Dear Barbara,  Please talk about grieving the gradual but sure loss of a loved one with dementia.

Perhaps you’ve heard it said: Having a loved one with dementia is the long goodbye. We lose the person we know long before their body dies. As with all terminal illness, grief begins with the diagnosis--for the the patient, as well as everyone close to them. For someone who can’t be fixed there is a gradual progression of disease which ends in death. For someone with dementia, because the mind goes in advance of the body, our loved one gradually becomes a person we really don’t know. Not knowing our loved one becomes not knowing how to interact with them. “Who is this woman who is my mother? I don’t know her and she doesn’t know me. What do we do with each other?”

As the person gradually changes and becomes less able to function mentally and emotionally, we, the watchers, must adjust because the person with dementia can’t even fathom what is occurring. We, the watchers, must learn to accept our loved one not for who they used to be but who and where they are now. This is part of our grieving.

Memories are made of the past and hopes are part of the future. People with dementia force those of us around them to live in the present--what is occurring right now is what is important, is what is happening. With memory loss the past is gone and the future is not contemplated, only the present has value.

Grief for the dead is self centered. Most of us believe the deceased is in a better place so our grief is about us (the living) having to adjust to what we have lost.

Grief for a person with dementia is for the afflicted as well as for ourselves, for all that has and is being lost.

Grief for the dead allows us to move forward, to make a new life built on positive, balanced memories.

Grief for a person with dementia holds us in place, prevents us from moving on, from rebuilding. Everyday we are reminded just by being in their presence what we have lost and are still losing.

My only remedy for the ongoing grief experienced by the caregiver of a person with Alzheimer’s, or any other form of dementia, is love and acceptance. Acceptance for who our loved one is and what they can do today. Acceptance that they are unable to consciously give us what we want from them, as a spouse, as a child, as a sibling. Acceptance that we no longer have a give and take relationship. However, we can give to them. We can give love, give attendance and give presence. We can ask for nothing, just give and see what happens. And we need to give the same love and acceptance we offer our loved one to ourselves as we go through this challenging experience of continuous grief.

All this said, I know I have not addressed the hostility, anger and aggression that can occur. These facets of a changing personality can hurt and bewilder us. I can only suggest we gently remind ourselves not to take these effects of our loved one’s disease personally (easier said than done) and to continually separate the current behavior from the memory of the relationship. Try to love the person and the memory, not the behavior.

Something More... about Grief for a Person with Dementia

Many books have been written about how to live with the tragedy of dementia. What is written here just touches upon the body of knowledge available today to guide and support those of us faced with this complex experience. The dying process for the dementia patient is unique-- it doesn't play by the rules. I have a booklet that can help families in this situation, How Do I Know You? Dementia at the End of Life.