Families often had concerns about the psychological effect of a loved one’s death on a child or a spouse with dementia who live in the same home. To protect the children, families asked, “Should we transfer our loved one out of the home for the last few weeks to a retirement home or residential hospice to protect their children or grandchildren?” or “Should we move the children to a friend’s home for the last few days?” Families faced with the imminent death of the primary caregiver of a spouse with severe dementia asked, “Is it better to have my father stay at home with my mother, who is very cognitively impaired, or is it better to transfer my father to hospice when he is close to death?”
The answers are not straightforward. Often, in discussing these issues, I reassured families that they were the experts of their families. They were the best ones to make these decisions under their unique circumstances. But I also explained not to be frightened to talk to family members to find out what each thought about the situation and what was right for them. If a member did not want to speak, that was not wrong. Others in the family, who knew them well, would decide what they felt was in their best interests. In most instances, when there was a frank discussion, the necessary decisions became much more straightforward. The following brief journeys highlight possible scenarios.
Lucy’s Journey
Lucy was 12 years old. Her mother had advanced cancer with only a few weeks to live. When her parents talked with Lucy to explain that her mother would die very soon, she burst into tears and quickly stated, “Please, don’t let her die at home.” The conversation ended abruptly. Her parents had not expected such a reaction. Lucy’s mother wished to stay at home to be close to her family. They did not know what to do.
When they explained their dilemma to me, I asked permission to speak to Lucy to understand her fears. I asked Lucy if I could speak with her about her mother’s illness. She agreed. After assuring myself that Lucy knew her mother’s condition and impending death, I asked her what was most frightening about her mother dying at home. She said, “I do not want to walk into her room to find her dead. I have never seen a dead person. It must be a terrible experience.” I looked at her and said, “If we could make ‘sure’ that when your mother is close to dying, someone from your family will always go into your mother’s room before you to make sure she is alive, how would you feel about your mother dying at home?”
She answered quickly, with a smile, “Oh, I would be fine with that arrangement. Of course, it would be best for my mother to stay at home.”
We made that arrangement with the family. Lucy’s mother died at home. When I arrived in the middle of the night to confirm her death, Lucy met me at the door and said, “It’s ok. My mother is just sleeping.” When I looked puzzled, she clarified, “I mean, she has died, but she ‘looks’ just like she always did when my friends came to my home to watch a TV movie with my mother lying beside us on the sofa. My mother always fell asleep during the movie. That’s what she looks like now. I’m glad she died at home.”
Richard’s Journey
Richard was nine years old with special needs. Richard’s mother had advanced cancer. She was comfortable on minimal medication, but it was apparent the illness was progressing quickly. Richard’s parents talked to me during one of my visits about the place of care when the death was imminent. His father was very concerned about Richard due to his psychological problems and asked, “Would Richard tolerate seeing his mother die at home?” They had not talked much about the progression of his mother’s illness yet and had not talked about her death. Both had an excellent relationship with their son. I advised them to speak with Richard. He deserved to know the reality of what was happening. They would learn from his reaction what decision would be in his best interest.
On my next visit, Richard’s parents appeared very relaxed and pleased. The family had talked. They realized Richard already knew his mother’s the illness was progressing. When his father asked how he would feel about his mother dying at home, he immediately said, “Of course, we will take care of my mother at home. She has taken care of me all these years. She deserves to be well cared for by us!”
Jonathan’s Journey
Jonathan was 12 years old, an only child. His mother was dying of advanced cancer that spread to her lungs. The family lived in a small apartment. Jonathan’s mother was cared for in a hospital bed in the living room divided from a ‘computer’ room by a curtain. Jonathan did all his schoolwork on the other side of the curtain. His bedroom was up a half flight of stairs. Jonathan was, therefore, very involved with the changes his mother was undergoing. During one visit, when Jonathan was present, and after asking his parents’ permission, I told him if he had any questions about his mother’s illness or her care, he could ask me during a visit. I would answer any questions he wanted.
About a month later, he looked at me and said, “Doc, we need to talk, privately in my room.” Once we sat on the floor, he said, “Now, I am going to ask you a question, and I need you to answer honestly. I may cry – I probably will cry – but I need to know, so no matter what I do, you need to answer.” I agreed. He asked, “How long does my mother have to live?”
My mind started to race. I did not expect him to ask such a direct question so soon in the conversation. I could not say that I did not know. I could not give him a definitive answer, but I had to respond honestly. So, I decided to say what I was thinking after seeing his mother’s rapid deterioration. “I do not know exactly, but I think about a month.” He took that in, took a deep breath and spoke. “OK, then, four weeks.” I responded quickly, “No, no, I said, ‘about’ a month, maybe a little longer.” He said, “Yeah, yeah, four weeks. Ok, that’s good, I understand better now. Thank you”. The conversation was over.
Three weeks later, during a visit, Jonathan came to me, “Doc, we need to talk privately.” We went back to his room and assumed our positions on the floor. “Doc, last time we talked, you said ‘four weeks’ but look at my mother now. You were wrong!” I looked at him and said quietly, “Jonathan, I am sorry, but I think your mother will die very soon, probably in a few days to a week.” He cried a little, then said, “Ok, but I have to be there when she dies.” Again, he sent my mind racing. I had to find an honest answer, an answer that did not take away his hope. I said, “You know that your mother is a ‘mom’ who wishes the best for you. She may not want you at her bedside when she is dying. She may want to protect you. And you know, she is the one who is dying. She deserves to go through this journey her way. You must not be angry with her if she dies without you beside her.” He said, “Yes, yes, but I ‘must’ be there.” He let me tell his father about his wishes.
Jonathan’s mother died within the week during the night. Jonathan’s father tried to awaken his son when he saw her death was imminent. But Jonathan was sleeping too deeply to be awakened. I arrived about an hour later to confirm his mother’s death. Jonathan answered the door. He had awakened about 15 minutes after his mother died. He told me. “It’s ok. I was not there, but that’s ok. When I came down the stairs, I felt my mother’s spirit go through me. She told me she was ok now, not to worry.”
I could cite other examples where the family sent their children to their grandparents for the last few days or where the dying individuals were transferred to a residential hospice. Some children wanted to be visit, others did not. What is important is to communicate and understand each person’s wishes and fears.
Grace’s Journey
Grace was 90 years old with severe dementia. She and her husband, Stan, had been married for 65 years and had four children and twenty grandchildren. Grace and Stan lived in an apartment. Stan was Grace’s principal caregiver since she was diagnosed with the dementia five years before. Recently Stan had been diagnosed with extensive kidney cancer. He was comfortable but getting weaker quickly. He felt soon he would not be able to care for Grace. The family made plans to help, one daughter agreeing to take over the caregiver role for Grace. But they were unsure if Grace should be present when her husband died.
While I was having this discussion with the family, I observed Grace’s actions around her husband. She sat beside him while he was lying in bed, holding his hand. If he awakened, she asked if he wanted a drink, etc., and quickly went to bring him what he wanted, helped him to drink, helped to fix his pillow, and then quietly sat beside him again. Her daughter commented on the behaviour saying that her mother did this every day and seemed the most at peace than she had seen her in months. I explained to Grace’s daughter that she had her answer – Grace wanted to be beside her partner.
Again, I could cite many more examples of spouses with dementia being beside their partners at near-end-of-life and at their deaths. In some ways, the presence through the journey of their loved one grounds them. They relive old, fond memories and they do not mind spending hour after hour just being present. After the death, the memory of the process fades, but remnants remain, helping in discussions when they ask, “Why has my partner left me?
