New to this. DH with MCI due to AD
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!!
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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.
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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.
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@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.
HB3 -
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.
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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)
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@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!!
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@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!
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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.
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@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.
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You have received lots of good advice above. Just adding …
Vacation. I am not saying not to go. We have. Just be aware that DH may not do as well in unfamiliar surroundings. DH here got lost returning from the ice machine at the end of the hall. I found him quickly as he hadn’t left the floor, but I never let him out of the room alone again. You need to think through things as if you were bringing a toddler. Plan for the worst. Enjoy the best.Infusions — DH here is on month eight of Kinsunla. So far no ARIA problems. As I understand it , the risk of ARIA varies with your APOE gene makeup. DH here has what his neurologist considers a low risk.
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Welcome. Sorry about your husband's diagnosis. Ditto on the book "The 36 Hour Day" which was recommended by a nurse. Search online for dementia caregiving videos. Tam Cummings & Teepa Snow have good ones. Learn all you can about the disease and come here often for info, support or to vent. Your husband may be afraid to go on vacation. Even in early stages my husband didn't do well in unfamiliar surroundings. Going out to eat in a restaurant was difficult for him and caused anxiety. Anything you can do to take care of everything and choose a place that you've been to before and that is not overwhelming might help. If you get him to go and he isn't doing well, be prepared to return home. Anxiety and depression is common even in early stages.
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@JJ401 Interesting point about vacation. Lately, I've noticed DH has been forgetting where things go in our kitchen cabinets and our seasonings. I will be hyperaware on vacation now that you've mentioned that—thank you. Saddens me so much because he has always been amazing with directions. I'm usually the one getting lost on vacation. I've been concerned about going exactly for this reason. He has always been the one to take care of everything on vacation.
DH said he is not even going to consider infusions until after our very busy October but it's good to know about your DH experience with Kisunla. May reach out again!! Thank you again. Appreciate your insight!!
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Thank you for your response and sharing your insight. The book is on order!! It's too late to cancel our vacation and we are both looking forward to getting away. He said he wants to travel as much as possible before he can't remember our trips. I thought trying one is the way to see how he does. I will be laserly focused on keeping him safe and supported. Although the disease is in its very early stages, I do see signs of him forgetting things and the anxiety. I have found a great community here and intend to check in often. I'd like to find an in-person support group as well for myself. He said he's not ready for support groups yet. He's still processing the diagnosis. I spoke with a counselor yesterday found through my employer. I've had severe anxiety since the diagnosis, which I've never had in my life. It was very helpful to talk. Thank you again so much.
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My DH is in a support group for people in the early stages of Alzheimer’s and I am in a caregiver support group. I highly recommend you both join one. It’s helpful for both of you to be able to vent about this terrible disease and each other without the other partner being present. I have never attended my DH’s group but he always says it is helpful to talk to others who can relate to what he’s going through.
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I feel you. Where to start… My DH was diagnosed in December 2024, it was tricky to find a neurologist and then to get him to go to the neurologist. He went to 'prove me wrong'. I had noticed uncharacteristic behaviors for several months, but the behaviors were not clearly anything in particular. I would talk to my therapist about the behaviors and my two best friends, just to vent.
It's still early, but definitely progressing. It was so difficult for all of those months because our three grown children were in denial and disbelief. It was very lonely. It actually still is. It's so hard to think of the relationship that has been left behind, the unspoken 'knowings' that you used to share, the loss of experiencing 'fun' together, the confusion in watching a movie or episodic tv show and trying to explain it… so much….
We've been married 52 years and are both 71 chronologically, but oh so many years apart physically and mentally, now.
This disease definitely takes a village, and boy is it hard to find and pull together your village. It's not for the faint of heart. I'm just, in the last 2 or 3 months, gaining some momentum, and it feels good, but i know it's just a drop in the bucket. There's so much scary stuff ahead, and thinking too much can grab you and temporarily knock you down.. Researching, alone, is so overwhelming.
Well, I've rambled on about nothing, but I have the reassurance that I'm not actually alone in this.
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Time is not on your side as far as legal and financial documents are concerned. You need to take care of this immediately. Get a list of all accounts in your husband’s name that he now pays. For each account get the log in and passwords. You will need to take over all finances. Take to your financial advisor and account and tell this person what is going on. This is all overwhelming, but what is worse is not getting everything in order and living with that nightmare!
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Thanks so much for your input. It does feel very lonely. I'm typically in control, level headed but boy have I experienced anxiety of what's about to come. You're not alone if you can find a support network that allows you to vent; perhaps others in your same situation. I'm searching for a support group that may help. I wish you the best!! I've found great responses on this blog in the short time that I've posted.
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We're did you fine information on support group for your husband?
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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