September 16, 2010
Finding bloody rags in her mother's trash finally tipped the balance.
For six months, Deborah Lewis had been noticing that something about her mother Joyce, 72, wasn't right. But whatever the problem, Joyce wasn't talking.
There was the weight loss, which Deborah didn't think much of at the time since her mother had always been rail thin. There were also behavior changes. For example, Joyce had always been a tidy housekeeper. "But now the house was a mess with stuff piled everywhere," says Deborah.
But those bloody rags set off all kinds of alarms. Twenty-five years earlier, Joyce had had a mastectomy following a diagnosis of breast cancer. Deborah feared the worst—a recurrence. Her mother refused to discuss it. She had put the breast cancer out of her mind, as if denying it would make the problem disappear. "What bloody rags?" Joyce said when Deborah confronted her about what was right in front of her eyes. "You're crazy!"
Deborah let the subject drop. One of the most difficult phases in caregiving occurs right before the grown child takes on responsibility for a parent's health. This is your parent, after all, the person who nurtured you, the original authority figure in your life. Who are you to question what he or she is telling you?
Of course, once a certain line is crossed—once the nurturer becomes the nurtured—a caregiver wouldn't ignore a bold-faced lie concerning a vital health matter. But Deborah hadn't reached that point yet. She was still in the awkward phase when her mother's quirks, denials, and assorted neuroses, were, well, her mother's business. And almost impossible to challenge.
Only a few weeks after noticing the blood, Deborah got a call from her mom. "She was in so much pain, she could barely walk," says Deborah. "When I picked her up to carry her to the car, I could feel the lumps in her back. I knew then for sure that the cancer was back and it had spread."
Deborah tried to tell the doctor her concerns about a recurrence of her mother's cancer. Her mother insisted it was nothing but a kidney infection. "She cussed me out like a sailor," says Deborah.
Deborah fled the examination room. A few minutes later, the nurse came out and told her what they'd found. There was a gaping hole in her chest eight inches wide and five inches deep. "You could see her breast bone," says Deborah.
It was shocking and horrible. But it could no longer be ignored. A battery of tests confirmed the obvious: The cancer was back, and had been for some time, and it had spread. The doctors told Deborah her mother had six months to live. With aggressive treatment, she might have nine months.
Deborah's mother bravely decided not to undergo further treatment, which meant she qualified for hospice care immediately. Hospice, which includes treatment for pain, skilled nursing and counseling, is offered when a patient has six months or less to live.
Not only do patients on hospice experience a better quality of life, many actually live longer than those who fight a terminal illness aggressively. That's because the life-prolonging treatments are so terribly debilitating.
Joyce may have been in denial about her illness before. But now, she decided to face facts. She moved in with Deborah, and let her daughter be her caregiver. Deborah took on the role with confidence that she didn't know she possessed. She would spend nearly every waking hour by her mother's side, regularly changing the dressing on her once-unmentionable wound. The experience was profound: "For the first time in my life, I got to know who my mother was," says Deborah. "I value that very much."
All mothers and daughters have their issues, their unresolved conflicts. But the tensions between Deborah and her mother went deeper than most. Deborah's father had abused Deborah and her sister sexually and physically when they were young. Her mother had been unable to stand up to him. Deborah had harbored a deep resentment all these years.
But now, she began to understand and forgive. "She was a good person," says Deborah. "She had things in her life that made her the way she was. I now realized she had been deeply depressed her entire life. When I was young, it wasn't that she didn't want to help. She was incapable of it."
Deborah's mother died six months to the day from the emergency room visit.
"I'm thankful for that six months. Caring for her was the hardest thing I ever did, but I'm glad I did it. I feel like my mother and I became friends for the first time."
Steve Slon blogs regularly about aging and caregiving for BeClose.com. He is the former editor of AARP The Magazine. See his blog at http://beclose.com/slon or write to him about your caregiving story at firstname.lastname@example.org.