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.

rjchambliss5 | @rjchambliss5 | Apr 25, 2023

In reply to @maryvc "When someone has been so “on top of his game” as you say, it’s very hard...." + (show)

“Kind of a blessing that my husband doesn’t always remember what I fussed about;) “ I love that you said that because I think that too! May God bless you! 😘

meitsjustme | @meitsjustme | Apr 26, 2023

In reply to @maryvc "Hugs to everyone out there and thank you for your posts. I just came to this..." + (show)

@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

What you describe so well is just what I'm feeling about my husband's losses. The fact of trying so hard not to get impatient. Trying to be extra kind and loving. And treasuring the moments when I get to feel as if I have him back for a short time, but realizing those times will be less and less frequent. Thanks for writing this post so eloquently. It really made me feel less alone,.

milliemae | @milliemae | May 3, 2023

In reply to @maryvc "Hugs to everyone out there and thank you for your posts. I just came to this..." + (show)

@maryvc

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

Take one day at a time. And I believe in prayer 🙏. It’s hard to watch the one who has been a pillar change.

maryvc | @maryvc | May 3, 2023

In reply to @milliemae "Take one day at a time. And I believe in prayer 🙏. It’s hard to watch..." + (show)

Thank you for the reminder and understanding.

I agree to simply take one day -even one hour or one moment at a time.
It is hard. I sometimes have a hard time praying but still do my best.

Prayer, patience and perseverance. I was looking for the patron saint of Patience and found it to be Saint Monica. I was raised Catholic so loved the saints. I now pray in all religions but loved reading about her. She is the patron saint of patience and perseverance and also the Patron Saint of "all those women who, with strength, will and perseverance want to lead their family to God. "

I am not all that religious but love a spiritual essence and loved what I read about this woman.

She was the mother of St. Augustine who needed a lot of work and therefore she is also the patron saint of mothers.

milliemae | @milliemae | May 8, 2023

We just have to put our worries in Gods hands and believe. We have to realize that we have blessings each day. Stay strong.

pattyinal | @pattyinal | May 9, 2023

In reply to @rjchambliss5 "“Kind of a blessing that my husband doesn’t always remember what I fussed about;) “ I..." + (show)

They hold no grudges 🤗

marye2 | @marye2 | May 9, 2023

In reply to @meitsjustme "What you describe so well is just what I'm feeling about my husband's losses. The fact..." + (show)

I also aspire to be this way...as much as I can manage. I have to forgive myself as I have my own needs when my intentions slip.

mwhite0707 | @mwhite0707 | May 9, 2023

I am in a very similar situation and I am struggling. Thank you for opening this up. I’m so sad…..

bestofthebest | @bestofthebest | Mar 12 12:15am

I’m new and feel so comforted. You love, and that’s a big deal to hear. You’ve experienced all the grueling changes I’ve seen. I thought he was dead this year when he disappeared one night in freezing weather with just a t-shirt. I thought if we hired a nurse and a chef (!) we could stay here together. We didn’t do that, and now I regret it. We - carried on longer than we should have. One of you said that a Mayo Clinic doctor recommended that they hire whatever services they could and enjoy the times that were left to them. DO IT. Take the care you need to keep going. It is tremendously hard on the ground. You will know when you’ve hit the wall. Look for what’s best out there, and just leave a deposit so you can enjoy the best of times when you’ll BOTH get the care you need. That’s hard in lots of ways too. You love. Bottom line! — “the best of the best” (that’s what I call the HIM I miss)

scupper | @scupper | Mar 12 8:34am

In reply to @bestofthebest "I’m new and feel so comforted. You love, and that’s a big deal to hear. You’ve..." + (show)

I am also new to the Mayo site and see that much of this activity was last spring. Hopefully, others will rejoin the conversations. Like so many, the symptoms were evident well before a diagnosis. Some days I was convinced I was imagining changes...other days, I just knew. We have an MCI diagnosis and at this point I am not interested in further testing. He is 80yo, on medication that may slow the trajectory of the disease, and the progression is uneven. I did begin journaling a year ago and am trying to journal more often. It is a better chronicle of where he is than anything a doctor can tell you. My friend told me that no doctor can tell you what to do or when to do it because (s)he is not living with this diagnosis every day...it is easy for them to say "go live your life and find some joy together"...wonderful advice unless your spouse is having daily meltdowns! I am struggling with anger issues and how to maintain a sense of calm because that makes the days go better. At some point, perhaps, you stop trying to control this diagnosis, and let the anger and disappointment go...but that feeling of losing yourself can be overwhelming. There are statistics that point out the extremely high number of spouses also diagnosed with dementia...stress of being a caregiver? sharing of life styles over years?
Are you familiar with Teepa Snow work? She has videos on Utube, books and lots of training pieces that are very helpful. She also does some good work around stages.