Because we care

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My friend and fellow writer, Doreen Pendgracs, recently wrote a blog about being a caregiver. I wanted to comment on it, but what I wrote was my own mini blog. With Doreen’s gentle prodding, I realized that writing about something personal can also be a valuable use of words.  So here are my thoughts.

Most of us don’t go into relationships thinking about our possible role as a caregiver, but I knew from the day I met my husband that this would be my lot in life. I was in my 20s; so young and sure I could cure the world. It didn’t happen, and fighting it only wore me down.

We were told the original illness would eventually burn out, but if it has happened, it never really ever goes away. Like a chameleon it transforms and reveals itself in new forms, and I go into my caregiver mode again as we rush to the nearest hospital emergency room.

Our daughter grew up thinking that that all of this was normal for any family. As my husband convalesced in hospital following yet another surgery I would bring her, along with paper and crayons, and she would sit there creating her make-believe worlds with the reality of pain and suffering as her quiet background. When it was time to go I would lift her up and she would carefully navigate through the mass of tubes and IV lines to give Daddy a goodbye kiss until tomorrow. How could anything so unnatural feel so normal? And yet, for us, it always was.

I believe care giving can sometimes be more draining on the person giving the care, because of all the worry we go through. And with the health care system as it is, we have to be strong advocates for those we’re caring for.

I have had to make numerous phone calls to track down the right specialist to take on a new manifestation of the illness that was once easily diagnosed. I have had to yell at interns until someone listened. And I have cried on my own when I couldn’t take anymore, but I couldn’t let anyone else see how overwhelmed I was.

I think care giving is humbling and an important role in life. We do it because we love, and because we care. And because we care we give of ourselves.

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16 responses »

  1. Interesting. When my husband married me he knew he was taking on that role. Being legally blind is an interesting conundrum because you can see, and most people assume you see the same things they do, until you can’t read a street sign, or a telephone book, or a recipe, or instructions on a medicine bottle or…

    I don’t recognize people from a distance, not even my own husband or children. I am nervous to speak first in case the sort of familiar face – isn’t. I don’t think when he married that cute blond with the long white hair whom he called Galadriel that it would be a life of rescuing me from from my constant over reaching of my abilities. I suspect at times it must be really wearying.

    But we’ve been together 41 years and I love him more now than ever.

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  2. I agree, completely. It takes a very strong conscience and respect for life for a person to be a care giver.

    However, all things come to an end. Caregivers are forever in a battle of what ifs as they recover from giving someone else a substantial part of their own life to improve and prolong another’s. Knowing they did the best they could is the only outcome.

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  3. Thanks for the reference to my own post, Suzanne, and to accepting my challenge to write your own blog on this subject.

    Caregiving is something that nearly everyone of us will have to embrace at some point in our lives — whether as the givers or the receivers of such care as Veronica has mentioned.

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  4. Suzanne, this thoughtful post has me wondering–not for the first time–if I could rise to the caregiving challenge you describe here. As my husband and I grow older, I realize we’re the temporarily well. I’ve never been the most nurturing person, never one to bring a tray and a smile when my husband or son was sick in bed. From what I hear, the need to care draws out something in people that they may not have known they had to give.

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  5. Rona, thank you for your post. I do believe you would rise to the occasion when needed. We all have our own way of being care givers. I don’t have a smile or a tray in hand either. My way was being the advocate and taking control to get the help my husband needs when he needs it. It’s like that adrenaline rush we get when we’re scared. It pushes us forward without even thinking about what we’re doing. I know that whatever you’re needed for you’ll come through for the ones you love. You will do it in your own way and that will be enough.

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  6. Thank you for sharing your personal story Veronica. I wasn’t even aware of your situation. You seem to handle everything so well and naturally. Since my post here I have heard from several people who are in the care giver roles and did so willingly, at the start of a relationship. Their stories are inspiring. I am sure your husband is an amazing man!

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  7. What a beautiful post, and so true. Your sentence about crying on your own really gets to the heart of it. You’re not the one going through it, so you don’t feel comfortable letting others see that you’re overwhelmed by it–but even caregivers have to let themselves feel overwhelmed.

    Thank you for sharing your story.

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  8. Thank you for this post, Suzanne. It’s very honest. I think we caregivers are often misunderstood on many levels. People either vastly underestimate the impact it has on our lives, or they peg us as saints for doing everything that we do – and assume they could never do it themselves. The reality is, it’s our reality. The key is to make sure you have systems and supports in place so that it becomes a normal lifestyle and not a burden. (Easier said than done sometimes!) But the bottom line is we love our spouses and they give as much to us as we to them. As for those challenges, they’re all part of the package if you want the prize.

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  9. Thank you, Suzanne for your very, very moving post. It made me misty-eyed. Am in a different situation from yours. As the closest child (and daughter) to my elderly mother, I’m primarily responsible for providing her with emotional support.

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  10. Thank you for sharing so meaningfully and truthfully what it’s like to be a caregiver for you. A friend of mine worked many years in the early days of CARP advocating for assistance for caregivers. Without her support (and providing information on the subject) I don’t think I would have made it to be the caregiver I am today.
    For me, it’s been eight years that I have been caring for my 96 year old father. It’s only me as I live alone and have no siblings or children.
    The gifts that I have received in knowledge of myself, my family background, the giving and receiving of love from all the frail elderly I have come in contact with, not only my dad, has truly made me a better person.
    I wouldn’t change my life for anything, even on the days when I am exhausted from ‘fighting the system’. (I’d hate to end up alone in a hospital or nursing care system without a loving advocate!)
    Truly, it is greater to give than to receive. By doing so, one ends up the receiver in the end.
    Thanks again Suzanne for this post, and for being the wonderful person you are.
    mj

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  11. Lovely thoughts, Suzanne.

    Have you ever heard of the radio series “This I Believe?” Your post sounds pretty close to the kinds of submissions they get and sharing this (they also publish submissions in books and their podcast) would ensure it gets to the wider audience it deserves.

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  12. I had not heard about this, Luigi, but I will submit it and see what happens. I will let my reads know if it gets into the CBC radio series. Thanks for the heads up and your kind words.

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  13. From September 2011 until my mom’s death in November 2012, my mom went from being independent, getting her own groceries, doing her own banking, walking everywhere and taking rides under protest to living in a nursing home and using a walker. An only child, mom’s care fell to me and the demands increased quickly from taking mom to daily weekday appointments to going twice a day to take care of her. I rearranged my life, the family activities and my work to suit when mom needed me,making all the heart-wrenching decisions about taking mom to the ER, taking her to the doctor, fighting for adequate support and overseeing her care, to emptying her apartment, placing her in a nursing home and finally, holding her hand as she took her last breath.

    I had no idea how tired and drained I was until mom died. I had been running on necessity and sheer force of will for so long. I’m still creating the “rest of my life.”

    Caregiver burnout is well known in medical circles, but less understood or addressed outside the health care field. The push is to send people home, but care then falls to family members with little training or resources to cope with the overwhelming demands. We do what we need to do, often at the expense of our own health.

    Hugs.

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  14. Thank you for sharing your story, Lisa. I remember reading all your posts on Facebook, but reading it all in condensed form like this I am reliving some of my many care giving roles.

    I am particularly sorry that you are an only child, having no one to help you make decisions and deal with the physical and emotional ups and downs. My sister and I actually became closer dealing with our mother’s illness. We were always very different but, as adults, it turns out that those “differences” are actually our own personal “strengths” and they worked well together.

    When I initially wrote this blog I really wasn’t in touch with the actual emotions; more of memories really. Now that I’m reliving it again I’m a total basket case trying to advocate. but being older and feeling more worn down.

    Please send good thoughts our way. Hopefully this will turn out to be minor. Hugs to you too.

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  15. I remember well my time spent playing advocate for my husband when he was ill. Even though he was the “patient” and I only a mere wife, I still had to be up on his every nuance to fill in the myriad of doctors and nurses that marched through our life. For every time that I was relegated to the wings, I was turned to twice over to explain it all in time of crisis. All while also playing primary caregiver to our two young daughters. It felt so wrong to traipse them through the Cancer Clinic and have all those sick people oh and ah over them, but we belonged there as much as they did. And like your daughter, mine too knew no different. It was our norm. Whether I liked it or not.

    Prayers for you having to revisit this world again Suzanne. It is a difficult time. The strength you find is incredible, but I remember how draining it can be. Take care of yourself as much as you can.

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  16. Thank you for sharing your poignant thoughts and story, Katherine. I can’t even imagine what you went through. My heart goes out to you.

    I am finding that as I get older I have less energy to push back at the system, but we find our energy when we have to for those we love. I actually got a great deal of respect and some very focused one-on-one time with the doctor. He was young. making me hopeful that this is the new generation of health-care providers who take the time to help the care givers understand and answer our questions.

    Hugs to you and thanks for sharing your story.

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