Twenty years ago my 52-year-old sister suffered a massive stroke. This incident set in motion a number of debilitating afflictions, trials and tribulations for her.
She would prove stronger than her diseases and larger than life in her death.
Priscilla awoke dizzy during the night one day in late March, 1993. She felt nauseous and found herself unstable and wobbly while trying to reach her bathroom. The left side of her face was drooping and she had little feeling on the same side of her body.
She called our dad that morning and told him what was wrong. She had no idea she'd had a stroke. Neither did Dad. He took her to the local emergency room and was told she most likely had Bells Palsy, a disorder in which nerves that are damaged in the face can cause paralysis in the muscles.
The doctor suggested she see a chiropractor. Dad then drove her to his chiropractor, someone he completely trusted and had been seeing for years.
After one adjustment, Priscilla's symptoms not only did not improve, but she no longer could swallow – at all.
The swallowing reflex is something we take for granted 24/7 and to not have that ability is something that is difficult to describe or imagine.
She went back to the hospital and was told she would feel better soon. Dad took her to his doctor, who told her the same. Feeling he'd done everything he could, my Dad, who was the best minister in the world and the best Dad – simply wasn't good at this sort of thing. He took Priscilla home and simply accepted what the doctor had told her.
Days crept by and Priscilla didn't improve. The inability to swallow meant she couldn't eat or drink anything and saliva was collecting in her mouth causing her to drool and have to spit constantly.
During all of this, we were amazed at the doctor's offices and hospital. Usually, full information is taken in an emergency room on a patient ... "do you smoke? do you drink? do you have high blood pressure? do you have diabetes? what is the family history?"
Priscilla was a heavy smoker. She'd left a job of 27 years in 1992 and moved from New Jersey to Missouri to look after our Dad. She bought the property next door to him, settled into her first house with great glee and proceeded to look for a job.
A savvy businesswoman who had worked as a trust officer and then vice president of J.P. Morgan Chase for most of her career, she had, at one time handled Campbell Soup's investments.
Unfortunately for my sister, you can't do the same job in Missouri as in New Jersey unless you are an attorney. So her job search yielded her nothing but, "We're sorry, but you're over-qualified."
She would have taken any job by March of 1993, but the stroke interceded, and was most likely caused by the amount of stress she had endured at her job all those years, the move and the unsuccessful search for work, not to mention 35 years of smoking.
After a week of no food, no water and no swallowing, my Dad knew something was drastically wrong and took her into St. Luke's hospital in Kansas City.
Pris was diagnosed with a massive stroke and kept in the hospital for over a month. Unfortunately, with a week in between the stroke and hospitalization, there was nothing anyone could do except rehabilitate my sister.
She was off the cigarettes for sure – cold turkey. She had to have a peg tube inserted into her stomach to be fed until she was able to swallow again – that took almost a year before she was off of it. She had triple vision in both eyes, so was unable to drive until that cleared up – nearly a year. The doctors discovered that her triglyceride levels were off the charts, as was her blood sugar – yes she had diabetes too.
Nothing would ever be normal for her again.
The father she'd moved to Missouri to take care of in his last years was now the one taking care of her, driving her to appointments and helping her to get around.
Sadly for my husband and I and our brother, we never knew about all of this until she was out of the hospital – none of us lived near Missouri at the time either. No one asked us for help, which we all would have gladly given.
I made it out here during the summer of 1993 and was shocked to see my sister in the condition she was in and furious that she had been misdiagnosed.
She was loathe to complain about the local hospital's diagnoses and refused to discuss it.
She pulled me aside to complain about our dad's driving habits and he pulled me aside to complain that she was a back seat driver. Between the two of them, they had about one-half of a good eye to use for driving. It's only by God's good grace that they never had a car accident.
She also pulled me aside to complain about dad's lack of a bedside manner. He pulled me aside to say he'd been having nightmares flashing back to when our mother was sick in 1982. We live about 50+ miles from the hospital in Kansas City, so Dad had been required to drive to and from the hospital daily to see our Mom and do the same with Priscilla in 1993.
He was terrified she was going to die. "I'm scared Prissy is going to die Elizabeth," he said. "I'm not supposed to bury my child before I die," he added.
What do you say to that?
And she thought he didn't care. Bad bedside manner or not, Dad was terrified. He wasn't cut out for being a caregiver, especially not for his firstborn daughter. He turned 80 in 1994 and his health had begun to trouble him by then too.
The years passed and Pris improved some, but not much. She finally gained single vision and began driving again. She was now completely unable to work, so social security took over and with that she was able to stop obsessing over finding a job. Eventually the ability to swallow came back and she was able to get rid of the peg tube and eat again, though she never regained the ability to eat what she really wanted. She could barely open her mouth and the simplest of certain foods would get stuck in her throat and she couldn't swallow them.
One of the greatest joys in life is enjoying food. That was now gone from her life. The state of her diabetes and triglycerides demanded that she eat a strict diabetic, low fat diet.
Eventually, my sister controlled the food she ate instead of it controlling her. She got rid of the cravings most of us have for chocolate, sugar and salt because she stopped eating all that. But she admitted her diet was so boring, she didn't care whether she ate or not, and eventually that showed by her drastic weight loss.
Indeed, my sister was depressed.
And cranky. We all learned to tip toe around her.
Meanwhile, our father's health began to decline. His kidneys were giving him trouble as did his heart. In September of 1999 he went into St. Luke's for a quintuple bypass, but had to have stents put in his kidneys first, then the bypass.
He wasn't out of the hospital three months before he fell and broke a hip getting out of bed in the middle of the night, requiring surgery and time in rehabilitation.
God bless him, Dad never let anything get him down. As soon as his hip was better he was back at the chiropractor's and walking about one-half to a mile a day. His faith in God was his compass and he never lost his sense of humor.
In 2000 our Dad was 86 and Pris was 58. She looked older than Dad did and was frequently mistaken for our son's grandmother. She would stomp her foot and say, "I am NOT his grandmother!" Then she'd throw her head back and say, "I'm his AUNT, her sister," pointing to me. And I, quite chagrined would say, "she's my older sister."
No wonder she got cranky with me.
She still had some weight on her bones, however, and was taking care of her house and Dad's – mowing the lawns up until 2000 when we moved out here and my husband took over.
Dad's frequent health issues required her to either sleep at his house or be there very early in the morning, thus interrupting her sleep. Doctor's appointments in the city were often day-long trips and she was plagued with a minor, very terrifying car accident the winter of 2000 while driving home from visiting Dad in the hospital. It was actually a blizzard, the same one that killed a Kansas City Chief ballplayer.
She was exhausted from being a caregiver and being sick herself.
In May of 2001, Dad was told he was in renal failure and he had about three- to six-months to live unless he wanted dialysis. He was 87 and chose not to have the dialysis.
Instead, Dad spent the summer and fall enjoying life. He sat on his porch and read, listened to the birds singing, and enjoying his grandson's visits. He got us to drive him to his favorite spots – where he grew up in Eldon, all the graveyards containing relatives, and he visited a number of relatives who were still alive. Our brother came out in November for a "last" visit with Dad. We laughed, we cried, we enjoyed our memories.
Unfortunately, we wouldn't have a last Christmas at home with him, as he developed pneumonia in December and spent the holiday in the hospital. He did manage to maintain his sense of humor and told the admitting nurse that he practiced safe sex when she asked him if he was pregnant or lactating before taking an Xray.
He received Christmas communion while in the hospital and all his family and former parishioners visited him. There were lots of presents and he swore it was the best Christmas ever even though he wasn't at home.
A few days later he ended up in the ICU with C Diff virus - a contagious virus often gotten through contamination with feces. Yes, he got that virus FROM the same hospital that misdiagnosed Priscilla's stroke nine years earlier. That bit of news was confirmed by a tip from a hospital worker. The hospital never told us he had it until three days into his ICU confinement, which put us at serious risk for contracting it ourselves.
Finally, on Jan. 11, 2002, Dad was sent home to die – and hospice care ordered.
I was still working, so Priscilla had to hire full time caregivers to assist her, with just the two of us doing duty on the weekends.
She was exhausted and yet tireless. Dad was so hard on her.
The dying process is hard on those who are dying and those who are caregivers.
Tomorrow ... Dad proves you can die with dignity and a whole lot of humor.
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