In 2002, area resident Pauline Hylton realized that her parents could no longer care for themselves. Her father, Ramon Wert, was 76 and suffering from diabetes; her mother, Pauline, 82, had severe arthritis. Hylton had them move in with her and her husband, their son, then 11, and their daughter, then 14.
Each year, hundreds of thousands of other Americans reach the same conclusion and, like Hylton, become caregivers. In August 2004, the Times published Hylton's story of the events after her parents moved in.
This is her story of what happened next.
"The young grow strong, the strong grow old, and the old must die," concluded my eighth-grade paper. I was impressed with my work, but my English teacher was not. She marked my paper with red ink and returned it with a disapproving frown. • I've often thought of that paper over the past five years. You see, I've had first the privilege and then the heartache of watching my dad when he was strong, then watching him grow old, and a few months ago, watching him die. • I thought back to a time when my dad was strong. • He and my mom were Salvation Army officers in Decatur, Ill. I was 17 and had just run into another car during an ice storm. • My dad asked only if I was hurt and then sat quietly in the back seat of the squad car, clad in full Salvation Army uniform, as the policeman questioned me. My dad made me feel safe. • Or when he'd take me snake hunting while we were stationed in Topeka, Kan. Dad was an amateur herpetologist who enjoyed giving "snake talks'' for his Scout troop and local schools. • Once, when it was just the two of us hunting copperheads and rattlers in a quiet cornfield, he asked me if I thought I could take care of him if he was bitten. • "Yes," my 10-year-old self responded confidently. When I was with my father, I could do anything. • When he was strong seems so long ago.
A bit like 'Little House'
But a few years ago my parents started needing help with everyday chores; they were getting old. Mom couldn't cook, and Dad was having trouble walking.
In keeping with the Fifth Commandment, to honor your father and mother, the Hylton family of four asked the Wert family of two to move into our home.
It was great, in the beginning. Kind of like Little House on the Prairie, except with electricity.
At first, Dad seemed strong. He beat us at cards and kept impeccable personal and financial records.
Then he noticed a sore on his toe. It was especially troubling because dad was an insulin-dependent diabetic. The sore didn't go away. I started dressing it with medicine the doctor had prescribed.
Dad critiqued my lack of medical know-how, but I knew he was grateful.
Next, my parents went every day to a clinic that tried to jump-start the circulation in his leg. That didn't work.
The doctor then suggested vein replacement surgery. My dad had this done, but the replacement lasted a month before it collapsed.
My mom, dad and I sat through another visit to the doctor. Together, we made the choice to have part of my dad's leg removed.
That felt surreal.
After the amputation, dad remained in rehab for five months. It was agonizing. He was depressed, and he also was plagued with one infection after another.
He suffered a heart attack, and he tore his rotator cuff, the muscle and tendons that help stabilize the shoulder. We decided to bring him back into our home.
He became . . . old
God sent Charles as my dad's professional caregiver. Charles served and ministered to our family through the second leg amputation my father underwent. This one was preceded with a sore exactly like the first.
After Dad came home from the second amputation, he was never the same. Once an avid reader, he put his books down. Once gregarious, he withdrew.
Once strong, he became . . . old.
Dad couldn't do anything but feed himself the last two years, so while Charles handled 95 percent of the care, I handled each afternoon and a few nights a week.
Throughout his illness, I'd take dad around the block, in his wheelchair. My dad had loved the outdoors, and he had been an avid bird-watcher.
Although I was quite busy, I loved these "walks.'' It wasn't quite a cornfield in Kansas, but I was with my daddy, it was quiet and we were alone.
One day, while I pushed him in his wheelchair, I asked him about the favorite part of his day.
"This walk," he replied weakly. I wept softly while light shimmered through green leaves. Twigs and leaves crunched under the metal wheels that had become his legs.
Funny, when I first started caring for Dad, I dreaded the physical aspect. Little did I know that the really hard part had nothing to do with that. What was really difficult was the role reversal, the constant decision-making, the immense stress on my entire family.
It became too hard
Dad started moaning almost constantly, which grated on my family. We tried over-the-counter medications. Nothing seemed to help. My mom became upset as my dad wanted to do less and less.
Charles thought that the best thing for my dad was to have 24-hour supervision and pain administration. He waited for us to line up hospice in a nursing home. And then Charles, who had wearied after almost four years with us, quit.
The plan was to put my dad in a nursing home for a short time while I arranged the care for him.
Charles' last night was Sunday, and Monday or Tuesday, hospice would transfer dad to the nursing home. I was confident I could handle a day or two alone.
However, the stay, or respite as hospice called it, had to be delayed.
After I'd been the sole caregiver for my dad, 81, and mom, 87, for a few short days, I arranged for other care through an agency. One sweet girl worked mornings and afternoons Monday through Friday; different women came in the evening.
Nonetheless, over the next two weeks or so, I came to feel exhausted, physically and mentally.
One afternoon, in between shifts of caregivers, I ran an errand. Sarah, my daughter, phoned and said:
"Mom, you've got to come home now! Grandpa is insisting that he wants 40 pieces of fried chicken for dinner. He keeps yelling and moaning. You've got to handle this!"
But I'd had about all the ''handling'' I could handle.
I arrived home to find Dad demanding chicken. He seemed disoriented and somewhat desperate. That was it. I couldn't do it anymore.
"Mom," I said as I eyed my mother calmly, "you're buying 40 pieces of fried chicken for dinner."
But it was my husband, Tom, who went to the store. "I bought 16 pieces at Publix. I can always go back," he said with a dry smile.
I shut myself up in my room and contacted hospice. "My dad has to go somewhere tonight! I don't care where! Please send him to the hospital!'' I sobbed.
"Caregiver breakdown,'' the hospice workers call this stage.
One of us had to go, my dad or me, and dad couldn't cook.
After I calmed down, I knew I could make it through the night. The hospice workers would arrange for respite — sort of time off for caregivers — the following day.
After a good night's sleep, I knew that my family and I needed more than a respite.
So that day, a friend and I visited a nursing home 1 mile from me. It was clean, the staff was pleasant and one elderly man told us that his wife had been there for nine years, but had recently died. He still volunteered to work there.
That's where Dad had to be, I decided, and planned to tell him so on our walk the next morning.
"Dad," I said, choking on the words, "remember when you told me to tell you when it was too hard for me?
"Well, it is now. I've made arrangements to place you in a nursing home a mile up the street."
I was glad he couldn't see the tears flow while I pushed his wheelchair.
There was a long pause, then he said, "Okay."
After another pause he asked, "How much?"
Like a diary
Last Oct. 8, I moved him. I remember the date because that was the hardest day of my 48 years.
At the end of October, I moved my mom, who has congestive heart failure, into a facility near him. She didn't want to go, and she is still adjusting to it.
Dad continued to decline. One day I pushed him in his wheelchair around the pond at the nursing home. Magically, several species of birds greeted us. I pointed out a wood stork. Dad, slumped way over in his wheelchair, recognized it and repeated the name. That was the last time I heard him speak.
A short time later, hospice called to tell me the end was near. The nurse, Barbara, went with me to tell my mom.
Afterward, I sat with dad occasionally in his room, while he seemed to sleep peacefully. But his temperature would soar and plummet. His blood sugar did the same.
The afternoon before he died, I took a friend with me to visit Dad. I played my cornet for him. I sang.
My friend held his hand and told me that she saw his mouth move as if he were singing with me.
I talked to him and read out of his Salvation Army song book. He'd written comments in it about various songs, and it was almost like reading a diary.
The song book told of a time when my dad was the strong, passionate, unique man that I'd known as a girl.
That night, a nurse called me at home to tell me to come and to bring my mom. The nurses brought in an extra bed for us, so we could sleep in Dad's room. From this bed, I could see his chest rise and fall.
Early in the morning, I noticed that his chest was barely moving. I slipped out of bed, swabbed his lips and sat by his side. By the time I had called my mom over, he took his last, peaceful breath.
What had been rhetoric for me in the eighth grade became reality 35 years later.
Pauline Hylton lives in Largo. Readers may send e-mail to firstname.lastname@example.org.