Caregiving Training Wheels

Now that I am a caregiver for my youngest brother, Robert, I have realized my role in the family throughout my life has been that of caregiver. Providing care for Mom when I was a teenager and she was suffering horrible, debilitating, suicide-attempting depression and then again twelve years ago when she was terminally ill with liver cancer, were really just the training wheels of caregiving for me.

My first book Forever a Caregiver covers the “training wheel” experiences, the struggle to accept my family role as caregiver and finally appreciation of my family and acceptance of my role. Caring for Robert, working to help other caregivers and writing about these experiences could not have come about if I hadn’t fully accepted and appreciated my family and my caregiving role.

I wanted to give you a glimpse into Forever a Caregiver and have included an excerpt below. (If you are interested in purchasing you can do so either through Lulu or by sending me an email and I can ship to you with a personal message):

“More than a week passes after Mom’s birthday celebration when I finally call to check on her. It’s odd that Mom didn’t call me yet and it is so easy for me to let time slip with all the activities the kids are involved with, working, trying to find time with Richard – ah, life gets so busy. I usually check in with Mom more often than once a week so am feeling guilty about not calling sooner. Guilt is as much a part of me as my blue eyes and freckles, permeating everything in my life. Wins, losses, relationships, disappointments and successes. All are seen through a shroud of guilt. I love to win but feel guilty someone else lost. If I lose, I feel guilty I didn’t try hard enough to win. Am I being a good wife to Richard? Are the kids getting enough of my time? Did I do a good enough job with that work project? Guilt, guilt, guilt.

“I have learned to live with guilt by wadding it up into a little ball and pushing it into a tiny, dark corner of my psyche, not letting it get the upper hand when making decisions but when I don’t call Mom at least once a week, I know I will experience guilt. Guilt springs up, dances around wildly and stomps on my stomach.

“I tell myself this is normal.

“After the kids have been fed and have found a movie to entertain them this summer evening and Richard finds something to watch on the Sci-Fi channel, I snuggle into a corner of the couch for my visit with Mom. I ask her how the doctor’s appointment went. She hesitates and is clearly reluctant to tell me anything which is always a very bad sign. I press because I know she is holding something back and will eventually tell me if I ask her enough questions.

“Succumbing to my relentless barrage of questioning, Mom tells me that she actually had a couple of appointments last week. She first saw her doctor who, after she explained her stomach pain, ordered an ultrasound for her gall bladder. She went to the ultrasound appointment and the technician scanned her entire stomach, not just the small area of her stomach they had done before when she had gallstones. Mom said she knew there was a problem by the look on the technician’s face. Mom’s concern was confirmed when the technician called a doctor into the room and the doctor informed Mom that her liver was enlarged and covered with numerous suspicious spots. He immediately ordered a chest x-ray which then showed a mass on her upper right lobe.

“The doctor told Mom he is certain she has cancer.

“I haven’t called her in a week. It’s only been a week! How can this happen in a week?”

Have you had trouble accepting your role in the family? Are you the caregiver in the family or is that role filled by someone else? Have you ever thought your childhood experiences were the training wheels for what you are going through now? I'd love to hear your thoughts.