Understanding Parents with Dementia discussion
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'Til Death Do Us Part
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Hi Wendy and Tim. My mother has advanced dementia, and I'm always looking for good books on the subject. I've suggested a book for this group's bookshelf (by Alex Witchel). I'm also the author of the brand-new book "Inside the Dementia Epidemic: A Daughter's Memoir," posted here on Goodreads, with a book give-away going on until Sept. 30th. Hope the group grows in size and we can share some good books. I'll add some more of my favorites. I've been reading books about dementia (how-do and memoirs) since 2005, when I began my caregiving "journey."Inside the Dementia Epidemic: A Daughter's Memoir
Welcome Martha, thanks for the heads up about the giveaway!
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Thank you! I'm so glad that someone finally took an interest.
These past few weeks have been particularly hard for Mom and my family, so she's on my mind all the time. I'm too worried and distracted to read fiction so I thought I should read something that would help me to understand her disease and help her more.
I will look for 'Til Death Do Us Part' and Martha's book.
Wendy
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Wendy
Hey Wendy and Tim,I thought about adding a list of my favorite memoirs about dementia caregiving, but I realized it would be easier just to share with you my webpage that describes my favorites, if you're interested: http://www.insidedementia.com/memoirs...
Take care,
Martha
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My mom moved to memory care this past week and my sister and I are relieved to know that she will be around more staff and caring people every day. She sounded pretty good on the phone too.
Hi WendyYes, my mom enjoyed almost 3 years in a memory care facility before she needed to be spoon-fed, which they couldn't do. Those were the happiest years of these past 10 years of her life. A small facility with staff especially trained in dementia care, lots of affection, etc. Good luck! The transition is the hardest, I think, for everyone, but once your Mom settles in I bet she will be happy there.
Finally, a group about dementia! :) Im a dementia nurse in an acute hospital, also my grandmother has dementia even before i became a dementia nurse, so i know the stress and difficulties in managing them. I would love to see your recommended books, so i can also share with my colleagues. :)
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"Living With Lewy's, Empowering Today's Dementia Caregiver" by Amy and Gerald Throop
Welcome, Gretel!My favorite books on dementia care can be found on my website http://www.insidedementia.com/dementi.... I also have an award-winning book out, "Inside the Dementia Epidemic: A Daughter's Memoir." I hope this Goodreads group takes off...
Martha
Wendy's mention of The 36 Hour Day in her post on Oct. 6, 2012, caught my eye because that's the book my wife found most helpful when her mother fell ill from Alzheimer's. My wife found it so helpful that she recommended the book to her six siblings. I joined this group after I spent some time thinking about why I wrote my latest novel, The Dropout. Sorry, I don't mean this to be any kind of endorsement or recommendation or plug. But thinking about the writing process, I realized how much my mother-in-law's Alzheimer's influenced and effected me. I tried to explain some of that influence in my latest blog posts, Why I Wrote The Dropout, parts I and II. You may even find those more relevant than the book, which is fiction, after all. Anyway, my point now is that her disease, and the havoc it caused for her family, really had quite a psychological impact on me, more than I even realized at the time.
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From my experience and from the courses i've attended, it's very helpful to understand the concept of person-centred care in dementia, in a sense that carers should know the person's likes, dislikes, and personality before they had the disease. They are still the same person even if they appear confused and scared most of the time.Im glad that you are all actively participating in the care of your loved ones. :) It is also a plus to view the dementia caregiving as a positivity in life (e.g. : bonding moments, reminiscing, an act of love) rather than a burden. Of course, i know it is not often possible to always feel that way :( but at least we should try.
Wendy wrote: "I will look for your book, Jeff. How can we find your blog? I agree with you that having a family member with dementia really has an effect on me and my sister. Mom just seems so scared most of the..."Wendy, the two blog entries on The Dropout are right here at Goodreads, at:
http://www.goodreads.com/author_blog_...
and
http://www.goodreads.com/author_blog_...
The first one talks more about dementia/Alzheimer's than the second.
I understand exactly what you mean when you mention the frustration you feel when wanting to bring her some happiness but "it's so hard to do." My novel The Dropout concerns my experiences when my wife's mother suffered from Alzheimer's. But some years after that, my own dad suffered from dementia (he died in 2009). One of the things I found extremely important was to tell him and demonstrate repeatedly how I felt about him, how much I cared for him and how much I loved him. My family was never very demonstrative like that, so it was quite a breakthrough to finally do so, and I think my father "got it", because his dementia didn't get too, too bad before he died of a heart attack. Today I'm very grateful that I was able to share those feelings with him and do as much as I could do to make him understand. So my best advice to you is, no matter what else you do to help her feel some happiness and no matter how frustrated you sometimes get, tell your mother very explicitly how much she means to you. In the end that may mean the most to you, and to her.
Gretel wrote: "From my experience and from the courses i've attended, it's very helpful to understand the concept of person-centred care in dementia, in a sense that carers should know the person's likes, dislike..."I liked Gretel's comment about caregiving also being a positive aspect of life so much that I want to echo it. I wasn't a direct caregiver to my father (my mother was). But his dementia gave me an opportunity to express love for him that I never had before. They were simple expressions but also very powerful. I just explained that in a reply to Wendy, just above this reply, so I won't go into it again.
Another positive aspect from observing my dad's dementia and late-in-life illness (he died at age 89, a month from his 90th birthday) was the lessons it taught to me. I mentioned to Wendy that my father's dementia was in early-to-mid stages, not yet too, too bad. So at times we could still talk about things. He would speak about his demise indirectly. Once he pointed out the tall trees in his backyard, and he said, "remember how little those were when I planted them?" Another time, when we were talking about my dog, he gestured to the back yard and said, "yeah, all my dogs are buried back there." From conversations like that he told me that he knew he was dying and he was prepared for it. Man, did that ever have a comforting influence on me. I recognized that he felt he had completed his life, and he was at peace. I could not have asked for more.
Hello everyone,I haven't read through all the posts yet, but I'm happy to have found this group. I care full time for my 97-year-old gramma who lives with severe dementia. Caring for her has been very challenging, but also full of blessings.
Martha wrote: "Welcome, Debbie!"Thank you, Martha! I didn't see this book mentioned yet -- has anyone read it?
No Act of Love is Ever Wasted: The Spirituality of Caring for Persons with Dementia (by Jane Marie Thibault, PhD and Richard L. Morgan, PhD.)
I am a follower of Jesus so it has helped me think better of the "challenges" of taking care of my grandmother.
I'm looking forward to checking out all of the other books that have been mentioned here.
Hi Debbie. I haven't heard of that book, but on my own book's website I recommend my favorite books about dementia care: www.insidedementia.com (under Resources for Caregivers). Several of those books are spiritually-based, including "The ABCs of Caregiving" and "Aging in Community: Dementia, Friendship and Flourishing Communities."
Thanks for sharing your website, Martha. I will definitely visit it.
Hi Debbie, nice to "meet" you here. God bless you for caring for your grandmother through dementia.
Hi Kathleen -- it's nice to meet you here, too. I'm so glad I found this group.
Thanks for starting this group. It looks pretty quiet in here now, but I'm sure it will warm up eventually. I wanted to share a book that my mother wrote about my grandmother's 15 year decline into alzheimers and my grandfather's efforts to keep her out of professional care and in home care.