Oh, Irene, I'm so sorry about your mom. Went long... -- LOL Reading Recommendation Board

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Date Posted: 09:31:10 11/11/09 Wed
Author: MaryJ
Subject: Oh, Irene, I'm so sorry about your mom. Went long...
In reply to: Irene 's message, "I only wish that I had found this recommendation a year ago. My mom was diagnosed with a slow moving dementia, but had a fall, and then overnight she went from living on her own, to being late stage dementia. We lost her overnight to this disease. We were never able to say goodbye to her, and thought we would have time with her before the devastation set in. Right after her fall, she never knew who we were, where she was, or even who she was. Immediately after the fall she became total care in a nursing care facility. I wish we would have had the time to say what we needed to when we still could have reached her. Now we go every day to the nursing home to feed her, but she doesnt know us. This book will be extremely painful. I would like your opinion = Do you think it will help us at this point?" on 11:06:01 11/10/09 Tue

This is the only book that the National Alzheimer's Association has ever endorsed (according to the author, who writes an online column for them) and they endorsed it because it has captured the disease in such a way that readers "will gain an awareness and sensitivity to living with Alzheimer's".

As I read it, I thought of my friend, Holly, who is dealing with her dad's Alzheimer's alone. At times I thought it would be much too painful for her to read, because it shows what her dad is going through and what he has lost in such a realistic way. At times I thought, _everyone_ should read this so we can get a better understanding and have increased empathy (if that's even possible) for patients living with the disease.

It does not focus on the caregiver, it focuses on the dignity of the main character. Perhaps it would be too fresh for you, in the midst of your caregiving; perhaps it would give you insight into the your mom's struggle? Personally, I would have to think hard about reading it in your situation - I'm not sure that I could (maybe read the back of the book & the recommendations before buying?)

Many prayers for you during this time!

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Replies:

PS Irene... -- MaryJ, 12:49:52 11/11/09 Wed
- Thank you both for responding. It is very hard, and has changed my siblings and my world entirely, Working full time and being with mom every day at lunchtime for a few hours is proving to wear me down. I had to see a mental health professional as well for stress. I feel that we have already lost her, lost her on that day of her fall, and we have already started the grieving process, but cant follow through with the stages of grief, because she is still here. She would so hate this. She was always moving, always helping people and energetic. Now her whole world is her geri-chair and her bed. What a terrible existence. (NT) -- Irene, 09:17:14 11/13/09 Fri
  - This is the most eloquent way of putting the caregiver emotional limbo I've yet heard: Grieving, but unable to move through the process because the person is here, but not here. I find it has also affected my ability to process my mother's death of a year ago. I'm totally stuck in neutral. I've just accepted that this is how life is right now. (NT) -- Lemora, 15:21:53 11/14/09 Sat

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