by Brad McRae
My father died at home surrounded by familiar things and by the people who loved him. We had always been very close and I thought I would be devastated by his death. Such was not to be the case. My father’s death will always be excruciatingly sad and very difficult for me, but I am also very much comforted by the fact that we were able to take care of him at home. This would not have been possible without the help we received from friends, neighbours, and the Home Hospice Association of Sonoma County.
My story begins when my parents were preparing to visit us one September, that magical time of the year between summer and fall. We were preparing for their visit when they called with the bad news. My father had been diagnosed as having lung cancer for the second time. One lung had been removed six years before, so it was not possible to operate and he could no longer tolerate chemotherapy.
I live in Halifax, Nova Scotia, and my parents lived 4,000 miles away, in California. I felt overwhelmed by the distance, and hopeless. Having recently started my own business, with all that that entails, it was difficult to leave. I felt caught between wanting to go to California and needing to be at home. (I think, in retrospect, that I didn’t want to face the reality of what was happening on the other side of the continent.) I talked it over with my wife and we made reservations to visit at Christmas. I would go sooner if necessary.
We arrived in California at Christmas not knowing what to expect. What would he look like? How coherent would he be? Could I handle it?
The reality was very different from what I had anticipated. The hospital bed dominated the room, and tanks of oxygen were lined up against one wall. We found that on some days my father was alert and talkative and would go out for some exercise. On other days he looked pasty and pale, did not communicate, and preferred to stay in bed and watch television. My father, too, was having to make some major physical and psychological adjustments.
It was very hard to leave after two weeks there, because there was still so much uncertainty. Uncertainty was to play a large role in our lives for the next seven months.
I returned to see my father at the end of April and, amazingly enough, he looked and felt better than he had at Christmas. In fact, he was so much improved that I began to wonder if he really did have cancer.
Again I went home, and by the beginning of June he was much worse. I was having a great deal of difficulty deciding when I should go see him again. I wanted to go while he still felt well enough that we could talk. I also wanted to be there for the funeral. And my father told me over the phone that he wanted me to come home three to six months after his death so I could help my mother when the immediate support was no longer there.
It seemed there was no right choice. Finally at the end of June, my aunt called and said to come right away.
When I arrived in California I found my mother exhausted. She had been coping with the illness since September. But my father didn’t look too bad; his main problem was getting out of bed at night to go to the bathroom. I didn’t realize how difficult things were until the first night when I helped him get out of bed and pulled a ligament in my back.
When I was heading to my parents’ home, my greatest fear this time had been that I was going to watch my father die. After being there for a few days, I found out that I was really there to help take care of him. I took him the foods he wanted when he felt like eating; I read to him; we talked, and we watched television together.
At some point a friend loaned us a wheelchair. At first my dad didn’t want to use it. For him it seemed to be just one more sign of his illness and loss of freedom and mobility. Finally I got him to try it, and he loved it. He was free to travel outside, to see the flowers, and to visit with people he wouldn’t ordinarily see. It also gave us time to speak together privately, which had been a special part of our relationship for years. It was comforting to both of us to be able to continue our traditional time to really speak with each other. Thereafter, once or twice a day my father would say, “Let’s go for a spin.”
Taking care of the terminally ill is very demanding. I think that often when my father asked for things it was not because he really wanted them but because he wanted to make sure we were there, to have the contact. We found it difficult to be responsible for an adult who not long before had been independent. The feeling of being housebound, when used to the freedom to come and go as you please, is a big adjustment. With my being there, my mother and I could spell each other off.
One of the reasons we were able to give my father such high-quality care was the support we received from our relatives, friends, and neighbours, and from the Home Hospice Association of Sonoma County. Some relatives, friends, and neighbours would visit; others would send over cakes, salads, and casseroles.
I remember one evening, after a very hard day, we received a whole dinner from a number of people. Because we had so many things to do and because the experience was so emotionally draining, not having to even think of cooking that night made a big difference. Also, the message of support from the food givers was abundantly clear. Just going out to the store to buy food seemed like a vacation, because we were on call 24/7, so my mother and I spelled each other off.
Other gestures of thoughtfulness also meant a great deal. One neighbour who had already gone through a serious illness with her husband loaned us medical aids, which she delivered to our door, and another neighbour offered to stay with my dad so my mother and I could leave the house together. We were very grateful and very touched at how good everyone was to us at this time. What was truly amazing was the help and support we received from the people at Home Hospice.
Louise, a registered nurse who works the night shift at a local hospital, is also a hospice volunteer. She would often stop by the house to offer support and counselling in the mornings on her way home from work. The support and counselling, by the way, were not just for my father. A basic part of the philosophy of the Home Hospice movement is to support the family members as well, because if the family members are supported they can do a better job of taking care of the terminally ill.
The Home Hospice volunteers also told us what to expect at each stage in the illness. As my father became weaker, he lost his appetite and started eating less and less food. This upset my mother greatly. Louise told us that this was a natural stage in the illness. She then suggested that he try drinking several cans of Ensure each day, a milkshake-like drink that contains all of the nutrition, vitamins, and minerals he would need. The Ensure stabilized my father’s weight and made it easier for us to allow him to eat only when he wanted to. In connection with this, Louise explained to us how important it is for the terminally ill to maintain as much control as possible over their lives.
The hospice workers went to great lengths to be supportive. One day, my mother mentioned that she would like to have her car washed. I had hurt my back lifting my father, so I couldn’t wash it, and with everything else we had to do, going to the car wash just wasn’t a high priority. The next day Louise sent her two teenage sons over to wash and wax the car. It was a small thing, but it made my mom feel cared for so she could go on and continue in her role as primary caregiver for my father.
Beverly, another hospice volunteer, frequently offered to stay with my father so my mother could get out of the house. She also brought sheepskin footpads so my father’s feet wouldn’t get bedsores from all the time he was spending in bed. And lastly, Sue Brown, a social worker with hospice, came to the house several times and helped us say things to each other and express our feelings for each other in ways that would have been very difficult, if not impossible, for us to do without her help.
I was at my parents’ home for a little over three weeks. Before I left, I made sure that help would be available in the house at night. My brother-in-law would cover some night shifts, and we hired a nurse’s aid for the other nights. I later found out that, after I left, the nurse’s aid we hired did not work out; all she did was overmedicate my father. After two weeks my mother had had enough and decided to move my father into a nursing home.
We knew he wouldn’t get the care and attention there that he had been getting at home, but the nursing home was even worse than expected. I began to dread calling home. Each time I heard the same stories about how unhappy my parents were with the nursing home.
One Tuesday night I braced myself for the call, expecting to hear the same story again. I was shocked. My mother told me that she had marched in and made arrangements to take my father home the next morning. My brother-in-law, Jeff, and Louise’s two sons were going to spend alternate nights at their house. My mother had arranged to have most of the furniture moved out of the master bedroom and the hospital bed and the oxygen brought back. This poor tired woman sounded like a general in charge of an army.
My father died at home in his sleep one week later. Jeff was sitting at his bedside. Beverly from hospice had stopped by the house and was having coffee with my mother in the living room. Louise was there ten minutes later.
When I think of my father dying, I feel sad, but I also have this tremendously warm feeling based on the care we were able to give him and on all the support we received. Some of the people from hospice still stop by to see how my mother is doing. These people who started out as strangers became a part of our family. They made a significant difference in all of our lives at a very difficult time. I will never forget them.