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Re: Challenges you face when caring for someone with dementia

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Dear Sarah,

       I am 85 years old and my wife is 83 years old.   My wife has Dementia.  She has had it for approximately 1 1/2 years now.  You always hear the Medical Side of Dementia but very seldom hear about the everyday challenges faced during this journey.  Despite any Medical problems I have, I intend to take care of her and never, ever put her in a home.  My only help is my daughter who works at a hospital and does the shopping for us etc.  I have written 30 paragraphs regarding this journey with my wife.  Three Doctors have read it and 4 or 5 friends.  They all have indicated that I should try to have it published in a magazine or some form of exposure for people in my situation to read.  I only wrote it for one reason.  I did not have anyone to tell me what to expect.  Anyone I came in contact with would say oh yes been there and done that.  It was written for anyone that is about to or just starting their journey with a family member with dementia.  IF you are interested in reading my experience with dementia and possibly would like to publish it for others.  Please let me know and I can email it to an email of your choice.   Thank you.  

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Re: Is Dementia a side-effect for seniors who are sheltering-...

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@SandraS836262 wrote:
Is Dementia a side-effect for seniors who are sheltering-in-place? My 90+ year-old mother has been sheltering-in-place for the past 6 weeks. Prior to that, she attended church, doctor appointments, hair appointments, shopping, etc., so she got out of the house almost every day for something. She is now at home with two adult daughters and receives regular phone calls from friends and family. However, in the past 2 or 3 days she’s made some peculiar statements such as: she’s expecting a phone call this afternoon saying they will have church services tomorrow; she wants to go to a restaurant this afternoon (all restaurants are still closed for in-house dining); she heard on the news that this has all been a ‘play’ or some type of reality show; she called the doctor’s office to schedule an appointment, and got mad because she got a recording (dr.’s office had told her 3 weeks ago that their office was closing for pandemic); called and tried to make a hair appointment since she’d be going to church Sunday; etc. She is not sick and not running a fever and she has been understanding about the situation for past 5 weeks, but now all that seems to be rapidly changing. Is this just cabin fever kicking in, or has anyone else noticed a change in the senior adults/parents they are taking care of? Kay

Stands to reason, doesn't it.

Is there anyway you can help orient her each day? Watch something like the Today Show to get oriented to day of week, date on calendar, top of the news, and then avoid other news about the virus. Make a schedule: If its Sunday, you watch a worship service online, then bake something? If its Monday, talk to grandchildren on facetime, facebook messenger, zoom, or just the good ol' phone?

 

Somehow ground her in the here and now, and be gentle about 'corrections.' Distractions and interactions and whatever can pass for 'normal' might be better than saying, "but remember we CAN't go to restaurants right now?!?"

 

What do you think?

 

Jane

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Is Dementia a side-effect for seniors who are sheltering-...

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Is Dementia a side-effect for seniors who are sheltering-in-place? My 90+ year-old mother has been sheltering-in-place for the past 6 weeks. Prior to that, she attended church, doctor appointments, hair appointments, shopping, etc., so she got out of the house almost every day for something. She is now at home with two adult daughters and receives regular phone calls from friends and family. However, in the past 2 or 3 days she’s made some peculiar statements such as: she’s expecting a phone call this afternoon saying they will have church services tomorrow; she wants to go to a restaurant this afternoon (all restaurants are still closed for in-house dining); she heard on the news that this has all been a ‘play’ or some type of reality show; she called the doctor’s office to schedule an appointment, and got mad because she got a recording (dr.’s office had told her 3 weeks ago that their office was closing for pandemic); called and tried to make a hair appointment since she’d be going to church Sunday; etc. She is not sick and not running a fever and she has been understanding about the situation for past 5 weeks, but now all that seems to be rapidly changing. Is this just cabin fever kicking in, or has anyone else noticed a change in the senior adults/parents they are taking care of? Kay
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Re: Challenges you face when caring for someone with dementia

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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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Re: Challenges you face when caring for someone with dementia

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@d219112p wrote:

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.


People who are losing memory and brain abilities are very afraid that their freedom will be taken along with their memory. There's no cure for dementia if what she has is vascular dementia or Alzheimers.  But she may be overmedicated for physical ailments, or may have a low grade infection. Urinary tract infections can impair mood and cognition.

 

One possibility for getting her in to see her primary care provider is for you to prompt the provider, his or her medical assistant or nurse, and say, It's time for your annual check up!! Then, since its not an appointment for her memory but her general health, she might agree to go. Once you get her there, she will probably put on a good show, but clue the doctor in to the fact that you're concerned (quietly, privately, perhaps by fax or note before the appointment) and let the doctor do a mini mental status exam along with the other stuff. 

 

Just might work.

 

Meanwhile, it's important to watch her and see what's going wrong. One clue that a friend of mine had when her mother started to have trouble was that she could no longer fill out the daily crossword puzzle. She put random letters in it and gave up. Is she still driving? Is she getting lost? Does her husband still live with her?What else is going on? For example, if she's refusing to bathe, take her to get her hair done so at least her hair is clean. Go shopping for new bathroom towels and by a shower bench. Put in grab bars. 

 

Your family will need to pull together about resources and who can help with what. Whether or not she gets to the doctor, she's going to need more help.

Tell us more?

Jane

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Re: Challenges you face when caring for someone with dementia

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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....

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Re: Challenges you face when caring for someone with dementia

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Message 7 of 38

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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