Recently I
have been giving a lot of thought to a question that was posed on a forum for
caregivers. The question was something like this: What do you miss most since
you became a caregiver?
It did not
take very long for me to compose my answer. I miss doing things with my husband as opposed to doing
things for my husband.
To be
perfectly honest, I cannot even begin to figure out when we made the transition
from a “normal couple” to full time caregiver/care receiver. It snuck up on us when we weren't paying attention. There once was a time long ago when we enjoyed
everyday activities such as preparing a meal together, working in the yard,
taking walks, DIY projects, going places
together (other than doctors’ appointments), pillow talk. There was a time we
laughed together often, entertained friends, traveled, made love….Life was good. There was no denying it.
No one could
have predicted that our lives would be turned upside down. Yet, chronic illness
and disability have a way of doing that. It has robbed us of many opportunities
to enjoy life. It has isolated us. It’s stripped our dreams away. It’s changed how
we interact with one another.
These past
few months as my husband has been hospitalized or in rehab I have had a few
chances to get out of the house and enjoy some leisure activities with friends.
As relaxing and fun as it was, it wasn’t nearly the same as enjoying it with my
husband. However, if I am honest I have to admit that watching other couples
holding hands and laughing or dancing together or simply choosing paint at the
hardware store pains me once in a while. I miss “us.” I miss the crazy,
spontaneous, fun-loving couple we once were.
So, what are
we, the couples living with chronic illness to do? If your spouse is a shut-in
or if he/she is in long term care, how do you maintain a sense of being a
couple? How do you avoid the trap of becoming simply a care giver and care receiver? What do you miss?
I’d welcome
your comments.
My story is different, as I am caring for a father-in-law, but it is still pertinent, in that I now don't "visit" him and chat while he fixes me lunch. I now take care of him and that includes personal care he and I never ever dreamed would become our "new normal." We have a day every week set aside for us to just have fun. I didn't want to just caregive. I wanted to continue to be the good friends we always had been. So, if he's well enough, I strap his wheelchair into our wheelchair van and we take a drive and admire scenery, stopping for lunch or eating in the car at a pretty destination. If he's not well enough, we have a movie night time complete with popcorn. Or we work on a puzzle together. Or we sit on our deck or by the fire in the winter and I ask him questions about his life as a kid. We talk and chat and forget the caregiving parts. We are "us." Wednesdays are "our" days to recapture what once was as best we can. Of course, I chat at other times, too, but that one day it's very intentional.
ReplyDeletePS - I am Sharon Gamble. OOps!! Forgot that my "code name" would show up. Isn't it a nice one, though??
ReplyDeleteI love it!
DeleteHi Sharon! I just love the fact that you and your father-in-law have established this very special routine. You both are so fortunate that you've been given this wonderful time together where you are able to do things and talk. Once we slow down and learn to appreciate the simple things it gives us all a new perspective. Thanks for sharing. ... Valerie
ReplyDelete