Dementia – grieving before they are gone

Watching someone you love slowly withdraw from the pleasures of life, from relationships formed and change from the person you loved (and still love immensely) into all I can describe as a mere shadow of themselves … It may not be the correct terminology/language and I certainly don’t intend to offend, but how else do you explain it when your special someone can no longer have a conversation with you, and are unaware mostly of your presence?

The changes I’m witnessing have impacted me more than I thought possible. I know my grandma and I know her wishes – and this position I see her in today is certainly not one of them. My grandma’s diagnosis with dementia has made me understand that I never really could have imagined what my patients and their families were going through. I know my grandma and I know her wishes – and this position I see her in today is certainly not one of them.

My grandma’s diagnosis with dementia has made me understand that I never really could have imagined what my patients and their families were going through. It has given me a greater understanding of those exact losses, the pain and grief that the people I’ve cared for have previously talked to me about. I can say it’s much worse than I imagined, now that it’s happening to my dear grandma.

I still recall the day the Geriatrician diagnosed my grandma with mixed Vascular Dementia and Alzheimer’s disease. The news wasn’t surprising in hindsight. Never-the-less it was rather confronting and not easy to accept seeing the official words “dementia” scribed in her medical notes.

The last six months has seen a steady decline in her cognition, and the person I’ve always admired and looked up to is now finding it hard to engage with me. I desperately still want to ask for her advice as I always did, but I know she can’t find the words. The glaze over her eyes, symbolic of the wall between us, impacting on my ability to completely understand what she is going through. Some days better than others side-stepping in course with glimmers of hope and every so often flashes of her once previous cheeky self.

My grandma told us she never wanted to get to the stage where she was bed bound in a nursing home.

Sadly, that day has come.

With each decline I prepare myself for what lies ahead. The emotions are hard to fight and I’ve started to acknowledge that in fact I’m grieving before she is gone. Even though she is still alive, I’m grieving the loss of her abilities and independence, the loss of her cognition and the advice she always gave me, loss of hope, the loss of her identity and the many more losses I can feel but can’t explain.

Allowing myself to acknowledge that I’m grieving helped me to understand the strong emotions and intense sadness every time I see her. I’ve taken to blogging as an outlet to express these emotions, which I find helps me express the deep sadness I feel every time I visit her.

Grieving before death has taken place is actually a real thing, which may be something many can relate to after reading this. It’s called anticipatory grief.

Understanding Anticipatory Grief

Most people attribute grief as something that happens after a death, however as I’ve talked about it can often begins before death occurs. It can start from the time we learn that death from an illness or disease will occur at some stage in the not so distant future. It’s natural that we begin to grieve. It’s different from the grief that follows a death although many of the symptoms of regular grief similar- such as sadness, isolation, forgetfulness and depression. Anticipatory grief is just as much about accepting the many losses of the person’s former self as it is about accepting their future death.

The subconscious or conscious thoughts of accepting that death is imminent can bring an overwhelming anxiety and dread. I’ve spoken about the losses I felt for my grandma. Feeling these losses that can in fact make people feel a sense of relief once the person actually dies.

Beware of your feelings and acknowledge if you are going through anticipatory grieving it will not only help you make sense of it, but it might even help relieve your anxieties.

Please share with us your experiences of caring for a loved one, and the anticipatory grief you may be feeling. Or perhaps you have been through a similar experience some time ago and want to share….