Tell Us: How Do You Describe Your Caregiving Role?

Yesterday, on Huffington Post, Eliezer Sobel wrote about how we use our time.

He then related a story about recently reconnecting with a childhood acquaintance (he tormented her in the playground so you can’t really say they were friends). They exchanged updates; she visited his website which features his two published books.

How accomplished you are, she wrote to him. I’m the greatest underachiever of all time, she said.

Then, Sobel tells us his friend’s story:

“…She had been inseparable from her younger brother when growing up, and when she was 20 and he 17, a wave snapped his neck and made him a quadriplegic for life, and she a lifetime caregiver, not only of him, but eventually of both her parents as well. She described beginning her day–for decades–at five in the morning, in order to go and help him before going to her own full-time job, then returning each night to drain his kidneys. She sat long hours and days by his bedside during his not infrequent, prolonged hospital visits, since he was unable to even ring for a nurse. Between her brother and parents, she described herself as handling everything: ‘…finances, emotional needs, living arrangements, groceries, overseeing their medical care, hiring doctors, terminating others, underwear, making them feel safe when it seemed impossible… my father had Parkinson’s Disease for over 45 years, and my mom functioned with only 23 percent of her heart. I was the other 77 percent.'”

Obviously, she’s far from being an underachiever. Yet, I think she gets caught up in the trap so common in caregiving. Caregiving won’t buy you a bigger house, or a vacation to Europe, or a corner office. The success of caregiving can’t be measured in a growing bank account or a year-end bonus. And, worse, you can’t really improve your caree’s condition—you work daily to maintain the status quo.

Caregiving seems to go against society’s grain of how success is defined.

It’s no wonder the tendency may be to underplay its importance. “Oh, I’m just home with Mom these days,” you may say. “Well, much of time is taken with helping my spouse,” you may explain.

How do you describe your caregiving role to those you meet or to friends with whom you reconnect? Which words truly reflect what you do?

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About Denise

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.

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Karen
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I generally tell people I am the head of household, the only “responsible” adult, with two adult “children”. I do all that I do out of love and because, at the end of MY life, I want to feel that I have grown up spiritually.

Tom
Guest

I don’t want to talk about it unless the other person has truly “been there”, preferably through the cargiving with a spouse, with children in the house. After 11 years, and now the renewed chemo, I am so frustrated, angry, depressed, anxiety-ridden, distracted, lonely, desperate, and fearful – I can only fake it or hide it or risk scaring the crap out of people with what I am really feeling. How’s that? I feel like I am slowly losing it, and I know from experience that people don’t react very well to that. I want someone to hold me, to… Read more »

Bette
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Bette

Hi Tom, I am so glad you found caregiving.com, but am so sorry for all you are enduring. I do not take care of my spouse; I take care of my mother. She has been with us for 8 years after suffering a stroke. Recently she struggles, as she declines from dementia. What I can relate to though, is your concern for your children. We have three children, our youngest was a baby when my mother had her stroke. I am always so concerned that they see and experience too much for their ages (14, 11 and 8). I was… Read more »

sharon
Member

Tom, your story touches me. I am a caregiver for my husband. My husband is 4 years into a neurological disease that usually ends in death in 6 to 10 years. It is a long hard struggle.

I hope you will keep returning to this site. There are people here who are also going through caregiving struggles. You will find comfort in knowing others care and understand in many ways.
My prayers are with you.

Tom
Guest

Thank you so much Bette and Sharon (and Karen and Denise), Bette, you make an awesome point about the kids, and what they are learning without anyone trying to teach. It makes me wonder how many people they will be able to help in their lives, because I know they have very rare, and highly developed skills that will benefit the world. My daughter is incredible, and has always been a major standout in the field of compassion. She used to get in regular trouble at school for stopping what she was doing in order to help others who were… Read more »