Note: This is Part I of a tw0-part series on Alzheimer’s and grief
When Ed, my soul mate of 30 years, developed Alzheimer’s I sank deeper into despair each day. I was thinking a lot about grief related to loved ones with dementia. How you lose them little by little, but they’re still there. I was thinking about how many years the grief may last before they finally die, and then you have to begin grieving all over again.
Death is typically a clear starting point for grief, and it’s clear that eventually there will be more or less an end to it. But with dementia, loss comes in bits and pieces and drags on and on for many years long before the person even dies. One can feel completely overwhelmed by the prospect of so many years of grieving.
Grieving the Loss of the “Previous Person”
When a loved one is showing clear signs of dementia that person begins to fade away, resulting in feelings of loss and despair. And there are so many losses over time. These may include things such as negative personality changes, not being able to have meaningful conversations, and, in many cases, the person with dementia not even recognizing loved ones.
This type of grief continues as the patient declines little by little. It seems that every time a caregiver is able to come to terms with the person’s level of functioning, they get worse. One way to deal with these continuing losses is to learn to let go of the “previous person” and learn to love and cherish the new person just as he or she is. This process, which can be very difficult to master, must be repeated over and over as the disease advances.
My personal experience, as I describe it in Come Back Early Today, was that I could reach Ed again when I began to interact with him as though he were a toddler. I took him little stuffed animals, which he absolutely loved. Then I started to play with him and the stuffed animals, and I invented other little games to play with him. We both enjoyed it immensely. My pain at losing the “old Ed” was significantly decreased as I saw how much joy I could bring to my “new Ed.”