Grief and Dementia: Twice the Loss

How do you help someone through losing a person twice? I don't know, but I’m trying to figure it out. I guess by doing what I have been doing—being here for him, letting him talk when he needs to, being silent when he needs that, and through it all, just letting him know that he doesn't always have to be strong.

Earlier this year, it was time for my boyfriend's family to decide whether or not to seek hospice care for "Granny." She was 96 years old, in frail condition, and suffering from dementia; to me, it didn't seem that hard of a decision. But she wasn't my grandmother and, while I am a part of his family as he is part of mine, this simply wasn’t my decision to make. When his family did elect for hospice services, those who weren't against the decision, my boyfriend included, acknowledged that hospice was in Granny’s best interest.

I never knew Granny; my only knowledge of the woman she was came through her grandson's words. She was clearly a very special woman, and he had already mourned her loss, as her personality and her memories—what made her the woman she had been—were gone. However, with the acknowledgment that the Granny they had known was gone, on my boyfriend's part, at least, there was a great deal of guilt, and a big part of that was due to the belief that when Granny did die, there would be no more room for grief. I never believed, not even for a second, that he was right, but instead of trying to convince him there would be grief when her body died, I tried to help him come to peace with the fact that since she was already gone, there was no reason to feel guilt, and it did not make him a bad person. I'm still not sure if I handled it right, but telling him there was no reason to feel guilt because he would grieve seemed unnecessarily cruel at that point.

Dementia is a cruel disease. It forces you to lose someone twice, first when the personality goes and then when the body dies. Seeing it as a very concerned observer was hard, experiencing the actual pain of losing someone twice must be excruciating. When Granny's body died it wasn’t much more than an empty vessel, but the body was still the last living connection to the woman she had been, and I was right, horribly right. He did grieve over the loss. He's not a man who talks much about his feelings, so the night she died, I just sat there next to him and held his hand while we watched his favorite movie. At first, I worried about him, as there was no sign of grief, and I wondered if he had been right, after all. But what initially seemed to be a lack of grief was actually a kind of numbness. He carried on as if nothing had really changed, and I guess it was his way of coping or trying to be the strong man he felt his mother and sister needed him to be, but eventually the grief came, and that was as hard to bear as his guilt had been, but at least the grief was something I could understand. But even with that understanding, I still struggle with how to help him cope with his loss.

Susan Belsinger