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.

@tunared

My physically healthy wife retired in 2012 because of problems with her memory in a high pressure environment. In 2014 she had a memory test given by a psychologist. This psychologist then recommended she take a number of medications with multiple dangerous side effects. My wife and I agreed that she should not take the medications. Her ability to remember has gotten only worse. In 2020 she saw a Neurologist, went through a MRI, blood tests, was examined by an ENT doctor and the neurologist diagnosed her with MCI. the Neurologist stated that there are no current medications that are successful stopping, slowing or curing MCI and the best we can do are (we heard this all before).stay active, limit alcohol, etc . We've had issues with the gas stove being left on, forgetting to take a pill, forgetting names of friends. My question for anyone or eveyone is WHAT CAN I EXPECT FOR THE FUTURE? Any timeframe would be great because the neurologist said he cannot give us any timeframe or progression. He also could not give us any ideas as to what to expect. I'm looking for any help. Thanks in advance

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Hi, Dan. My wife was diagnosed with MCI in 2011 and then had a comprehensive test in 2012 and was diagnosed with Alzheimer's Disease. The disease progressed very slowly, but steadily. I was able to take care of her in our home until this August when for her safety and mine she was admitted into a memory care facility. (She was frequently in danger of falling.) I thought you might benefit from some of the things that have been of great help to me over the past many years.

Like others have said "If you've seen one dementia patient, you've seen one dementia patient. Each situation is different." I gained a lot from attending every Alzheimer's Association class that was offered. Education and learning is very helpful for a caregiver. Our local hospital also has a Neurological Resource Center which has a library that has good material. It also has meeting rooms for classes but those aren't being used right now because of COVID.

A very important part of my learning process was to realize how important it is for a caregiver to take good care of himself, physically, mentally, emotionally, and spiritually. Very frequently the caregiver will die before their loved one. For her good, you must take good care of yourself. Develop a plan on how you are going to do that.

I benefit a great deal from a men's only support group that meets once a month (now it's a Zoom meeting but I'm looking forward to getting back to face-to-face meetings eventually.) The beauty of it is that I gain from the knowledge and caring support from others who have different types of experiences to share and to suggest possible solutions to my "crisis of the day". Also, as time goes on and new members join the group, I can share my knowledge and experience and support with them too. It's an important part of my support network.

We have a Aging and Long Term Care office in town. It's a state office that offers support for caregivers to help them care for their loved ones in their home as long as possible. (Your local community probably has a similar center, maybe under the name of Office of Aging and Adult Support or Aging and Disabilities, etc.) I was assigned a caseworker who had lots of information about other care resources in our area such as day care centers, in-home care services, counselors, etc. For low income clients it provides house cleaning and in-home care at little or no cost.

My income and assets are above their low income standards but even so they set me up with counseling service (as a military veteran) at no cost to me. I meet with him once a month and he helps me develop a plan of action for the latest challenge that I have at the time. Very helpful support. Also, for a while they did provide some light housekeeping services until I needed more skilled caregivers and they they had good information on in-home care resources. Sabrina came twice a week from 9am to noon to take care of Judy and do light housework so I could get away for appointments, errands, yardwork, etc. It was invaluable and at a very reasonable cost.

The Aging and Long Term Care office also coordinates a waiting list for a Powerful Tools for Caregivers class. I benefited from that class too. It also came with a useful book that I also frequently referred to. I highly recommend it if you can locate such a class. It is a practical class to help you to care for your wife and also to take care of yourself.

Of course the Mayo Clinic Connect is a great support group too. Many of us caregivers have found that part of our job is doing problem solving with the latest wrinkle that developed in the care. This group can often come up with many useful suggestions for anything that comes up, and maybe one of the suggestions will work very well for you.

Wishing the best for you and your wife!

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@tunared

My physically healthy wife retired in 2012 because of problems with her memory in a high pressure environment. In 2014 she had a memory test given by a psychologist. This psychologist then recommended she take a number of medications with multiple dangerous side effects. My wife and I agreed that she should not take the medications. Her ability to remember has gotten only worse. In 2020 she saw a Neurologist, went through a MRI, blood tests, was examined by an ENT doctor and the neurologist diagnosed her with MCI. the Neurologist stated that there are no current medications that are successful stopping, slowing or curing MCI and the best we can do are (we heard this all before).stay active, limit alcohol, etc . We've had issues with the gas stove being left on, forgetting to take a pill, forgetting names of friends. My question for anyone or eveyone is WHAT CAN I EXPECT FOR THE FUTURE? Any timeframe would be great because the neurologist said he cannot give us any timeframe or progression. He also could not give us any ideas as to what to expect. I'm looking for any help. Thanks in advance

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Hi Dan @tunared – Here's one more thing that might help – any of us! This group puts out a series of webinars focused on caregiving. They are free. Here is the link. If you scroll down to see the link called "download calendar" you will get a list of all of their upcoming webinars. Some are focused on particular types of dementia, some focus on MCI. Could you check this out and see if something here might be a good fit?
http://www.caregiverteleconnection.org/

Liked by pasc

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@debbraw

Hi Dan @tunared – Here's one more thing that might help – any of us! This group puts out a series of webinars focused on caregiving. They are free. Here is the link. If you scroll down to see the link called "download calendar" you will get a list of all of their upcoming webinars. Some are focused on particular types of dementia, some focus on MCI. Could you check this out and see if something here might be a good fit?
http://www.caregiverteleconnection.org/

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Debbra, Thanks

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@fwentz

Hi, Dan. My wife was diagnosed with MCI in 2011 and then had a comprehensive test in 2012 and was diagnosed with Alzheimer's Disease. The disease progressed very slowly, but steadily. I was able to take care of her in our home until this August when for her safety and mine she was admitted into a memory care facility. (She was frequently in danger of falling.) I thought you might benefit from some of the things that have been of great help to me over the past many years.

Like others have said "If you've seen one dementia patient, you've seen one dementia patient. Each situation is different." I gained a lot from attending every Alzheimer's Association class that was offered. Education and learning is very helpful for a caregiver. Our local hospital also has a Neurological Resource Center which has a library that has good material. It also has meeting rooms for classes but those aren't being used right now because of COVID.

A very important part of my learning process was to realize how important it is for a caregiver to take good care of himself, physically, mentally, emotionally, and spiritually. Very frequently the caregiver will die before their loved one. For her good, you must take good care of yourself. Develop a plan on how you are going to do that.

I benefit a great deal from a men's only support group that meets once a month (now it's a Zoom meeting but I'm looking forward to getting back to face-to-face meetings eventually.) The beauty of it is that I gain from the knowledge and caring support from others who have different types of experiences to share and to suggest possible solutions to my "crisis of the day". Also, as time goes on and new members join the group, I can share my knowledge and experience and support with them too. It's an important part of my support network.

We have a Aging and Long Term Care office in town. It's a state office that offers support for caregivers to help them care for their loved ones in their home as long as possible. (Your local community probably has a similar center, maybe under the name of Office of Aging and Adult Support or Aging and Disabilities, etc.) I was assigned a caseworker who had lots of information about other care resources in our area such as day care centers, in-home care services, counselors, etc. For low income clients it provides house cleaning and in-home care at little or no cost.

My income and assets are above their low income standards but even so they set me up with counseling service (as a military veteran) at no cost to me. I meet with him once a month and he helps me develop a plan of action for the latest challenge that I have at the time. Very helpful support. Also, for a while they did provide some light housekeeping services until I needed more skilled caregivers and they they had good information on in-home care resources. Sabrina came twice a week from 9am to noon to take care of Judy and do light housework so I could get away for appointments, errands, yardwork, etc. It was invaluable and at a very reasonable cost.

The Aging and Long Term Care office also coordinates a waiting list for a Powerful Tools for Caregivers class. I benefited from that class too. It also came with a useful book that I also frequently referred to. I highly recommend it if you can locate such a class. It is a practical class to help you to care for your wife and also to take care of yourself.

Of course the Mayo Clinic Connect is a great support group too. Many of us caregivers have found that part of our job is doing problem solving with the latest wrinkle that developed in the care. This group can often come up with many useful suggestions for anything that comes up, and maybe one of the suggestions will work very well for you.

Wishing the best for you and your wife!

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mr. Wentz, thanks for you help. I'll look into some of your recommendations. Give your wife a hug from a friend you are helping. Dan

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@tunared

hi Ann
It seems like my wife is not as far along as you husband and we are lucky in that my wife is very healthy in all other areas (no limitations, no medications) which I guess is unusual for a 71 year young lady. Because of our past careers, we are both VERY skeptical of pharmaceutical claims on the effectiveness of drugs and their side effects.
your comment about “declining rapidly” is kind of scary for both of us. not knowing how this disease progresses is very scary because it’s difficult to plan the future.
Dan

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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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@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

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@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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