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.

@scupper

Sexual activity is gone but so are all the other intimacies...the way things were before. He just isn't the same person. He hears my voice but doesn't understand, really, what I am saying...or remember. In fact, my talking seems to incite anger sometimes...I'm not a big talker but anything said to question, clarify, or comment may result in an angry outburst...minor things. Sometimes I share an anecdote about someone we know or offer something I read that is interesting...I can see his eyes glaze over. My friend tells me they only "hear" one out of every 4 words...hearing and vision are impacted. So,I've become very quiet. A white board tracks the date and whatever appts at on the schedule for the day. I try to have him change the day and date and ask him at some point what the month is...if I repeat this exercise every day he may recall the month eventually...sometimes the day or date....just something Im trying as a way of helping him stay in the present. So, yeah! MCI...a hell that goes on and on and on. The greatest fear is the future...with him and without him...

Jump to this post

I am so sorry about the anger issues. Hopefully they won't present.
It's hard having to change who you are to deal with this, and losing yourself and having your own personality change as a result. I sometimes struggle to control my emotions in front of him, when responding with frustration to his stuff.
I am trying to remind myself to be as patient and calm as I was with our young children. As a parent it's not always easy to control your temper; let's see if I get better at controlling my reactions.
Blessings to you. 🫶

REPLY
@scupper

I am sorry for the loss of your husband...well before he took his final breaths. How women manage to stay through these awful days amazes me...I understand love, loyalty, strength..all of this...I just don't yet know how it is done...one day at a time is what you hear. What is left of you when it is over!!?? I ask this with great respect and admiration and no judgment.

Jump to this post

I work with the elderly and often ask their advice about life issues. I hear repeatedly that they have come through such awful times because they "had no choice". I believe that's the real answer. Not "one day at a time", but finding strength, help, forgiveness, all the good things...where ever you can. Because we are stuck here doing this without a choice. We love our partners, but the disease takes them from us mentally and emotionally first before the physical person is gone. It's lousy.
Two practical things that help me get through are, first, a book called "The Book of Joy" by the Dalai Lama and Reverend Tutu. It teaches perspective, humility, humor, and acceptance (a really big one there!), forgiveness, gratitude, compassion, and generosity. When I can't sleep (most of the time), I try to receive these ideas and think about them. It'll relax me enough to sleep.
Good luck with your journey. I'm so sorry you're faced with it.
The second thing that helps is getting away. I visit my brother who is dying of alcoholic liver disease. He lives in another state, but I fly out, arrange for friends and relatives to check on my husband, and I check on him, too, daily. It's stressful, but it gives me another perspective. I feel much more like myself when I get home. I'm stronger and more able to deal with all of what is going on at home.
Again, my heart goes out to you. You have it rough. Give yourself permission to do whatever you have to to keep him safe and yourself safe.

REPLY

A MRI does not detect that disease, only an autopsy is conclusive..

REPLY
@meitsjustme

I work with the elderly and often ask their advice about life issues. I hear repeatedly that they have come through such awful times because they "had no choice". I believe that's the real answer. Not "one day at a time", but finding strength, help, forgiveness, all the good things...where ever you can. Because we are stuck here doing this without a choice. We love our partners, but the disease takes them from us mentally and emotionally first before the physical person is gone. It's lousy.
Two practical things that help me get through are, first, a book called "The Book of Joy" by the Dalai Lama and Reverend Tutu. It teaches perspective, humility, humor, and acceptance (a really big one there!), forgiveness, gratitude, compassion, and generosity. When I can't sleep (most of the time), I try to receive these ideas and think about them. It'll relax me enough to sleep.
Good luck with your journey. I'm so sorry you're faced with it.
The second thing that helps is getting away. I visit my brother who is dying of alcoholic liver disease. He lives in another state, but I fly out, arrange for friends and relatives to check on my husband, and I check on him, too, daily. It's stressful, but it gives me another perspective. I feel much more like myself when I get home. I'm stronger and more able to deal with all of what is going on at home.
Again, my heart goes out to you. You have it rough. Give yourself permission to do whatever you have to to keep him safe and yourself safe.

Jump to this post

Thank you for your kind comments. I had heard of the book and actually wrote it down. My widow's brain with its restless mind resulted in my losing it. I have written it down and will locate it.

REPLY

@jean7ma I'm sorry that you haven't gotten the answers you want with what's going on with your husband. You know more than anyone else the changes that have been happening to him and your concerns should be brought up again and ask more questions. I could tell something wasn't "normal" with my 60 year old husband when it came to his memory and cognitive abilities and and his anxiety, but i couldn't put my finger on it. Soooo we made an appointment with a new primary care provider ( he didn't have insurance for 2 years) and voiced MY concerns and she referred us to a neurologist right away and she started testing him almost from the get-go. MRI, EEG, and cognitive tests. She then referred us to an Alzheimer's neurologist and she too did some more testes including a lumbar puncture ( it took about 9-12 months from the first test to the lumbar) and then we got the diagnosis of FTD Dementia caused by Alz. I had a strong suspicion of the diagnosis before that appointment (i had done alot of my own research and trying to educate myself) but it still was an awful shock, for the lack of better words. At that same appointment, we were given a great handbook/tool and talked about the step to moving forward. One thing i remember vividly from that appointment, is that everyone goes on this "journey" at their own pace. It is different for everyone.
It has been 3 years since diagnosis day and things have progressed faster than I thought. I thought it would just be memory issues but it's been more than that for us. FTD causes loss of reasoning, judgment, and learning ALONG with memory loss. Oh yah, and he suffers from primary progressive aphasia.
So my advice is to keep on the doctors and re-run tests because like any disease, the sooner you find it, the easier it will be to combat it...except there is no cure for this dreadful disease but we learn to accept it, learn from it AND with it, pray, and keep on loving them, go forward with the crappy hand that we've all been dealt (as my sister puts it) and find support.
I will pray for you and your husband

REPLY
@nessieami7

A MRI does not detect that disease, only an autopsy is conclusive..

Jump to this post

I'm not sure whose comment nessieami7 is replying to, but if it's about Alzheimer's, that disease can be detected through a spinal tap or a PET scan. A blood test also may be available in the future. Back in the day, only an autopsy was conclusive.

REPLY
@meitsjustme

I work with the elderly and often ask their advice about life issues. I hear repeatedly that they have come through such awful times because they "had no choice". I believe that's the real answer. Not "one day at a time", but finding strength, help, forgiveness, all the good things...where ever you can. Because we are stuck here doing this without a choice. We love our partners, but the disease takes them from us mentally and emotionally first before the physical person is gone. It's lousy.
Two practical things that help me get through are, first, a book called "The Book of Joy" by the Dalai Lama and Reverend Tutu. It teaches perspective, humility, humor, and acceptance (a really big one there!), forgiveness, gratitude, compassion, and generosity. When I can't sleep (most of the time), I try to receive these ideas and think about them. It'll relax me enough to sleep.
Good luck with your journey. I'm so sorry you're faced with it.
The second thing that helps is getting away. I visit my brother who is dying of alcoholic liver disease. He lives in another state, but I fly out, arrange for friends and relatives to check on my husband, and I check on him, too, daily. It's stressful, but it gives me another perspective. I feel much more like myself when I get home. I'm stronger and more able to deal with all of what is going on at home.
Again, my heart goes out to you. You have it rough. Give yourself permission to do whatever you have to to keep him safe and yourself safe.

Jump to this post

I agree about The Book of Joy. I keep it on my nightstand.

REPLY

Dear Jean7me,

Your husband was a computer engineer and having a great memory but he’s not “normal” from his sickness, even other people thinks he’s normal. It started when he was 55 age and, now, his short memory is broken and happens his Cognitive problems.

That sounds like me. I had a bicycle accident when I was 55 yo and lost my ability to work anymore from my computer programmer close to the top in my city; memory of my past is not there anymore; hitting my Cognitive makes me non-normal (or un-normal or crazy-normal 😄) to understand of what I can do or talk as well. Yes, I’m the husband with my wife - thankfully 😇

I’ve been there going thru professionals to help my ability and yes the pros sent me up to a point and they can’t help me for to them step.

Yes, I love our grandkids, playing with them, but I can’t walk hast and there’s some pain 9n the back of my leg. Hey, I’m doing the better more per day. I believe Jesus Christ and all the brothers & sisters that pray for me. That’s a deep love for Him. And I do good stuff at home & take care of my babies (Pepper & Oakley’s doggies) and other stuff.

Your husband will do the same: of reading, email buying online stuff, cleaning in you house, take fun to your grandkids and on… that took me the last 12 years ago; it took a lot to do what I’m doing.

Thx,
Greg D.

REPLY

My husband had dementia ;he would go in and out of with Parkinson's dementia. My sister has Alzheimer's. Both have/ had success with slowing the dementia with the Vie Light 810. I first read about it in AARP magazine. It is red light treatment you can do at home.

REPLY
@judimahoney

I agree about The Book of Joy. I keep it on my nightstand.

Jump to this post

Me too - Love the Book of Joy - there is also a Netflix interview that will make you smile.

REPLY
Please sign in or register to post a reply.