When my mother was transferred from the St. Thomas Hospice unit to the nursing home, she was very disoriented and confused and the move caused her a lot of distress. So the nursing home told us they were going to medicate her for the ambulance ride to the Alive Hospice Residence, so it wouldn’t stress her so much. When she arrived at the residence, she was sedated. She didn’t wake up until the following day. I was later told by one of the hospice nurses that they actually hadn’t thought mother would survive the night. But the next day she awoke, and though confused, she understood where she was. She was in a double occupancy room but would be moved to a single occupancy room in a matter of days when one became available.
As I mentioned before, my sisters and I had toured the Alive Hospice Residence when my mother was receiving home hospice care. I was very impressed with the cleanliness and the atmosphere of the residence. There was no nursing home type atmosphere, no smells, no noise, no overhead pages, no hospital feel. The cleanliness of the entire place was very impressive to me. It was a 30-bed facility with a sun porch, courtyard, sanctuary, library, spa, and family rooms. Each patient was provided with a very clean, cozy room which was furnished with a bed, dresser, wardrobe/closet, recliner chair, and a private bathroom. We were told to bring personal mementos from home to make it more familiar and comfortable. The whole purpose of the hospice residence was to provide a comfortable environment for terminally ill patients who could no longer be cared for in the home. It was a place for them to be able to spend the remainder of their lives with as much comfort and dignity as possible. Patients received 24-hour medical care which included symptom control and pain management. Patient’s families also received bereavement services and emotional and spiritual support from social workers and chaplains if needed. Hospice nurses provided the medical care, and aides (called care partners) provided personal care. There were a multitude of volunteers who visited daily. Some just sat with the patients and provided company and a listening ear. Some were involved in pet therapy where animals were brought in to the patients, and some provided music therapy by playing instruments and/or singing.
The family rooms provided snacks and coffee machines for families of patients. Sometimes people brought pizza or fried chicken for the families. Every morning there were fresh donuts and pastries. The family room we frequented the most had a fireplace, which was nice since we were there in the late fall.
My mother was in the Alive Hospice Residence for 2 months. She continued to live longer than seemed possible and longer than any of her doctors believed she would. The Alive Hospice Residence was a bittersweet place for me. In many ways, I hated going there because it was a constant reminder of death. After all, my mother had come there to die and so I knew that death WOULD be the final outcome. I saw patients die almost daily there and I knew our story would have a similar ending. I met other families, heard their stories, and saw and lived their grief. For the most part, it was a sad place. I guess you could say it was like one long continuous vigil. On the other hand, much to my surprise, I discovered it was a place that brought me much spiritual peace. I found comfort in the courtyard and the times that I spent the night there, I found comfort praying in the sanctuary. I remember in particular a beautiful tree outside of the window in front of my mother’s bed (I believe it was a maple tree) that was bursting with the splendor of fall colors. It was absolutely gorgeous. I loved that tree. While there was a perfect view of this tree from my mother’s bed, I don’t know if she was really able to enjoy or even recognize the beauty just outside her window. From the courtyard where we often would go to sit outside in the sun when mother was sleeping, or where we would go to make phone calls, we had a perfect view of this tree. I heard many stories from the hospice nurses about patients reporting angels in their rooms just prior to their death. These stories always intrigued me. In a place where death happened almost daily, I knew without a doubt that my God WAS there. I could feel His presence EVERY SINGLE DAY I was in that residence.
The care partners took good care of my mother. It was such a joy and a relief to come every day to visit and find her clean and smelling like baby powder, her hair always shampooed and brushed, and in a clean gown. My mother had suffered from horrible psoriasis for years, mainly on her back, elbows, and buttocks, and the care partners took excellent care of her skin. They rubbed her down with lotion after each bath. One of the care partners who came in to bathe her a couple of weeks before her death lifted my mother’s gown one day and asked me if I had seen her back lately. I was almost fearful to look, because I knew how bad her psoriasis had been. I had seen it at its worst. But when she showed it to me, I can honestly say I was flabbergasted. I had not seen my mother’s skin look that good in years! For the three months that my mother was bedridden, she never got one decubitus ulcer (bedsore). The care partners turned her religiously. After she had been there a few weeks, they brought in a special bed for her which automatically inflated at certain intervals which made it where they didn’t have to turn her quite as frequently. It took a while getting used to the noise of the bed when it would inflate.
The emotional roller coaster ride my sisters and I had been on continued. Shortly after she arrived mother started having bladder spasms which brought her a lot of discomfort. She had a foley catheter which had been placed weeks before while she was in the St. Thomas Hospice unit. A urinalysis had shown a urinary tract infection and she was given antibiotics and an antispasmodic. Her condition deteriorated to the point that my sisters and I were told that she was very near the end and we might want to call our family together. She seemed to be unconscious at this point, although we were never sure if she could still hear us. We talked to her as if she could. My sisters and I gathered our spouses and children together and we all squeezed into the room together with our priest who had brought copies of Ministration at the Time of Death, a Rite in the Book of Common Prayer including a prayer for one near death. We stood around her bed and we prayed. Her hands and fingers started swelling that night and we were told she was no longer producing urine as evidenced by her catheter bag staying empty. We were told her kidneys had shut down and this was a sign of impending death. Thinking our mother would die that night, my sisters and I spent the night. We told our mother we were spending the night with her- that we were having a slumber party (that is always what we would tell her when one of us spent the night which brought a smile to her face a time or two). After we had fallen asleep, some nurses came in to turn mother and one of them noticed my mother’s abdomen seemed to be swelling. After palpating my mother’s abdomen, one of them suspected the swelling was my mother’s very enlarged bladder. They decided to check to see if her catheter was patent. It was determined that the reason we weren’t seeing urine in the catheter bag was because her catheter was obstructed with blood clots and sediment. Another catheter was placed and boy, did the urine start flowing.
By morning, mother was awake and talking some and all swelling in her hands and fingers was gone. It seemed she had escaped death once again. She amazed the hospice staff. That day she was in and out of consciousness and she talked out of her head a lot. I had learned that dying people often seem to interact with “beings” invisible to others. They may talk to them, reach for them, smile or wave at them. My mother began doing this. She told us her good friend , Margaret, who had been a long time neighbor and who had died of lung cancer years before, was in the room. She also said my father was in the room and “sitting on the fence.” When I asked her what fence he was sitting on, she pointed to the bed rails. A shiver went up my spine. Everyone she reported “seeing” or had called out for, had been someone significant in her life who she had loved and who was already dead- her mother, her husband, her good friend and neighbor, and an aunt. I believe these loved ones had come to escort her to another world- a world she was periodically getting a glimpse of. But it just wasn’t quite her time to go.
A main fear my mother had throughout her illness was one of dying alone. But after witnessing what I did, I was convinced and I believe to this day, that in death, one is never alone. My mother was just beginning to teach me through her dying, that life does continue on in some way after death.