Dec 13, 2011

It Isn’t Fair

Yes, life is not fair at times. But it is also not fair to cheat life, both for the person with dementia and the caregiver.

By Monica Heltemes

This was said this morning by my husband when one of our children became suddenly sick. Of course, it put a kink in the plans for the day, which included Christmas to-do’s.

It got me to thinking about others in my life who have experienced things that “are not fair”: a young girl from our church hit by a car as she was walking with friends; a family friend and young mother who lost her battle with cancer earlier this year; and our daycare provider who battles chronic health conditions while tending to her family and the children of other families.

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Have you uttered this phrase in your family’s journey with Alzheimer’s?

Absolutely, Alzheimer’s is not a fair disease. It robs people of their memories, stripping away the essence of who they are bit by bit and breaking the lines of communication that tie them to family and friends.

Grieving these losses is a normal human reaction. But if the grief and despair overwhelms your daily life, it is no longer normal and can interfere with your functioning. The good news is that that dwelling on the negatives need not be the whole story. Instead, you can reframe how you look at the moments of daily life with the person with dementia.

This is what I have learned from my friends and their circumstances.

For the girl at church, our community did not dwell on her injuries but instead rejoiced how lucky she was that it was not worse.

For the ill young mother, she continued to work as long as possible, coached her daughter’s softball team, and was a common face at activities in our community, all while undergoing treatments. She chose to live and savor the joyful moments as they came.

For our daycare provider, she has built herself a strong network of support to help out when needed and to share the medicine of laughter with her as much as possible.

Perhaps your caregiving tasks or outings do not go as planned - maybe the person with dementia gets mad, stresses you with repeated questions, or does not want to do what you are asking. You may become upset, frustrated, and angry yourself – THIS IS NOT FAIR!

But…. is there a glimmer of humor, a smile of joy, or a shared moment of togetherness that may have occurred that you did not even notice?

Can you think differently while in the moments of the day and recognize these gems of life that still remain?

Yes, life is not fair at times. But it is also not fair to cheat life, both for person with dementia and caregiver.

Dedicated to Carrie, whose courage and spirit will not be forgotten.

Monica Heltemes is a practicing occupational therapist and owner of MindStart™. MindStart designs hobby-style items, such as games and puzzles, specifically for persons with memory loss. They keep persons with dementia active, while giving support to caregivers, and are quick and easy to use. Visit MindStart (Activities for Persons with Memory Loss) to learn more.

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Original content >Monica Heltemes, the Alzheimer's Reading Room