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The Pain of Caregiving


July 1 is the first anniversary of Frank’s death.  He was the father of my wife Carol, her brother Jim, and their sister Judi.  They lost their mother Audrey in September 2009.  Frank was in assisted living here in Denver for the last two years of a long life.  He died at 91.  Audrey was in a nursing home in Judi’s home town of Boise when she died at age 89.  They were the last of their generation.

Carol, Judi, and I witnessed the difficult last years of their lives.  Both had dementia to some degree.  Audrey was confined to a wheelchair due to severe osteoporosis, and Frank took slow, deliberate six inch steps with a walker.  Each had other illnesses and a great deal of pain.

Audrey’s spine was deformed, and the act of her moving from the bed to a wheelchair was hard to watch.  Every outing required lots of planning and a couple of strong backs as she was not capable of helping any transfer from her chair to the car and back.  When we discovered the help the bus line had for the disabled, life got a bit less painful for Audrey and our backs.

Frank fell one day when he still lived in Florida and it took months for the bruises to fade and the pain to subside.  Some time prior to the fall, he tried to open his garage door to go to town after a two day power outage following a hurricane.  He forgot to release the garage door opener and tried to move the door and the entire opener assembly.  It took months for his back to feel better.  In Denver, he fell in the shower and hit his back on the shower bench right over a kidney.  He never really recovered from the fall.  He was so fearful of falling again that he slowly and carefully measured each movement to the point of near paralysis.

Both Frank and Audrey had lived active lives into their early eighties with some memory problems that slowly worsened along with their physical health.  They went from independent adults to elders requiring caregivers.  They never complained, fairly typical for a generation that lived through the depression and a world war.  We saw their pain, but they didn’t talk about it.

Watching their decline into frailty, dementia, and dependence was an introduction to the pain of aging and the pain of caregiving for the three of us and other family members.  Visits could be fun, but they were always difficult as we watched our beloved elders slowly dying.  We felt the pain of helplessness, fatigue, overwork, and frustration as we tried to help.  It hurts to be with someone who is sick, confused, and hurting.

They are gone, we still hurt and grieve, but now the pain is all our own.  Judi had gall bladder surgery with some complications.  Carol just got a cortisone shot for bursitis in her hip that has been plaguing her for three years.  I just realized that I have severe arthritis in my hand that needs treatment.  We are next!  In fact, next is now!  We hurt.  We have been hurting for some time, but we didn’t have time to stop and deal with the physical pain.  We were too busy with the elder’s pain and our emotional pain.  Now we need some caregiving to help us with our own aging processes.

Life goes on.  We go from one stage to another without realizing it until one day we say, “Something is different!”  Yes, it’s different, and our lives are richer, if a bit more painful, from what we have experienced.  I haven’t touched on the good times here, but they were there.  We were all able to experience closeness and joy, even in the face of death.  “Life wants to live.”  A  line from a Belgian art film.  We live.

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