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Mostly Independent
Your loved one may not require home care or assisted living services at this time. However, continue to monitor their condition for changes and consider occasional in-home care services for help as needed.
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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!
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?
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.
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.
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!
Of course, it changes in the structure and chemistry of the brain can cause memory and thinking problems in Parkinson’s. Alpha-synuclein, a protein that is central to Parkinson’s, forms sticky clumps, called Lewy bodies, that can disrupt normal brain functioning and lead to dementia. Because of this, the term ‘Lewy body dementia (LBD)’ may sometimes be used. Lewy body dementia includes two different types of related dementias, distinguished by which symptoms start when: Parkinson’s disease dementia (PDD) – diagnosed when a person living with PD experiences significant cognitive decline after a year or more of motor symptoms (most typically after many years of experiencing motor symptoms). Dementia with Lewy Bodies (DLB) – diagnosed when cognitive decline is the earliest symptom, or when cognitive decline and motor symptoms begin and progress together. Matilda
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.
My brother has cbs, another form of parkinsons, his memory is fine but his balance is completely off and he can’t use his hands, and his arm shake constantly .So I feed him, take him to the bathroom, wash him, it’s so terrible, he can’t even change the channel on the tv. Very challenging. Plus he lives with my 96 year old mother who has dementia and I take care of her too. He is only 67, and a good mind, I could never put him in facility yet.
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.
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.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
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'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. 😘
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.
Lewy body dementia includes two different types of related dementias, distinguished by which symptoms start when:
Parkinson’s disease dementia (PDD) – diagnosed when a person living with PD experiences significant cognitive decline after a year or more of motor symptoms (most typically after many years of experiencing motor symptoms).
Dementia with Lewy Bodies (DLB) – diagnosed when cognitive decline is the earliest symptom, or when cognitive decline and motor symptoms begin and progress together.
Matilda
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.