Grief, Dying, and Death--A Part of Life for the Dementia CaregiverOne of the hardest parts of being a caregiver for a dementia patient is knowing that they may eventually forget who you are. Grief, the process of dying, and death are part of your job. A very hard part. Seeing our Mom lose a little more of who she was week after week began to wear on us. Often, when it was just the two of us, we would spend a lot of our time laughing because it helped us break the tension of the incredible sadness of dealing with the loss of our Mother. 
Although she wasn’t actually diagnosed with Alzheimer’s disease until about six months before her death she had been experiencing dementia symptoms for years prior to that. Little by little our Mother, the one who had sewn clothes for our dolls when we were children, who had taught us how to cook and bake and clean a house, who had given us special cards and gifts and told us how much she loved us . . . was forgetting our names.Our Mom died in September 2008, but we had already been grieving for her for quite some time. The official name for what were experiencing is anticipatory grief , the act of mourning when a loved one is expected to die. But, it wasn’t just physical death that made us sad. It was the loss of our Mom’s personality—of who she was. In a sad way, her physical death has been easier for me (Paula) to handle because I was constantly involved in her care and I saw the pain (from blood clots) that she endured and I also saw her inability to understand the pain, to cope with the pain, and to properly express her needs and wants. Dealing with her physical passing was almost a relief. Sadly, even if your loved one lives for many years with dementia symptoms, you, as their caregiver, will have to prepare yourself not only for their actual death, but also for the increased lack of ability to recognize you and to communicate with you. And you will have to help prepare them for these realities. We hope that our experience will help you in some way to understand and to cope with the emotions and duties involved in grief, dying, and death. |
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