The Anguish of a Caregiver's Life

I've been a caregiver for as long as I can remember. Even as a little girl, maybe at age five or six, I was wetting face cloths and wringing them out to put them on my mother's head to ease what must have been severe migraines. I don't know exactly what her medical situation was, but she often walked out of the house, fainted, and had to go to a hospital. Since my father was a circuit rabbi and had to travel to different Jewish communities in Wisconsin to make a living, I was often placed in a Jewish orphanage and stayed there until my father returned.

When I was nine and my brother was born, she seemed to get better, but when I was a teenager, she often wound up in the hospital again. I took care of the house, and of her, whenever possible. When I received my driver's license in my twenties, I took her to her doctors' appointments, as neither she nor my father drove.

Then it was my father's turn to get sick. I became his driver as well. He was an easy patient, quiet and not demanding, so it really wasn't a problem to help him when I could. When he became very sick with a bad heart, I left a job as a Sunday School principal and art teacher in Los Angeles to return home and be closer to him. I had married just months before he wound up in his final days in the hospital. I was pregnant when he was fighting for his life. He died only a few months before my son, Michael, whose name he bears, was born.

Unfortunately, my days of taking care of sick people were far from over. Michael was diagnosed with severe asthma when he was two, and we made many visits to an emergency room. Once, when he was around nine and supposed to go to a birthday party, he couldn't stop coughing and had trouble breathing. I spent several nights sitting in a chair next to him in a ward at Children's Hospital. His asthma continued through his teen years, and after.

Then, to add to my caregiver duties, my mother had a debilitating stroke when Michael was seven. I had to leave him with a neighbor and rush to my mother's house and the hospital where she was taken; I stayed there for 48 hours straight until my brother could fly in.

After that, it was a juggling act between taking care of my stroke victim mother — who had aphasia, and couldn't speak or be understood well, and whose right arm and right leg were paralyzed — and Michael with his frequent acute attacks of asthma. Though I had a cousin who said, “Put her in a nursing home,” I refused to have her live anywhere but in her own house. So I would stay with her while Michael was in school, and then go home to take care of Michael. It helped that we lived only four blocks away.

I also had a part-time job as an editor of a neighborhood paper. One time, while laying out the paper for printing, I had to rush to the hospital when my mother wound up in the emergency room. Another time, I was in the emergency room with Michael and found out that my mother had just been taken to the emergency room at another hospital. It was a nightmare!

My mother wore an emergency call button which rang in my house. Often, I would leave whatever I was doing when it rang and would run over, often in my nightgown. Most of the time, it was a false alarm.

I finally had to find someone to stay overnight with her. Since we couldn't afford much to pay someone, I often didn't get the best people. One young woman would sneak out at five in the morning when she was supposed to stay until eight. She didn't realize that, although my mother had difficulty talking, she was able to let me know about the early departures. Another woman would eat the food that I made for my mother, and when my mother fell into a window, the woman never let me know about it.

Finally, in the last year of my mother's life — she died four-and-a-half years after her first stroke, and she had several more — we found Marie, a wonderful woman from the neighborhood who was very kind and cared about my mother. But this woman could come only for a few hours during the day, and we had problems with overnight care.

Many times, I would sit down to a Sabbath meal with my family and Marie's husband would come to my house and tell me that the overnight person hadn't shown up. I had to leave before eating so my mother wouldn't be alone. My mother also often slept at my house for the Sabbath, and Michael gave her his bed and slept on the floor.

When Michael was young, we could never go on a trip unless my brother could come stay with my mother. One time, Michael, his father, and I went to the Wisconsin Dells and had a great two days of fun planned. At eleven that night, Marie called and said the overnight person didn't show up, so to Michael's disappointment we had to return home immediately the next day.

There were many incidents like this, of plans disrupted, but my mother's care came first. Both my husband Paul and Michael were both very understanding.

Unfortunately, I was unable to save my mother's life and she died while still in her seventies. She had been a vibrant woman and a fighter, but she ultimately lost the health battle.

I still had the battles with Michael's asthma, but as he got older the symptoms were not as severe and he learned to handle many of them himself. Even in high school when he was living in the dormitory of an all-boys school near the house, however, he called us at two in the morning and we rushed to the school to take him to the emergency room.

Then he left for college, and then for an Israeli seminary, and then for law school, and it seemed my days as a caregiver were over. Unfortunately, I was wrong. My most arduous tasks were ahead of me.

My husband Paul was diagnosed as a diabetic in his thirties. At first he was on pills, then insulin. The diabetes was so severe that he lost part of his right leg and then his left foot. He was in and out of hospitals. We were on vacation when his eyesight was stricken, and he had trouble seeing. We rushed back; I drove him to many eye care appointments. The diabetes seemed to attack almost every part of his body, except his mind, which was as good as ever.

Today, as in the years that I was my mother's caregiver, I have to plan trips around his health. Parties we are invited to have to be shelved if the weather is inclement or if he can't physically go. I've had to haul his wheelchair into the van many times when he was unable to walk for whatever reason.

While we used to go for two-mile walks, he found it harder to walk any distance, and at night his pupils didn't adjust to light and dark like normal pupils, so nights were especially difficult for him, both for walking and driving. He had to retire early, and then started to get his healthcare at the wonderful Veteran's Hospital in Milwaukee.

Then his kidneys were affected. We went several times to the VA in Iowa City to see if he could be placed on their kidney recipient list. He was accepted there and at the New York VA, but had a setback when he suffered a long-term infection. So I was back, as I had been with my mother, father, and son, visiting different hospitals, trying to interface with his hospital caregivers, now taking him daily to and from dialysis, shopping for what he needed, and praying that he would get his kidney and that at least he will become stable in his health.

The stress of worrying about him is constant. This time, for as long as we are married, I will still be a caregiver. I am healthy now, and hopefully will continue to be, as I can't be a capable caregiver unless I am healthy.