Caring for a family member who is dying

Caring for a family member who is dying is one of the most difficult experiences I think anyone can face, but it can also be the most rewarding at the same time. I had the privilege of caring for my mothers' mother, my Ma, during the last 6 months of her life. She died the middle of December 1999, and it is at this time of year that my thoughts include memories of her.

Ma had been struggling with what doctors diagnosed as Emphysema, ever since I was a teenager, and it became increasingly more difficult for her to breathe as the years passed. Following the sudden death of her husband, my Pa, due to a heart attack only a few months after he retired, Ma did fairly well. After all, she had her mother as an example. She outlived four husbands. Several years passes and then my mother moved in with her mother for 3 years, when it became evident that Ma needed a little help. When she could't be left at home by herself during the day, while my mother was at work, it was decided that Ma needed to sell her home and move somewhere that she could get more help and care. It was uncertain how much longer Ma could continue, in her condition. She was in her mid 70's and her mother died at 97 years of age, so genetics were in her favor. However, she had become dependent on steroid in-hailers, breathing treatments and the assistance of an oxygen concentrator. I had it in my heart, ever since I can remember, to care for my family members when they got older. My mother, two uncles and aunt agreed that their mother could live with me, and I would care for her, but my mothers siblings did not make doing so easy for me. They managed Ma's finances.

I worked at home, caring for a disabled client who live with my husband and I. We had two small houses, very close together, on an acre of land. We lived in one house and rented out the other. My tenant decided to move, and so my grandmother moved into the cottage on Mothers Day weekend. Ma would have preferred to die in her own home, and the change was not an easy one for her, but she was content as long as I promised that she would not die in a hospital or nursing home. I had no problem making and keeping that promise to her. We were very close, and I considered it an honor and a privilege to be there for her at that time in her life. She brought all of her most valued possessions and enjoyed being close to family. I had a window of time to be there for my grandmother, so I didn't plant my garden or get into any projects while she was with us. Those things would be there for me to do after Ma was gone and they could wait. I cared for my client, and I cared for Ma.

My day was almost half over when Ma would get up in the morning. I didn't care how many times she told me about how she and Pa met. I delighted to sit every day with her for an hour or two by her bedside and hear stories about her life. Those are precious moments that I treasure. She wasn't always pleasant, but she tried to be. Once she said to me, "I used to change your diapers. Now it's your turn to change mine". I knew this was tough for her, but she was more concerned about me.

With no previous experience or knowledge about the process of death, except with farm animals, I braved the passing weeks. I had heard that it can be different for every person, but my memory of those days leaves me wishing that I had been better prepared. Ma and I went to her scheduled doctors visit on Thursday. They decided that she had to go immediately to the hospital, because her blood pressure was 180 something over another number above 100. They said Ma was stabilized and I brought her home from the hospital on Saturday. She walked into the house from the car just fine and ate well that day. What she didn't tell me was that Saturday night she was afraid to go to sleep, for fear that she wouldn't wake up. She decided not to go to church with us the next morning and called a friend to come sit with her after we left, because she didn't want to be alone, even for two hours. She didn't eat much Sunday, but didn't tell me how she felt or what she was thinking until 8 0'clock Monday morning. That is when she asked me to take her over to my house. Within an hour I could tell that if I didn't move her right then, using my clients wheelchair, that I wouldn't be able to move her at all. I set up another bed in the bedroom across from my client, so I could be near both of them when the lady I cared for returned home from day program.

Ma had an insurance policy that would provide in home nursing care during a time like this, so I called the doctors office first thing. I asked them to send a nurse to care for Ma. The doctors office insisted that I bring her in to be evaluated first. "I can't move her. She is dying", I said. "How do you know she is dying", they asked. They refused to send someone to my home, so I was unable to utilize the services she had paid for. It was all on me at that point, so I did my best to rise to the occasion.

By 10 a.m. Ma couldn't speak. Her bodily functions were shutting down and she just stared. I have seen it before in animals - that deep, bottomless, black hole look when the pupil crowds-out the iris of the eyes, but never in a person. I called the family and told them to come quickly if they wanted to say their good-byes.

Aunts, uncles, cousins and the preacher came to her bedside. As she looked lovingly into the eyes of her visitors, her expression spoke paragraphs. By late afternoon her eyes were closed and I watched her chest rise and lower with each breath. I was amazed by how well she was breathing and she had a peaceful expression.

Ma had been using an oxygen concentrator for years, but in recent weeks she said she had to think about every breath she took, or she wouldn't breathe. "Why do I have to think about breathing?", she asked me on several occasions. She kept turning up the oxygen concentrator, but I kept turning it down, because it was too high. Ma's lungs could not do an gas exchange. Once, when the carbon dioxide built up in her blood, I had to take her to the hospital to have the harmful gas filtered from her blood. She was suffocating slowly, but her advance directive/living will said, "no other machines". It was only a matter of time. Family members asked me why she wasn't in the hospital. I told them that she made me promise that she wouldn't die in a hospital or nursing home. We all agreed to honor her wishes.

The evening was quiet and the rush of people coming and going was over. Ma's soul left the hold I had on her as she lay in my arms, and went to be with the Lord at 10:15 that evening. It had been a long, stressful and emotional 12 hours. Angry and frustrated by my earlier experience with the doctors office, I called them after calling the undertaker. I said, "My grandmother is dead now. Do you still want me to bring her in? Are you going to ask me how I know she is dead?" I have to admit, I was more than a little annoyed with them and the way they handled this situation. They were sorry, of course.

When the undertaker came to take Ma, I opened the door to see two men in formal attire. They arrived so quickly that it made me wonder if they slept in those suits? One of them commented, "We rarely ever pick up people who die of natural causes from a private residence any more". It was the end of the most difficult and emotionally exhausting day of my life, but I felt that God was pleased with me, because I cared for my grandmother in her final moments and I kept my promise.

A few days later, I found a paper sticking out of her journal, bookmarking a page. In August she wrote these words, "One mother can care for four children, but four children can't care for one mother. A grandchild has to do it. Thank God for Johnna". She was giving me a hug from heaven.


This is how my mind and heart remembers my grandparents - Ma & Pa