Dealing with a Spouse with a “Mild Cognitive Impairment”
My husband was diagnosed with MCI in 2019. He is pretty independent, just forgetful of time, dates, location of places, anything electronic & events from our life together (we’ve been married 52 years). It’s all just getting to me. I find myself wanting to be alone so I’m not continuously reminded of these changes. Because my friends/family are out of state, working, or involved with their own families, I really have no one to talk to so I’m seeing a therapist twice a week to deal with the sadness, anger, grief I have over his condition. I just wonder if other women find themselves in this position & how they are dealing with it.
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Seems like being married over 50 years is a common thread here…my wife has been diagnosed with Mild dementia and subsequently Alzheimer’s confirmed and we have the opportunity to start the donanemab infusion therapy. Would appreciate feedback from anyone whose spouse has had or is currently receiving this treatment..big decision we have to make soon
Thanks
Joe
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5 ReactionsComing back to this group after some time away ….
I initially joined to learn more about MCI since I feared my husband was developing it. I decided not (yet!) but we are now dealing with a potential TAVR to treat aortic valve stenosis which we think is causing his extreme fatigue and general mental slowing.
But reading through recent comments so many of us are in the same place .. married 57 years in my case, foregoing walks together, tiring of repeating oneself and then deciding not to bring the topic up which leads to silence, and so forth. I hear you all!
I am fortunate that I can still leave my husband while I go out but I do miss doing things together and feel guilty leaving him at home while I’m taking a break. I’m sure you all do too. But we have to keep ourselves fit for the road ahead, and there is strength in numbers!
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9 ReactionsThank you to all who have posted. My husband, 80 years old, has MCI. Diagnosed 2 1/2 years ago. So far his abilities are pretty stable
but his ability to process requests seems to be getter worse. I have over time changed my expectations such as not asking him to do anything related to budget, bills, financial issues. I would appreciate any tips you all have regarding adapting to verbal difficulties, checking on his welfare etc. I try not to be too afraid for the future but am still sad, as you all are, about the changes in my darling active capable husband.
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9 Reactions@tuckerliko Welcome to Mayo Clinic Connect! I’m so glad that you found this site. Members on MCC share their experiences and what works and what doesn’t. Since no one on Connect is a health care professional, we cannot diagnose or tell you what treatments/medications are best. We cannot diagnose or read/understand lab values—we leave that to the doctors! Glad you’re here.
@joemurphy43 Joe, in evaluating your question, my husband isn't on donanemab but lequembe. He's in his 18th infusion - a treatment of 36 infusion. There's an article from mindthegulf.com that compares Lecanemap vs. Donanemab, I thought was helpful. Made me question, why our neurologist suggested one over the other. That's worth asking which I'm sure you've done.
I tried copying the link with no success. What I can tell you about the consideration of doing any infusion therapy, my husband and I didn't see any other way. He was hopeful it would slow down the progression of his early diagnosed MCI and still is. He's had no side effects. Not that this is a deciding factor, but the infusion therapy in South Florida is packed with people both men and women from 60-90 years old. Although these general comments may not provide the statistics we look for, it does validate the hope that comes from slowing down this awful progressive disease. Best, Karla
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4 Reactions@tuckerliko "my darling active capable husband" are words I would have used to describe my husband prior to his MCI, and then ALZ and Lewy Body diagnosis. You are in the early stage of this journey and it sounds like you are doing the right things at the right time. I would tell you to enjoy everyday with him as time will continue to take away more and more of his abilities. Is he still driving? Is he able to be left alone while you are out? Everyone's progress in the disease is different. Some are faster than others. Year three of the original diagnosis (I saw problems a year and a half prior to that) is when I started to see real changes, I had to take over all financial responsibilities and major decision making. I also had a durable power of attorney put into place. He had to stop driving, not because he wasn't a good driver, because he was a very good driver, but because of the change in reaction and thinking time, we couldn't risk him being in an accident and someone getting hurt and him being liable. It was also about that time that he started having severe paranoia to the point I could not leave him alone any longer for fear of what he might do or where he might go. This year has been a hard one as his communication skills are changing. He's lost a lot of words so we use a lot of hand signs and I ask a lot of questions...I can tell others are uncomfortable trying to talk with him and he knows it too so he doesn't really try to have conversation with others. It's hard to keep him interested in much of anything. He watches very little TV, he doesn't care for puzzles or playing cards anymore, I've tried the fidget toys, he's not interested. His world has become so small. He spends his days sorting his things or what is left of them (he is continuously bringing me items and clothes that he no longer wants) and hiding other things all over the house so "they" won't get them. He does attend a church supported Respite Program twice a week now for four hours each day (he never wants to go and I have to use another excuse for getting him up and ready, but once there he enjoys it), and that has been a blessing for him and for me. They have wonderful volunteers to be with the participants and the programs are great. He does things he never would have done before, painting, crafts, there's singing, exercise, games and he is with others experiencing the same changes that he is going through. It gives me time to get out and breathe without being on alert, to run errands and enjoy an occasional lunch with friends. My heart is so heavy for this at one time, outdoorsman, life of a party, entertainer with stories, helper of anything that needed to be done, active with our church and friends and family man...and I miss him so very much...My advice to you would be to take each day as it comes, roll with the flow, try not to argue, redirect or walk away, try to keep the atmosphere calm and happy. Make sure he gets rest throughout the day. Mine has gotten to where he needs a good afternoon nap or he gets cranky before night. Go out together, for walks, or to eat, try to keep him involved in life, but at the same time keep it simple. My husband cannot handle busy and complicated. Let him know always that he is loved and that his life matters. Do I manage to do all this everyday, heck no, and we have had some rough times because of it, but everyday I am learning more and more how to make life manageable. It is a very hard journey and you never know what each day will bring. Be prepared for the unexpected. There are a lot of good informative books that you can get that will help. I suggest you start with "The 36 Hour Day." I would call it the Dementia Bible. It will help you understand what is going on and give you an idea of what is to come. Keep your family in the loop and hopefully they will want to help you in anyway that you may need them to. Most importantly, stay connected to Mayo Connect. There are wonderful people here willing to share from their experiences and willing to offer hugs and encouragement when life is hard. I hope this has been helpful to you. God be with you and bless you and your family.
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12 Reactions@labrown My life resembles this in many ways, thank you for sharing. Helps so much to learn what others are doing, and to be reminded to take it a day at a time.
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4 Reactions@labrown One day at a time is right. Thank you for sharing. Our life is also changed, as my wife slips further and further away. We are aging in place, and I'm 24/7 unpaid caregiver, primary cook and bottle washer, etc., and I also do the deflection/walk away routine, when the going gets angry. I found the Savvy Caregiver program at Dartmouth Geriatric Center of Health, very helpful. We also have a Home Health Caregiver, for five days a week, which makes everything much simpler for me, while the caregiver is here. It's not an easy road.
Tom
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8 Reactions@n82821 It helps knowing we are not alone on this journey….so many are in similar situations. When I am feeling down it is good to know my Connection family is just a comment away!
Thank you for your response.
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6 ReactionsMy friend is 70. Flew in to do some business and I volunteered to pick him up at the airport. I was in the "Cell phone lot" waiting and waiting. He texted me that "We have landed". He texted me "Am behind 120 other people getting off this plane". Then he texted me "At baggage claim". Then nothing else until he texted TWENTY minutes later: "Have I missed you?".
The weird thing is when I got this text and went get him: found him standing at the curb outside "Arrivals". I asked him: "Why did you text and tell me you were at baggage claim"? He said: "This IS baggage claim". I said: "No, baggage claim is INSIDE and this is passenger pickup at the curb". He just said: "No big deal...!" I had sat there for 15-20 extra minutes waiting.....so I thought it very odd he would not have texted me "Am outside at the curb...".
He has also begun to fixate so MUCH on a task that he forgets other important things going on during the moment....it is as if he is unable to multi-task any longer and if interrupted he gets angry. This has been going on for more than a year.
He has been doing odd things like this for about two years. His father had dementia by age 72; do you think he has something going on? Anyone else ever have this experience?
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4 Reactions