It is a universal truth that we will die, but as a caregiver that reality takes on an immediacy that is incomprehensible to those who do not travel this journey. Yet it is still shrouded in mystery. It is a wallpaper always in the background of every new observance of slow deterioration. Yes, we will die and yes, we are caring for someone who is slowly dying. There is a reason that Alzheimer’s disease is referred to as a ‘Slow death’. Yet, like all of us we do not know when or how or even where.
Current statistics state that 80 percent of caregiver’s will suffer from depression. Not documented is the percentage of caregivers who die before the one with dementia. That happens and I would hazard a guess it occurs more frequently than reported. My Lifeline Group often voice the sentiment that they do not want to die before their spouses. We all want to care for our loved ones until the end. Yet we know we have no control over that. This fear is just one of the rungs on the ladder of depression.
The fact is that Alzheimer’s disease leads to death. We acknowledge that but when it happens it is no less traumatic than any other passing of a loved one. So we experienced a deep sadness when our Lifeline Group of five couples was reduced to nine. One in the family had died. We mourned together. We could not help but wonder who would be next.
When I got the news a year ago today, it hurt. I had to mark the moment somehow so I sat and wrote:
Now we are 9
We met by chance but perhaps not
We ten self-selected from a disparate group
United by the ever mutating forgetfulness
Of partners here but not here; changed yet unchanging
Living in two worlds; alternate realities.
We ten bonded deciding to share, to care, to laugh, to love, to live.
There is just one escape, we know it
It is the same for all – the ultimate equalizer.
We refused to speculate or predict
How could we?
Each day, learning, all effort focussed on doing, doing, doing.
Each day new, unexpected, mysterious, unknown, surprising,
Each day its own journey within the journey
Now the news – one is gone.
We contemplate the expected unexpected and wonder
We are sad for the death and sadder for the living.
We mourn the loss
We – the Ten that are now
The Meander: It is good we do not know the future and it does no good to speculate. One day at a time is the way we must live as each one is new, different and unique to each of us. We carry on, we share and we continue to care for each other. Today my heart sighs for the two who is now the one.