The two weeks my mother was in the St. Thomas hospice unit, it seemed her cognitive abilities declined even more. She was now bedridden. Mistakenly, she had been given an oral drug for diabetes (a drug she had taken previously but had to stop due to the severe hypoglycemia it caused). The drug was listed on her list of medications during her initial hospice assessment some 6 months before, and apparently the same list followed her to the hospital. Her blood sugar dropped dangerously low which further contributed to her confusion and caused her to have what I called “stuporous stares.” It seems one day she would be knocking at death’s door, only to be alert and lucid a few days later. The doctor assured us this was common with liver cancer patients. We loved the doctor at St. Thomas. He was always available to talk to my sisters and me and to answer our questions. Sometimes he would seek us out to ask us if we had any questions or concerns, which we appreciated. He was always very open with us and never kept the truth from us. Since mother was being discharged from St. Thomas, my sisters and I made the difficult decision to put her in a nursing home, just until we could get her into the Alive Hospice Residence downtown.
The week (or actually 5 days) she was in the nursing home is a week I try not to think about too much. It is an understatement to say the experience we had that 5 days was a nightmare. Most of it is a blur to me now, probably because I have such a desire to erase it from my memory. Because of mother’s cognitive decline, she was admitted to the Alzheimer’s floor, a very chaotic floor which always seemed understaffed to me. I can only think of one word to describe this floor. Bedlam. It reeked of urine and feces. There were patients roaming the floors and patients constantly coming into my mother’s room. The day she was admitted, I was point-blank told by a nurse not to put any of my mother’s personal items, like lotion, books, her hairbrush, etc., on top of the bedside table, because other patients had the habit of going into rooms and stealing things. The woman across the hall screamed night and day (or so it seemed). When the call light was pushed, it took WAY too long for anyone to answer it (NOT a good thing for a cancer patient who is in pain and who needs pain medications NOW). Baths were given at night by male technicians which my mother didn’t feel comfortable with at all. I can’t say that I particularly liked the idea myself.
My sisters and I tried to make the best of a bad situation. We brought a TV from home and a book, but she was no longer able to comprehend what she read. We brought pictures from home and tried to make the room a little more cozy. We visited her daily, sometimes twice. Hospice provided care and visits while she was in the nursing home, but once again, it was a new team, since she was in a new facility. The food was brought into her room on a tray and left. We had to make sure someone from our family was there for all three meals, or our mother didn’t eat.
The straw that broke the camel’s back was when my mother told us one morning that one of the technicians had come into her room the night before and tried to rape her. She begged us to get her out of there and take her home. She was terrified. We asked lots of questions. She said she had told one of the nurses about it and the nurse had given her a handgun and told her to keep it under her pillow and if the man returned, to use it on him. This only served to terrify my mother even more because she was deathly afraid of guns. She said she had stayed awake that whole night afraid to move her head on the pillow for fear the gun would go off. We checked under her pillow and showed her there was no gun but this didn’t calm her down. It only made her angry. My sisters and I decided an Alzheimer’s floor was just not the place for our mother. She wasn’t getting adequate care in our opinion and her cancer needs were not being met. So we decided to bring her back to her home to care for her ourselves. Frankly, the thought of us trying to care for her ourselves frightened the heck out of me but I felt we had no other choice. We knew it was not going to be easy by any means but we knew the nursing home was just NOT working out.
A day or two before we were to bring mother home from the nursing home, I was at mother’s house when the phone rang. It was a social worker, telling us that an opening had become available in the Alive Hospice residence. They asked if I wanted to make arrangements to have my mother brought there. I immediately felt like prayers had been answered and felt such a feeling of relief. But those feelings were short-lived.
My oldest sister was having second thoughts on the Alive Hospice Residence. She decided she wanted to try to bring mother to her house, and have us all take turns caring for her there. The problem was, my sister worked full-time and she still intended to continue to work. Her plan was for the middle sister and me to come to her house and care for mother during the day, and then she would have the night shift. I didn’t see this working. When would she ever get any sleep? I knew this arrangement would bring a lot of stress to her and her family, especially her husband, who had health issues of his own. The doctor at St. Thomas had told us he no longer felt my mother was a candidate for home care. She was an extremely difficult patient (partly her nature and partly her hepatic encephalopathy) and she was a high risk patient for both falling and bedsores. He said it would be extremely demanding work physically on my sisters and me, especially since she was now bedridden. I was at the point where I just wanted to spend quality time with my mother during the small amount of time she had left to be on this earth. I wanted to be my mother’s daughter again and not her caregiver. Not that I didn’t want to take care of my mother, but caregiving for her was one big battle. It was a battle to keep her clean, it was a battle to medicate her, it was a battle to change her diaper. I was tired of the battles. I couldn’t do it anymore. I knew the professionals at the Alive Hospice Residence could do a better job than we could. I admired my sister for wanting to try to keep my mother in her home, and somehow I wish things could have been different and that we could have done it, but the deterioration of my mother’s mind and the hepatic encephalopathy made it impossible. The middle sister felt pretty much the same as I did. We had all three toured the residence a few months earlier and liked it. And our mother had said multiple times that she had heard nice things about it and wouldn’t mind spending her final days there, if it had to come to that. I felt very strongly that my mother needed to be at the Alive Hospice Residence where she would have 24-hour medical care by professionals, but my oldest sister didn’t want her there. Our emotions were running high after the week we had just spent in the nursing home, and we argued. Boy did we argue.
I was my mother’s medical power of attorney, and having a medical background myself, I felt I had a pretty good handle on my mother’s medical conditions, her cancers, and her prognosis. I knew that if we declined the spot in the hospice residence, that they would no longer consider us if we changed our mind later down the road and decided home care was not working or was too difficult. It had taken us a long time to get her in the residence and I didn’t want to jeopardize “losing our spot.” So I told the social worker to make the arrangements to have her transported from the nursing home to the hospice residence.