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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You are a disruptor. The delivery of health care starts with you, continues because of you, and ends with you. Let's disrupt together to make the world better for family caregivers. 
Karen
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
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 take care of me, just a little bit. My role is to watch over my dying wife, support my living children, and desperately attempt to focus enough energy on my job to avoid being fired.
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 talking to Denise Brown here on caregiving.com about this. She reminded me to remember and focus, on the love that is in our home. I want to pass this thought on to you.
Your children see your dedication to them and to your wife, what a gift to show them. I think the best gift we can ever give to anyone, is the kindness they see in our hearts.
I agree with what Jo wrote, that kids are resilient, and want to add that they are experiencing compassion through their dad’s heart.
My prayers are with each of you and that you will be able to feel more of a peace with your work, as you deal with the many many challenges at home. I hope you visit the site again soon, thank you for sharing.
sharon
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
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 having problems. She has been through some very tough times, but has come out stronger and smarter, wiser and more caring than I ever could have hoped for. My son also had plenty of hard times, and tough consequences, and after surviving plenty of bad decisions, is now a stellar college student, with over two years at his job. He refuses to consider doing anything but his absolute best, once he decides to start something. So now, the kids are lives are going in a truly awesome direction, but two or three years ago, I was extremely concerned about both of them. Please, keep telling me these things that I already know, but may have forgotten. Nobody else can do that without offending me, but caregivers’ tips mean everything – even if it is old news, I need to hear it from the right people, over and over.
Sharon, your story touches me too. My wife had a 10% chance of surviving for 2 years – that was nine years ago. Her strength of will is why she is here today, although the vast majority of that time she has been unconscious. We shared a beautiful morning today, and it made the past six weeks of anxiety just fade away. Six weeks ago, she started the chemo again, and the bad side effects came back almost immediately (for her and me). Sometimes I feel like I would be better off without all the fear and sadness, but then I would not be able to enjoy those wonderful, if brief, moments when we are like a couple again. Those moments make my day. I even got some work done !
My gratitude to all.
Bette
Hi Tom,
I’m so glad today was (and started out) so much better. I need to relearn so many things in caregiving and appreciate the comments and support here as well. It’s such a unique place where everyone here understands and sincerely cares for each other. I hope you have a good night and that tomorrow is a good day as well!