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Don't know where we are in this

My 65 y.o. DH was diagnosed with early stage Alzheimer's this past July. I know things haven't been right for a couple years even before the diagnosis. I didn't know much of anything about AD and I'm trying to learn. He is still fully functional, has a lot of trouble remembering words, losing his train of thought, working with numbers (used to do our bills), that type thing.

This past week or two, he kept asking me if I smelled something burning. I did not. I looked up AD and smell and it said smelling something like burnt food was common. He also has experienced a huge change in taste. Things are tasting good, things that he really liked even. He wants sweets more than anything else.

He's lost 7 lbs in the last two weeks because he isn't eating. He said he's not hungry and nothing tastes right.

I thought this type of thing was in way later stages. He's also starting to "look" different to me. Tired, more haggared. The dr. said this disease goes on for many many years. How can it if he doesn't want to eat?

Any suggestions are appreciated! God Bless You All!

Comments

  • DavidPatterson1965
    DavidPatterson1965 Member Posts: 2
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    Hang in there, Kellybelle!

  • jgreen
    jgreen Member Posts: 248
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    Hi, @Kellybelle,

    Welcome to our group. I am so sorry you have to be here.

    A couple of questions for you? Who diagnosed your DH? Was it your primary care doctor? Most are very good at medical issues, but not as attuned to neurological issues. I recommend getting a neuro consult for a full work up.

    I read (or heard) that by the time a diagnosis is made, the patient is usually in a middle stage disease. That is usually when symptoms become most noticeable to the people who are most familiar with the patient. The symptoms you describe sound more like middle stage. I am attaching a behavioral assessment chart from Tam Cummings’ website.

    Read as much as you can about this disease. Websites for Tam Cummings, Teepa Snow, and the Dementia Careblazers are good resources. Also the book The 36-Hour Day (8th ed) is great. Get with an Elder Care Attorney if you haven’t done so already to take care of durable powers of attorney and other legal paperwork. You want to get that done because guardianship is expensive and has to go thru the court system here in the US.

    Come here often. You will find great validation, support and love.

  • SDianeL
    SDianeL Member Posts: 3,056
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    try protein milkshakes with ice cream. Let him eat sweets. Don’t ask what he wants just fix something and serve to him. My DH would say he wasn’t hungry but when I put the food in front of him he ate it. Serve his foot on a brightly colored plate with a lip. Try more finger foods. Many people with dementia have visual perception issues. Routine is key. Ditto on reading the book “The 36 Hour Day” which will explain the disease and offer tips on caregiving.

  • Kellybelle
    Kellybelle Member Posts: 10
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    Thank you for the valuable information. I need to do the legal part for sure and will do that asap. I guess I assumed incorrectly that middle stage would mean he was started to become non-functional. His sleep has changed and he is either sleeping or up and kind of hyper. I have so much to learn unfortunately. Thank you so much for guiding me to these resources. I'm sorry you are here too!

  • tboard
    tboard Member Posts: 241
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    edited November 2025

    Even though my DH was diagnosed with multiple dementias two years ago, I contact his doctor when there are major or sudden changes in his health or behavior. I do this because my DH can no longer tell me where it hurts or what is wrong.

    There is a wide range of experiences people with dementia can have and they can still get the flue, cancer or infections.

  • Kellybelle
    Kellybelle Member Posts: 10
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    Thank you so much for the wonderful ideas. I can't believe this is happening. Not sure I've truly accepted it but these tips will help I'm sure. Thank you again and God Bless!

  • addy103
    addy103 Member Posts: 33
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    My husband was diagnosed with AZ young early 60s. Then it was like a speeding bullet train. I kept him home for a year and a half and then he became violent and I had to place him. In the year and a half he has been in memory care he has moved very quickly towards end stage. The only reason he is not considered end stage is bc he was in great physical shape when he got sick and can walk and go to the bathroom himself. He has trouble eating, doesn't recognize utensils, has difficulty getting dress and very limited language.

  • Quilting brings calm
    Quilting brings calm Member Posts: 3,083
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    He may very well have early onset dementia given that he was diagnosed at 65. Early onset means beginning prior to age 65. Early STAGE means that the person’s symptoms are at the mild level.

    Early onset dementia is said to progress at a faster rate than dementia beginning after age 65.

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