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Re: Challenges you face when caring for someone with dementia

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Message 21 of 30

He admits to many of the things he can no longer do. He asks me to help him or to do things for him because he can't. He admits that he makes constant mistakes, has to be reminded of many things, helped with many things, and has what he calls "fuzzy times", but he gets very angry if I point out any of these things when they are happening. He has terrible "tantrums", as he calls them. They are all out rages. He rages over nothing and once he starts, he can't stop until he is exhausted.Then hesulks. He does not take medication for dementia because he has other illnesses and his neurologist thinks adding the dementia drugs would be too much for him. He also had a brain abscess years ago that left him with very minor deficits. He has had a recent MRI and some other tests to make sure there is no new problem relating to that, and they found nothing. His mother died of early onset Alzheimer's. Now he has it, but he insists he doesn't. He pretends his problems are much more minimal than they are, claims he never had a good memory anyway, and insists he's just having a little more trouble from the old brain abscess. His neurologist knows all this and just says to hang in there because he won't be able to deny it much longer. I feel like the mother of toddler going through the terrible twos but the toddler is twice my size. I'm afraid that if I stopped helping him he would have a physical health crises. She also says this is all about his anger and frustration that this is happening to him and that, in time, he will accept it. He is already a full time job for me and his Alzheimer's is still in a fairly early stage. One thing I've learned is that a spouse does not get Alzheimer's; the couple gets Alzheimer's...

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Re: Challenges you face when caring for someone with dementia

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Message 22 of 30

@karent141049 wrote:

Does anybody have any advice as to how to deal with a recently diagnosed spouse who is in total denial? What do you do, as you watch somebody slowly deteriorating but they insist they have been mis-diagnosed by two different neurologists?


Whoooo boy, Karen, that's heartbreaking. 

Well, i have a few ideas. Tell me what you think. 

 

I used to work in a chemotherapy clinic as a social worker, and i ran a whole bunch of support groups. "Denial" was one of our favorite topics. And one of the things that my cancer patients taught me is that it hardens the 'denial' if you come at it directly. People just dig in. So instead of trying to figure out a way to chip away at his denial, you just go on about your lives together. Don't fill in for his blank stares, finish his sentences, rescue him, unless he would hurt himself or you if you didn't intervene.

 

Ways to spot that the denial has big holes in it:

Did the neurologists prescribe one of the drugs that slow dementia? is he taking it? 

Is he writing down more reminders for himself?

Are there certain things that he can no longer do and he admits it?

 

I had a friend who's mother developed dementia, and one way the daughter could tell was that the crossword puzzle was no longer filled with words but with doodles. 

 

One other point: it's hard to admit to your wife that your brain is broken and getting more broken. Does he have a brother, or a minister/rabbi/yoga teacher that he trusts? Does he have future appointments with his primary care provider? Make that brother/adult son/best male friend/clergy person go, too. Your husband may be more candid. Or maybe less candid. Does he have a sister?  You know his world: who would he listen to?

 

What do you think? Please write more.

Jane

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Re: Challenges you face when caring for someone with dementia

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Message 23 of 30

Does anybody have any advice as to how to deal with a recently diagnosed spouse who is in total denial? What do you do, as you watch somebody slowly deteriorating but they insist they have been mis-diagnosed by two different neurologists?

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Re: Challenges you face when caring for someone with dementia

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@DonnaW710509 wrote:

I am trying to help out a person in our choir. I am trying to find ways to keep him/her in the choir because singing is so important for the brain. However, I never knew there were so many cognitive steps to following the music in the hymnal with the new songs. Nothing yet has worked out well... Larger print of the lyrics... a special notebook... line markers... all of the other choir members try to assist but is there anything else we have not tried that would keep this individual focused? The socializing and singing is so very important! Thank you!


How wonderful that you all are trying to help!

Perhaps relax your standards just a bit? Let him/her do what they can with the words in large type, and if they wander off the note, so what? Have at least one buddy, preferably two, right close, and wing it? 

 

In addition to the awesome movie, Alive Inside, there's also the delightful Young@Heart about a senior citizens choir. Hilarious and very moving. Here's the trailer: https://youtu.be/CjnfoFg7i7g.

 

Make a joyful noise, amen.

Jane

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Re: Challenges you face when caring for someone with dementia

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@s730678s wrote:

How can wandering be corrected with dementia patients?


Wandering is very tricky!  I have 2 ideas: one is to hide their shoes.

 

The other is to buy GPS shoes: they are expensive but you can always find your loved one if they do happen to 'escape.'

 

Any other ideas out there folks?

 

Jane

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Re: Challenges you face when caring for someone with dementia

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@DonnaW710509

Morning Donna!  You are so right.  Singing and music and being social in a choir can be so great for a person living with dementia.  In fact at least two professors have studied the benefits of choirs on the cognitive health of people living with dementia.  Mary Mittleman out of NYU and Julene Johnson from UCSF.  I don't have specific expertise on this question, so I will ask them and get back to you!

 

Have you seen the 2014 documentary "Alive Inside" about the work of Music and Memory?  It's awesome!  Music & Memory is a NY non-profit that promotes music as a way to tap memories and reduce stress.  Sarah

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

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@s730678s Glad you asked!   Wandering is one of the most common issues to deal with.  Here is a great Alzheimer's and Dementia care video with lots of ideas from our friends at UCLA who worked with AARP to post their caregiver training videos on AARP's CareConnection site.  Dr. Linda Ercoli is featured with several very specific suggestions about how to distract and dissuade a person with dementia from wandering with respect and love.    

 

There are lots of videos available on managing challenging behaviors -- scroll down to the one on wandering. 

https://www.careconnection.aarp.org/en/pages/tips-and-articles/dementia-alzheimers/dementia-videos.h...

 

Sarah (and my colleagues Sanjay Khurana and Sara Kim, and Drs. Zaldy Tan,  David Reuben and Linda Ercoli from UCLA!)

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

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I am trying to help out a person in our choir. I am trying to find ways to keep him/her in the choir because singing is so important for the brain. However, I never knew there were so many cognitive steps to following the music in the hymnal with the new songs. Nothing yet has worked out well... Larger print of the lyrics... a special notebook... line markers... all of the other choir members try to assist but is there anything else we have not tried that would keep this individual focused? The socializing and singing is so very important! Thank you!

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Re: Challenges you face when caring for someone with dementia

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How can wondering be corrected with dementia patients?

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Challenges you face when caring for someone with dementia

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Message 30 of 30

What are some of the greatest challenges you face caring for a loved one with dementia? 

 

Get some great answers from our expert, Sarah Lock.  Sarah Lock is Senior Vice President for Policy and Brain Health in AARP’s Policy, Research and International. She leads policy initiatives on brain health and care for people living with dementia and is Executive Director of the Global Council on Brain Health, an independent collaborative of scientists, doctors and policy experts convened by AARP to provide trusted information on brain health.

 

Share and learn now.

 

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