A Caregiver's Story: Finding the Joy in the Little Things

by Suzanne Wiley

I am in Oregon to care for my mother, Roberta, age 97. She is an insulin-dependent diabetic who is severely arthritic, hard of hearing, and has suffered four strokes over three years. She is paralyzed on the left side and will never walk again. She can make only the simplest of moves. But her sense of humor and mental acuity gives joy to her family.

My daughter Amy is her primary caregiver. This came about for two reasons: after my father died, Roberta invested in her granddaughter's home by paying for a mother-in-law addition; and because my husband was diagnosed with terminal lung cancer at the same time when my mother began to recover from her first major stroke.

So, where was our joy? One always hears about the burnout of caregiving. How lonely the task can be. An unending and unbearable experience of body frailty and odors. My earliest caregiving experience was with my mother-in-law, Anna. This was before the hospice movement caught on in Seattle. And although I was using every ounce of my energy caring for her, I would also have moments of well-being where I felt the strength to go on. 

Over time, I have asked why this experience and the subsequent ones with my father, my mother and my husband Edward were of such emotional benefit. While I dislike lists, it is the only way of telling what have been the essential and key elements of caregiving for me and my family.

1. Maintaining a schedule that supports regular breaks for the primary caregiver.
2. Obtaining the commitment from all family members to keep our family cared for at home.
3. Providing a cheerful outlook for your loved one. A window overlooking the world of flowers, birds, sun and rain. No window? Find another way to do it.
4. Encouraging the talents of friends in special moments, such as singing familiar songs, playing the piano, reading from the bible or a book, playing cards, giving beauty treatments.
5. Preserving your bodily and monetary reserves by finding a way to have a paid or volunteer caregiver and chore worker regularly.
6. Expressing honest emotions, be it love, frustration, sadness, humor or irritation.  This is okay as long as it is followed by mutual openness and discussion.
7. Doing something that strikes the "belonging" chord of the invalid, such as listening to folk music, watching tennis matches or golf on TV, reading books, enjoying color, design, drawing, playing the harmonica, making a trip home for the last time to say goodbye.
8. Laughing when all is going wrong, from a backward diaper to a wig that goes askew. Watching TV reruns, videos, DVDs of cartoons or the great comics.
9. Plugging into your family's divine source to ease the mind as the soul makes its difficult journey.
10. Looking for the joy in every day, no matter how insignificant it may seem at the time from a beautiful bird's feather, to a wind chime that is particularly sweet, to a thoughtful message from a friend.

When each member of our family passed, I felt a full heart with no regrets. I know there are so many caring for adult children who have been with them from birth, or who have experienced a severe accident. Others have their loved ones with them, but have lost them through brain injury, Alzheimer's disease or other dementia. It is very hard, but the rewards of caring for a loved one are great. Just try to look for the joy.

Suzanne Wiley is a former ADS Advisory Council Member, and has been a family caregiver many times over.