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Monday, August 19, 2013

Suggestions for books on dementia in parent?

My brother, SIL and I are struggling through the early stages of my Mom's dementia. She only has problems in very specific areas but that is leading to the difficulties.

Can anyone suggest a book or other resources to help us navigate this changing landscape in a way that respects her autonomy yet makes sure we are not letting things slip through the cracks or making her upset unnecessarily?

Thanks in advance.

8 comments:

  1. I found a great book when I was dealing with some of the same issues. How to deal with a difficult older parent. I read it so much the book fell apart.

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    1. Thanks. I just ordered it. I live far away which compounds the difficulties.

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  2. The 36-Hour Day by Peter V. Rabins.

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    1. Thank you. This looks very helpful too and I ordered it as well.

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  3. Sorry that I can't suggest any books, but just to let you know that I understand how you feel.

    My Mum lived in the north-east of England while I was living (and working) in London. My aunt, who lived near my Mum, kept telling me that my Mum was getting worse and didn't know what day of the week it was. My cousin is a nurse so I spoke to her as I was worrying about it and her response was "Nonsense. It's because she lives on her own, as I do. I often don't know what day of the week it is too....!" When I visited Mum she didn't seem too bad but I think it's because I was staying with her and stimulating her.

    What helped was knowing that she had a home help who came in twice a week, plus my uncle and aunt lived close enough to keep an eye on her. Are there any organisations in her area who can do something similar?

    Towards the end, when Mum was in hospital with cancer, she suddenly said to me "Who are you?" I stayed calm and asked her "Who do you think I am?" She then gave me a cheeky grin and said "My daughter!" I was so grateful that she still knew us all, even towards the end, and we all managed to see her the Christmas before she died.

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    1. Thanks for sharing your experience. My Mom does have lots of support as my brother and SIL live close and see her at least once a week as do quite a few other people. It is early days yet with the dementia although she is 92 and we are struggling to understand how best to respond to her at times and how to assess her needs.

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  4. There is a great blog written by a man (who happens to be a retired physician) who was recently diagnosed with dementia. The title of his blog is "Watching the Lights Go Out". Davidhilfiker.blogspot.com He writes very openly and honestly from the perspective of being diagnosed with dementia. Excellent blog.

    My dad had Lewy Body dementia (now deceased). I found that by understanding the disease it helped me and my siblings, and my mom, help my dad through this final and very difficult stage of his life. I wish you well.

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    1. Thank you for sharing your experiences and this resource. All we know about my Mom's situation so far is that she has "mild dementia". I was with her for the evaluation which did help understand what aspects of her mental capacity were affected at this time - short term memory and temporal memory. I am concerned that her problem solving thought process is now also deteriorating so am trying to get ahead of this.

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