Don't know where we are in this

Kellybelle · November 29

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!

DavidPatterson1965 · November 29

Hang in there, Kellybelle!

jgreen · November 30

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.

Dementia Behavioral Assessment.pdf

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 · November 30

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 · November 30

https://alzconnected.org/discussion/comment/259490#Comment_259490

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 · November 30

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 · November 30

https://alzconnected.org/discussion/comment/259497#Comment_259497

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!

Don't know where we are in this

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