Mother was admitted to the Alive Hospice Residence in October, about a year and a half after she was first diagnosed with bile duct cancer.
At the residence, mother seemed to always enjoy the pet therapy visitors. There was one in particular she really liked, and that was a weekly visit from a black cat named Baldwin. Baldwin was a very sweet, calm cat who was trained to lay in bed with the patients (if they wanted him to). The first time he came to visit her, he curled up beside my mother and she gently stroked him and talked to him. That afternoon, long after he left, mother kept reaching down and stroking the side of her leg where Baldwin had laid. When we asked her what she was doing, she told us she was petting the kitty cat. She did not seem to realize that Baldwin had gone.
One day mother started asking us where the bald-headed baby was. We asked her what bald-headed baby. She became obviously distressed about this bald-headed baby. I came out of the bathroom that afternoon and on the verge of tears, mother asked my sister what I had done with the bald-headed baby. She was anxious and extremely upset over the whereabouts of this baby. We talked to the nurses about it as we just could not get our mother’s mind off of this baby. They tried to help us solve the mystery but didn’t have much luck either. We assured her the bald-headed baby was being well cared for. The nurses asked us if our mother had ever had a miscarriage. We told them no. I had had a miscarriage, but not my mother. They told us we may want to bring a doll from home, that it might comfort my mother to hold a doll baby. My mother talked about this bald-headed baby that whole day and that whole evening. As hard as we tried, we could not get her mind off of this baby. That night, my sister went home and dug up an old doll she had as a child, that happened to not have hair. She put it in a sack and off we went the following morning to visit our mother. Mother’s room was right beside the nurses station and so as we walked by, we held up the doll we had brought. I thought one of the nurses was going to vault over the counter as she told us NOT to take the doll in as mother had FINALLY quit talking about the “bald-headed baby.” We were told to put the doll in the closet and if she brought the baby up again, then we could give her the doll. We put the doll in the closet and mother never mentioned the bald-headed baby again. The identity of the bald-headed baby remains a mystery to this day. At one time she had joked with the nurses about being there to have a baby, and since 2 out of her 3 daughters were bald-headed, we don’t know if she was thinking she had given birth or what.
Halloween was getting closer, which was a holiday my mother always enjoyed. She had a plastic electric jack-o-lantern at home that she always put in her window around Halloween, so we brought it to the hospice residence and put it on the table in front of her bed. She seemed to enjoy looking at it. Then one day, my sisters and I were visiting and she seemed a little more nervous than usual. She asked us in a very quiet voice who our visitor was. We weren’t sure what she was talking about. We asked her what visitor she was referring too. She said “our visitor over there,” and motioned towards the jack-o-lantern. She said “this visitor” wouldn’t quit staring at her. We ended up having to put “The Visitor” (as he became known) in her closet as she seemed to be frightened by it. Then several days later, she asked us where her jack-o-lantern was, so out of the closet he came and was plugged back in. She never seemed bothered by it again.
In November, we wanted some sort of Christmas decoration in her room but had to be careful what we chose as we didn’t want it to frighten her as “The Visitor” had done. Snowmen figurines were out. I ended up finding a beautiful pre-lit wreath decorated with a burgundy and gold bow to hang on the wall above her TV. The day I bought it I realized the cord was not long enough to reach the outlet in the wall below, so I told my mother I would have to bring an extension cord the following day. But I took the wreath over to her bedside and showed it to her. I plugged it in by her bed and held it up for her to look at. She told me she thought it was beautiful. So I explained again that I would hang it up on the nail above her TV but would have to bring an extension cord the following day to be able to plug it in. Mother looked at me and said, “Okay, but you aren’t going to take my star down are you?” I was puzzled by what she meant so I asked her what star she was talking about. She pointed straight up above her bed and said, “The bright star up there, that stays on all the time.” Again, cold chills went through my body. I assured her I would NEVER take her star down. I have related this story to several people since it happened and they have asked me if she might have been talking about her ceiling light fixture in her room. Her light fixture was far to the left and not directly over her bed, so I do not believe it was the light fixture she was referring to.
Over time, I watched my mother lose interest in food first, then fluids, which is another very normal part of dying- a part of the body’s slowing down. I recall when my father was dying of colon cancer and how my mother tried and tried to get him to eat. She would sit by his bedside and spoon feed anything she could get in him. He didn’t have much of an appetite and it was so hard on her when he wouldn’t eat. One day she brought his tray of food in to him and he looked her deep in the eyes and said, “Please, please, please don’t make me eat anymore. I don’t want to eat. Please stop feeding me” So she stopped. I remember my mother telling me how hard that was (to hear my father say that). I guess you realize when a loved one stops eating, that it won’t be long. I only fed my mother if she said she wanted it. If she declined, I didn’t force it. At this point, she mostly just wanted fluids and she did ask us for water and juice. One day, she looked at me and told me she didn’t want to eat anymore, that she just didn’t have an appetite. I then knew how she felt when my father had said the same words to her. I knew it wasn’t going to be long.
I can’t really say that my mother really ever got out of the denial phase of her grief or that she ever accepted the fact that she was going to die. That was the absolute hardest part of dealing with her terminal illness. I kept waiting for her to reach some sort of acceptance of it all but her denial about her dying seemed to be steadfast and fixed. She said repeatedly she “wasn’t ready to go, wasn’t ready to leave this earth.” Things felt “unfinished” to her. Most people eventually lay down the denial armor, but not my mother. She never did. I think it’s normal for most people to have at least some fear of dying, and she did. She told me she had never prayed harder in her life. Terminal illness causes not only physical discomfort, but emotional discomfort as well. It’s very distressful to watch someone you love suffer from the physical discomforts of a terminal illness- the pain, the nausea, the overwhelming fatigue, extreme weight loss, etc. But it’s even harder to watch a person suffer emotional discomfort- anxiety, fear, depression, anger, etc. Mother became very withdrawn and distant. Her prolonged dying was hard on the whole family and she had periods of extreme agitation which the hospice nurses referred to as terminal agitation. She seemed very anxious at times and fidgeted and picked at the bed sheets or her clothes. She seemed preoccupied and busy, and her brows were often deeply furrowed like she was concentrating on things we couldn’t see. Sometimes she didn’t seem to know we were even in the room. We could wave our hands in front of her face or get down close to her and speak but it was as if she looked right through us at something we could not see. The nurses and doctor assured us this was not all that uncommon in the dying process. The end was drawing closer.