When I think about the lessons that I have learned after 25 years of care giving for our son who has multiple and severe disabilities and now for my mother who is 92 and has care needs,
I feel that the first lesson that I had to learn, to be a long-term caregiver, was humility.
I needed to learn that I could not look after the people I love all by myself. And that didn’t mean I did not love them. I needed people me to help me give care. That was a big lesson I had to learn in humility.
The other big lesson was just to accept human frailty. I needed to accept who the people are that I’m caring for and that I couldn’t fix them and that it was OK to be who they were. That is a big moment, I think, that all caregivers need to come to—that you accept the person you love, for who they are, with all of their abilities and disabilities—particularly if a situation or condition continues to get worse every day.
Those are the two big lessons in care giving that I’ve learned. And the icing on the cake is to be grateful for every moment that you have and to make a decision not to see your life as tragic. There has to be something to be grateful for every day. That’s not a Pollyanna idea, that's a real idea to survive a
long-term care giving situation.
It’s possible to have a good life AND be a long-term caregiver.
Those are the lessons I’ve learned.
Donna is a disability activist and author and consultant. For more information:
Donna's Blog - THE CAREGIVERS LIVING ROOM or
Donna's Book - THE FOUR WALLS OF MY FREEDOM
Donna Werth Smith
11/9/2016 07:15:12 am
Dear Donna, I am looking forward to purchasing your book! My Mother in law is 90 and now in a care home, my Father is law is 98 and very determined to stay in his home. My Mother in law has dementia and I just love her for who she is. My Father in law is very stubborn and just wont deal with his aging body and would never talk about death and just doe not want to be here anymore! My husband and I do the best we can to care for them. I used to feel guilty about her having to go to a home but then realized she was beyond our caring for her anymore. She is happy in her own little world and we care for my father in law but have had to realize he is making his own choice of being alone at home. Thanks again, Donna Smith
11/9/2016 01:12:00 pm
Hi Donna, Thank you for sharing your story. It isn't always easy, but we need to accept our own limits and know that it's ok, and also allow others to make their own choices (even though we know best...haha!!).
12/1/2016 02:54:45 pm
Hi Donna, Thank you for your kind words. Your experience mirrors my own with my Mom in many ways. She's like your Father in Law - determined to stay in her own home even though she's very frail and has lost her short term memory almost completely. We have to accept our loved ones for who they are and for the choices they make. I've given a lot of thought lately to how we can continue to enable Mom to 'be herself'. She wants to have personal choice in her life more than anything.
11/9/2016 08:23:36 am
11/9/2016 01:12:54 pm
Isn't it wonderful when people like Donna choose to become a gift to the world...and I have no doubt she is a light for many!
12/1/2016 02:56:09 pm
Thank you, Yvonne and Claudette! I love your phrasing, Claudette - that gratitude, humility and acceptance are all part of LOVE.
11/9/2016 08:57:34 am
Along with being grateful, humble and accepting I also feel that having no expectations sometimes takes practice. I hope to read your book one day. I wasn't always a caregiver when my mother had Alzheimer because she lived in a different province. I know that being a caregiver is a lot of work, stay strong. Namaste, Denise
11/9/2016 01:13:32 pm
12/1/2016 02:59:06 pm
Hi Denise. I agree with you that having no expectations (or at least no concrete expectations) takes practice. Another way or putting it would be that 'the only certainty in life is uncertainty'. These ideas are difficult to put into practice when we want some degree of predictability and harmony in our lives. Illness and aging play havoc with calm and control. Thank you for sharing your thoughts!
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Yvonne Heath is Canada's Proactive Living Consultant. She is a Speaker, Television Host, Award Winning Author
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