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Challenges you face when caring for someone with dementia

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.

 

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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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@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 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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I am no professional but my wife had dementia. She died in 2017. What was interesting is that she couldn't remember any important event in 2016. We spent several days traveling to be at a wedding, the same traveling to be at a grandson's high school graduation, she was in the hospital a couple of times, and she thought the president was still Obama after the inauguration that she watched on TV. I never pointed out these lost memories unless I was talking to her family doctor. I would point out to my wife that those memories were not really important, but I would describe them to her if she wanted to hear about them again. One sign that she was concerned about her memory was that each day she would want to name all the relatives and their spouses and their children's and grandchildren's names. The family tree (not all that large) was important to her that she kept it straight. She would start it and ask me if she left someone out which she seldom did, but I didn't correct her if she did. She "always had it right."

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@sp69357192 wrote:

I am no professional but my wife had dementia. She died in 2017. What was interesting is that she couldn't remember any important event in 2016. We spent several days traveling to be at a wedding, the same traveling to be at a grandson's high school graduation, she was in the hospital a couple of times, and she thought the president was still Obama after the inauguration that she watched on TV. I never pointed out these lost memories unless I was talking to her family doctor. I would point out to my wife that those memories were not really important, but I would describe them to her if she wanted to hear about them again. One sign that she was concerned about her memory was that each day she would want to name all the relatives and their spouses and their children's and grandchildren's names. The family tree (not all that large) was important to her that she kept it straight. She would start it and ask me if she left someone out which she seldom did, but I didn't correct her if she did. She "always had it right."


 

 

This is just lovely. Thank you for sharing your anecdote. You helped to calm her. And she didn't need to be distressed by her failure to remember everyone. Excellent. She was a lucky woman.

 

Jane

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@karent141049

 

Dear Karen -- it sounds like taking care of your husband is very challenging.  I was talking to a friend who also dealt with her husband having what sounds like similar rages until he finally got diagnosed with dementia.  He actually felt better after hearing a diagnosis of dementia because it explained why he was having such problems processing information and with his memory.  But it is very common for people in early stage dementia to deny the diagnosis and be quite angry when people tell them that is the reason for their problems.  Anger is often a cover for the fear, grief and loss the person is feeling. 

 

Several practical tips:  First accept that denial is a frequent reaction to hearing the dementia diagnosis.  Second, don't force the issue.  It can lessen the stress to explain that their memory problems are because their brain isn't working as well as it used to rather than insisting their problems are the result of dementia.  Be in the moment with them rather than naming the culprit.  The final recommendation is to recognize that this is super stressful for you and seek the support of others and regularly seek out respite.

 

Here is respite advice from a recent blog posted by our friends at the Coalition to Transform Advanced Care: 

 

Have you asked for support from your community? A few hours to attend to errands, get a new hairdo or spend some time in nature or with an old friend could make a big difference in your well being and those around you.

Sarah Lenz Lock, AARP Expert Brain Health
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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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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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@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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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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@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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@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 Lenz Lock, AARP Expert Brain Health
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How can wondering be corrected with dementia patients?

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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

Newbie

I just today discovered this site, even though I have been a member of AARP for many years.

 

Since April 2015, I have been a caregiver for my wife. She is now 62 and has vascular dementia.

 

I have had very little help; so little help you could call it no-help. She has no living relatives, except me. My two sons and my sisters and brothers live too far away, and they are not iching to reach out and help. They have there own familes, and they are not itching to reach out and help.

 

My wife has not yet reached the stage where she wonders. But I have been very worried about what to do when she starts wondering. We live on almost 3 acres, which is completely fenced, with lockable gates. So it's mostly when we go out to the doctors, out for meals, and shopping that I have had the most concerns. She has wondered off, but I always find her by our car or in it. 

 

JaneCares, thankyou. It is here that I first learned about GPS shoes. I felt a big sigh of relief come over me, almost  a feeling of joy. I had no idea there was such a thing as GPS shoes! For this alone, I am happy I finally came to this AARP site. Thankyou, again

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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 Lenz Lock, AARP Expert Brain Health
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There are also some very good medical alert necklaces & watches w/GPS with 2 way communication which can locate someone who has wandered.

Also, I had to do a lot of comparisons, but a big help for me in caring for my 94 yr old Mom was the MedMinder locking medication pillbox.  Compare with others & check it out, really helped us.

Also, remember to give the person dignity & respect. They are afraid & losing so much. They know they are losing their memory & a lot of the time they are terrified they are going to go to a nursing home. Need a lot of reassurance....