Friday, March 27, 2009

Today I comfort myself by re-reading an op-ed I had published in our local newspaper in response to an editorial "Help Also Needed for Caregivers"

The editorial states that "only about one in twenty of the caregivers said they were not doing well." This figure alone is serious enough but it's nowhere near the whole picture.
If I was asked today, I would say I was doing well. I am. I have health problems of my own but they are taking second place in my life. That's where they should be. If you asked me if I was happy, I would say yes.
Then ask me if I live my life with a deep-seated sense of sadness and dismay and I would say yes, because that is true. I currently caregive my mother, who is 94 and blind. There are moments and days of joy, but the sadness is there. I lose a bit of her every day.
I no longer expect my mother to put her arms around me and comfort me if I have a loss – instead I imagine Mom lying on her side in the palm of my hand. I feel her frail body while I hug her and she tucks her head under my chin.
I love Mom to distraction and yet the load of being the repository for her memories is heavy. Being her best friend all the time weighs on me like the weight of the Dorian Gray.
I am overloaded by the need to be alert all the time. I fight to unclench my teeth despite my determination to understand that her brain has lost its elasticity and some of its synapses. I must always be here. She deserves that care.
My friends don't want to hear about my issues with caregiving, home support and loneliness. Balancing my life is my issue, known only to myself. When I get short with Mom, which I do on occasion, the guilt is mine – even when she forgets that it even happened.

This comforts me because it brings me into a large community of family caregivers and I feel less insane.


  1. Barb, my heart goes out to you. My own mother is 86, but thankfully still is alert and functioning -- although she's frail and cannot walk without help. Until three months ago, I balanced helping my mother with caring for a chronically ill husband. Anti-stress medication helped me get through the insanity. Even now that my poor husband passed on, I'm loathe to give up my happy pills.

  2. Had a bad week - Mom very obsessed with one bodily function - tells me again and again that the doctor changed the medication and that's why she's having this problem. Doctor changed the medication two years ago so this was a simple problem - she ate something wrong or has a touch of a flu. I tell her this. She argues - tells me that the doctor just did this change. Everything is compressed now. Everything she remembers has just happened. I tried to reason with her, she argues, I explain again, she argues until I finally got mad and yelled. Was very ashamed of my own behavior in the situation. I find it hard to realize that mom, my bright intelligent mom, is now unable to learn.
    At the Alzheimer meeting that night, I cried. So disappointed in myself - partly that I could not make her "get it".
    Learned that what she was doing is commom with dementia. It is called perseveration. It happens when one idea cycles and cycles through the brain. Nothing can change it. Useless to argue, lecture, try to teach or try to fix.
    "You know what perseveration is.....per per per." That joke was made at the table and I laughed. I now have the tool I need to deal with future cases when Mom is driving me crazy circling an idea. I can think "It's perseveration - per per per" and have a private giggle - just for me.
    When I saw her Friday, she had forgotten all about the intital problem. Yeah!!!!