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Hello, I'm New Here

andorya
andorya Member Posts: 7
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I signed up here last December, but I haven't made any posts yet. Thank you for all of the posts so many of you have made!

My husband was diagnosed with Alzheimer's and cerebral amyloid angiopathy (CAA) in November of 2025. He had symptoms starting in 2020, and was diagnosed with mild cognitive impairment at that time. Based on the 7 Clinical Stages of Alzheimer's, he is now at Stage 4. He just turned 60 in March, so his symptoms started early at 55. He is not candidate for the amyloid treatments due to the CAA.

I am trying hard to focus on what we still have together right now. Of course, trying to look at the glass as half full doesn't always work!

We have already consulted with an elder law attorney which was very helpful. He sees a neurologist, and has an excellent primary care doctor.

I have been listening to lots of Audible books and podcasts about dementia, which has helped considerably.

If any of you have any suggestions for getting through this journey, please let me know!

Comments

  • Belle60
    Belle60 Member Posts: 112
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    My husband was formally diagnosed at age 61 but probably could have been diagnosed at a much earlier age. I did the same thing as you read a lot of books, etc. The information was helpful but sometimes I feel like I am not keeping up with the changes. Every new progression seems to catch me off guard because it can be it can be pretty individual it seems like. I think the hardest thing is just watching the person you love turn into a completely different person. The one thing I keep telling myself is you have to Live within the four corners of their world which can be difficult. None of this is easy and it sounds like you are doing the right things. Try the book "Hello Alzheimers". It was a difficult read but helpful.

  • SDianeL
    SDianeL Member Posts: 3,237
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    welcome. Sorry for the reason you are here. Some helpful resources: read the book “The 36 Hour Day” and search online for dementia caregiving videos by Tam Cummings or Teepa Snow. Also develop a Plan B for Memory Care in case you are no longer able to care for him. Many facilities have waiting lists. Come here often. You are not alone. 💜

  • andorya
    andorya Member Posts: 7
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    I agree, the hardest part so far has been watching the person I love slowly change before my eyes. I sometimes wish I would have met him after the diagnosis, so that I wouldn't know what I am missing! However, I would never give up all the memories we have made over the years. Thank you for the book suggestion, I have already downloaded it! Thank you for sharing a bit about your experence.

  • andorya
    andorya Member Posts: 7
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    Thank you for sharing. I am sorry that you are having to take this journey. Like you, we have been travelling some and taking those trips that we would have saved for later. We have a few trips planned for this year. I am hoping that my DH will not progress too quickly, and that we can enjoy our time together.

  • andorya
    andorya Member Posts: 7
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    The 36 Hour Day was a really good resource! I have not previosuly heard of the two people you mentioned, just googled and bookmarked. I have heard the waitlist for Memory Care can be very long. Thank you for the advice!

  • Michele P
    Michele P Member Posts: 379
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    Welcome. You were given most of the excellent advice I would have given you. A few other suggestions: Put TILE gps trackers on wallets, phones, keys. It tracks the items and person through the Life 360 app. You will have to take over all finances. Get account numbers, log in and password for all accounts, phones, computers. Try and establish routines and structure that are predictable. Changes are hard for your loved one. Don’t argue with them. Their brain is broken. Their reality is not yours. Take blame and apologize for things you never did. Your local police or sheriff’s department should have a program called Project Lifesaver that will give you a gps tracking watch for your husband. It will track him anywhere in the U. S. If lost. Call your bank and brokerage firm and get emails if any money moves in or out of your husband’s account. Brain HQ online games help with memory and cognition. Mayo Clinic recommends it. Call your local Council on Aging and find out what is available including adult day care. Call local in home care agencies and get rates and information. Get your husband on a waitlist with a refundable deposit in a memory care facility in the event you can no longer care for him. Do this asap due to long waitlists. Keep a journal of new symptoms or behaviors to share privately with doctors. Do not share in front of your husband. Come back here for help. People here are extremely knowledgeable and supportive.

  • andorya
    andorya Member Posts: 7
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    Thank you so much for taking the time to give all this excellent advice. I have done a few of these things, but defintiely not all of them! There is so much to think about, and I will be adding to my to do list based on your feedback. I am so glad that people like you are willing to help!

  • Lethe
    Lethe Member Posts: 18
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    Member

    I just finished Dasha Kiper’s 2024 book Travelers to Unimaginable Lands…stories of dementia, the caregiver and the Human brain. It reads much like Oliver Sacks The Man who mistook his Wife for a Hat, in that it’s a very compassionate look at not only dementia but also what the caregivers go though. I really enjoyed reading it.

  • andorya
    andorya Member Posts: 7
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    Just put it on my reading list. Thank you!

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
Read more