MCI to Dementia: What can I expect in the future?

Posted by desbabydoll @desbabydoll, Aug 23 10:02am

I am caring for my husband. He was diagnosed with with cognitive problems related to multiple traumatic brain injuries. I am seeing a decline in function. I knew it was coming. He has multiple physical health issues in addition to the MCI. His family is away, I feel most think I am exaggerating his decline. I watched him not being able to make a call yesterday. It worries me. He has admitted that he can't remember some of our times together. He is 21 years older than me. Any advice on what to expect in the future. He will be 60 in less than 2 months.

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Welcome to our group!
We are also caregivers of our loved ones and we watch the decline as you do. It is not easy to be a caregiver and that is why we need help, not only with our loved ones, but just as importantly, taking care of ourselves. This is also a good place to vent our feelings and get affirmation for our decisions. You can take our advice or leave it; we are all trying to adapt to this new journey we are on and find comfort in knowing we are not alone. Everything told on here is confidential, which enables us to tell our feelings and thoughts without being judged.
You might want to go to a Geriatric Doctor who can help your husband and you get the help you need.
Prayers for you both!

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I kept seeing a decline in my husband. My daughter didn't realize how bad it was until we moved in with her. His kids didn't think anything was wrong as they only saw him for 2 days about once a year. He was very good at 'showtime'. But that can only be managed for short periods of time normally. And people who don't live through it don't normally understand it. I now keep the tribe updated on how he is doing. Some of his first signs of dementia were having problems with technical things – phone, TV remote, computer, etc. He couldn't fake those as easily as forgetting something.
Make sure to find time for yourself (I started Pilates at almost age 82). Find humor wherever possible. This site is wonderful because you can just let go with all the frustrations and everyone understands – been there or headed there.
I have just applied for Phoenix Dial A Ride for Bill (he can't drive and I shouldn't any more so gave up the car). With Dial A Ride I can go with him as he can't go out on his own. Rarely remembers his address any more. I also use Uber when needed.
Socialize – some caregivers commit themselves totally as their loved one demands all their attention. This isn't good for either of you. Bill won't go to family functions and tries to 'guilty' me into not going (is is fine being left alone at this point). This is something he has always done. I have learned to ignore him – I go and have a wonderful time – and ignore his 'silent' punishment when I get home.

Prayers and good thoughts for both of you.

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@billchitwood

I kept seeing a decline in my husband. My daughter didn't realize how bad it was until we moved in with her. His kids didn't think anything was wrong as they only saw him for 2 days about once a year. He was very good at 'showtime'. But that can only be managed for short periods of time normally. And people who don't live through it don't normally understand it. I now keep the tribe updated on how he is doing. Some of his first signs of dementia were having problems with technical things – phone, TV remote, computer, etc. He couldn't fake those as easily as forgetting something.
Make sure to find time for yourself (I started Pilates at almost age 82). Find humor wherever possible. This site is wonderful because you can just let go with all the frustrations and everyone understands – been there or headed there.
I have just applied for Phoenix Dial A Ride for Bill (he can't drive and I shouldn't any more so gave up the car). With Dial A Ride I can go with him as he can't go out on his own. Rarely remembers his address any more. I also use Uber when needed.
Socialize – some caregivers commit themselves totally as their loved one demands all their attention. This isn't good for either of you. Bill won't go to family functions and tries to 'guilty' me into not going (is is fine being left alone at this point). This is something he has always done. I have learned to ignore him – I go and have a wonderful time – and ignore his 'silent' punishment when I get home.

Prayers and good thoughts for both of you.

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Hi, @billchitwood You bring up some excellent points about caregiving for sure and I really applaud you for beginning pilates! That is wonderful. I agree with how hard it is for many of those not in contact with our patients to see/understand/accept the declines we see every day. My wife and I had that happen over and over with members of our families. Caregiving is stressful enough without any added burdens. Each of us can only do what we see as our best for our loved ones and that often does not sync with any prescription or view held by others as to how we should be doing it. For instance, in my wife's and my case, I had to devote myself 100% to her needs. While I would have liked to have been able to not have it be so, her brain damage required my constant attention. So the old saying of "different strokes for different folks" is certainly true for us caregivers!

Wishing you continued Strength, Courage, & Peace

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Wow, Des! So sorry to hear of your situation… you folks are so young.

Please hang in there and keep your medical team and family / friends updated. Don't be shy.

All the best to all.

/LarryG

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from the perspective of someone who has also been diagnozed with MCI, I will say this about your husband's future: don't give up hope. The doctor who diagnozed me was adamant that I needed to go on the dementia drugs, but I was able to bring up my MoCA test to the point where I am no longer officially considered to have MCI. I'm not saying life is easy (I am still a work-in-progress), but now I have great hope that I will not be going down the same path as my grandmother, father, and brother. Do your research. Learn everything you can about the multiple ways to help a vunerable brain. One of my favourite strategies is to play brain games, because I find it so gratifying to see my games scores gradually improving. The brain game company whose results are the most scientifically validated seems to be Brain HQ. Good luck, and know that I am rooting for you and your husband!

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@alexandrapurkis

from the perspective of someone who has also been diagnozed with MCI, I will say this about your husband's future: don't give up hope. The doctor who diagnozed me was adamant that I needed to go on the dementia drugs, but I was able to bring up my MoCA test to the point where I am no longer officially considered to have MCI. I'm not saying life is easy (I am still a work-in-progress), but now I have great hope that I will not be going down the same path as my grandmother, father, and brother. Do your research. Learn everything you can about the multiple ways to help a vunerable brain. One of my favourite strategies is to play brain games, because I find it so gratifying to see my games scores gradually improving. The brain game company whose results are the most scientifically validated seems to be Brain HQ. Good luck, and know that I am rooting for you and your husband!

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My husband also has MCI. I would love to hear more specifics as to how you worked on this .

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@vmajk

My husband also has MCI. I would love to hear more specifics as to how you worked on this .

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I would love to write out specifics for you. Give me a few days, as I am in a bit of a time squeeze right now.

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Thank you – whenever you have time. My husband and I are very knew to this and would like to do as much as possible to slow decline. His mother did have Alzheimers.

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Hi there. I’m so sorry this is happening for you guys. And one thing that really hits hard to me is how young you guys are as well. It is one thing to have this happening but a COMPLETELY different thing when you are young.
I hope you will feel a sense of peace knowing you aren’t alone. I am new on here and I think it could be beneficial to reach out to young onset folks with illness for sure.
Hope to see you around this site.

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Hi @desbabydoll, you've been through many cognitive changes with your husband from traumatic brain injuries to mild cognitive impairment and now what appears to be declining into early onset dementia. You see him every day. It must be hard when family don't see what you do.

Let me ask you about you. How are you doing? Do you have support among friends or professional support?

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