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.

@becsbuddy

@grammyz5 i can certainly understand your not wanting to go cruising, especially by yourselves. Have you looked into the small boat cruises on the Mississippi? Is his day-to-day behavior such that you could do something like that? You wouldn’t have to travel very far.

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He gets episodes of glassy eyes a little spacey and if he naps he is fine after. He is being tested for seizures too. It’s hard not having any answers. Ugh

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@bobbisedlmayr

He is soon to be 70 may 17. He has been forgetful for last 5-6 years. He would say I told u I am going here. Nope u didnt. Lost keys forgot where he put keys. Driving thru red lites and pulling out in front of other cars! Alot of anger. Depression and crying. I thank god for our neuro dr. Who got him on depression/ anxiety meds. It is a pretty big difference.

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Bobbised, To begin with, you have your hands full. My first visit would be to his MD and explain his driving. His MD can have his DL removed. I know how hard it is to do that but not only is he endangering himself, he’s also endangering everyone around him ……David

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@dabbs

Bobbised, To begin with, you have your hands full. My first visit would be to his MD and explain his driving. His MD can have his DL removed. I know how hard it is to do that but not only is he endangering himself, he’s also endangering everyone around him ……David

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It has been a whirlwind. So many appts. We do have dr appt wed. To get dr order to have a driving test done with to see where his driving levels are.

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I am in the same boat where there are noticeable deficiencies but basic functions are ok. The neuropsych exam noted problems with planning. But, we have also noted issues with specific tasks like locating files on the computer, figuring out data on lists (we produce a directory for a club) and so on. He can still sort pills, but I have large labels on allergy, diarrhea and other common pills. Still driving, but it worries me when he is alone. We took a driving trip for a few weeks, and the changes in environment made things difficult and I noticed I had to do a lot of support. He is now on oxygen as there is not enough oxygen getting to his brain--request a pulmonary function test. Brain seems ok as far as CT, but he will not go for an MRI due to claustrophobia. Calm, simple home life helps. I am trying to restructure our lives so I get respite for a couple of hours daily (lunch with friends, mahjong, walks, etc). I plan to find a self help group through the local Council on Aging. In person therapy is unavailable with Medicare--everyone is too busy to book. I have been back and forth with trying to figure this out as it does affect my life and will in the future--make sure you get some time out daily.

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@grammyz5

He gets episodes of glassy eyes a little spacey and if he naps he is fine after. He is being tested for seizures too. It’s hard not having any answers. Ugh

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My husband was getting syncope, but he is also diabetic. We have an oximeter and we also take his blood glucose readings and check his blood pressure. He was having "white outs." Breathing and oxygen is at better levels when lying down, rather than sitting. We do the 15 minute watch for low glucose: a few ounces of classic coke, a small snack and test again in 15 minutes. Usually resolves. We have glucose tabs everywhere, including in the car. It took a couple of years to sort this out. We went to a pulmonologist.

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@marye2

I am in the same boat where there are noticeable deficiencies but basic functions are ok. The neuropsych exam noted problems with planning. But, we have also noted issues with specific tasks like locating files on the computer, figuring out data on lists (we produce a directory for a club) and so on. He can still sort pills, but I have large labels on allergy, diarrhea and other common pills. Still driving, but it worries me when he is alone. We took a driving trip for a few weeks, and the changes in environment made things difficult and I noticed I had to do a lot of support. He is now on oxygen as there is not enough oxygen getting to his brain--request a pulmonary function test. Brain seems ok as far as CT, but he will not go for an MRI due to claustrophobia. Calm, simple home life helps. I am trying to restructure our lives so I get respite for a couple of hours daily (lunch with friends, mahjong, walks, etc). I plan to find a self help group through the local Council on Aging. In person therapy is unavailable with Medicare--everyone is too busy to book. I have been back and forth with trying to figure this out as it does affect my life and will in the future--make sure you get some time out daily.

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They now have open MRI’S . Less claustrophobic for the patient…..David

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@marye2

I am in the same boat where there are noticeable deficiencies but basic functions are ok. The neuropsych exam noted problems with planning. But, we have also noted issues with specific tasks like locating files on the computer, figuring out data on lists (we produce a directory for a club) and so on. He can still sort pills, but I have large labels on allergy, diarrhea and other common pills. Still driving, but it worries me when he is alone. We took a driving trip for a few weeks, and the changes in environment made things difficult and I noticed I had to do a lot of support. He is now on oxygen as there is not enough oxygen getting to his brain--request a pulmonary function test. Brain seems ok as far as CT, but he will not go for an MRI due to claustrophobia. Calm, simple home life helps. I am trying to restructure our lives so I get respite for a couple of hours daily (lunch with friends, mahjong, walks, etc). I plan to find a self help group through the local Council on Aging. In person therapy is unavailable with Medicare--everyone is too busy to book. I have been back and forth with trying to figure this out as it does affect my life and will in the future--make sure you get some time out daily.

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I hear all you are saying. I just got my husband to a drivers assessment test. Then I mentioned we had needed to reach out to a lawyer so I made an appt for us. He flipped a switch. No hes not going. He will make his own lawyer appt. I have been asking for a couple of months. We r that couple who has done nothing. He would never allow and now we have to get all this done while he still can say what he wants and sign documents. Today is a reL struggle. Anger and tears.

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@bobbisedlmayr

I hear all you are saying. I just got my husband to a drivers assessment test. Then I mentioned we had needed to reach out to a lawyer so I made an appt for us. He flipped a switch. No hes not going. He will make his own lawyer appt. I have been asking for a couple of months. We r that couple who has done nothing. He would never allow and now we have to get all this done while he still can say what he wants and sign documents. Today is a reL struggle. Anger and tears.

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Well your options are limited BUT not impossible. Keep your appointment with your attorney and explain what really is going on. Your Lawyer and MD can take this in front of a judge to rule him incompetent to make decisions or sign any legal forms. I know it sounds harsh but since he can’t be cooperative then for your own sanity you have to do what needs to be done. Insure that your safety is your #1 priority! As well, know that anyone losing their independence are angry, scared, as well as all emotions that go with dementia. Prayers heading your way…..David

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@trishaanderson

Jean like you my husband was diagnosis with MCI about 11 years ago, not due to illness but maybe age and family history. The first 8- 10 years were very slow progress but now it's almost daily downward changes.
Your last few lines of your post pretty much sums up how I feel. Trouble sleeping, so sad and "I'M DISAPPEARING"!
Mayo Clinic and our doctors are wonderful but at the end of the day it's just the two of us trying to deal with this awful disease.

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I was a bit familiar with it when other people in family were dealing with it; but there is a whole different life when living with it. I have read many books on brain issues and one of my favs was "Vanishing", a very personal one. You using the word "disappearing" is part of it. Some days are good and then i relax and the "crazy" day comes along is a bit of a surprise. My term "crazy" not mean, it is like sometimes when i had "crazy" days with kids. I think i am okay but stomach goes nuts and i end up feeling like crying, when he takes nap i do too.
You are not disappearing but have become a caretaker by love and yes, angry, sad, but think of all the years before and find things to laugh about. And i do keep a journal and pray, pray, pray.

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@bobbisedlmayr

I hear all you are saying. I just got my husband to a drivers assessment test. Then I mentioned we had needed to reach out to a lawyer so I made an appt for us. He flipped a switch. No hes not going. He will make his own lawyer appt. I have been asking for a couple of months. We r that couple who has done nothing. He would never allow and now we have to get all this done while he still can say what he wants and sign documents. Today is a reL struggle. Anger and tears.

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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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