recent MCi w/Alzheimer's diagnosis for my (54 yr old) husband

@ojacobs08 Welcome to Mayo Clinic Connect, a place for answers based in science and personal experience. I can only imagine how difficult it was to get such a diagnosis. Friendly support you will definitely get! I’m telling a few members that you are here so they can start answering your questions. Let me ask @kmliste @kjc48, @2me.
@dederickve

@becsbuddy thank you🩷

ojacobs08, As a former caregiver for my wife, I can only speak of my own personal experience. However, there are a number of good books that you might consider to help guide you through this very difficult journey. The one I used was "The 36 Hour Day". As to questions to ask the neurologist I never had that problem, Ann was almost immediately in what was probably the first stages of dementia when we became aware that there was a problem. My first act was to take the car keys from her - she had no problem giving up driving. However, you have come to the right cite for good advice and guidance. There are many others here who will be able to provide you with answers to most of you questions, as Becky has indicated. One of the first things that may help would be to contact a local Senior's office in your county/state, to find out what support may be locally available, if and when the time comes that help is needed. Hopefully you get positive results from your visit tomorrow with the neurologist. Take care of yourself, think positive - and please, stay active on this cite, it will be a source of support or a place to just to vent, or have others to just listen with possibly a bit of advice.

@ojacobs08 I am sorry you're at a loss and know firsthand, as well as all others on this site, how overwhelming any memory loss diagnosis is, (young or old) whether MCI, Alzheimers-Dementia, in whatever stage they're in. It's frightening especially with three young teenagers in the house, which can be helpful for you when you share with them what's happening to Dad. When my own husband was diagnosed last year with the APOE-4 gene as well, I was devastated, frightened and had so much fear of the unknown. The best thing you can do, is get with the neurologist, which you're doing, find out if he qualifies for any line of treatment. And start treatment if you can. My husband is on lequembe every two week infusions - his 27th right now. Either way, with or without treatment, depending upon whether it's Mild Cognitive Impairment or further along, you want to get as educated as you can so you aren't as fearful over what's happening and what might come. Even though my husband has MCI in its early stages - because it can be a pre-cursor to Alzheimer's-Dementia, I joined this blog, and I'm religiously on it, every day. I read everything I can and I post. Posting is powerful, it helps you and others. I get emails from Dr Natali Edmonds, a gerontologist who specializes on Alzheimers Dementia, and her UTUBES are so helpful. You can join her "Collective" group which I haven't done yet. She explains what's going on in the brain, why they do the things they do, how we should handle their behavior challenges, etc. Teepa Snow is another one, that I haven't tapped into, but many on this site will tell you to do so. She has a series of education online. Mayo has an Alzheimers Dementia book, I purchased from their online store. "Loving Someone who has Dementia" is also a very good book, to help get educated. I just purchased, as mentioned above, the 36-hour day. I haven't navigated through that yet. It's quite thick but easy to dive into sections that you might want to read about. Alzheimers.org has a wealth of info. Many on this site on part of blogs there too. I contacted my local hospital and I personally attended their six week classes. Call the hospital, see what classes they have for memory loss, Alzheimers-Dementia. For my husband and I we haven't told many neighbors where we live. But we've been renting so we haven't been at the house. We just didn't want people to know where we lived, for a variety of reasons. I remember, when my neighbor got Alzheimer's, their friends seemed to fall away. People are frightened, I often think due to their own mortality. We did however, tell our adult children, and in reading some of the powerful posts on this site, I think telling them honestly what's happening to Dad, trying to normalize things as soon and as much as possible, getting them to understand and not be frightened, is as important as you understanding and trying to remove your fear. You need support, and they love you and Dad, and therefore, will be a great support structure to you. I started working with our attorney on updating our estate plan/will. You'll want to the same, to make sure you're covered, and all the medical power of attorney, etc., are all in place. I'm still trying to get educated on that since we're a blended family (kids from other marriages) and had to put that on hold until first part of the year. Noone knows except God what our path is, so I try every morning to have courage to face the day, clarity to know what to do, and I ask God every day, to help lead my way. I pray alot because I was so fearful for months on end. Don't be frightened, stay close to the doctor, if you need a second opinion, get one. Just rally around your kids and normalize what you can so you have a support structure which helps in not feeling so alone. I hope this helps. Many on this site, have surely helped me. Thank you.
Best, Karla

@ojacobs08 - My heart goes out to you and your family! I’ve seen posts on here from others who started this journey no one wants to be on, at young ages, similar to your husband’s. My husband is older, so I cannot speak to that, except to say how very sorry I am. Caregiving is very lonely, even with support. Please see if you can find a good therapist, or join a local caregivers’ group…possibly the neurologist’s office can give you advice on good resources. Our Neurology department has a social worker who has been invaluable to us. Teepa Snow is a great place to learn more…just Google her name.
And though this group is not “in-person”, you will find its members so very caring and supportive. Let us know how the neurology appointment goes.

@ojacobs08 PS, I wanted to also add, get a good handle on your finances, banking, the way your bills get paid through bill pay, etc. or if he's personally paying them online. And know all his passwords. If and when you need it to take over. My husband was hacked into back at the end of 2025 and I do believe it's because of the MCI, and just not knowing what he was clicking into because he gets confused especially with TV's, phones and PC's. Most of our bills are bill pay directly to the bank but get involved (if he's solely the one who has been doing it). My husband still doesn't want to "give up" his role paying the bills, but we have a system now, where we don't pay anything direct without both of us involved in the transaction. For now, it's working. I hope. On your question about what to ask the neurologist, when we first went to the primary, I sent her a note in my husband's portal, on what was happening. A quick summary of the things he was doing that became alarming. When we got with the neurologist - after the MRI and Pet Scan, testing, we had the results. And the doctor diagnosed quickly he has MCI - in its early stages. I don't remember asking a lot of questions, (I was at a loss too). But what we did know quickly was that we needed to do something to try to slow the progression of the amyloid plaques down, - why my husband wanted to go on the lequembe. By now, you should have met with the neurologist. Hopefully, that's given you some course of action. Reach out. We're here for you.
Best, Karla

Do we have to meet with a neurologist? My husband has what is probably early MCI according to our home health speech/cognition therapist who met with him at the rehabilitation hospital when he had broken his hip. He is 81 yrs old. His hip is healing quite well. Our counselor of 30 yrs agrees with the rehab therapist. Our primary doctor is fiddling around with his meds to see if there might be a problem there.
He is in denial and tries to dismiss the therapist's suggestion that he may have some memory issues. I see it with small things where I have to remind him of appointments and other things.

@frannee
You don't have to meet with a neurologist, however there are other tests they can order, try meds/scans, etc. if you meet with one it just allows you to have more information to help with decision making.

@ojacobs08
Everyone who has replied already has given great counsel.
Here's a summary that I agree may help:
-read books and educate yourself
-take classes, through Alzheimers Association or free videos online like Teepa Snow
-look into local support groups through your medical facility or call Alzheimers Association's 24/7 hotline to find one near you (and Mayo hosts a weekly virtual support meeting for Caregivers on Thursdays, look under Events link on Caregiver main page on this Mayo blog)
-even though your husband isn't a Senior yet, you may want to check in with your local Senior and Disabilities group, or social worker
-Karla mentioned qualifying for certain treatments, and you may want to join a research study at a local university
-I personally think you should tell your children and parents. Yes, it will make them sad and upset and may increase their burden, but you NEED their support and they need to know what is happening to their loved one (they may be more upset later when they find out you didn't tell them earlier).
My husband also didn't want me to tell anyone, but I told him no, I needed the support and loved ones and friends (true friends) will be there for you.
-making sure you designate Power of Attorney and make tough decisions now regarding Advanced Directive, your Wills, and decisions regarding what type of care and ultimately a facility that he'd want to be in (if it comes to that).

This is a lot, so pace yourself, begin taking anecdotal notes regarding his 'off' behaviors that will help medical personnel, keep exercising and taking care of yourself since you'll need to be physically and mentally strong (and see a therapist experienced with working with caregivers to help you process all this).
Remember to take a minute for your interests and passions when you can, because you will begin to lose yourself as more and more demands are made of your time.
All the best to you, and keep checking in here; we got your back.
☺️🌻

@kjc48 Thank you for these suggestions. I enjoy reading so these books will be added to my list. We updated our will/trust 2 years ago but will reach out to see if there is anything more we need to do. Thank you for your encouragement. I am so grateful to have found this group.