MCI: Trying to find our best path and what to do next

Posted by ann59 @ann59, Oct 1, 2020

Just needing to talk with someone who will understand. My husband (age 79) has been diagnosed with MCI. He has a terrible Essential Tremor; received his first Deep Brain Stimulator (DBS) in 2016. At that time he received a neuropsychological evaluation by a PsyD in neuropsychology at the UC Neuroscience Institute. The result was MCI. I didn't see it as he was on an extremely high does of primidone; I thought that had effected his behavior. He was recently retested after receiving his second stimulator and the results were conclusive for MCI with some decline since the first test. After reading everything I can get my hands on, I believe that he has the type of MCI that leads to Alzheimer's. More than his memory is effected. His mother had AD. Thankfully he is still very independent, capable of daily activities and still able to maintain his work on the farm-preparing the fields, planting alfalfa, maintaining barns, equipment, etc. I do notice slight changes in judgement. Gradually he has accepted the diagnosis of MCI. We have discussed it with his PC Doc and she has prescribed medication. Although what I have read, medication is of little to no value. I have talked with him about the HABIT program at Mayo and think that we might explore that this winter when the farm is not as demanding. If we could arrange to do it on line-we are not going anywhere due to COVID. Actually at this point the tremor is more a handicap than the MCI. I just wonder how quickly the MCI could progress. Yesterday he did not remember the last four digits of his SS #. Am I getting paranoid? Are we doing all that we can to slow the progression? Should we be seeing a Dr. who specializes in dementia? Reaching out for help and understanding.

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@ann59

I hope you and your wife are moving along with whatever path you have chosen and are doing well. It is quite an adjustment in many ways. It sounds as though you two are able to talk and plan together which is such a blessing and wonderful. My husband and I are doing the same. Right now his diagnosis is early MCI. Sometimes I feel as though we are on a treadmill as we are trying to get as many plans in place as possible while he can participate. I'm very grateful that he is accepting, open and we can continue a team approach as we have our married life. Some parts of his thinking are not as sharp as they use to be, other parts I can see no difference. I have no idea how long this part of the disease will allow him to participate with me, but we plan to take advantage of each and every day. I agree with the person who wrote, "When you have seen one Alzheimer's patient, you've seen one Alzheimer's patient". It's a most perplexing disease; it seems that each person travels their own journey. Our outlook is to plan for the worse and hope for the best-along with enjoying each and every minute we have while being as pro-active as possible. I wish many enjoyable minutes for you and your wife as you plan for your future.

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Ann, I really like your comments "enjoying each and every minute we have ...." I was told about the book "Creating Moments of Joy" and got and read the book. It motivated me to plan to do that every day with my wife who has Alzheimer's disease. I found that many of the things that I did to create moments of joy for her also created moments of joy for me. For example, she and I are at the age where "Easy Listening Music" and Mantovani radio were favorites of ours on Alexa music. But one day I found her tapping her fingers to some ragtime music and we often enjoyed listening to Scott Joplin music too. Both the caregiver and the care receiver can have many moments of joy in the future.

I suggested that to a friend whose husband was becoming somewhat depressed because of his deteriorating health. He was a retired ag teacher. She took him on a tour of the farms around their town and he really enjoyed it and so did she.

Your point is very important. The Alzheimer's journey is sometimes difficult but it often can still be very enjoyable for the couple much of the time.

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@fwentz

Ann, I really like your comments "enjoying each and every minute we have ...." I was told about the book "Creating Moments of Joy" and got and read the book. It motivated me to plan to do that every day with my wife who has Alzheimer's disease. I found that many of the things that I did to create moments of joy for her also created moments of joy for me. For example, she and I are at the age where "Easy Listening Music" and Mantovani radio were favorites of ours on Alexa music. But one day I found her tapping her fingers to some ragtime music and we often enjoyed listening to Scott Joplin music too. Both the caregiver and the care receiver can have many moments of joy in the future.

I suggested that to a friend whose husband was becoming somewhat depressed because of his deteriorating health. He was a retired ag teacher. She took him on a tour of the farms around their town and he really enjoyed it and so did she.

Your point is very important. The Alzheimer's journey is sometimes difficult but it often can still be very enjoyable for the couple much of the time.

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Music is so important. When my friend was placed in care, I called her. She was diagnosed with memory impairment and then Alzheimer’s. I knew from my Study of Aging(Gerontology) that music was the last that we (usually) remember .
They called my friend to the phone. I told her who I was. Yes! She said she knew. I asked her if she wanted to sing. “YES.”
She loved music.
I chose “Rock of Ages” because I thought she would know that song. She sang along! And then she said the most beautiful word : “ Surprised.”
I said: Surprised at what, Beth?
“Surprised that I remembered.”said Beth.

I remember our singing visits and wish we had more.
Music is therapy for the soul!
Keep up the 🎼🎹🥁🎻🎷🎺 !

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@fwentz

Ann, I really like your comments "enjoying each and every minute we have ...." I was told about the book "Creating Moments of Joy" and got and read the book. It motivated me to plan to do that every day with my wife who has Alzheimer's disease. I found that many of the things that I did to create moments of joy for her also created moments of joy for me. For example, she and I are at the age where "Easy Listening Music" and Mantovani radio were favorites of ours on Alexa music. But one day I found her tapping her fingers to some ragtime music and we often enjoyed listening to Scott Joplin music too. Both the caregiver and the care receiver can have many moments of joy in the future.

I suggested that to a friend whose husband was becoming somewhat depressed because of his deteriorating health. He was a retired ag teacher. She took him on a tour of the farms around their town and he really enjoyed it and so did she.

Your point is very important. The Alzheimer's journey is sometimes difficult but it often can still be very enjoyable for the couple much of the time.

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I am going to but that book!
Thank you for telling us about it.

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@fwentz

Ann, I really like your comments "enjoying each and every minute we have ...." I was told about the book "Creating Moments of Joy" and got and read the book. It motivated me to plan to do that every day with my wife who has Alzheimer's disease. I found that many of the things that I did to create moments of joy for her also created moments of joy for me. For example, she and I are at the age where "Easy Listening Music" and Mantovani radio were favorites of ours on Alexa music. But one day I found her tapping her fingers to some ragtime music and we often enjoyed listening to Scott Joplin music too. Both the caregiver and the care receiver can have many moments of joy in the future.

I suggested that to a friend whose husband was becoming somewhat depressed because of his deteriorating health. He was a retired ag teacher. She took him on a tour of the farms around their town and he really enjoyed it and so did she.

Your point is very important. The Alzheimer's journey is sometimes difficult but it often can still be very enjoyable for the couple much of the time.

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You might enjoy Alexa.
“Alexa is an amazing round 5 inch round box!” My son and daughter in law bought Alexa for me.
What an interesting invention! ( a round “instrument”(4-5 inches in diameter)
that plays songs from pop, country , classical.
You say:

“ Alexa, play songs by Nat King Cole.”
and ‘she’ does!
Play songs from the fifties.
Etc....,,,,,

“Alexa “ plays a variety of music: classical, country, jazz.

Don’t ask me how it works!

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@helenfrances

I am going to but that book!
Thank you for telling us about it.

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buy!

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@fwentz

Ann, I really like your comments "enjoying each and every minute we have ...." I was told about the book "Creating Moments of Joy" and got and read the book. It motivated me to plan to do that every day with my wife who has Alzheimer's disease. I found that many of the things that I did to create moments of joy for her also created moments of joy for me. For example, she and I are at the age where "Easy Listening Music" and Mantovani radio were favorites of ours on Alexa music. But one day I found her tapping her fingers to some ragtime music and we often enjoyed listening to Scott Joplin music too. Both the caregiver and the care receiver can have many moments of joy in the future.

I suggested that to a friend whose husband was becoming somewhat depressed because of his deteriorating health. He was a retired ag teacher. She took him on a tour of the farms around their town and he really enjoyed it and so did she.

Your point is very important. The Alzheimer's journey is sometimes difficult but it often can still be very enjoyable for the couple much of the time.

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Thanks, I'll look for the book, it sounds interesting. We are still in the early stages. His mother had Alzheimer’s, so I have awareness of what our life might be like in the future. That's one of the reasons I put so much importance on enjoying today-it's really all we have anyway-when you stop to think about it. You never really no what tomorrow may bring regardless. I'm glad to hear you and your wife are enjoying music-We are both 79, so the easy listening is pleasing, but the ragtime sounds delightful! Enjoy! Sending you and your wife the best.

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@helenfrances

Music is so important. When my friend was placed in care, I called her. She was diagnosed with memory impairment and then Alzheimer’s. I knew from my Study of Aging(Gerontology) that music was the last that we (usually) remember .
They called my friend to the phone. I told her who I was. Yes! She said she knew. I asked her if she wanted to sing. “YES.”
She loved music.
I chose “Rock of Ages” because I thought she would know that song. She sang along! And then she said the most beautiful word : “ Surprised.”
I said: Surprised at what, Beth?
“Surprised that I remembered.”said Beth.

I remember our singing visits and wish we had more.
Music is therapy for the soul!
Keep up the 🎼🎹🥁🎻🎷🎺 !

Jump to this post

Such a beautiful memory. Thanks for sharing. I'll remember to try music when that time comes.

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My Mom had MCI that never really progressed, but she had increasing physical limitations as she aged. She had a refreshing way of looking at life - she called it "Chapters" - as each chapter closed, we deliberately opened a new one. For example, when road trip adventures became too difficult, we had short, close to home adventures like a trip to the arboretum, the tropical conservatory at the zoo or the apple orchard. When even that was too hard, we brought adventures to her - friends of ours came to play polka music and dance at her assisted living residence, her granddaughters brought cookies to decorate with her, or brought exotic pets to visit in the garden...
Now we are beginning to think about what our next chapters might look like as we age physically and mentally.
Sue

REPLY
@sueinmn

My Mom had MCI that never really progressed, but she had increasing physical limitations as she aged. She had a refreshing way of looking at life - she called it "Chapters" - as each chapter closed, we deliberately opened a new one. For example, when road trip adventures became too difficult, we had short, close to home adventures like a trip to the arboretum, the tropical conservatory at the zoo or the apple orchard. When even that was too hard, we brought adventures to her - friends of ours came to play polka music and dance at her assisted living residence, her granddaughters brought cookies to decorate with her, or brought exotic pets to visit in the garden...
Now we are beginning to think about what our next chapters might look like as we age physically and mentally.
Sue

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How comforting to read that MCI for your mother never really progressed to more advanced dementia. I would hope for that for my husband but signs don't seem to indicate such a prognosis.

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