“On top of the guilt is about ten thousand layers of grief. Your loved one is constantly changing and losing more pieces of themselves. You grieve all of the little losses along the way. The first time your loved one needs help eating, getting dressed, or using the bathroom. The first time they forget your name, your birthday, or who you are. The first time they need to use a wheelchair or need help getting up from a chair. There is grief along with each loss.
Not only are you grieving what you have already lost, but you are also grieving what you will lose in the future. You are grieving a death that has yet to come. You are thinking about what the future will look like and when things might happen. When will your loved one die? How will it happen?
You are also grieving what you will never have, all of the experiences you will miss out on with your loved one either because they have Alzheimer’s or because they have died. Long before my mom died, I began grieving the fact that I would be young(ish) when she died. I knew I wouldn’t have my mom for various stages of my life. I knew she wouldn’t be here for certain milestones and life events. I began grieving that the day she was diagnosed.
With Alzheimer’s, you grieve the loss of the person you once knew. Then, you grieve the loss of the physical person when they eventually die. You grieve all the small losses along the way. You grieve the losses that have yet to come. You grieve the things you will never have in the first place. Basically, there’s a lot of grief.”
(This is an excerpt from my new book “When Only Love Remains: Surviving My Mom’s Battle with Early Onset Alzheimer’s.” It will be available on Amazon on July 11th!)