1. < Caregivers: Dementia

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.

marye2 | @marye2 | Mar 24, 2023

I am still hanging in there, which is good as husband has severe issues. We did update all the paperwork a few months ago. Our issue is having no family in touch and so signed a testamentary trust for the house and contents--they will clear the house, sell it and give remaining funds to sons. It might be academic anyways as Medicaid for long term care may be our only option when funds run out.

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ann16 | @ann16 | Mar 24, 2023
In reply to @IndianaScott "Hello, @marye2 I read your post with interest as it reminded me of going through a..." + (show)
@IndianaScott

Hello, @marye2 I read your post with interest as it reminded me of going through a similar situation with my wife as she declined. I know everyone, every situation, and their journeys are unique but here is what I did to get this critical issue taken care of. While my wife was initially reluctant to do this, I told her if anything happened to either of us and we didn't have a will, the government had one for us (by law) and they would dictate what and where our assets went. She quickly agreed she'd rather have our personal say-so in these matters!

I talked with my wife so I understood her basic desires for the important stuff. Then I went to our lawyer and we drafted our documents -- will, estate plans, durable POA, medical POA, advance directives, etc. I then took the drafts home to discuss with my wife in almost final form. This way it was not as overwhelming to her and she could just react to things rather than have to create it all. There were actually very few changes she wanted. In our town, our attorney actually came over to our home with his secretary to witness, notarize, etc. the signings.

Strength, Courage, & Peace

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You did a great service tactfully for yourself and for her!! Way to go! It can be very challenging to be find creative solutions!

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milliemae | @milliemae | Mar 25, 2023

My husband has CIDP he started having issues. We went through years of falls fractured bones. He finally got a diagnosis of CIDP but he was unable to walk by the.He now gets IVIG therapy. He fell and had a fractured hip after his surgery he was so confused he did not recognize me or our son. Anesthesia seems to really add to memory issues. Fortunately we are home safe and doing pretty well. But he has to have help with daily hygiene. Some days are better than others we just are taking one day at a time. It’s hard to see the ones that we love decline. The golden year are not easy sometimes

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1 reply
dabbs | @dabbs | Mar 25, 2023
In reply to @milliemae "My husband has CIDP he started having issues. We went through years of falls fractured bones...." + (show)
@milliemae

My husband has CIDP he started having issues. We went through years of falls fractured bones. He finally got a diagnosis of CIDP but he was unable to walk by the.He now gets IVIG therapy. He fell and had a fractured hip after his surgery he was so confused he did not recognize me or our son. Anesthesia seems to really add to memory issues. Fortunately we are home safe and doing pretty well. But he has to have help with daily hygiene. Some days are better than others we just are taking one day at a time. It’s hard to see the ones that we love decline. The golden year are not easy sometimes

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It’s ironic that commercials show seniors out dancing at high end resorts, active and laughing and smiling. Is that reality? If it is I’m definitely doing something wrong. Golden years have been rough!….David

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1 reply
marymcclanahan | @marymcclanahan | Mar 26, 2023

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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2 replies
milliemae | @milliemae | Mar 27, 2023
In reply to @dabbs "It’s ironic that commercials show seniors out dancing at high end resorts, active and laughing and..." + (show)
@dabbs

It’s ironic that commercials show seniors out dancing at high end resorts, active and laughing and smiling. Is that reality? If it is I’m definitely doing something wrong. Golden years have been rough!….David

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Amen! Had I knew that my husband would have got sick we would have traveled more. Now it’s hard to walk we don’t travel except to the doctor appointments. Hindsight is always clear…Jane

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milliemae | @milliemae | Mar 27, 2023
In reply to @marymcclanahan "Our situation sounds very similar to yours. My husband has had all the tests and is..." + (show)
@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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Hang in there and if you don’t think the medicine is helping call your doctor and tell them. You live with him 24/7 and you know him. I would recommend getting him a protein shake to add calories.If he has diabetes Sam’s Club sells Premire Protein and it’s low carbohydrates. I have watched many Utube videos on caregivers and dementia. Might try it to get pointers on dealing with the repeat questions. Dementia Careblazers . Good luck Jane

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1 reply
milliemae | @milliemae | Mar 27, 2023
In reply to @milomiles "Hello all, This is my first post and I am doing so in the privacy of..." + (show)
@milomiles

Hello all,

This is my first post and I am doing so in the privacy of my office at work with tears pouring down my face as I read about your journeys. I am grateful for all of the information and so scared for what I fear is coming.

My husband is only 58 years old and I have witnessed a slow decline for about 3 years. He has finally agreed to talk with a doctor and we have an appointment at Mayo on April 27th. My husband has spent his life with pride in his intellect. He has always been the smartest one in the room and the person everyone goes to with technology issues. He now can't seem to work his phone, constantly blaming Apple for messing with his account. He has changed emails at least 10 times in the last few months, saying that someone is stealing his account and can not remember a single password when I try to help him. He failed to pay the mortgage for 3 months and I wasn't aware until we received a collections letter in the mail. He has always taken care of things and I don't want to demoralize him by taking away things - so, I spend a lot of time going behind him and double-checking. It is exhausting! He is still driving, but has gotten lost in our community and seems so uncertain of his abilities...he seems scared sometimes. I always offer to drive when we go places and he quickly agrees, saying "if you want to it's all yours" and throwing me the keys.

My greatest fear and greatest hope are that they find nothing. I know my husband, we have been married for 25 years and something is wrong. There were many other issues over the past few years, but he has refused to accept help until now. I am not sure if he is ready to understand or is afraid that our marriage is being affected - either way, I am grateful he is willing to get help.

I am wondering if any of you have advice for me as we are just starting this journey. What was important for you as a spouse to understand? How did you cope with the fear of being the one who is responsible for everything? How did you talk with friends about what was happening? My husband is my best friend and I would never tell anyone about this w/o his permission and it has been weighing so heavily. I spend a lot of time making excuses and trying to re-route plans so that his issues aren't noticeable, though our 19 yo son has told me that he is worried. I try not to feel sorry for myself, but we have so many dreams for retirement and I see those slipping away.

I am sorry for the long post - this is the first time I have put this out into the universe. Thank you for allowing me the space and I am grateful for any advice you have as we start down this path.

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Don’t be sorry for the long post you are not alone in the journey. And I bet you felt better releasing the tears. Sometimes I go downstairs to do laundry or take a shower when I need a good cry. There’s nothing wrong with it ! I’m sure your son needs to understand what is going on as well. Not easy seeing it unfold….Jane

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marymcclanahan | @marymcclanahan | Mar 27, 2023
In reply to @milliemae "Hang in there and if you don’t think the medicine is helping call your doctor and..." + (show)
@milliemae

Hang in there and if you don’t think the medicine is helping call your doctor and tell them. You live with him 24/7 and you know him. I would recommend getting him a protein shake to add calories.If he has diabetes Sam’s Club sells Premire Protein and it’s low carbohydrates. I have watched many Utube videos on caregivers and dementia. Might try it to get pointers on dealing with the repeat questions. Dementia Careblazers . Good luck Jane

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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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1 reply
providence1960 | @providence1960 | Mar 28, 2023

What you are feeling about losing yourself is so true...it’s something I’ve experienced with my mom as she approaches seven years of her diagnosis. It’s easy to say make time for yourself and sometimes hard to do. I thought I was doing OK but it became overwhelming even as I made time for myself. I now have caregiving three days a week and it helps so much. Still this journey is a hard one. Courage.

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