ARGH: It's Not About Putting Your Life on Hold


ARGH: It's Not About Putting Your Life on Hold

trophy_640As I write this, I'm listening to the Quarterly Family Caregiver Coalition webinar, hosted by National Alliance for Caregiving. A presentation given about the Shire BRAVE Awards just ended. The award honors "ordinary people who give of themselves by caring for others in a meaningful, dedicated and selfless manner." Each recipient of a BRAVE Award receives $10,000 USD or the local country currency equivalent.

You can learn more about how to nominate yourself or another family caregiver here. You can submit a nomination until June 30, 2013.

An employee from Shire, plc, the award sponsor, spoke about the program and encouraged us to get the word out to you. After his formal presentation, an attendee asked, What are you looking for in the nominations?

The employee answered, We're looking for someone who has put their life on hold to be a family caregiver.

No, I screamed. No!! (A mute button means I'm the only one who heard my screams.)

This is exactly the message we work so hard to change--that you have to give up your life when you are a family caregiver. Oh, my, we work so hard to share suggestions, coping strategies, ideas, support so you don't put your life on hold.

And, just a few moments ago, another presenter during the webinar spoke about nominating a family caregiver for the award who she knows put her life on hold. I'm jumping out of my skin. ARGH!!!!

I don't mean to say that we shouldn't recognize that parts of life go on hold during caregiving. But, I worry so much that the message becomes this: You must put your entire life on hold because of caregiving.

In 1995, I started an award called Caregiver of the Year. (I stopped holding the contest in 2009 because so many companies started doing the same and gave away much better gifts than I ever could. Anyway...) When I created the award, I decided the criteria for the winning five family caregivers must reflect their ability to move through life with caregiving along side. It's not about stopping life for caregiving but about learning how to bring caregiving along.

In my award, an independent panel of judges chose five winners based on the following criteria:

  • The caregiver’s ability to complement their caregiving responsibilities with their own needs and interests.

  • The caregiver’s problem-solving techniques.

  • The caregiver’s use of community services.

  • The caregiver’s community involvement.

These criteria feature solutions, coping strategies and a life outside of caregiving, which become inspiration for others to think, "Maybe I can do that, too. Maybe I can have a life."

I think it's awesome to honor family caregivers. I love that we have awards now that give money to cash-strapped family caregivers. These awards get the stories out about family caregivers and their incredible impact in their families and our communities. I beg these companies who create these awards to really think about the message they're sending--and to make sure the message focuses on making compromises for caregiving not life sacrifices.

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I have been putting my life on hold for the last six years, ever since my mom lost both of her sisters within 6 months of each other. They lived in the same 3 family house for over 35 years. We used to tease them and call them The Golden Girls, for they were all blonde and had a routine where they would sit downstairs in the oldest sister's house and watch TV every night, or all sit on the porch during the summertime. \r\n\r\nThe weekends are the hardest. There is absolutely no one to pitch in (I do have a brother but he is always 'too busy.'). Knowing how much my mom hates weekends, I purposely do not make plans so I can get her out of the house. She is stuck in the house all day, every day with an aide. The only time she ventures out is for a doctor appointment. Saturday is usually bouncing around town doing small errands (Getting her in and out of my Ford Explorer with the walker can be a challenge and exhausting for both of us). Sunday means going for a short ride or (the dreaded) grocery shopping. \r\n\r\nThere are plenty of things I can do! I have many friends who live out of town whom I would love to visit for a weekend. And yes. I can go. I can really do anything I want. Even my mom keeps telling me, \"Make plans!\" But you see, I have tried that. And I was so nervous all day worrying that something could happen to my mom being all alone in the house, that it was impossible to even enjoy being out. \r\n\r\nAs I'm typing this I'm thinking about the great arts and music festival that is happening tomorrow in my old home town a half hour away. My favorite band is even playing in the afternoon! I would love nothing more than to go and enjoy myself. But knowing my mom would be home all by herself, sitting at her kitchen table looking out the window...I can't. I just. Can't do it.

RoaringMouse 2.0

To give up your life... to me means to put things totally and hold and stop with your own life.\r\n\r\n If I did that, Hubby would have been very ticked. Not only did life \"not\" stop for us but it grew with fullness, compliment and new experiences. Some of those very items which have now given me a career to live off of. I am glad that I didn't give up my life, me or anything else for those past years.\r\n\r\nEven at this stage ..even though I have people tell me that I lie when I say I have no regrets...\"I have no regrets and tell them I have no problem putting my head on my pillow at night. What about you?\"\r\n\r\nThe RoaringMouse


Hi--I'm so sorry that the relationship didn't work out. From my perspective: It's awesome you're dating! I've heard many women just shut down the idea of dating during caregiving. \r\n\r\nI think when we reach the 40s (I'm 50) the person we date will bring along his \"life\" (kids, aging parents, financial difficulties) just as we do. We all worry that we bring something into a relationship that won't be acceptable. And, the reality is--we all bring something that needs to be accepted. The right person will accept, no questions asked. \r\n\r\nI think it does take effort and work to make time for relationship. When the relationship becomes a priority, you make the time. \r\n\r\nI'm reminded of a family caregiver I knew about 10 years ago. She had wanted to have another baby but worried about bringing another child into her family and about how she could manage a baby, her other kids and taking care of her mom (who lived with her). She and her husband spoke about it and finally decided, Why would we wait? Why wouldn't we go for what we want? \r\n\r\nI often think of her when I'm tempted to put something on hold. :)


It is exhausting! Which is why all that you're doing deserves kudos. I just love all that you're doing and I love that you took the business trip. Because what you wrote (\"I do deserve a break every now and then\") is exactly what keeps you involved in your life.


I want to share a comment from, which helps you transition after your caree dies. I asked members and visitors of the site to share how current family caregivers can prevent regrets. \r\n\r\nThis comment (which I'll share again on another blog post I'm working on) really stuck with me:\r\n\r\n\"A few months after his death, which happened at home at 2:30 am, and after 4 years of his being beridden and requiring a lift for all transfers, I still do know that a better person would have done it all better, anticipated his needs better, even created a better memorial for him. I just cannot get over, in retrospect, the alarming ways in which I failed such a kind and generous spirit. He has left me without cares, yet I know that I had failed him so miserably. The only thing that I can advise to others after having experienced this is to actively seek out and hire respite care so that you do not become burnt out and fail your loved one. I intended to do so but when I hired a speech therapist for him my husband told me afterwards that the therapist had recommended the Hemlock Society to him—so then I felt that I could no longer trust hired help in my home. Do not make the same mistake. All people who do this kind of work are not jerks, I was just unlucky and should not have risked his future based on one bad apple. In the end, however, I do believe that he knew that he was loved, even if he loved himself less for his disabilities. And I believe that he is happy now–not just happy but soaring. Perhaps he received extra points in heaven for my ineptitude. Godspeed and thank God that we are merely human beings for a reason.\"\r\n\r\nHer suggestion (\"to actively seek out and hire respite care so that you do not become burnt out and fail your loved one\") is about understanding the importance of keeping your life as best you can. And, her comment really speaks to the damage done when you feel you must sacrifice your life. The sacrifice does not serve either party (the family caregiver or the caree). The sacrifice left such regrets! It also makes a life after caregiving ends so much harder.\r\n\r\nYou can all the comments_mysql from former family caregivers here:

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