Husband With Slow Cognitive Decline: So sad & confused

Posted by jean7ma @jean7ma, Jan 31, 2023

About 11 years ago at age 55, my husband became very ill with a high fever, was admitted to hospital but not treated with any ABX (until too late), so became delirious. He had developed severe pneumonia in both lobes. When he was discharged he was a different person, with pretty profound short term memory loss. I blame the hospital for their negligence which allowed the delirium to develop. Eventually, after seeing every kind of dr under the son, he was diagnosed with MCI. We are now retired (he was a computer engineer) and I’m struggling with my fears about the future. He drives safely (uses the GPS almost always), takes care of his own personal hygiene, does yard work when he needs to, helps around the house, and helps with our two grandsons on the two babysitting days. He does many “normal” things, he just can’t remember anything - which is very NOT normal. There are other cognitive issues too. I don’t want to keep going on and on because there’s just so much to talk about, but I’m wondering if anyone else is in a similar normal/not normal at all type situation. I feel like I’m always waiting for some awful event that will propel him into something more advanced like dementia. I’m also reluctant to get him into another round of neuropsych testing. The first round about 3.5 yrs ago wasn’t particularly helpful but could it be now if things have changed? How?Also, 3.5 yrs ago his MRI showed no sign of Alzheimer’s. In a fairly recent discussion with a neurologist, he suggested maybe/probably vascular. I do take care of all appts and bill paying but then again I pretty much always have. I just don’t know what to do next. I don’t sleep well and am depressed and sad that my life has become this all encompassing thing, and I’m disappearing. Sorry for the novel, just so sad and confused.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Make sure you have medical power of attorney. When dad was sick and had a high fever and confused , the ambulance was called. Dad refused to go to the hospital ,so they did not take him. Mom had no power of attorney. Wishing you the best.

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@marymcclanahan

Our situation sounds very similar to yours. My husband has had all the tests and is on medicine which is not helping. No definitive diagnosis except early stages of Dementia. He is 85. He has lost a lot of weight and I cook heavy meals. He asks the same questions constantly and the other things you reported. It’s really wearing me down !

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@marymcclanahan Watching someone age is so difficult physically and mentally. Have you checked around for day care centers in your area? Your local area Agency on Aging may have other good suggestions.
Have you changed your routine any to accommodate your husband’s problems?

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@marymcclanahan

Thank you. It’s been a very hard week and I realize I have to make a lot changes. Feeling old and tired .
He does not like Ensure. Will try the shakes …I will look for u tubes ….so tired…thanks so much ….m

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Maybe you could get someone to help you with some things. You are not expected to have to do everything every day. Give yourself a few hours away from everything.Good Luck

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@milliemae

Maybe you could get someone to help you with some things. You are not expected to have to do everything every day. Give yourself a few hours away from everything.Good Luck

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Thank you …I’m working on that …..

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Hugs to everyone out there and thank you for your posts.
I just came to this site after another argument and crying walk. This was so helpful. I’m so sorry for all that you are going through with MCI. Me too,
My husband is 76 this year. Several years ago friends noticed “something” off and he had an MRI that showed signs of normal aging. This past year he seemed to be “slipping” more and showing more short term memory loss. I was encouraged to have him evaluated. His MRI showed ischemic changes but nothing more. My doctor suggested he have a Neuropsych eval and testing so we started that journey. I made the appt but then his pcp wanted him evaluated by a geriatrician at a hospital aging center. I kept both appts. At the Center for Aging appt we were interviewed by the doctor and social worker then my husband had a short eval- Moca?? and scored 26 out of 30. He was diagnosed with MCI. Not dementia and a hopeful future.
They said he had to have a driving test. I was wreck and during the intense eval and driving with the occupational therapist, I prayed as hard as I could then had to surrender to whatever. He passed and drives on familiar roads, no night driving and no driving in inclement weather.
Right now he is still paying the bills and watches our portfolio but we slow but sure I will be managing more and more and we have had meetings with s of our legal and financial advisors so that I have full authority on all accounts.
It’s been a hard couple months with this new diagnosis. I am going through the many stages of grief - denial, anger and too much fighting, prayer, sadness,
lots of tears, and not quite at acceptance. My husband realizes he has memory issues and is working hard - brain games, exercise, no drinking, etc. It is hard for him and I feel so guilty when I lose my patience.

Still wondering why? There is no family history or other health problems. My husband is a retired dentist exposed to mercury? Sleep? Had a study and will need a CPap. Alcohol? We did enjoy our daily wine- no more. He is not drinking and I’m on my own there.
We have shared with friends somewhat but on these difficult days I feel alone because this is hard to talk about with friends. That’s part of the denial- I want them to see him as normal for as long as possible.
But I would also like to talk but feel it would betray him.

And so we live and love and enjoy the moments. We are traveling- I do most of the driving and make all the plans. Have no idea what the future holds or how many years we have without full blown dementia.

So much more I could write and I did but lost much of it.
All I can say is you are not alone and I was glad to find you.

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@maryvc

Hugs to everyone out there and thank you for your posts.
I just came to this site after another argument and crying walk. This was so helpful. I’m so sorry for all that you are going through with MCI. Me too,
My husband is 76 this year. Several years ago friends noticed “something” off and he had an MRI that showed signs of normal aging. This past year he seemed to be “slipping” more and showing more short term memory loss. I was encouraged to have him evaluated. His MRI showed ischemic changes but nothing more. My doctor suggested he have a Neuropsych eval and testing so we started that journey. I made the appt but then his pcp wanted him evaluated by a geriatrician at a hospital aging center. I kept both appts. At the Center for Aging appt we were interviewed by the doctor and social worker then my husband had a short eval- Moca?? and scored 26 out of 30. He was diagnosed with MCI. Not dementia and a hopeful future.
They said he had to have a driving test. I was wreck and during the intense eval and driving with the occupational therapist, I prayed as hard as I could then had to surrender to whatever. He passed and drives on familiar roads, no night driving and no driving in inclement weather.
Right now he is still paying the bills and watches our portfolio but we slow but sure I will be managing more and more and we have had meetings with s of our legal and financial advisors so that I have full authority on all accounts.
It’s been a hard couple months with this new diagnosis. I am going through the many stages of grief - denial, anger and too much fighting, prayer, sadness,
lots of tears, and not quite at acceptance. My husband realizes he has memory issues and is working hard - brain games, exercise, no drinking, etc. It is hard for him and I feel so guilty when I lose my patience.

Still wondering why? There is no family history or other health problems. My husband is a retired dentist exposed to mercury? Sleep? Had a study and will need a CPap. Alcohol? We did enjoy our daily wine- no more. He is not drinking and I’m on my own there.
We have shared with friends somewhat but on these difficult days I feel alone because this is hard to talk about with friends. That’s part of the denial- I want them to see him as normal for as long as possible.
But I would also like to talk but feel it would betray him.

And so we live and love and enjoy the moments. We are traveling- I do most of the driving and make all the plans. Have no idea what the future holds or how many years we have without full blown dementia.

So much more I could write and I did but lost much of it.
All I can say is you are not alone and I was glad to find you.

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I love what you wrote: “and so we live and love and enjoy the moments.” My husband was also diagnosed with MCI. The things I’m noticing most are short term memory issues, repetition of questions (within 5 minutes or less) and technical challenges that used to be his forte. I hear “where do we keep …(spatula / pizza cutter etc)???” On a daily basis. Like you, I want others to see him the way he has always been. This group is a wonderful support system. My husband’s sister (6 years older) just passed away from Alzheimer’s and he has watched her decline. That makes it even more difficult for him. You sound like a lovely person doing your very best on a daily basis. I guess that is all we can do.

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@2me

I love what you wrote: “and so we live and love and enjoy the moments.” My husband was also diagnosed with MCI. The things I’m noticing most are short term memory issues, repetition of questions (within 5 minutes or less) and technical challenges that used to be his forte. I hear “where do we keep …(spatula / pizza cutter etc)???” On a daily basis. Like you, I want others to see him the way he has always been. This group is a wonderful support system. My husband’s sister (6 years older) just passed away from Alzheimer’s and he has watched her decline. That makes it even more difficult for him. You sound like a lovely person doing your very best on a daily basis. I guess that is all we can do.

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Thank you, but some days I don’t feel lovely at all. I pray for patience, not to resent, and to please don’t argue- sometimes it makes no sense and just makes us both sad.

I get the same thing about remembering where things are and now we are in the middle of repainting our house and changing the color of the cabinets.

It has to be so hard for your husband to have seen his sisters decline then fear for himself. And so hard for you. That’s the stay in the moment part. I hope in all of it you both can sneak in some joy.

Thank you for your kind reply. I was so happy to find this group.

REPLY
@maryvc

Hugs to everyone out there and thank you for your posts.
I just came to this site after another argument and crying walk. This was so helpful. I’m so sorry for all that you are going through with MCI. Me too,
My husband is 76 this year. Several years ago friends noticed “something” off and he had an MRI that showed signs of normal aging. This past year he seemed to be “slipping” more and showing more short term memory loss. I was encouraged to have him evaluated. His MRI showed ischemic changes but nothing more. My doctor suggested he have a Neuropsych eval and testing so we started that journey. I made the appt but then his pcp wanted him evaluated by a geriatrician at a hospital aging center. I kept both appts. At the Center for Aging appt we were interviewed by the doctor and social worker then my husband had a short eval- Moca?? and scored 26 out of 30. He was diagnosed with MCI. Not dementia and a hopeful future.
They said he had to have a driving test. I was wreck and during the intense eval and driving with the occupational therapist, I prayed as hard as I could then had to surrender to whatever. He passed and drives on familiar roads, no night driving and no driving in inclement weather.
Right now he is still paying the bills and watches our portfolio but we slow but sure I will be managing more and more and we have had meetings with s of our legal and financial advisors so that I have full authority on all accounts.
It’s been a hard couple months with this new diagnosis. I am going through the many stages of grief - denial, anger and too much fighting, prayer, sadness,
lots of tears, and not quite at acceptance. My husband realizes he has memory issues and is working hard - brain games, exercise, no drinking, etc. It is hard for him and I feel so guilty when I lose my patience.

Still wondering why? There is no family history or other health problems. My husband is a retired dentist exposed to mercury? Sleep? Had a study and will need a CPap. Alcohol? We did enjoy our daily wine- no more. He is not drinking and I’m on my own there.
We have shared with friends somewhat but on these difficult days I feel alone because this is hard to talk about with friends. That’s part of the denial- I want them to see him as normal for as long as possible.
But I would also like to talk but feel it would betray him.

And so we live and love and enjoy the moments. We are traveling- I do most of the driving and make all the plans. Have no idea what the future holds or how many years we have without full blown dementia.

So much more I could write and I did but lost much of it.
All I can say is you are not alone and I was glad to find you.

Jump to this post

My husband has been going through this for 3 years now. We’ve also gone through all of the same schedules. He has a second MRI scheduled for May. My husband is 71 and has always been on top of his game. Now, I am having a hard time following his conversations. I too feel guilty when I get impatient with him. I pray a lot. Thanks for your input.

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@andipandi1223

My husband has been going through this for 3 years now. We’ve also gone through all of the same schedules. He has a second MRI scheduled for May. My husband is 71 and has always been on top of his game. Now, I am having a hard time following his conversations. I too feel guilty when I get impatient with him. I pray a lot. Thanks for your input.

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When someone has been so “on top of his game” as you say, it’s very hard. My husband is still doing ok with finances, but I have to kind of make sure all is well. Little by little we are preparing for me and our financial planners to take over, but I hate to pull things away too fast. I want to maintain his dignity and self esteem. I pray too and we meditate in the morning together. That is helping to start the day with more ease.
Is there a patron saint of patience? A constant prayer. Kind of a blessing that my husband doesn’t always remember what I fussed about;) Thank you for writing.

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For yourself I would suggest you find a support group with other caregivers.

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