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A Family's Journey of Caregiving

By  Sr. Marie Clark 

 

A Caregiver Speaks Up

On Thursday, June 20, 1974 at noon, my mother suffered a severe stroke quite suddenly while working at Wanamakerís Department Store in Philadelphia. My mother had never been sick before, so this was a shock to my father and two brothers. She was only 71 and quite active and well until that day. It was a blessing that I was at home with my father at the time that the Department Store nurse called the house and informed us that my mother was taken to Jefferson Hospital in Philadelphia.

Later that afternoon, my father asked the Doctors at Jefferson if my mother could be moved to the Memorial Hospital as a convenience for the family and friends. I was then able to stay at our family home with my father. On Saturday, my two brothers came from Long Island and Maryland with their families for the weekend. They all left on Sunday after having visited ICU, watching my Mother who was in a coma. Unfortunately, the following Monday morning, before I went to the hospital to visit my mother, I found my father dead in bed. He had a massive heart attack two hours before I found him. I am sure that it was the shock of my motherís condition that brought this on.

These were very tragic and trying times for my two brothers and me.

Neither my mother or father had ever been sick before, so we were all devastated. My motherís stroke was pronounced to be severe. She was unable to speak, and both her right arm and right leg were paralyzed. She remained in the Roxborough Hospital until September of 1974 and then she was transferred to Einstein Medical Center for continued therapy until November 1, 1974.

My two brothers and I decided that it would be best to bring her to her own home and with assistance that was accomplished. I, at that time, was involved in Administration in a large Catholic Girlsí High School, and I believed that it would be best for me to request a Leave of

Absence from my Superiors in the IHM Congregation. This was granted,

and from 1974 to 1980 when my mother died I remained in our family home in Roxborough and had to learn many things about home care and learn quickly. Many neighbors and friends came to my rescue and my motherís doctor was most helpful with advice and support and home visits.

My mother needed therapy, so I enrolled her in a program in a hospital nearby where she was given Physical, Occupational and Speech Therapy three times a week. Fortunately, most of these Therapy expenses were covered by her Medical Insurance (Medicare and Blue Cross and Blue Shield). She had worked at Wanamakerís Department Store for 24 years and had paid into Medical Insurance. I observed all these therapies and continued them at home four days a week. From 1974 to 1978, my mother improved very well, and at the end of the four years she was speaking slowly but with great difficulty and able to walk with a cane and use her right arm a bit.

However, in October of 1978, I found her unconscious one morning in bed and the doctor stated that she had had another stroke. After hospitalization for about a month, she was released in a totally paralyzed state with a feeding tube and unable to use either arm or leg. She became a bed patient for the next two years. Again, I sought advice from medical books, doctors and nurses and soon learned how to take care of a bed patient, use the feeding tube every 6 hours and change the catheter when necessary. Fortunately, many friends in the neighborhood came to my assistance especially when I had to get my mother out of bed with the Hoyer Lift. She needed a hospital bed and also a wheelchair so that her lungs would continue to function properly. This was a daily routine each afternoon with the Hoyer Lift and wheelchair. Every 6 hours I sat beside her bed, and with a standard pole, allowed a nutritional supplement (Ensure) to drip into her feeding tube. This included a 2 a.m. feeding so I became an around- the- clock nurse. God and the neighbors were my daily support.

All throughout these six years of suffering, my mother was mentally alert, and she and I communicated through little eye signals that I taught her in order to respond to my questions regarding her comfort, her favorite TV shows or her feelings. My motherís MD (Dr. Janet Hampton) who lived nearby was a tremendous support because she made house calls when necessary, and was always available by phone.

If there had been Hospice or some other Home Care Organization at that time, I would have applied for those services, but in the 1970's this was not in existence. We could not afford Private Nursing Care, and I refused to put her into a Nursing Home. I could not subject my mother to such deplorable conditions as long as I was alive and able to take care of her. I am grateful that I was able to do what was necessary for her comfort and keep her in the familiar environs of her own home.

My mother passed away in the Roxborough Hospital on May 22, 1980 after severe de-hydration and a stomach virus that the doctors were unable to isolate or treat. She was only in the hospital for three days and I was sorry that she could not die at home because that was her wish. My two brothers and I were at her bedside when she breathed her last breath. I was very grateful that I had been able to care for her during those very difficult years when she suffered so intensely.

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