CareGIFTING: The gift of caring for a loved one

By Cheryl Deep, Wayne State University Institute of Gerontology

   A full-size Christmas tree adorns the spacious living room of Pat Rencher’s large Detroit home.  Christmas 2005 has just passed, but this tree has been up for more than a year. 
Its presence reminds the family of an important absence:  Pat’s mother Dariel, 77, has been in a nursing home for the last three years.
    “Mom loves the holidays,” Pat says.  “She decorates everything, a tree in the front hall, one in the living room.  She makes everything beautiful.” 
    Pat, who recently left her position as vice president of programs for the Detroit Urban League, is the older of two daughters.  Her life changed dramatically in March of 2004 when her mom, a diabetic, was hospitalized with severe pain and swelling in her left leg. 
“Some of it is a blur,” Pat recalls.  “Phone calls, fear, emergency procedures, life support.  I had just switched jobs and was trying to prove myself at work.  I’m not sure how I got through each day, but I did.”
   Dariel’s circulation was poor and required a bypass leg graft to correct it.   She suffered a small stroke, also a result of poor circulation, and minor paralysis.  The graft became infected and failed.  Dariel’s leg darkened from the lack of oxygen.  Doctors tried hard to save it but soon it became a question of saving her life or saving her leg.
   In May 2004 the leg was amputated at mid-thigh.  “This was hard on all of us,” Pat says.  “My father is normally a quiet man but we all tried hard to get mom to understand what was going to happen to her.  I told her, ‘Mom, they have to cut your leg off.’  She said they should do what they have to do, but now doesn’t remember giving us permission.”

Family faces crisis together

   Pat’s sister Joy visited as often as her job and budget allowed from her home in California.  “We tried as best we could to make these decisions as a family,” Pat says, “and to support the decisions we made.  Those months when mom was critically ill, surviving day to day, were the toughest.”
   Dariel, a full-time resident of Detroit’s Boulevard Temple Nursing Home, recalls nothing from the two most severe months of her illness.  She is alert and attentive now, her light brown hair cut short and spunky, her spirits high.  She glances at her left thigh. 
   “It is what it is,” she says.  “Get over it and do something is what I say.  You’re not going to grow another leg.” 
The family has been fortunate in not having a history of chronic medical problems to cope with.  Dariel’s father lived into his 70s, requiring hospital care for only his final months.  Her mother lived till 100, dying in the bedroom of Dariel’s home, where she moved when her husband became ill. 
   Odis, Dariel’s 88-year-old husband, is a self-employed pharmacist who retired in 1994.  They have been married 55 years.  For the past two years, Dariel’s health has been stable and Odis has visited her every afternoon to share a homemade dinner at 5:00 p.m.  He washes and irons her clothes, never complaining.   Odis is in good health, a trim, well-dressed man of few words but deep emotions.  When asked about caregiving, he looks puzzled.  “Caregiving?  I didn’t think about it being caregiving.  I did what I thought I should do.  It came naturally.  If it was necessary for Dariel’s well-being, I did it.  That’s all. 
   “The worst time was when I thought I would lose her.”
    Odis credits faith and devotion with the entire family’s ability to get through this difficult time.  “We have always been devoted to each other as a family, so we turned that devotion toward Dariel when she was sick.  It’s what we do.”
   “Dad is a rock,” says Joy, Odis’ younger daughter.

'You don't know what you've got 'till it's gone'

  Joy became an expert in long-distance caregiving, providing support and encouragement from her home in California, flying in as necessary, and worrying in between.
   “I felt helpless,” says Joy.  “It was the first time in my life I questioned moving away from home.  I realized the supreme importance of family.  You don’t know what you’ve got till it’s gone.” 
   Joy struggled to find ways to help from afar.  She decided to handle the finances, managing funds to insure monies were available for whatever level of care her mother required.  “Costs can be enormous,” says Joy.  “We had always been so healthy.  No one considered the possibility of a chronic illness or the need for a nursing home.”
   Phone calls, e-mails and photos kept Joy involved in her mother’s recovery, but she still feels guilt that she can’t share daily responsibilities.   Changing diapers, helping at mealtimes, conferring with nurses and doctors – Joy’s involvement in these when she visits helps her to empathize with the duties Pat and Odis must perform every day. 
   “I no longer come in for a visit with a big “H” on my cape, like I’m Captain Health here to save my mother from illness with nutritious food and exercise.  It’s not that simple.  It’s small steps not miracle cures.”  Joy also tries to be sensitive to the changes her mother must endure.  An independent, self-sufficient woman, it can be difficult for Dariel to ask for help and embarrassing when her daughters must wash and dress her.
   Pat, Odis and Joy agree that the art of quality caregiving for Dariel spurred spiritual growth, strength of character, gratitude and family cohesiveness.  The crisis brought Pat closer to her mother. Both Pat and Joy wish they had prepared themselves better for the possibility of one of their parents needing institutionalized care. 
   “Healthy or not, as we age anyone could have a stroke or a bad fall,” Joy says.  “Everyone with older parents should give serious thought to a course of action.”
   Pat agrees that pre-planning would have made it less stressful to deal with her mom’s health crises – a lesson learned. “This is the normal progression of life but I just didn’t get it.  We deny, deny, deny until we can’t deny any longer.” But the Rencher’s don’t dwell on should haves, preferring to emphasize the gifts caregiving offers.  “This situation forced me to face the fact that I’m not going to be around forever,” Pat says.  “How precious life is.”
   Joy is also philosophical, admitting there is no real way to prepare for the vicissitudes of aging, mentally or emotionally.  “We pray about it and at the end of the day we leave it in God’s hands.
    I like that verse from the Bible:  Once an adult, twice a child.  It’s important for all of us to remember that.”