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.

Avatar of Denise

About Denise Brown

I began working with family caregivers in 1990 and launched CareGiving.com in 1996 to help and support them. Through my blog, I share words of comfort and offer coping strategies and tips. I also write opinion pieces about recent research, community programs and media coverage of caregiving issues. I've written several caregiving books, including "The Caregiving Years, Six Stages to a Meaningful Journey," "Take Comfort, Reflections of Hope for Caregivers" and "After Caregiving Ends, A Guide to Beginning Again." You can purchase my books and schedule a coaching call with me in our store.

23 thoughts on “ARGH: It’s Not About Putting Your Life on Hold

  1. Avatar of ejourneysejourneys

    I’m nodding at your screams, Denise! :-) If ever there were a need for an op-ed article…

    “Putting your life on hold” plays into every martyr/saint stereotype, which serves to further isolate caregivers IMHO. (I view my own life as being redirected by circumstance — radically changed, yes, but not put on hold.)

    Furthermore, that kind of pigeonholing can be dismissive and therefore damaging, especially with so many services being cut. (Why bother being an activist and a disruptor in the hope of improving conditions for caregivers when we are “content” to “put our lives on hold”?)

    After all, not being content can make us dangerous. :-)

    Reply
    • Avatar of DeniseDenise Post author

      Yes! And, I also think the hard part is not putting your life on hold. It’s hard to figure out where the help is, it’s hard to ask for help, it’s hard to juggle and experiment. When you don’t put your life on hold, you take risks and challenge yourself and push yourself outside of your comfort zone. That’s all hard to do–and must be recognized and celebrated. It also must be modeled so others know how to do it, too.

      Reply
  2. Don

    Yeah, that’s got a whole tonne of victim-hood roaming about. I really like the criteria you established Denise and frankly am gonna steal them for a new blog! Thanks for the inspiration.

    Reply
  3. Avatar of CasandraCasandra

    Even with everything that is going on right now for us and all the uncertainty, I am finally realized the importance of taking that time for me. It makes me less moody… LOL

    Seriously, this is what people need to know and learn… how to use and find their resources and how to remember to take care of themselves. Your criteria, Denise, is what people need. Not the opposite. What helps me is hearing about the person who is taking care of someone and going to school or finding a way to get promoted at work and also helping others. Those are the things that inspire us.

    Reply
  4. Maria de los Angeles

    This a great question and a definite Catch-22. I do take time for me, but that eventually does mean putting other stuff on hold. There are only so many hours in the day. I do love the idea, however, of not considering one’s self as a victim. On the contrary, one is offering service to those who have taken care of us in the past and this should be approached with an attitude of honor and dignity, rather than one of victimization.

    Reply
    • Avatar of DeniseDenise Post author

      Hi Maria–It sounds like you’re doing your best to compromise as you can (rather than sacrificing). “I do take time for me, but that eventually does mean putting other stuff on hold” sounds to me like you’re living your life within caregiving as best you can.

      I’d love to know: How you make sure you take time for yourself?

      :)

      Reply
      • Maria de los Angeles

        I am trying, Denise, but I find it exhausting. It’s like I have two 80-year old children and two households to manage, i.e., from a financial standpoint.

        So lately, I just opened up space in my life to rest and do whatever I want when I can without the added pressure of “I HAVE to do this or that.” In a way, letting go of my previously active lifestyle has just afforded me room to “just be,” and be very selective about what I actually do. But I’m a freelance lifestyle writer very involved in social media, so as you can imagine, not being to show up to everything “in real life” is holding me back. I just don’t have the energy, but maybe the universe is trying to tell me something — that it’s time for me to cocoon for a little bit.

        I do however treat myself to a massage and mani/pedi and I do enjoy cooking food for myself and my parents. And I just took a press trip, insisting that my siblings help because I can’t do everything 24/7 and I do deserve a break every now and then. Luckily, I have one sibling who is solid as a rock, very reliable and we have the collaboration down to a T.

        Also, I was fortunate enough to find an apartment literally next door to my parents in a building down the block, so I can supervise the situation but still have my own space and its a pedestrian-friendly neighborhood, which I love.

        We could hire some form of custodial care, but my mom has a very hard time with strangers in the house and she is reluctant to go to a daycare senior center. She couldn’t even handle leaving my dad alone in outpatient therapy for two hours. Since my dad can no longer drive, this is a huge challenge on them emotionally. I could take them places, but they don’t want to go, yet they don’t want cabin fever either. I have to remind myself constantly that their issues are part of their personalities, even though it hurts me to see them suffer. But I’m really stuck between a rock and a hard place, because I know there are resources, but I can’t *force* them to do things (other than necessary medical visits, etc;), they are still adults, after all. I can only encourage, but can’t force.

        Reply
        • Maria de los Angeles

          Denise, I also want to add that a man I was seeing for many months was a former caregiver and now a widower. And I know that even mentioning the word hospital is an issue. Bless him, he took care of his wife and I think it freaks him out to move on long-term in another relationship as it must be painful.

          Caregiving for elderly parents affects even your personal relationships to others and that’s something I’m trying to figure out, because in your 40s, you are bound to have someone who is old or sick at this point in life and dating is a challenge as I can only be with someone who would accept my situation. And then I have to accept that a guy has kids or old folks to take care of — so how do you make “us” time? It’s not that this man didn’t/doesn’t accept it, but I *know* it affected us and that was/is a learning process for me.

          Reply
          • Avatar of DeniseDenise Post author

            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.

            I 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.

            I think it does take effort and work to make time for relationship. When the relationship becomes a priority, you make the time.

            I’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?

            I often think of her when I’m tempted to put something on hold. :)

        • Avatar of MM

          Boy that you could take them but they don’t want to go… not wanting people in, but not wanting to go out… I get that all the time. But it is what it is. We still have to arrange to go out sometimes or go nuts. I take short mircolocal trips where I am gone for only a two hours or so. I set everything up in advance, comode, snacks, phone, water glass, tv control, reading material, puzzle books. Nothing is more than an arms reach away. It’s tricky. So darn tricky.

          Reply
        • Avatar of DeniseDenise Post author

          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.

          Reply
  5. Avatar of DeniseDenise Post author

    I want to share a comment from AfterGiving.com, 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.

    This comment (which I’ll share again on another blog post I’m working on) really stuck with me:

    “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.”

    Her 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.

    You can all the comments from former family caregivers here: http://www.aftergiving.com/2013/01/how-can-a-family-caregiver-prevent-regrets/

    Reply
  6. Avatar of PegiPegi

    Hurray, and that is why your our champion! I am coming up on the first anniversary of my husband needing me relatively 24/7. To advocate putting your life on hold is the “easy” way out. At least for me, maybe a bit of the marty syndrom; maybe just scared to death that something may happen if I turn my back. That is exactily what my first mistake was. It has only been in the last couple months that I have learned to let go. I realized my constant hovering and caring were denying him the oppotunity to become more independent. Left more to his own devices he has! He now has a social life that doesn’t include me. And I? I’m trying to remember all those projects and creative outlets I had planned to revive when I retired. I love your statment: “caregivers must reflect their ability to move through life with caregiving along side.” That is going to be my new motto. Once again, thank you for the insight.

    Reply
  7. Avatar of Roaring MouseRoaring Mouse

    To give up your life… to me means to put things totally and hold and stop with your own life.

    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.

    Even 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?”

    The RoaringMouse

    Reply
  8. Avatar of JaneJane

    I listened to the call in show last night and I cried through the whole thing… partly because of the trying 48 hours that I had just had and partly because in a lot of ways I feel like I have put my life on hold but I don’t want to feel this way.

    Every time I have something I want to do and when I am going to do it and then Nicole needs me to help her with something and I have to bite my tongue not to let it show because I don’t want her to not ask for help but I feel resentful because I don’t feel like I have a life outside of caregiving… because everything I do and am touched by has to do with Nicole’s health. Hence, my comment during the book club discussion that this is my destiny even though I fight it. I need to find a way to embrace it and incorporate a passion within my caregiving role that I feel is just for me and not because of Nicole.

    This was food for thought. I don’t feel we should put our lives on hold to be a caregiver but I struggle with these feelings and feel like I do more than I should.

    Hugs:o)
    Jane ~ mom to Nicole
    “You’re braver than you believe, and stronger than you seem, and smarter than you think.”

    Reply
  9. Avatar of G-JG-J

    Denise, I agree that giving an award to people who put their life on hold to be caregivers is not a way to encourage people to be family caregivers. It is instead a way to get people to run screaming in the opposite direction as fast as they can! No wonder they are awarding people $10,000!

    I think it is much better to spotlight those caregivers who juggle caregiving and working while still writing and advocating for family caregivers. That describes Trish and others on the site.

    Wouldn’t it be better to acknowledge that life may change and be different, but it doesn’t end? Caregiving is a great time for reinventing yourself! Maybe the pre-diagnosis life doesn’t fit with the new responsibilities, but something else probably does.

    When you put your life on hold to be a family caregiver, you are left with a bigger problem should your caree die. You are no longer a caregiver and you have no identity to know where to start on life’s altered path.

    Reply
  10. Avatar of TrishTrish

    @G-J, You are spot on! A caregiver’s life may change but it can’t be put on hold. So many people find their purpose while helping their caree or caregiving puts them on a path to helping others (look at @roaringmouse or @jbones1961 who was inspired to get the pharm tech cert because of caregiving – and many others). It means the world to me that you included me in the list, GJ, so thank you so much. I needed a pick-me-up tonight and that fits the bill! :-)

    Reply
  11. Avatar of sheilasheila

    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.

    The 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.

    There 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.

    As 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.

    Reply
    • Avatar of DeniseDenise Post author

      Hi Sheila–What’s great about our community is we really want you to make the decision that’s right for you. This is your choice and we totally understand and honor it.

      It is hard to leave. It’s one of the toughest part about the caregiving experience. If you ever want to make a different decision, just let us know. We can help and support you so you can continue to make the decisions that are right for you. :)

      Reply
  12. RoaringMouse

    This popped up on my radar again. Thanks @Trish for doing this.

    As I looked at Denise’s comments, yours and others…and as I recalled the caregiving awards I received…I don’t see how you can be a successful caregiver if you put your life on hold. The awards I received were because I continued to live in the community while simultaneously being a caregiver. They were recognition for not pulling away from life but for my continuance and determination to thrive in it.

    Having looked back I have zero regrets! I also give credit to it as it was/has allowed my to thrive beyond Spike’s passing.

    Here’s a piece of philosophy that we lived by and always smiled when we said it: “We are no different then anyone else in America. We go to sleep at night, we get up in the morning, get dressed and have breakfast. What makes us different from you is that we might conduct our day differently. But at the end of the day we are very much the same!”

    Being forthright…I think if you are stopping life to address caregiving then you are setting up a wall in front of you to prevent yourself from addressing some aspect of caregiving that you don’t want to.

    Again I say…@Denise you have it right!

    (Thanks again Trish for the reminder!)

    RoaringMouse

    Reply

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