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What do you wish your LO could know about you, do for you, or say to you?

Call me Gram
Call me Gram Member Posts: 107
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I am a retired teacher. When I was teaching, one of my favorite books was I Wish My Teacher Knew, by Kyle Schwartz. I believe the book helped me to be a better teacher.

Now, I am a caregiver for my husband (DH) who has dementia. To be a better caregiver, I want to know…

What do you wish your spouse, loved one (LO), or caregiver could know, do, or say to better support you (as a person living with dementia)?

Comments

  • GEH
    GEH Member Posts: 67
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    First off, just you reaching out for advise shows how much love and respect you have for your dear LO. I guess the next thing that I would want, is to be treated as normally as possible for as long as possible. Try as much you possibly can to not be too doting and attentive or overly protective. Allow your LO to retain their independence, decision making abilities and dignity as long as possible. Just my humble opinion. GE H

  • Dorse
    Dorse Member Posts: 82
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    I agree. I'm having difficulty accepting the Alzheimer's diagnosis that I got 4 months ago after having cognitive testing, MRI, lab, and Pet Scan. How to accept this horrible diagnosis???

  • GEH
    GEH Member Posts: 67
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    You do not accept it!!!! Get off your a**, and fight it with everything you have got. You have already wasted four months. There is so much out there to help us actually help beat this than there has ever been before, or when my mother was diagnosed with it eons ago. I just had my first infusion of Leqembe about a week ago. Was terrified to go. But it was a no brainer. I think I might start with seeking out a really good neurologist. I would recommend one practicing at a place like Barrows Neurological if you are lucky enough to live near one. If your neurologist doesn't jump in with both feet advocating on your behalf, doing everything they can to assist you, fire them and find another one. I wasted three years listening to a neurologist who said oh you have brain bleeds, there is nothing I can do for you. Here take memantine and doneprizil and come back in three months. For three years. A diagnosis of Alzheimer's is devastating. You have giving yourself enough time to feel sad and mourn the diagnosis. We have all been there. Now start fighting. We are all here, rooting for you.

  • Call me Gram
    Call me Gram Member Posts: 107
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    edited November 2025

    Thank you! I'm praying I can make my DH's life a little easier! :)

    I panicked today when I read a prognosis for Vascular Dementia. I'm not ready to lose him. All the advice you can offer is appreciated!!

  • Michele P
    Michele P Member Posts: 259
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    Brain HQ online cognitive games has helped my husband regain executive function and focus. It is used in the Mayo Clinic HABIT Program. If there is a Mayo near you, I highly recommend it. They have in person and online support groups as well. Don’t stop fighting!!!

  • Dorse
    Dorse Member Posts: 82
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    I was diagnosed with Alzheimer's / mild 5 months ago. I have dealt with so much stress over the decision to get the Kinsunla infusion or not as well as the diagnosis. It's taken 5 months of back & forth with Lilly's & my neurologist to get insurance PRE approval even though I have great insurance. I have finally been approved to start infusions Jan. 26 with being told that this could cost thousands of dollars if there's any problem with insurance. This is why: The infusion center doesn't usually start infusion without insurance pre approval, but since it's been months since this started they are making an exception. This could be a financial burden if they don't know how to file the insurance, OR if there's a problem. I am 80 yrs. old, great health, no major problem with anything so far, some memory changes, but I am 80. This has been one of the most stressful diagnois AND decisions I have made. Today I have decided to eat healthy, get exercise, take care of my health, AND cancel these infusions. I just want to stop the stressing, and so MANY negatives to consider as well as the slower progression positive / still no cure. I must say that I'm not forgetting about how much MONEY is involved with all of this. BIG money for Lilly's as well as all the test, neurologist, etc. I will keep faith in myself, my family, and God, and accept the rest. I have done so much research during the past 5 months that I think I could write a book on Alzheimer's. God bless everyone who are dealing with this awful diagnosis.

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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