As I think about caregiver issues, the one that comes to mind most often besides being exhausted is the issue of feeling guilty when we take time for ourselves. Maybe I am wrong but it seems to be in every book I read on caregiving and in a lot of articles, testamonies etc. I must say it is a HUGE issue with me for a number of reasons.
Growing up with undiagnosed autism, I often appeared to be selfish or not wanting to be with others, not looking at others, not interested in engaging with others. My Mom, not understanding my extreme need to be alone at times, and the the exhaustion of engaging with the world, was forever calling me selfish. I don’t know if she just picked that word to best describe her frustration with me but I grew up believing I was basically the most selfish person on the face of the earth.
Thus, for most of my life, I have desperately tried to negate that despised word by trying to help others, give things to others, remember people’s birthdays etc etc. No matter how hard I try, I still feel the sting of that word and still feel I am selfish.
Enter stage left – my job as a care giver. No job is more selfless than being your all for a loved one. I have taken on the job of looking after Mom 180%. My whole life now, revolves around my Mom. Every aspect of her life I manage and I do it as if she were the Queen of England. I want only the very best for my Mom – nothing less will do. I go to great lengths to do the best for Mom including ignoring the advise of a number of people in my life who feel she should be in a Nursing Home. She IS in a Nursing Home – Lorna-Jean’s Nursing Home – the best one around!! I go to great lengths to get her exactly what she wants to eat, I bring her flowers from my garden or from a store. I will do ANYTHING to make my Mom’s end of life the best it can be.
So here is the question. Have I beat the selfish label by taking such good care of my Mom? Have I cured myself of this despicable title? Am I trying to prove to my Mom that I am NOT selfish like she has told me all my life?? Am I trying to prove it to her at the extreme cost to my own health and well-being?
Well, if I am honest with myself, I still feel very selfish. And here is the conundrum that faces every care giver. When is enough enough? When is it OK to take time for yourself? And take it without feeling guilty? I don’t know the answer to that because I feel guilty everytime I leave the house to do an errand or to do something for myself. I feel guilty if I am too tired to watch Lawrence Welk with her. What happens if she dies and I missed the chance to have that last time with her? There is always that fear. What if I miss an important moment with her.
BUT… what if I secretly desperately wish to just go away for a day and not have to worry about her? What if I want to go shopping and stay a little later than I maybe should? What if I wish I could visit a friend in another city? What if I secretly wish I could be released from this job of care giving? Oh Dear…. selfishness raises it’s ugly head. What if I wish I didn’t have to make her supper every night? What if I wish I could go out to my friend’s farm and not have to worry about staying a little longer than I should. What if I wish I could take a course in the evening or join the knitting club on Friday nights but Mom doesn’t like me out at night? What if I wish I didn’t have to see her decline in front of my eyes? What if….what if…. what if…. I feel so, so…so… selfish. There I said it. Maybe Mom has been right all along. Maybe selfishness is built right into my character and I’ll never get rid of it. There’s nothing like care giving to put a spotlight on feeling selfish. The most selfless job creates the most perceived selfish thoughts.
I struggle every day with this. The more tired I get, the longer the care giving goes on, the harder it gets, the worse Mom gets, the more selfish I feel. That old song “Please release me” ( just those three words) goes round in my head more and more and I feel guilty more and more. A never ending circle of selfish woes.