Recent MCI with Alzheimer's diagnosis for my (54 yr old) husband

@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.

@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.
☺️🌻

@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

@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.
☺️🌻

@ojacobs08 Listen to @judimahoney regarding when you meet with the attorney things to put in place. I reached out to her earlier and she has a lot more knowledge since I haven't completed that yet. Yes, my will and estate plan is done too, but with my husband's MCI, now I'm in the dilemma if something happened to me, and I passed first, he wouldn't be able to be my sole executor. His medical diagnosis has clearly changed the landscape of who should be the executor (if I passed first). Now I'm forced to think about the blended family dynamic and making sure all of our kids from previous marriages, are covered in the will, where no one can make changes. It's all so complex. I'm reading about "there will come a time when a person with Alzheimer's disease can no longer manager their own affairs so I need to go back and have a discussion with the estate planning and/or elder care lawyer, about all the things required that I don't know or haven't considered. I think we just have to take things in stages, because it is overwhelming, why I have decided to wait until first of the year, to dive into the whole legal aspect and make sure that what my husband and I have put in place, in sound mind, still is applicable. I'm reading a Harvard Health Publishing "Understanding Alzheimer's A complete guide to reducing risks, targeted treatment and effective care. They have a section on "Legal Decisions to Consider" - the need for us as caregivers to plan early to protect our loved one's wishes - and our peace of mind.
Best, Karla

The books I have found most useful so far are The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path by Emma Heming Willis and The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss by Nancy L. Mace.

I have found amazing support on this site.

Other advice would be to talk to a friend or two that understands what you are experiencing, and with family and trusted doctors.

My husband is not on Lecanemab or Donanemab infusions because he had evidence of a few brain bleeds following tests. We are going to revisit this with his internist and neurologist soon. He is using a daily Rivastigmine and seems mostly stable right now.

Here are some things I try to focus on….being patient and gentle, simplifying my life and having fun. This is a long unexpected journey. It takes a lot to stay the course.

@kjc48 Thank you. I have always been in charge of bills so I am very grateful for that. There have been recurring amazon purchases so at least they are returnable. His neuro said he's got MCI w/Alzheimer's and IS in the beginning stages of dementia. We were not prepared to hear that last part was not expected. Thank you Karla for your kind words and support.