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Generations of caring

It's been tough at times, but the Hylton family grew closer when Grandma and Grandpa moved in, and even gained a new "member."

PAULINE HYLTON
Published August 31, 2004

"It's going to be hard," Dad said as he looked at me like I'd just stayed out after curfew. "I know, Dad, but what's hard is good," I said confidently.

That was two summers ago, when I asked my parents to move in with me. My mom, 82, could barely use her hands because of severe arthritis, and my dad, 76, had diabetes that made walking difficult.

They wouldn't be moving in with just me. They would be moving in with me, my 11-year-old son, 14-year-old daughter and husband of 20 years.

At first, it seemed easy. They settled into our fourth bedroom and set up their tacky mauve recliners in our little-used living room. They prepared their own six-course breakfast. I continued with my exercise routine and homeschooling my children.

I made lunch and dinner for six most of the time, but twice a week my folks ate out, giving our family the night off. In the afternoon, we would lounge by the pool while my dad trudged across it 10 or 12 times; occasionally my mother joined him.

They even got involved in homeschooling. My mom instructed Micah in grammar and handwriting, and my dad tried to teach him math. I say tried, because he and his grandson rarely agreed on the correct answer or method by which a problem should be solved.

"Why didn't I do this sooner," I thought.

Natural adjustments

Although it seemed completely natural having my parents live with me, there were concessions each of us had to make. I had to absorb some of my parents' cherished treasures, or clutter as I call it. They had to adjust to teenagers, their friends and the noise that usually accompanies them.

One thing I could never get used to was my dad's late-night wanderings. When I was growing up, I remember that he would get out of bed, move to his chair (with a stop at the refrigerator) and then on to his well-worn recliner. He would read, do crosswords or watch television; then about 5 a.m., he would head back to bed.

This went on for years. It was no different at our house.

It didn't bother my husband because he could sleep through a earthquake, but each night my dad wandered, I lost sleep. One night, my husband and I awakened to what we thought was the house burning down.

"What is that smell?" my husband shrieked as we both sat up in bed. I peered through our bedroom door. To my disbelief, my father was toasting bread for a peanut butter and jelly sandwich and a hot dog. It was 1 a.m. This had to stop.

"Dad, I have something to tell you," I said.

He put down his newspaper and eyed me suspiciously.

"Last night, when you cooked your snack, it kept me awake all night. I wish you wouldn't do that."

His eyes softened. He leaned over and touched my hand. "I won't do that anymore."

Right after Christmas, that first year, his wanderings became synonymous with moaning. The moaning became more fervent during the night and continued into the day. Dad no longer wanted to teach Micah math. He didn't want to do anything.

He developed a sore on the big toe of his right foot that looked like a blood blister. It would not heal. I started bandaging his toe at night.

He and my mom started going to a podiatrist for a treatment that was supposed to improve circulation. They went faithfully for six weeks. The treatment did not help.

It was time to see a surgeon. He suggested a vein transplant from another area of my dad's body. The surgeon said the other option was amputation.

The decision was made.

The vein surgery failed after a week in the hospital, a week in rehabilitation and two tense weeks at home. It was time for the doctor to amputate my father's right leg below the knee.

My sister, Paulette would come to help, but she wouldn't arrive until after the surgery.

Before the surgery, my parents shared a tearful goodbye, which I avoided watching out of self-preservation. Six hours later the surgery was done, we went home relieved.

We didn't know it then, but that was the beginning of five months of rehabilitation for my father.

Turning point

After the surgery, Dad became agitated; his behavior irrational. Once he had me "sewing" the bed sheets with him. He became angry with me for dropping the pretend needle.

My mother, sister and I were beside ourselves with grief and apprehension, all the while trying to avoid staring at his missing limb.

We received calls during the middle of the night from Dad saying: "The nurses are messing with me." After several calls to the nurses' station, we asked them to place the phone out of his reach.

The doctor told my sister and I that sometimes elderly people are affected by the post-op medication in this way and that eventually, he would come out of it. We weren't convinced. The next day, it was my turn to wait with my father for the doctor. I dreaded it.

"Good morning, sweetheart," Dad said. "I've been having the most beautiful dream these last few days. I dreamt I was on the boat with Tom (my husband) and we were catching loads of grouper." Dad's tranquil face smiled contentedly as I blinked away tears.

Dad had come back to us. My sister went home. My mom and I pressed on as my father was transferred to Morton Plant Mease Rehabilitation center.

One evening when the family visited him, we were playing cards and noticed that he was unable to hold them in his right hand. His health was declining, could hardly sit in a wheelchair.

"I'm dying, and I want to go home," he cried. Mom and I cried, too.

We put him back in the hospital. He had three infections and a stroke. That was Monday. On Tuesday, he called to say the doctor was going to operate again. This time, his leg above the knee would be removed.

My other sister, Paula would come. She would arrive after the surgery.

Looking back, those five months seemed like a blur. Whenever Dad started to improve, he would have a setback. Often it would be a urinary tract infection; once, it was a heart attack.

My mom visited each day from 10 a.m. to 1 p.m. She would come home to eat lunch and take a nap; then she would go back before his dinner and stay until the game shows on TV started.

Usually, I arrived in the morning. I had developed a rapport with his doctors, therapists and aides. These people were my dad's family for five months. They worked hard to encourage him when it seemed he had given up.

I tried to encourage Dad by reading to him and writing his memoirs. I took him for rides in his wheelchair around the compound because I knew he needed to be outdoors. It worked. I started to see some of my dad's will to live return.

Throughout his hospital stay, the thought of bringing my dad home terrified me. Secretly, I was glad when the staff thought he should stay, but after one visit I knew it was time for him to come home. We were singing hymns.

Dad said, "I sing these every night before I go to sleep."

I left hurriedly. The thought of my dad, lying in bed, singing hymns with only the dim light of his hospital room to keep him company was more than I could bear. It was time for a change.

An anxious arrival

We set the date: Oct. 1, 2003. My sister Paulette would come down to help Dad move home. I had enormous anxiety about bringing Dad home.

How would I physically handle him? How would I care for his personal needs? Would I still have a life?

The day arrived. My sister, Mom and I went to gather Dad's belongings. A van transported him as we followed in my car.

After a quick lunch and small talk, Dad needed a nap. My sister and I had been practicing transferring him into bed. Apprehensively, we performed the task. The next day he fell because he tried to transfer by himself.

Paulette and I took turns caring for him, hovering over him like nervous hens. We were so unsure, even though the aides had taught us all they knew. We realized that if Dad was going to stay, we needed lots of extra help.

A few mornings later, an aide arrived from a private agency. She entered my parents' room, and after a short time, wheeled Dad out, cleaned with hair combed. She prepared his breakfast, cleaned the room and did the laundry. We could have kissed her.

Each morning a different aide would arrive and take care of Dad. All were women, competent and nice, but not what I had in mind. One morning, Charles Wingfield Jr. showed up, or St. Charles, as we call him.

After just four days, Charles adjusted quickly to my father's routine. He also seemed quite comfortable with our family's busy schedule. Charles had a second job, but after a few weeks with our family, he quit and began working with us full time.

My children think Charles was once a famous tennis player or singer because he is excellent at both. He even taught Micah to play tennis. When he can, he attends my kids' concerts and drama productions. During one play, as he watched Micah onstage, I saw an unabashed look of pride on his face, much like ours.

He brings us thrift-store drinking glasses because we break one a day and fresh-cut flowers from his garden. He jokes with my dad and spoils my mom.

Charles is a godsend. I prayed for someone who was strong, had a flexible schedule and felt like one of the family. The Lord blessed me with all of those things, and threw in tennis.

Love and marriage

I marvel at the circumstances that have allowed our family of seven to live together in relative harmony.

I'm thankful for my two sisters who are supportive of what I do. At times we have disagreed about medication or treatment of our parents, but we have worked it out, because we love each other and want the best for them.

I am grateful for my husband, who shares the same values as I do. A man who takes the Fifth Commandment seriously enough to honor my parents by allowing them to live with us and by helping to care for them.

Recently, I asked my children if they were still happy with our living arrangements. My son said he liked things the way they are, but he wished he had his bathroom back. When asked to choose between the two, he chose his grandparents.

My daughter, Sarah said, "I love Grandma and Grandpa living with us. I just don't like what it does to you, sometimes."

She's right. Sometimes, when I'm stressed over a problem with my parents, I take it out on others, or have difficulty functioning. Sometimes I feel as if I'm the person at the circus that has all those plates spinning on the stick. One plate starts to wobble and as soon as I fix that one, another plate begins to wobble. Occasionally, a plate breaks, someone cleans it up, and we start again.

It's been hard on all of us. But it's good. It's good for my children. They see how difficult it is getting old, so it won't take them by surprise. They get to help and serve their grandparents because it's the right thing to do. They also have other people living in their house who are interested in absolutely everything that they do and who encourage them in all areas. It's a lot better than having their own bathroom.

I admire the way my parents are facing old age. I see how they handle extreme pain, loss of independence and loss of physical ability with graciousness and dignity. I watch as their faith sustains them in these last years of their life. The experience has left an indelible mark on my heart.

When I asked my parents to move in with my family, it was like getting married. I remember standing in front of about 150 people, promising to love, honor and cherish my husband till death do us part. I had no idea what that meant at the time; if I had, I might have run.

It's the same with caregiving. There is so much that goes into it, things that you cannot imagine. Sometimes I've wanted to run away. A handful of times I have thought of having my parents run away, but at the time I could not find a facility where they could live in the same room. And after more than 50 years together, it didn't seem right that they should live apart.

Many people wonder why my husband and I are committed to taking care of our parents, it's because Jesus said: He didn't come to be served, but to serve - and we want to follow that example. Besides, we're family.

I'm glad I didn't run away from caregiving or marriage even though it is hard. For all I know it will get harder, but it's good.

- Pauline Hylton and her family live in Clearwater.

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