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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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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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13 ReactionsHello, @milomiles I commend you for the courage of your post!
As caregivers we always know more about what our loved one is going through in changes than we like to admit, I think. At least that was true with my wife and me. Driving was a tough one, but I also know it was crucial for my wife to stop long before she thought she should. There are too many dangers on the road to have impaired drivers out there. I also had to take over all finances in order to protect what we had left. Again, it was too important to allow her to continue with that work for the family. Thankfully we also did all of our end-of-life planning early, which turned out to be critical as she suddenly was not competent to sign those kinds of legal documents.
All I can say about the future is it is not promised to anyone, nor are we guaranteed our early dreams of how it "should" be. We can only celebrate that we have the future we do. While terribly hard to embrace, I believe it is important to celebrate what we have day by day.
As far as talking about my wife's condition, it was her desire to not share any of the specifics of her journey beyond immediate family and just two friends. Others find it therapeutic to publish their journey and/or share it widely. That was just not her style. Because of how my wife's mental capacities deteriorated, most of our friends ghosted on us, so that took care of itself. I do believe as a caregiver it is far too debilitating and exhausting to try and cover up the shortcomings of our loved one. To us, honesty was the best policy, especially as the demands of caregiving escalated more and more and demanded all of my available energy an time. Caregiving becomes all consuming and trying to pretend reality isn't real just adds to the exhaustion of caregivers. I also made sure we gave HIPPA approval to my wife's doctors t to share directly with our adult children. This helped me not have to be the constant communications hub and they were sure to get exactly the same information I was getting from the doctors.
Thank you for posting and please feel free to ask any questions or remind me if I missed things from your post.
I wish you Strength, Courage, & Peace
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12 ReactionsWe were told no driving in 2019, but we went and paid $500.00 for a driving test by a qualified examiner that Mayo Clinic recommended twice. He passed with flying colors. Like you, my hubby was an excellent driver, and I NEVER sat in the driver's seat unless he had surgery or something different. Last September though, I noticed his driving was concerning (at times I saw my life pass before my eyes) and the testing at Mayo Clinic showed that his spatial reasoning had declined and that ended the driving. He has accepted their decision and now naturally gets in the passenger seat AFTER he opens my door and helps me in. Gosh, I love him so much and just the little things make such a difference when you are trying to hold onto so many parts of a loved one's personality. Good luck and don't be afraid of the testing - it will help to clarify things and to create a plan for the future.
You can do this! (Even when all of us wish this was not the diagnosis.)
Jan
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1 ReactionExercise is good. My hubby is 67 and golf's 2x oer week, has run and placed in several 5 KS, we both work out with personal trainers 2x per week, he does the yard work, and he walks on our treadmill a few times a week. The Mayo doctors think all the exercise is helping tremendously when compared to others with his diagnosis and in his age group. However, the mental decline is still happening, the confusion, the constant questions, not understanding words, so diet and exercise seem to help, but they are not a cure. If you saw him you would never know, but once he opens his mouth - it is obvious.
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3 ReactionsA couple folks on here have mentioned being apprehensive about going for further testing, due to effects it can have on the patient (and themselves). This is pretty much where I am at. My husband was diagnosed with MCI last Spring and I have seen some memory changes recently (his older sister has full Alzheimer’s) The kids want their dad to have further testing…I’m not so sure, when we don’t have easy access to a place like Mayo and I’m very afraid of what it would do to his mood, self-esteem, outlook etc. I wrestle with this every day (Should I push for more appointments?). Meds for this have very mixed reviews. I appreciate having this group! Best wishes to all of you.
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2 ReactionsYour situation sounds so much like ours. Been married 49 years and I’m just not sure the right path to take - let things continue as they are, or seek more help, possibly get a very scary diagnosis for which little medical help is possible, and demoralize someone who has been so strong all his life, even further. He is aware of his memory issues…ran his own company, always handled our finances, and I now am doing the same thing you are…following along, trying to be sure bills are paid and commitments are fulfilled. I have no advice for you, only a hug.
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4 ReactionsThank you for your message. I need it today, as my husband also has Lewy Body Dementia, having been diagnosed 2 1/2 years ago. He has developed Capgras syndrome over the last few months, not recognizing me as his real wife, "she" apparently lives in his "real" house "down the street & around the corner". Our kids & grandkids aren't "real" either, other people live here with us, the "company" or he's always reminding me what "Pauline" (meaning his "real" wife, not me, though that is my real name) has said or done. And he's lost memory of the last ten years. I need your message today, because we are in the process of scheduling home health aides for him 3x a week. We are waiting to start until one is assigned for the 3rd day, Saturday. I feel guilty because he is physically well, but his cognitive abilities, executive functioning, memory, communication skills, etc. are greatly deteriorated. Also, I know we caregivers can't "fix" Lewy Body, nor can it be "fixed". As a "fixer", "doer", "achiever", that makes me feel like a failure. So, thank you again for your words. They uplift me.
Pauline
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4 ReactionsI’m sorry that both you and your husband are dealing with this. Which practice group at Mayo diagnoses and treats this condition?
I think the neuropsych testing is important to create a baseline for the person’s mental status, for comparison with future testing. My husband’s testing was 8 years apart and looking at the DATA really helped me realize and accept what was happening and what it meant. He was very good at disguising his deficits and I was the frog in the boiling water, making ongoing adjustments but not realizing how bad it was getting. Your PCP can refer you to someone in your area, It takes about 3-4 hours over 2-3 visits, with plenty of breaks. My husband really enjoyed the testing- lots of puzzle-type things, word play. The tests are set up for thinking skills, there is no “wrong” answer, so the person doesn’t feel they’ve done poorly or get upset at a difficulty.
My husband has a breakfast/lunch place he loves, so I always talked up going there after a session- keeping things positive. He likes and trusts his PCP, so I just told him Dr wanted him tested for memory, no big deal.
Later, I met with the neuropsychologist, by myself, to go over the results and the comparison with the older testing. I though that was best- no need to upset my husband, he knows his diagnosis, but thinks it’s just some memory problems. I could ask straight-forward questions, as many as I wanted, to more fully understand what was happening and what the future would probably look like. I shared the results with close family. The DATA was really helpful for their understanding too. You see stuff, but you don’t really get it/understand it.
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5 ReactionsThank you so much for this reply! I was not clear in my first post…we have had the cognitive testing, several hours over a couple appointments. Once with a NP, and two appointments with different neurologists, plus a neuro-psychologist. So the testing results are recorded…and we will go again at some point. We also joined a zoom group with the Alzheimer’s Association, but some of the folks were so far beyond my husband’s diagnosis of MCI that it upset him to see them. We ended up not staying with the program, though I found it helpful and supportive. Your idea of speaking with his PCP to suggest repeat testing does make sense. I hate tiptoeing around behind his back, as we have never done that, but perhaps the benefit is worth doing that. Again, thank you so much!