body Dementia. It is a 24 hour a day job to "watch out" for him. I don't have any professional experience to handle this. I've been here for 6 months with no end in sight. I need help and advice."
24 hours a day? Are you getting enough sleep? Sleep deprivation is a form of torture, you know.
What is your H doing for his brother? Did he move in, too?
It sounds like this is too much for you. Time for another solution?
Lewy Body dementia is a parkinsonism disease. It is not Parkinson's. First of all, he needs the best diagnosis that he can get. You really cannot determine with certainty what disease he has until autopsy. Regardless, these Parkinsonism diseases, which are rare, are enormously challenging for the caregiver. Those that have this disease become increasingly disabled over time. They do not necessarily become violent or cause you to be at risk. They just become increasingly needy as their neurological systems fail them. My husband died of a related disease and by the end he was totally bedridden, needing total care for everything. Are you using hospice? Since Lewy Body is considered to be a terminal illness, your brother-in-law qualifies for hospice even though he might not be near death. Some people with these diseases stay in hospice for a couple of years. My husband was on hospice for 7 months. There are associations devoted to Lewy Body that you should access for help. I found the best thing for me was the support of others who are dealing with similar illnesses. People could give me advice about equipment, about health care, etc etc. based upon the fact that they were dealing with the same illness. Good luck to you!
Turn in your notice and quit. There is absolutely no way you can go on doing a professional’s job taking care of a patient with Lewy body and Parkinson’s. Your family is going to have to face the fact that BIL belongs in a facility where he can get 24/7 care by trained caregivers. This isn’t even safe for BIL. You volunteered, so you can certainly unvolunteer. Very sorry, but you need to take care of yourself now.
Many of us have dealt with the one or the other. Do you have a question for us? If you have no specific question go to the top line where it says AgingCare, go over to the magnifying glass, press on it for search, and look up questions with the headings of either topic. Just yesterday there were threads about Lewy's. And welcome!
I am with Fawnby here. This man needs to be in LTC or Memory Care if he can afford it. Taking care of a man is different than caring for a woman. And a BIL. God love you. The only man I would care for is my DH.
Now he has LB he may get aggressive and even violent. Again, time to tell his family they are going to have to find another option. I hope u were being paid.
My mom had Parkinson’s disease and dementia but not Lewy Body. Mom lived to be 95. She suffered horribly as the disease progressed.
Mom’s brother also had Parkinson’s disease. He lived to be 96. He suffered horribly the last couple of years of his life.
My uncle lost use of his hands. He could no longer feed himself, had trouble swallowing, etc. When he could no longer live alone, his children placed him in a skilled nursing facility.
Your profile says that you volunteered to help and that you have been there for six months and need help to learn how to care for him.
I feel that the best advice that I can offer to you is to have him placed in a facility. This job is too much work for you to handle alone.
I realize that you are a kind person to offer your help but sometimes it is best to allow a person to be cared for by an entire staff who have experience in this situation.
LindaPlev: Perhaps your BIL requires managed care facility living due to the fact that he unfortunately suffers from lewy body dementia and parkinson's. You are ONE individual as opposed to many people in a facility setting.
I don’t know how you volunteered for that position and it is never just watch out for him as you describe in your profile. And as it is with progressive diseases, it gets worse. I don’t know much about dementia but I believe i read about Lewy Body and it is worse than others, i.e. Alzheimer. My husband has Parkinson’s, no dementia, so his motor skills are getting worse and worse. And rather quickly, plus other symptoms and diseases, as people with PD are not somehow immune or perhaps more susceptible as it is his case. So realize now you cannot do it alone.
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I've had experience with my mother when she needed care while suffering with Alzheimer's dementia. My brother-in-law suffers with Parkinson's with Lewy Body Dementia. It is a 24 hour a day job to "watch out" for him.
I don't have any professional experience to handle this. I've been here for 6 months with no end in sight. I need help and advice."
24 hours a day? Are you getting enough sleep? Sleep deprivation is a form of torture, you know.
What is your H doing for his brother? Did he move in, too?
It sounds like this is too much for you. Time for another solution?
Prayers to you. 😘
Do you have a question for us?
If you have no specific question go to the top line where it says AgingCare, go over to the magnifying glass, press on it for search, and look up questions with the headings of either topic. Just yesterday there were threads about Lewy's.
And welcome!
Now he has LB he may get aggressive and even violent. Again, time to tell his family they are going to have to find another option. I hope u were being paid.
Mom’s brother also had Parkinson’s disease. He lived to be 96. He suffered horribly the last couple of years of his life.
My uncle lost use of his hands. He could no longer feed himself, had trouble swallowing, etc. When he could no longer live alone, his children placed him in a skilled nursing facility.
Your profile says that you volunteered to help and that you have been there for six months and need help to learn how to care for him.
I feel that the best advice that I can offer to you is to have him placed in a facility. This job is too much work for you to handle alone.
I realize that you are a kind person to offer your help but sometimes it is best to allow a person to be cared for by an entire staff who have experience in this situation.
Best wishes to you.
And as it is with progressive diseases, it gets worse.
I don’t know much about dementia but I believe i read about Lewy Body and it is worse than others, i.e. Alzheimer.
My husband has Parkinson’s, no dementia, so his motor skills are getting worse and worse. And rather quickly, plus other symptoms and diseases, as people with PD are not somehow immune or perhaps more susceptible as it is his case.
So realize now you cannot do it alone.
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