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Thread: How to keep your soul alive while taking care of others - I am inspired by another

  1. #1
    Distinguished Community Member
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    Default How to keep your soul alive while taking care of others - I am inspired by another

    Hi dear friends, I wanted to share this blog post I wrote about a wise woman I heard in a virtual caregivers conference the other day. Rose, I don't know that this applies hugely to people who are doing extreme caring like you, what do you think? Is there something here for you? I think generally though, it's really really good and I just loved HER - I can never remember how to spell her unpronouncable name, but anyway, it's in the blog post. I love you guys!
    xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog:

  2. #2
    Distinguished Community Member andromeda31's Avatar
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    Oct 2006



    It sounds like it would be a neat presentation to hear! I actually just finished an awesome book, kindof on the caregiving topic... Knocking on Heaven's Door, The Path to a Better Way of Death by Katy Butler. It is about how she helped her mother care for her father in his final years and there is a lot about the ethics of stuff which I really enjoyed reading about. It really made me think, I love books like that! A few times I had to just put it down it got me so angry reading about the medical industry (her focus is on pacemakers-her father had one) and how the money goes. This is a link to the article that Katy Butler wrote that inspired her to turn it into a full length book:

    I just grabbed this book off the new fiction shelf at the library randomly...I liked the cover and the title! It was so good though, I could hardly stand to put it down and read it in about 3 days! I am going to recommend it to the book club I am in, I think it will make for good discussion.

    Lisa O.
    Last edited by andromeda31; 02-15-2014 at 06:53 PM.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7) babies are all getting so old!!

  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna)))))) ~

    Great post, as always! I think I embrace some of her B's, and they are all excellent suggestions. Yes, our situation is a tad bit different in that I've been a lifetime caregiver. In addition to my boys, I was a caregiver to my grandmother, and to my aunt/godmother, and to a lesser extent my parents, since they lived 2 1/2 hours away from my home in their final years. Care provider is the occupation I claim on my income tax return. I guess that qualifies me as a "professional." (At least it does to the government!)

    ((((((Lisa)))))) ~

    I read Katy's article. Wow! Great writing style, and quite a story. The facts she provided are mind boggling. But I believe it! Every time my boys have been in ICU, room after room is filled with elderly, frail patients. I see them being rolled to and from tests, surgery, procedures. I'm sure many of them are suffering so much that death would be a welcome friend for them.

    Jim and I discussed this book today, and we agreed, as always, that society seems to be obsessed with living forever. And I asked, "Why? What is so great about being here? Pollution, war, diseases, superbugs, politics, greed, corruption... Sure, it's a beautiful place, but we're killing it and ourselves. I'm looking forward to the next destination."

    My aunt/godmother died right before her 90th birthday, after struggling for 15 years with cancer. Her home health nurse had said to her, "You could live to be 100!" And she said, "Why the hell would I want to do that?!" She was in constant pain, she was losing her lucidity, she had a catheter for 7 years, lots of UTIs, and on and on. Dependent on others for errands, rides to church until she could no longer attend. She told me, "I had a good life. And I'm going to a good place. I hope. I've lived long enough now."

    As my youth is an historical footnote, and age is rapidly encroaching on me, I look ahead, and I wonder what is in store for me. What is in store for Jim? Like my aunt said, "everybody dies from something." So what's it gonna be, and when is it gonna strike? No one wants to think that way, but all of our friends in our age group are thinking the same thing about themselves. It's rather daunting.

    We also must consider how much we want to go through to eke out a few more years. I don't want to spend the rest of my life in and out of doctor's offices and hospitals. So, I have to decide how much intervention I want. For my boys, I make that decision at the moment and with each moment following intubation. For Jim and me, a written plan should be in place. No one will step in to contest either one of us in our decision making. We just have to be clear to each other what we want.

    It's quite an enormous thing to ponder. But we should all do this, because aging affects the brain, and even if we are blessed not to have dementia, we will likely have memory loss of some kind, just because our brains are old and worn out.

    I think Katy's book is an excellent suggestion for your book club, Lisa, and I'll bet the discussions will be interesting.

    Love & Light,

    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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