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Husband With Slow Cognitive Decline: So sad & confused
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.
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@bestofthebest and @scupper Welcome to Mayo ClinicConnect! I’m so glad you found this site and that it helps you. Let’s ask some of the other members if they will return and share their tips and thoughts and feeling. @marye2 @pattyinal @maryvc @meitsjustme
Please check out the other discussions in the Caregivers support group! They are also a wealth of information. Some examples are: https://connect.mayoclinic.org/discussion/husband-diagnosed-mci./. https://connect.mayoclinic.org/discussion/caregiving-for-dementia-sufferers/.
May I ask how you found Connect?
Im not sure how I found Connect. My husband had an angry outburst one afternoon and I was so angry and hurt I began just looking around on google...MCI, support groups, managing anger as a caregiver etc. So, I literally stumbled across Connect and began reading some posts. I then wrote a post about MCI and was shocked to receive several replies immediately and their stories resonated. Each day I work my way through other places on the site, and find reading even old posts helpful and so humbling as women (mostly) describe what they are called on to do and be as a caregiver. So many describe the personal toll it its taking on them, recognizing there is no single, perfect answer or solution. It frightens me to think about what is ahead. I think this is tough now...yikes! I don't want to even think about the future.
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4 ReactionsMy husband began a very long journey with his mental and overall health. The anger issues were the first to emerge with throwing things and raising his voice. I had to call the police with one incident. Unfortunately, my husband was a retired State Constable. The officer interviewed my husband first. Then he came to me and said, " your husband wants you out of the house, why don't you do it."
Then came the catheters, the infections, the struggle with eating, all the basic ADLS of a life. Finally, we were given the definition of FTD or frontal temporal dementia. He slowly left this life on earth as I medicated him with morphine via Hospice. I kept him at home and held his head as I cried, soaking his face with tears. He took his last three breaths and was gone.
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9 Reactions@nessieami7 Welcome to Mayo Clinic Connect! Sounds like you had a Very difficult time. The anger seems to be the most frequent problem mentioned. Do you have any tips on how you managed it?
Did you handle all the caregiving tasks or did you have some help? In hindsight, what would you tell new caregivers?
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1 ReactionI 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.
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4 ReactionsI am in a near similar situation, just didn't have the hospital stuff like you did (so sorry).
I feel like I'm always waiting for the other shoe to drop, especially with regards to his driving.
I know that being strong will be the only way through this as his decline continues; easier said than done.
Every time I notice a new cognitive issue, I just grieve and get depressed all over again.
Also, I miss the intimacy. Unsure if other folks are going through this, but I looked up some research and confirmed that decreased sexual activity with MCI happens in about 2/3 of patients.
It's like Dante's seven levels of hell, MCI version.
My biggest fear is how I'll care for him if things go south fast.
Trying to hang in there! I do attend a dementia support group.
Big hugs, everyone.
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3 ReactionsI used my Silva meditation, faith and the lessons from one of my favorite books. Viktor Frankl's, Mans Search for Meaning. I read it again after my husband died. I had to again search for my own sense of meaning. I was no longer the wife, the caregiver, the crusader, the defender versus the medical interventions.
I found that my olfactory sences were dominant at that point. I burnt an extraordinary number of candles every day/night.
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2 ReactionsExactly, I just want to have the retirement we planned.
If wishes were fishes...
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1 ReactionI had to cherish myself and most of all my connection to my own heart. I began to eat more for I had lost 30 #s and take more vitamins. I searched the sky for birds and airplanes, and the moon. I listened to the owls that live in our giant oak trees. I do my best to smile more than cry.
I am now able to laugh and laugh loudly when I see or hear amusing things. There are times that my face glistens with tears. Always and avarice reader I have consumed many books, but
none that are. nonfictional.
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2 ReactionsSexual 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...
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