Newly diagnosed with Dementia. Caregiver.

SvetlanaConstant · December 13

I am a caregiver for my husband who has Dementia. I am very sad to see my partner in life in this stage. Some days he is better than others. What book or reading materials would you recommend for me? Thank you.

H1235 · December 13

Welcome, so sorry you need to be here. I have attached some resources I found helpful. Learning all you can about dementia is very important. The better you understand dementia the better you will be able to care for him.

Anosognosia and Dementia - AgingCare.com.pdf

Tam-Cummings-LLC-Handouts (2).pdf

understanding-the-dementia-experience.pdf

tboard · December 13

I have read a few books but I think "The 36-Hour Day" By Nancy Mace MA, and Peter Robins MD, MPH is by far the best, especially for people who are caring for spouses rather than parents. I have cared for parents and now for my spouse. They are not the same. I borrowed "The 36-Hour Day" from the library and liked it so much I bought a copy and it for reference.

jgreen · December 13

Hi @SvetlanaConstant

welcome. So sorry you fund yourself here but you are among friends. I ditto the above recommendations. Teepa Snow and Dr. Natalie Edmonds (Dementia Careblazers) also have informative websites.

Check in with the group and let us know how you and your LO are doing.

Sunfish47 · December 13

My DH is stage 5. Can’t operate his phone or the tv remote, must be prompted to use the bathroom so he doesn’t have an accident, has word finding difficulties so he can’t communicate well, no short term memory so he asks the same questions over and over, sometimes he sees people who aren’t there, and doesn’t remember who I am much of the time (we’ve been married 49 yrs).

I did have a lot of anger and sadness starting in 2021 when I realized what was happening.
I have not read any books on dementia and Alzheimer’s. But starting back in March of this year when I found this forum, I did start reading most of the postings and answers (starting with the older postings and coming forward).
There’s so much advice and wisdom here, and this is how I came to the acceptance of our situation.

You have to be able to reach acceptance. My DH was a highly accomplished, highly intelligent guy with a quick witty sense of humor that always made me chuckle, and sadly that guy is gone. You have to be able to reach acceptance and honor him for what he was. And read everything on this forum that you can.

Michele P · 9:27AM

Start with The 36 Hour Day. Excellent resource that you can refer to as the disease progresses.

tonyac2 · 1:42PM

https://alzconnected.org/discussion/comment/260646#Comment_260646

You are absolutely correct @Sunfish47 ,”you have to be able to reach acceptance”

I spent far too long fighting with it and our lives were totally miserable. When I look back it pains me to review my actions and behaviors in the beginning. Knowledge is key. That’s how I became a much more loving caregiver to my DH. Not understanding equaled anger. Understanding equaled love and acceptance.

SvetlanaConstant · 7:44PM

https://alzconnected.org/discussion/comment/260636#Comment_260636

thank you for your response. Will get the book.

annie51 · 8:29PM

https://alzconnected.org/discussion/comment/260646#Comment_260646

I love this post by @Sunfish47 about reaching acceptance. It is so true. I too fought it too long. There are some good recommendations here on reading and learning material. The first book I read was 36 Hour Day and that was a great starter book. I’ve learned so much from the people on this forum since then. Come back with any and all questions or just to vent. There will always be someone who can truly relate to what you’re going through and validate your feelings.

Newly diagnosed with Dementia. Caregiver.

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