My mother suffers from late stage Alzheimer’s disease. End stage really. This has been a long, tough and dispiriting journey from the days when the first signs of Alzheimer’s were evident some 13 or 14 years ago.
Some of the social workers at the Alzheimer’s Society and similar places like to encourage the idea that the person living with Alzheimer’s is still the same person you know and love. But, it’s hard to see it that way. To say this uncommunicative, blank-faced countenance is the same person as the art-painting, musical, caring person I knew with the ready smile; universally called “sweet” by those who met her, is hard.
To be fair to the social workers, whom I’m sure mean well, I suppose their statement is really intended for caregivers of those in the early stages of Alzheimer’s. The time when the familiar voice, movements and habits that show the personality within, are still present. Then, they’re just a bit forgetful. Perhaps their reasoning is a little muddled. But yes, the core of the person is still there.
But wow, does it change in the late stages. When they no longer recognize you and when they lose their vocal capacity – or any communicative ability really, like hand gestures and facial expression. When mobility is gone. At this point, how can you say it is still the same person?
For that is the essence of what makes this disease so horrible. It robs the person of their personality.
And it is the long, slow progression of Alzheimer’s that also makes it difficult. Years go by in their slow decline, and you are helpless to do anything about it.
There are hopes for some drugs or food supplements, but so far the best that can be claimed is a few months of delay in the decline. The continual, unstoppable decline.
I suppose each person’s perspective and experience is unique to them. But for me, the overwhelming feeling the last while is that she has been “gone” for some time. And yet, she’s still alive. So you’re not supposed to grieve. Yet, I think that’s what I have done – inside – for some time.
But now, we really are at the final stage. She is now in palliative care, meaning the doctors feel her time left is counted in days and weeks not months and years. And that has brought on a new layer of grief.