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Re: Challenges you face when caring for someone with dementia

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I need advice on how to get my mother to the doctors to be checked for alzheimers or dementia.  She has significant memory issues but whenever we try to talk to her about going to the doctors because we are concerned about her she says there's nothing wrong with her and becomes very mean and storms off. 

 

Thank you.

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Re: Challenges you face when caring for someone with dementia

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Sarah, thank you for posting. I’ve heard of this program, and it sounds terrific. That link is broken, but I searched “The Unforgettables: A chorus for people with dementia with their family members and friends” and found lots of articles, including the Washington Post at:

https://www.washingtonpost.com/lifestyle/2018/12/27/this-choirs-features-singers-with-dementia/

Mary Mittelman, a research professor with the Center for Cognitive Neurology at New York University, started a choir called the Unforgettables Chorus in 2011 to study the effects of a choir on people with dementia and their family members. Her research found that participants with early- to middle-stage dementia had increased communication with their caregivers, as well as improved overall quality of life. Their family members and caregivers reported a boost in feelings of social support, communication and self-esteem.”

 

Bill has Parkinson’s with dementia and spinal stenosis. He and I have always said that life is a musical for us at home 🎼. We sing songs together 🎤 and dance 🕺🏼. The social benefit of a chorus would be great, but he says he doesn’t want to do that. Oh, well.

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Re: Challenges you face when caring for someone with dementia

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Hi -- I realized I never posted that article I promised on the benefit of a dmentia chorus. NOte this is really about specialized choruses -- ones in which people with specialized training have tailored it to the specialized needs of people living with dementia and their caregivers.   I could not figure out how to attach it.  But the article is published by Cambridge University Press.  Its available at https://www.cambridge.org/core.  Here is the citation. 

 

Mittelman, M., & Papayannopoulou, P. (2018). The Unforgettables: A chorus for people with dementia with their family members and friends. International Psychogeriatrics, 30(6), 779-789. doi:10.1017/S1041610217001867

Sarah Lenz Lock, AARP Expert Brain Health
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Re: Challenges you face when caring for someone with dementia

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@bw38618336  Dear Bengal -  thank you so much for sharing your thoughts.  Singing would only work if the person likes it!  And you are right.  There are very many other things and activities you can help a person with dementia engage in that can help them.  Person and family centered care is important to everyone but absolutely essential when you are caring for someone living with dementia.  You have to know what a person likes and doesn't like, wants or needs if you are going to be help the person with dementia.  Sometimes that isn't easy if they struggle with communicating or can't speak, but behaviors can often clue you in to what they don't like, even if their words fail them.  If they refuse to participate or they seem upset that can be a strong signal they don't like it.  The experience of frustration coming out as anger can be all too familiar to dementia caregivers!  But to your point that there are many things you can do  to improve the well-being of people living with dementia - I will mention a few.  I subscribe to the 5 pillars of brain heatlh to help people with dementia, their caregivers or anyone who wants to help maintain their minds stay sharp.   The 5 pillars are set forth below with examples  and suggestions. 

Screenshot (3).png 

Sarah Lenz Lock, AARP Expert Brain Health
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Re: Challenges you face when caring for someone with dementia

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Thank you, and I would think that would help a lot of people to relax. Somehow, I don't think it would calm him, though. We've always had a rule that I never sing. He sang professionally for a few years and was quite good. I, on the other hand, cannot even carry a tune. He has always found the sound of me trying to sing very offensive. Bad singing, from any source, has always really bothered him.

 

He is getting worse. His disease course is making his doctors reconsider his diagnosis.  They are doing a lot of new testing, thinking maybe mixed frontotemporal dementia, maybe something else. They just aren't sure anymore.  It's possible that he needs very different treatment. It will take time to find out.

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Singing might be very important - but just reading your posts I got the feeling that you are trying to force somone to something they don't, or can't do. There must be hundreds of things which would help with demtia, singing cannot be the only one. - I don't mean any harm by saying that. It's just I got that feeling when reading your post. Of course I might be totally wrong - I apoligize iif I am.

Bengal
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Re: Challenges you face when caring for someone with dementia

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@karent141049 wrote:

I do worry about future finances but I don't see any solutions. As for Medicaid, I looked at the rules online and we are caught in the middle where we will have too little to live on, or hire help on, but too much to qualify for Medicaid. It's kind of a catch-22 for older people especially, I think.

 

He is up every hour at night, but often naps some during the day. I try to grab a shower when he starts a nap so I will be sure to be finished before he wakes up. The future is uncertain but I try to focus on the now. And the rules could change, or a new agency could spring up  or something. I try to keep in mind that a negative future is not written in stone.


An eldercare attorney can help you look at those Medicaid rules and plan ahead. They are very complicated, but can be worked around. Worth it to pay for a consultation, or, to go a cheaper way, consult with a geriatric care manager. Yeah the great middle class gets squeezed. But between the area agencies on aging and the care manager/lawyer route, you can make sense of it. And there's a 5 year forgiveness period... 

Hooray for naps. Reminds me of having an infant. Will they nap for 5 minutes or an hour?? What to do?! Run around like a headless chicken!

 

I don't want to raise your anxiety, truly, and living in the NOW is awesome as an aspiration. KEY to mental health. And... maybe... when your anxiety revs up, use that energy to go beyond online research. WebMD is information, and not a doctor...

 

You rock, no question, and happy new year!

Jane

 

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Re: Challenges you face when caring for someone with dementia

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I think you rock, and a happy new year to you too. The elder care lawyer sounds like a good idea, as soon as our finances settle. There are several things up in the air right now, that the elder care lawyer could not effect but that could effect what an elder care lawyer could help us with.

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Re: Challenges you face when caring for someone with dementia

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@karent141049 wrote:

I do worry about future finances but I don't see any solutions. As for Medicaid, I looked at the rules online and we are caught in the middle where we will have too little to live on, or hire help on, but too much to qualify for Medicaid. It's kind of a catch-22 for older people especially, I think.

 

He is up every hour at night, but often naps some during the day. I try to grab a shower when he starts a nap so I will be sure to be finished before he wakes up. The future is uncertain but I try to focus on the now. And the rules could change, or a new agency could spring up  or something. I try to keep in mind that a negative future is not written in stone.


An eldercare lawyer can help you 


@karent141049 wrote:

I do worry about future finances but I don't see any solutions. As for Medicaid, I looked at the rules online and we are caught in the middle where we will have too little to live on, or hire help on, but too much to qualify for Medicaid. It's kind of a catch-22 for older people especially, I think.

 

He is up every hour at night, but often naps some during the day. I try to grab a shower when he starts a nap so I will be sure to be finished before he wakes up. The future is uncertain but I try to focus on the now. And the rules could change, or a new agency could spring up  or something. I try to keep in mind that a negative future is not written in stone.


An eldercare attorney can help you look at those Medicaid rules and plan ahead. They are very complicated, but can be worked around. Worth it to pay for a consultation, or, to go a cheaper way, consult with a geriatric care manager. Yeah the great middle class gets squeezed. But between the area agencies on aging and the care manager/lawyer route, you can make sense of it. And there's a 5 year forgiveness period... 

Hooray for naps. Reminds me of having an infant. Will they nap for 5 minutes or an hour?? What to do?! Run around like a headless chicken!

 

I don't want to raise your anxiety, truly, and living in the NOW is awesome as an aspiration. KEY to mental health. And... maybe... when your anxiety revs up, use that energy to go beyond online research. WebMD is information, and not a doctor...

 

You rock, no question, and happy new year!

Jane

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I do worry about future finances but I don't see any solutions. As for Medicaid, I looked at the rules online and we are caught in the middle where we will have too little to live on, or hire help on, but too much to qualify for Medicaid. It's kind of a catch-22 for older people especially, I think.

 

He is up every hour at night, but often naps some during the day. I try to grab a shower when he starts a nap so I will be sure to be finished before he wakes up. The future is uncertain but I try to focus on the now. And the rules could change, or a new agency could spring up  or something. I try to keep in mind that a negative future is not written in stone.

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