Caregiving sucks.

Caregiving sucks.


There.  I said it.


I was thrilled to see the Huffington Post article (link posted at the end of this post) hit my facebook feed this morning.


Short version of the article – caregiving sucks for lots of well-documented, very valid reasons and it is okay to say that.  Saying that caring isn’t much fun does not mean we love the person we care for any less.


As I have said a million times on this blog, it is non-caregivers who often paint caregiving as a rewarding, spiritual, gift-laden journey.  My response to that comment is that is it not the caring, but the relationship with an important other that is rewarding, spiritual, and gift-laden.   I don’t know about you but I haven’t found the last two decades of sleep-deprived, stress-laced care a picnic.  I care because I have to.


As the article suggests, performing demanding, exhausting, isolating, career-killing, injury-risking care day-in and day-out care for decades  – yes, in my case we can measure my caregiving in decades – ain’t a rewarding journey.   Painting it as a rewarding journey simply serves non-carers well.   Because if I am on this rewarding journey then I don’t need help, do I?  Painting caring as an ultimately rewarding journey lets the rest of the world off the hook.


I love my son and it is for that reason alone that I have spent the better part of the last two decades placing his needs above my own.  But just because I love my son doesn’t mean that I need to celebrate that I sometimes spend more time changing (adult sized) poopy diapers than I do engaging in my own self-care.


So you know what world.  If caregiving is such a fantastic deal I have an offer.  Come on over to my place.  I will private message you my address.  And for free you can spend a few weeks engaging in the spiritually-laced, infinitely rewarding journey of caregiving for a profoundly disabled teen who requires 24-7 care.  I will stand back and let you change diapers, and dress and transfer my 120lb son.  I will give you a crash course in g-tube care, seizure management, medication administration, and so on,  and I will stand back and let you vent stomach contents so you can get the full experience.


My theory is that after a few days of this experience lucky participants might be more willing to support more comprehensive home care and greater caregiver supports for those of us who spend the better part of our adult lives as extreme caregivers.



2 thoughts on “Caregiving sucks.

  1. The Huff Post article is my story, only it was with my father, and the day he got out of ICU I was told he couldn’t go home. It was a nursing home–the nearest one that would take peritoneal dialysis patients was an hour and a half from us and he would have been miserable-or our home. So we had two weeks to make a room in our house work for his needs. My contractor newly established and untried, was a saint and is the reason I still use him for everything. His wife knocked on my door one day with a wonderful Iranian dinner for my family because when her husband told her about the job he was doing and why she thought my life sounded overwhelmingly busy.

    The hospital social worker, in the meantime, offered me a support group for families of home kidney patients. I asked if the relief funding for that could go for an extra two hours of personal time just to do my work. Oh no, that’s not what it was for, and the sessions were only an hour a week. I explained to get there and back would take me 45 minutes each way and that I really, really didn’t need anything more to fill my day. I had enough activities, so I declined. I learned later that she never got that group going. I wonder why?


  2. Finally someone said it! It’s a different situation for me as I take care of my grandmother who has dementia, but I get the same responses from people telling me it’s a rewarding experience and that I should be grateful that I’m able to embark on such a “rewarding” journey. Though what also irritates me is when someone will say “you’re such a nice person!” or “this will teach you so much about life!” Everyone offers their cliché little platitudes, but in the end they do nothing but stand by with gaping mouths. I find that people try to help in a way that requires that they do nothing.


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