When we started receiving care with Alive Hospice for both my mother and father, we were given a white notebook which was a hospice guide for both the patient and the caregivers. This notebook contained important phone numbers, and an overview of the hospice program. Also in this notebook, was a thin blue book entitled Gone From My Sight: The Dying Experience by Barbara Karnes. I will admit that I had a love/hate relationship with this book. I read it and my mother read it (I found her multiple times sitting in her recliner chair reading the book). The book very simply explained the dying process- what you will see months before death, weeks before death, days before death and hours before death. It was an excellent book written in a very straightforward manner by a hospice nurse. In many ways it was very helpful. But I remember feeling a little let down by this book when my father died as he didn’t “follow” the book at all. I particularly remember the book saying one of the physical changes you will see in a dying person one to two weeks prior to death is the nailbeds, hands and feet appearing pale or bluish due to poor circulation. This made me keep checking my father’s nailbeds those last few weeks and days. They never turned pale or blue. Even the night he died, his nailbeds were pink and healthy looking. I even looked at them right before the paramedics took him away, after he had been deceased for over an hour, and his nail beds were not blue. I was mad at that book. But I found myself reading it again when I came across it in the Hospice notebook we received for my mother. But this time, the first page stuck with me. It said any one of the changes or signs mentioned in the book MAY be present. It said all may be present or none of them may be present. It also said “Death is as unique as the individual who is experiencing it.” Yes, I found that to be true.
We reached a point where we had to turn the TV off for good. It seemed mother started “living out” things she was seeing on TV. I’ll never forget the day my sister and I came to visit and heard our mother screaming as soon as we entered the wing. I couldn’t imagine what had upset her so. We entered her room and found one of the care partners standing over her bed trying to calm her. Mother was screaming that she didn’t want the judge to take her to jail and electrocute her. Her favorite program was Judge Judy and some of the other judge shows. The first thing we did was go flip the TV off. Since Christmas was approaching, we turned her radio on to a station who was playing Christmas music 24 hours a day and this seemed to soothe her.
Mother still had short infrequent times when she was pretty lucid and times she seemed to recognize us and know our names. One day (a day that was pretty sad for me) she called me to her bedside. She was very weak and her voice was raspy. She held my hand and told me she wanted me to know that she was sorry for not having taken more pictures of me when I was a baby. I laughed to myself at this “deathbed confession” at first, until I saw the seriousness in her face and realized how deeply sorry she was for not having taken more pictures of me. She told me that she was exhausted chasing three little ones around back in those days and she just never seemed to be able to find the time to grab the camera. She also told me she and my father didn’t have a lot of money to have professional pictures made. I kept saying it was alright, and that it didn’t bother me in the least. She kept saying she was sorry. I had told my mother before that she was a good mother and that I would be happy if I could be half the mother she was and I meant it. So while I found it funny that THIS is what was bothering her on her deathbed, I was also truly touched by her apology.
The last few weeks of mother’s life, she became agitated when the care partners would turn her. This would make her scream out loud. She screamed for them not to hurt her. She would always ask them what she had done to make them hurt her. They started her on an antipsychotic medication and would give her morphine, thinking she was in pain from her cancer. While this calmed her, it made her sleep a lot. This bothered my oldest sister who felt our mother was being overmedicated and she told one of the nurses that she thought they were giving mother too much medication. Personally, I hated to see the agitation in my mother. I would have rather her been medicated and comfortable and not visibly agitated or in pain. My sister again brought up the subject of taking mother home to care for her there. I became angry all over again. The three of us argued again and a social worker took us down to the family room. She sat us down and talked to us, acting as our mediator. We had a little pow wow right there in the family room. I remember a chaplain coming up to me later on and telling me that everyone grieved differently. She said the way my sister was grieving was something they were used to. She explained that some people in their grief had to find someone to blame and that someone was often the medical caregivers- the doctors and the nurses. She said this was common and that they were very used to it. She told me my sister was grieving deeply and that I needed to not be angry with her but needed to give her my support. She was absolutely right. I was never angry at my sister again.
We were told mother probably wouldn’t make it to Thanksgiving, but Thanksgiving came and went. Our family celebrated Thanksgiving that year at my sister’s house with a big dinner. It felt strange not having our mother there. The doctor told us that maybe she had hung on for Thanksgiving and would die soon after. But she just kept surprising everybody and she kept hanging on.
I hated it when people would ask me if I had given my mother “permission to die.” I heard this not only from friends, but also health care workers. I just couldn’t do that. I tried to do it but I just found it too difficult. I didn’t want to feel responsible for the timing of my mother’s death. I did try to ease her mind one day and tell her that we would all be fine. I told her we loved her and would miss her but we would be fine. I asked her if she was scared and she said, “Yes, I’m scared.” I looked at her and said, “Mother, God will take care of you.” I’ll never forget the look on her face. She looked me right in the eyes and very confidently said, I KNOW he will.
In the days before her death, the skin on her legs started busting open. Her legs were swelling with fluid. It was very hard to turn her without her legs splitting open. Bandages were applied to her legs and it was painful. It was at this point that I started praying for God to take her. I spent the night on December 4th. It was a rough night and I was exhausted. I was wondering how much more my poor mother’s body could take. I planned to spend the following night with her but decided I would first go home, eat dinner with my family, kiss my boys, grab a few things and head back to the hospice residence. But after I got home I was so tired that I decided it would be nice to stay at home and sleep in my own bed. The nurse practitioner had examined mother that afternoon before I left and told me she was not showing any active signs of dying. Her blood pressure was stable, her heart sounded good. Her nailbeds had been purplish in color for days. I thought about that darn book. I decided I would sleep at home that night and go back to the residence in the morning. At 10 pm that night my phone rang and it was the clinical psychologist I had stayed in close touch with during my mother’s illness and dying. She knew I had planned to go back that night and spend the night but I mentioned my change of plans to her. She told me she thought I needed to go back to the hospice residence and spend the night with my mother. She knew it was important to me to be with my mother when she died. She told me she knew I was tired, but she really thought I needed to go back to the residence. She talked me into it. I showered, grabbed a change of clothes, kissed my teenagers goodbye and left around midnight to head back to the residence. I went up to my mother who was sleeping and told her I was back and that I was going to spend the night. I remember sitting in the chair just outside my mother’s room with one of the older male nurses that I really liked. He told me my mother was just fighting death with all her might and just simply wasn’t ready to leave this earth. He said she was one tough old bird. I agreed. I prayed in the sanctuary that night and felt at peace. I sat in the family room a while and read. I think it was a little before 3 am before I got on the cot to sleep. Two nurses came in shortly after that to turn mother and mother started screaming. I got up to try to comfort her to no avail. They told me they were going to give her morphine so she could rest. It didn’t take her long to settle back down and I got back on the cot and fell off to sleep. I awoke a short time later to my mother vocalizing. She let out a soft moan. I just felt something wasn’t right. I got up and went to her bedside. Her head was turned to the left and her eyes were open wide, pupils dilated, and she was panting- like a dog. I stuck my head out the door and asked her nurse to come check her, that something wasn’t right. The nurse, who was fairly new to hospice, came in and told me she had just peeked in the room minutes earlier and found both my mother and me asleep. She agreed something wasn’t right and went to get the older male nurse. He came in and said mother was showing terminal agitation. He also said he thought something had happened…. something acute that was either cardiac or brain related. They gave her an injection (I think it was morphine) and assured me she wasn’t feeling anything. It dawned on me that my mother was actively dying. I asked the nurses if I should call my sisters and they said I probably should. So I called them. I stayed with my mother and held her hand and stroked her cheek. I prayed. I told her I loved her and I was with her. My mother had asked me a week or so earlier to lay in the bed with her. I had told her I would if there was room (there wasn’t). I tried to squeeze in the bed with my mother, now that she was dying, but as soon as I got in the bed, wouldn’t you know it started inflating and making a horrible noise, so I got back out. Her breathing gradually slowed down until she was showing agonal breathing. I heard one of the nurses say, “Time of death, 5:05 am.” A sadness and yet a strange feeling of peace came over me. My husband came from work and my two sisters showed up within minutes of her passing. They let us stay with our mother and we began gathering up her things. The care partners came in and gave my mother one last bath. The funeral home attendants came in with a stretcher to take her away. We said our final goodbyes to our mother. Her suffering was finally over.
We hugged the hospice nurses and left. I got in my car to drive home and it began to snow. Big white, fluffy flakes of snow. And it was beautiful.