This month, we enter the seventh year of living with Alzheimer’s (AD). My husband is the patient; but the circle of those who share in that diagnosis is very large.
The grandchildren, whom he might or might not remember. When he doesn’t, how does one soften that blow? The young men, who once looked to him for advice and mentoring: Now they try to bring the outside world to him, only to find a man whose focus is somewhere out there in the fog of the middle distance. Caregivers who are sometimes abused by a man whose default mode was once that of a gentleman: He might have berated the president of a bank; but never the clerk. His family, lonely for evidence of a connection to a shared past. And me, wife, lover, friend, companion, partner — like my husband, I live in a half world. He is there, and he is not there.
I knew so little, and I wanted it to be: Not So.
The past seven years have been years of learning, of facing the inevitability of age, and what aging means, of stretching myself to accept new responsibilities. I am no longer the only caregiver and every day, I bless the two members of our team, Martha and Gene, for the compassion and humor and attentiveness they bring to their roles. They watch over both of us, push me out the door when I need to get away, turn the growls to smiles.
Long before the Alzheimer’s Association defined the seven stages of the disease, Shakespeare described the seven stages of man:
“All the world’s a stage and all the men and women merely players;
And one man in his time plays many parts,
His act being seven stages….”
Shakespeare defines those stages as that of the infant, the whining schoolboy, the lover, the soldier, the justice “full of wise saws”, the lean and slippered pantaloon, and concludes:
“Last scene of all that ends this strange eventful history
Is second childhood and mere oblivion,
Sans teeth, sans eyes, sans taste, sans everything.”
For me, until now, there were only two stages: before and after the heart attack. Before, the Alzheimer’s moved slowly; his concentration was not what it was, he needed to be prompted to do things and helped to execute some, but we had a life. Then, a year ago, he had a heart attack on the street, and was taken by ambulance to the hospital where he received excellent care. But he has never recovered from that hospital stay. His decline, both mental and physical accelerated after that. I am told that this is a common experience — that it is not a comment on the procedure (whatever it might be), or its success. It’s a variation on that old saw, “the operation was a success, but the patient died” – the hospitalization did what it was supposed to do, but it left the patient weaker and more disoriented. It is not the doctors, or the nurses, or the surgeries; it is the hospital experience itself, lights, noises, strange faces, voices, and the consciousness such an environment brings that life is, for all of us, in the balance.
From then until this week, we dealt with the yo yo progress of AD, plus the inevitable decline that is part of aging.
This week, exactly one year after that heart attack, we moved to a third and perhaps final stage in that process: My husband had a stroke. Decline is now the inevitable. Two weeks? Two months? Longer? No one, however skilled, can answer that. The body, the mind, the heart, they set their own timetable.
Throughout all this, I have found myself contemplating the mystery that is life. Heartbeat, pulse, breath, yes: those are the physical signs that life is present. But is it life? Or existence? Surely they are not the same. What do we mean when we speak of life? Recognition? Yes, recognition of self, of the senses. Responsiveness? Yes, an awareness of surroundings, taste, sensation, touch and above all, in the eyes, that light that says “I am not just a body. I am a unique human being. I am a soul.”
And perhaps, the recognition that I, too, am a unique human being, a soul, that I am still the wife who loves him. If he can give me that, as we near the end of our life together, I will be truly blessed.
Joan Sutton’s columns may also be read on The Huffington Post.
My thoughts and prayers are with you. This disease is so tragic. Humanity stolen an inch at a time.
Thank you for thinking of us. JSS