New to this. DH with MCI due to AD

whytever · September 17

Hello. I'm so glad I found this support. My DH, 66 yo, was diagnosed with MCI due to AD in July 2025. I noticed ST memory loss for about 5 months prior, had his PCP do a MOCA where he scored 24/30 which led to Neurologist, PET (significant beta-amyloid plaque), pTau .33. He failed Aricept due to GI issues; is now on Namenda. We've only told close friends. We completed our POAs, Wills, and was able to get him on Medicare B with supplement. He's unsure if he wants to do the anti-amyloid infusions at this point due to ARIA concerns. We've scheduled 2 upcoming vacations. However, we are both so devastated. He's beginning to withdraw from me; doesn't want to talk about it. I feel so bad about this. Our life was not supposed to go this way. We've been married 30 yrs and I'm about to retire. What support should I seek? Has anyone used their local Alz Support groups? Any other guidance?? thank you!!

H1235 · 1:14AM

It sounds like you are doing a good job. You didn’t mention a living will. If you haven’t done this it might be a good idea. I personally find the unknown very scary. So my advice is to learn all you can about dementia. Some issues many be easier to cope with if you understand the why or have an understanding of techniques that may be helpful. Some examples would be distraction, therapeutic fibs, not arguing, and learning about anosognosia. I know it’s early yet, but it’s probably a good idea to consider some longer term plans. Will you try to keep him in your home as longs as possible, is your home going to be a good setting (lots of steps, second floor bedroom, lots to maintain)? I have found this site very helpful. There is definitely an understanding here that we are not alone.

Michele P · 10:22AM

I am sorry you are here with us. I understand what both of you are going through. This is a sucker punch and devastating. Talk to his neurologist about the depression. Medication might help. You definitely want to get medical directives in place. Five Wishes is a good place to start the discussion. Speak to an elder care attorney. Think about who would take over your husband’s care if something were to happen to you or you couldn’t care for him. Get a plan B in place. Tour assisted living and memory care facilities, and get your husband on a waitlist. The refund should be refundable. None of us know what this disease will bring us. At some point, you might not be able to care for him at home even with in home care. We used Oaisis Senior Services for assistance finding a memory care facility and in home care. Look into what day care centers are available locally. Driving with become an issue. If he gets in an accident, you can get sued for everything you own. There are agencies that certify if he is capable of still driving. If he fails, they will take his license. Find out if your insurance company will cover an accident. Most will not with the diagnosis. If your husband is a veteran, I can help you more. Ask questions. We will help you. Look into a local support group and/ or a therapist. You will need support from others. What most of us have found is that we are in this alone. Read The Calvary Isn’t Coming by Bill on the other caregiver thread. It pretty much sums up our life. Take care of yourself.

harshedbuzz · 11:01AM

@whytever

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

As MOCAs go, 24 would indicate fairly early in the disease unless your DH came to Alzheimer's with a great deal of cognitive reserve. People tend to think of dementias in the context of memory loss but there are associated traits in your DH that may be more impactful at this point than short-term memory glitches. Apathy, inertia, poor executive function, reasoning skills and a lack of empathy for others can strain even good relationships at this stage. Additionally, the diagnosis itself and the bleak future it holds often trigger depression. FWIW, depression in men often looks like withdrawal, irritability and a short temper. Medication, like an SSRI might help him feel better.

When one person has dementia, both parties in that marriage live with dementia. You will be as impacted by this as he is. You say he doesn't want to talk about it. That means it would be prudent to find other people or places to discuss the impact of dementia on both of you. That might mean here— we're a terrific bunch. Or you might want to discretely seek out an IRL support group or therapist. When dad was diagnosed, I got mom in with a psychiatrist for medication, a therapist for talk therapy and an IRL support group that was mostly spouses who were living this.

Many folks here encourage those in the earliest stages to tackle their bucket list while they can. If you were looking forward to the trips, they might be a nice break for you both.

HB

persevere · 1:08PM

I don’t know what kind of life you have had up until now. We all have had things to deal with but nothing will prepare you for what is to come. Be thankful for what you have had. Although there are some things that are worse, perhaps like losing a child, there aren’t many. Even terminal illnesses like cancer I think are easier on family and caregivers. These are the things I try to tell myself to get through the day. Get the book The 36 hour day. And try talking about it while he still can. My wife and I did not talk as much as we should have. Now, it’s impossible.

whytever · 4:02PM

https://alzconnected.org/discussion/comment/253827#Comment_253827

Thanks so much for your response. Very much appreciate your encouraging words and insight. Taking each day as it comes currently and anticipating the future. Although it is early in the diagnosis, his Neurologist states that he does have AD which ultimately will lead to decline. Your tips are appreciated. :o)

whytever · 4:42PM

https://alzconnected.org/discussion/comment/253858#Comment_253858

@Michele P thanks so much for your very thoughtful response. Although he is very early in his diagnosis, you raise great points to begin thinking down the road. Very much appreciate your suggestions AND your support! Will reach out again!!

whytever · 5:18PM

https://alzconnected.org/discussion/comment/253861#Comment_253861

@harshedbuzz thanks so much for your response. Despite its early stages, his Neurologist said that decline is inevitable but when remains to be seen. I do appreciate the network of support. DH is not ready for a support group, we've discussed that, however, I feel that I do which I've been searching. I'm grateful for this network and your insight has been great. Will be in touch! thank you again!

harshedbuzz · 6:57PM

https://alzconnected.org/discussion/comment/253886#Comment_253886

It seems like support groups are mostly targeted to family caregivers— spouses, adult children and siblings. There are Memory Cafes which might be an appropriate couple option when your DH has progressed further. At these, generally there are breakout sessions for the carers with an activity for the PWD or something like music and refreshments to be shared by all.

Given your DH's relative youth and earlier stage, attending a support meeting with other PWD who are likely older and more progressed in the disease might be upsetting for him.

HB

whytever · 7:58PM

https://alzconnected.org/discussion/comment/253893#Comment_253893

@harshedbuzz excellent point. I'm just feeling really anxious about the future. There are very few positive, long-term stories connected to this disease. Being an RN doesn't help either given the extent of my knowledge and experience. Thank you again.

New to this. DH with MCI due to AD

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