They call it the ‘long goodbye’ – Alzheimer’s – the painfully slow, irreversible, progressive brain disorder that strips away the memory and the personality of the nearly 5 million people afflicted. My sweet mother-in-law is one of those 5 million. Diagnosed nearly ten year ago she currently resides in a long term care facility despite her pleas at the time of her diagnosis ‘do not put me in a nursing home!’. Her inability to do even the simplest of daily tasks, like feed and dress herself, or even go to the bathroom by herself left us without a choice.
The grief and guilt in making that decision is part of the long goodbye, part of the misery and suffering of this disease. Not knowing what will need to be decided next, not knowing whether she will know who we are or not have a clue when we visit, wondering how much more of her we will lose before we lose her completely, these are all the ‘little deaths’ that accumulate. This is called anticipatory grief.
We feel that we are losing her more and more every day, some days we feel as though she is already gone. She is just the ‘shell’ of who she once was, the gleam in her eyes is gone to a blank stare and confused look. The agony of her not knowing who her loved ones are can be palpably felt as you enter her room. She is already gone in so many ways, it makes it difficult to see her, visit her. You wonder to yourself: “She doesn’t even know I’m here, why bother?” I bother because I want to see that recognition, that love, the ‘old’ mom I knew, if even for a split second, it is worth it.
Alzheimer’s is changing her right before our eyes and you can see it in her eyes. This photo of her, taken by her granddaughter, shows, the Face of Alzheimer’s. The eyes, the window to the soul, are what show that roller coaster of grief and loss, one minute she’s here and the next she’s gone. The eye that is closest to her granddaugther’s kiss is alive and lucid. She seems to recognize the feeling, if not the person. The other eye is wandering, unaware, disconnected, lost and confused.
The Alzheimer’s Association recommends on their Grief and Loss as Alzheimer’s Progresses page that the first way to cope with the grief and loss is to Face Your Feelings. It’s hard not to face the feelings of sadness, guilt and anger or the shame or the fear. It’s much harder to find and face the feelings of joy and grace and humor in this experience. But they are all there, whether we visit regularly or we don’t.
We have been facing the feelings of sadness and grief when she doesn’t recognize us. We have been facing the fear that one day, maybe, we too will wear the Face of Alzheimer’s and our children and grandchildren will be where we are now. We have been facing our feelings of guilt and shame for ‘leaving her in a nursing home’ when she begged us not to. That one is particularly tough, leaving her behind, in a facility, while we go about our active lives.
It helps a little to know my niece is a Certified Nursing Assistant at a different long term care facility. Her day to day job is caring for the dying, for folks like mom. She does the hands on day-to-day tasks of living for them when their loved ones can’t be or aren’t there. She brushes their teeth, changes their bedding, applies lipstick or any number of other tender cares they need. I like to think that all the people who care for mom are as tender, as gentle and as truly caring about her as my niece is about the people she cares for.
With 5 million people currently suffering from Alzheimer’s, if you suppose they have, at least, 4 family members we can conservatively say that 20 million people are facing anticipatory loss day in and day out right now. By 2050 it’s estimated that 16 million people will be afflicted. That brings our conservative anticipatory grief number to 64 million people.
At 64 million it looks like facing Alzheimer’s is with all of us and it may be here for a long time to come – let’s start talking about it more – let’s start finding resources for those we love and for their caregivers. At 64 million people, you or someone you know or love, will be impacted, will wear the Face of Alzheimer’s.