New to this and Helpful books

I am wondering if this group has a reading list of helpful resources for those living with dementia and care partners. If not, I'd like to start one. My husband was recently diagnosed with Parkinson's . The initial diagnosis also included Alzheimer's. He was on medication for several weeks for both until further testing showed the cognitive changes were due to Parkinson's. Fortunately, at this stage, the Parkinson's medication has made a significant difference on the physical aspects. I am a big reader. A fiction book I found very helpful was "When Lemons Give You Life" by Anna Johnston. It creatively pointed out the importance of healthy, tasty food for all living with Alzheimer's and other forms of dementia. Food is a powerful source of memories and simply joys. A non-fiction book I found incredibly helpful is "Looking Past Dementia: Learning from Those Who Live with It" by Marysue Moses. I happened to read these two books back to back . "Looking Past Dementia" is a compassionate view into the power of connections and relationships with those living with dementia. The writer does a great job of simply weaving research in with tender examples of those living with it. Her examples of effective communication helped me a lot with my husbands loss of his same ability to tell stories . He was known for creatively augmenting his stories and now he gets lost trying to get through them. Her book reminded me, in so many ways, of the importance of meeting people where they are at - or, "crossing to their side of the street." And, of seeing the possibilities in everyone, well beyond the challenges. I find I am telling everyone about both of these books I suppose with the fiction one because I love cooking and believe in the power of food and for the non-fiction one because of the help it gave me personally and the hope it gave me that care could be more humanely transformed for those living with various forms of dementia. I should add that Moses's book speaks to the power of the arts, theater, to engage people even if they don't remember the experience for long. I too am a big believer in such activities.

Comments

  • Michele P
    Michele P Member Posts: 564
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    The 36 Hour Day is an excellent book that is highly recommended by people on this site.

  • SusanB-dil
    SusanB-dil Member Posts: 998
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    Hello and welcome -

    I've brought the book list to the top once again, as it is so helpful.

    and yes - 'The 36 Hour Day' is helpful. Also Teepa Snow and Tam Cummings videos.

  • terei
    terei Member Posts: 988
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    For alll end of life questions: Being Mortal

  • Manila
    Manila Member Posts: 2
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    Thanks, we are at the beginning of my husband's Alzheimer's so I found this book helpful:
    Alzheimer's Early Stages: First Steps for Family, Friends, and Caregivers by Daniel Kuhn.

    I also purchased The 36 Hour Day and plan to dive into that next.

  • April23
    April23 Member Posts: 214
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    edited October 16

    Another helpful book I read was “Creating Moments of Joy Along the Alzheimer's Journey: A Guide for Families and Caregivers.” This really helped for mid to late stage when depression and apathy can start to set in.

  • dcare45
    dcare45 Member Posts: 262
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    edited October 17

    I read "Did I Remember To Tell You", by Pam Kovacs Johnson, was pretty good. Easier to read than The 36 Hour Day but not as in-depth. Reading The 36 Hour Day now.

  • Emily 123
    Emily 123 Member Posts: 1,008
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    There are links are within this thread, and you can always use the magnifying glass on the upper right side of the forum to search for threads about this topic…

    This is a good YouTube series…

    The NADRC has some good resources as well…

    National Alzheimer’s and Dementia Resource Center

    https://nadrc.acl.gov/home

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