My Husband Just Diagnosed with Early Onset Alzheimer's
Hello everyone, this is my first message, and I can use any advice you can spare. My 59-year-old husband was just diagnosed with EOA. We're both devastated. He was told he had ADHD a few years ago, plus he wears hearing aids (he's lost 90% of hearing due to being a former construction worker) so we thought his forgetfulness, etc. was due to that, plus normal aging.
He said he felt it was much more than that and came across an Alzheimer's study offered from a pharmaceutical company. After many tests they accepted him to their study of a new drug. That's how we learned he had the disease. Although we are grateful that he was diagnosed early, we are numb now. It's only been 10 days and our thoughts and worries are overwhelming. It feels like we are drowning.
My initial next step was to try to come up with an "Action Plan" on what to do next, but again, I'm overwhelmed. I have depression and anxiety since I was in my 20's so I feel that only adds to my challenge. Does anyone have a plan you can share with me? I need help and not sure of next steps.
Thank you in advance, I truly appreciate any advice.
Jan
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I hear you and have been in your shoes!! We are in year 3 of this early ALZ diagnosis of my husband. He was 62 when we received the news. In my experience with this awful disease, here is the first of many on the "Action Plan": First: Start with getting him SSDI (Social Security Disability Insurance) ASAP. Alzheimer's is one of the terminal illnesses that qualifies him for full benefits from day 1 of his diagnosis. After Social Security approves you (through a variety of questions and forms) you will have to set up a "Rep Payee" account at your bank so that you can manage those SSDI payments he will be receiving. This money can be spent on basically all your needs (bills, food, transportation, medical care, etc.) Also, once he is approved for SSDI he will also receive Medicare automatically after a set period of time. Again, you will have to choose the medicare plan once that ball is rolling. Do this first and if you want, I will tell you what is next. Just take one bite at a time and this is a big one to get off your list.
God Bless and let me know if you have any questions.
Lisa
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The only thing I can recommend at this time is to get the book (The 36 Hour Day) and read it. It really helped me when we first got the DX on my DW.
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Get your legal affairs in order: wills, medical and financial power of attorney- you can be his, but he should not be yours. Get beneficiaries done for all financial accounts, set up joint accounts if you don’t already have them. Start shifting the responsibilities for bill paying, etc to you. Discuss whether you are interested in down sizing or living closer to family.
Travel while he is able / that will cease at some point. Talk about what his wishes are for invasive treatment of any illness that crops up.
Do NOT promise to keep him at home until death. Instead promise that he will always be taken care of and you will always make sure he has what he needs7 -
it doesn’t help much but my thoughts are with you. You have already had some excellent advice here and more will come. Just know that you are not alone this is a wonderful forum for support and guidance. Stay in contact.
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In the search bar all the way at the top, search “early onset” and you will likely find more good information. My DH is 74 so I can’t really contribute much to your experience except to say I’m sorry you find yourself here. But this really is a good resource, so keep reading and posting.
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Get a elder law attorney - even though the 50's aren't "elderly" :) since they are versed on the right forms you'll need and how to structure your assets so that you can qualify for medicaid for placement options.
Your life can be age wise at the 50 per cent mark so it's important that you plan ahead for your future needs.
I wouldn't start retitling accounts etc before you game plan with the lawyer -each family is unique and you need to consider taxes, your specific family needs etc. Esp. don't follow the advise of a bank etc.- they will tell you the easiest way that their systems can make a change NOT whether it is the right call to maintain assets and minimize taxes.
Most attorneys will do a brief consult and explain fees. Not inexpensive but those dollars spent can save you much more in the future.
A directory of lawyers with the speciality :There are other excellent lawyers that operate in that arena but these you know specialized.
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I am so sorry you both are going through this tough situation. My husband was diagnosed with EOA at 56 and we are now in year two since diagnosis. I too have had major depression since I was 24. It seems twice as difficult to handle this diagnosis along with my own. My advice is stay current with your own therapy/meds. Get your legal affairs in order asap (including having him detail what he wants for his funeral). Apply for SSI Disability and get an attorney (this whole thing took us 18 months before he was approved). Get the book The 36 Hour Day as it’s very helpful.
For my husband I’ve found that staying in a routine helps him feel better about how he’s doing. Also, there are 4 things that generally make Alzheimer’s patients happier. Those are sweets, babies, music, and puppies. Puppy yoga is an activity my husband really enjoys.
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Hello Magoo22
My DH was diagnosed with Mild Cognitive Impairment due to AD in June 2025. He was 66 yo. when diagnosed, now 67. I'm 58. His mother died of AD. He is positive for the APO4 gene, + p-tau and beta-amyloid plaque on MRI. We were so very anxious, fearful, sad. Since the diagnosis, my husband found a great support group from Facebook, "Paint Clover Purple" which meets every Tuesday at 11am via zoom call. It's done wonders for him. It's only for those who have early onset alzheimers. I suggest your husband check it out. I sought counseling for my anxiety, sadness, fear, grief and have also found a support group network for caregivers. I did go on medications for the anxiety because it was deafening which has helped me. Perhaps for you consider these tactics. For my husband—I describe his stage as "forgetting parts of the story." I repeat alot but are still enjoying life. We both ride motorcycles and he will continue until he cannot. We travel ALOT which has helped. 1 year later, we are hanging in but I'll admit—I'm grieving the loss of what I know is going to happen. You and I are in the same shoes. It's very scary but I do suggest, from my recent experience, that you seek support, networks where you can discuss your concerns, fears and obtain info/answer questions. Seek your church if that helps. Get your finances in place, Wills, POAs, etc. I live in Greenville SC. You? Hang in there. Truth—it doesn't get easier, and knowing what the future holds is scary BUT working together as a team helps, finding support from those who have experienced this helps, sometimes low dose medication helps. The book 36 hr is great but your attention span may not be ready for it. I have also found spouses of early onset AD to be more supportive merely because of the stage of life we are in. Unsure how to share contact info private but we can chat if you're interested. I hope this helps to know that you're not alone but most days you probably feel as if you're the only one going through this—you're not. This is a great network here for you!!
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I am sorry this happened to you. The first thing we did was to have him sign a power of attorney and a health care directive. That was in 2024. He recently moved to hospice. Sometimes things happen quickly.
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I am in the same situation, My DH was dx October 2025, he is 53. It took about one year of dr appointments blood tests, MRI's PET scan a Nuclear scan & spinal tap. Honestly it hit us hard at times then other times we are good. He is currently on anti-amyloid infusions every other week , this treatment is about 18 months, but after one year which will be January 2027, he will have a repeat PET scan to see if the infusions are halting the build up of amyloid proteins. This treatment is not a cure but is aimed to slow progression. He is also doing cognitive and OT therapy twice a week, it has provided me with tools to help him , he gets frustrated so easy and angry. His short term memory is mostly affected, his long term memory is better than mine! One big problem he suffers from is visual spatial difficulty. He has a hard time fixing things that normally he would do. He hasn't been able to work in over 2 years, he was a lineman. I read some posts above and didn't know about social security or getting an elder lawyer. I plan on doing this! I also found an in person support group near me, once a month and it helps to listen and be heard! I have many books also but I actually don't have 36 hr day one. Some books are very overwhelming esp when your husband is early onset. I would love to find a support group for early onset that includes the patient , he could use a friend that is going through what he is, most of the ones I found are far west, I am in Boston area.
Thank you for sharing your story and I hope mine helps in some way knowing your not alone!
God bless and take care of yourself!
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Welcome. I am so sorry for your husband’s diagnosis. Here is my best advice for you to prepare: First, consult with an Elder Law attorney to get your legal documents in order while your husband can still sign them. Next, ask your attorney for the name of an SSDI attorney and hire that attorney to apply for your husband’s SSDI. It is a stressful process that an attorney can help you through. Get HIPPA forms signed with all doctors to give you access.
You will have to take over all finances. Get a list of all accounts along with log in and passwords. Do the same for any banks, brokerage accounts, computer, phone.
Buy TILE gps trackers and place on wallet, keys, phone. It tracks the person and item through an app. Buy the book The 36 Hour Day. It will help you prepare for what will come with each stage of this disease.
With this diagnosis, he should no longer drive. If he gets in an accident, even if it isn’t his fault, your insurance company will not cover it, and you can get sued for everything you own. There are companies that will put him through a several hour driving test to determine if it can still drive.
Call your local Council for the Aging and ask what is available including adult day care. Call in home care agencies and get information and quotes. Get a plan b in place that involves touring memory care facilities and putting him on a waitlist in the event you can no longer care for him.
if there is a Mayo Clinic near you, get a referral for the Habit Program. It helps patients and caregivers with preparing for this disease.
Get a notebook and put all of the notes from doctor visits, phone conversations, ongoing new symptoms in the notebook. Give a note to the doctor with any new symptoms or concerns you have or put a message on their portal. Do not discuss in front of your husband.
With this disease, his brain is broken. His reality will never be yours again. You have to live in his new world. Do not argue with him. Accept blame and apologize for things you never did. Do not assume that anything he tells you is true including paying bills. completing tasks, feeding a pet etc. Verify that what he tells you is true.
Get a geriatric psychiatrist on his healthcare team for medication for symptoms.
Travel now and create a lifetime of memories. If you have children, tell them now. You will need help and support. Come back here for the same.2 -
Use the diagnosis as an opportunity to be more patient and kind with your husband. For me, the last thing I wanted to do after getting the diagnosis was to start talking to attorneys and putting together plans for what the later stages will bring. We took a couple of months to absorb the diagnosis and get back into a normal rhythm of living that was not centered on the diagnosis. We let the emotions of the diagnosis run their course before initiating any action plan. After those few months, I slowly began to work on SSDI, estate planning, informing friends and relatives etc. DW was diagnosed at age 57 as being late stage 4 / early stage 5. It was another year after that before we completed all of the recommended legal documents and it worked out fine. However had we waited 2 years, it would probably have been more difficult.
In most cases, the disease moves slowly enough that there is no need to "jump into action" immediately after the diagnosis. Instead take the time to let the shock of the diagnosis fade. Learn to live with it and realize that you are both still here, and there are still things you can do together that are worth looking forward to.
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I understand not wanting to jump right into paperwork but you run the risk that the PWD can be scammed -or that they progress quickly due to a mini stroke ,UTI or general anesthesia ,then you are looking at going to court for a conservatorship. Not good.
Usually takes a month or so to see an elder attorney and then you gather the documents-list of assets etc and then return to draft and then sign. The earlier you start the more your LO will be able to participate and understand .
Especially their decision on how much medical intervention they would want. Early on they may understand the disease more and may not opt for do everything - later they may think- "what disease I'm fine bring me back - keep me going as long as possible" and not understand what condition their body and brain will be in due to the disease.4 -
I want to thank each one of you for your invaluable advice and support. I’m currently working on our action plan and have contacted our family attorney (who also is a close family friend so we’re lucky in that aspect). I’m collecting our legal documents like our will, mortgage contract, like insurance policies, and retirement account info. (Did I miss anything?) Even though my husband is still in the early stages & is still working I want to make sure we address everything NOW. To this who recommended getting the book “The 36 HourDay”, thank you , I purchased it. I live in RI and our ALZ Chapter is small with little resources, I want him to ge able to speak with other newly diagnosed like him. He’s not very good on the computer so zoom doesn’t do him much good. I’m just frustrated by this. I still feel like I’m drowning and have many days where I wish I could just sit in a corner and hide but I know how much he’s counting on me. The Xanax does little to help me. But again, thank you so much for your support, you all have good souls and I’m grateful. Jan
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You might want to talk with the lawyer about a living will. I will attach links to some good resources.
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Make sure that the attorney creates the following legal documents: Durable Power of Attorney (DPOA) and medical directives, a Will and/ or a Trust. Apply for SSDI for your husband asap.
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Take videos of him and of you and him together. I wish I had more of those at this point. Travel if you can. Encourage him to write letters to those he cares about now. In the future, bring hospice as soon as practicable to help. This is invaluable.
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Thank you so much for the links, I will look them over this afternoon ❤️
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Welcome Magoo22..I'm sorry you have a need to be here. It is an excellent resource for anyone on the dementia journey. When it comes to an action plan, connecting with other caregivers is probably the best first thing you can do. Please give yourself tremendous credit for already taking that essential step. I know it’s overwhelming. You are in a safe space. You are getting very good suggestions. You will get more. Keep reading and connecting. This place is a life boat. Blessings to you. -LT
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I am in a similar situation. My husband lost his job in April of 2020 due to down sizing, he was 59. In 2023 he was diagnosed with mild cognitive dementia. This year he has been through the full battery of tests and we go to the neurologist on July 27 to find out what they show and next steps. Early in 2023 we got all our affairs in order with trust, POA, health advocate, DNR. I felt a weight lift off my shoulders when it was done.
I have been grieving the loss of our pictured retirement together. I am phasing down my hours this year to retire, which helps. He is still driving, grocery shopping with a list and cooking some. I've noticed changes from over the recent months and am very scared for what we will find out.
Some days I don't know if I have in me to be a caretaker again. I lost 7 family members between 2015 and 2020, including caretaking for my mother and aunt. I had to settle their estates and my step-mother's as well. I did learn trusts are easier than wills, automatic transfer- no probate as with wills and trusts cannot be broken if there is a family disagreement.
Some days when I see my husband having a hard day and I think of the future, I just start shaking; all the emotions, fear and anxiety of those 5 years comes flooding back. My husband was my rock through all of it, now I won't have that. I'm glad I found this community.
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Welcome, @Galadriel Glad you found us.
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- Take a deep breath.
- go online and read everything about diagnosis…..here is a start….https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/diagnosis-treatment/drc-20350453
- get all financial matters taken care of…this will involve a certified elder care attorney
- Read all you can…your caregiving will be a huge factor in just how bumpy the road will be
- get your team together…attorney, neurologist etc.
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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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