AN ALTERNATE WORLD OF ALZHEIMERS
It is a world without winners, in which both patient and caregiver live in a world that seems familiar. The world of dementia can be one of sadness, anger and sometimes, when you need it the most, a moment of shared laughter.
Then, slowly, day by day, even hour by hour, the familiar turns to a new reality. At times Bill and I, we roll along, making coffee, shopping, talking about the news, walking Judy, our dear Cavalier King Charles Spaniel, bathing Judy and planning the next day.
Then, a friend comes by and we discuss another friend’s news. Bill looks at us, states, ‘I didn’t know that.” That news being a subject discussed three times in the last day. Or, I learn through calling about a repair, that it was scheduled and I wasn’t told. Nor did Bill remember talking to the tree guy.
In the middle of writing this – I have to take time when I can get it – I have this round the clock job – I find a TV special called – Last Days. I am reminded, schooled by an 19 year old with Cystic Fibrosis that this day, no, this moment is all that we really have. This documentary is about death and how the different subjects take it on. I do know that no video is going to go deep into the heart of each person who knows that they cannot survive their diagnosis. Given that this is only a forty minute window into their lives, it has
depth and substance. One young woman, only 19, points out – forcefully – that none of us know the hour of our departure. All that matters is how we deal with right now.
And dealing with life and the deterioration of quality of life is a task most of us will face. Unless, we are really lucky and have a massive stroke or die in our sleep.
Neither Bill nor I are going to get a merit badge for patience. Bill was a great teacher, able to look at a subject and make it fascinating. I have a hard time teaching anyone to make a decent cup of coffee.
We worked together for nearly 40 years, sharing the tasks so that each of us did what we were best suited to do. This was not without strife but here we are, still dealing with the cards we have been dealt. Neither of us have a lot of patience. We have been quick thinkers, fast to react and always ready for a new idea. Now, I am seeing my lack of patience and I don’t like the loss of energy that seems to come with age.
Bill is missing his autonomy. I hope this isn’t sexist but I think men have more trouble when they have to adapt to changing health. All I can think is that when he loses more cognitive function I hope that he will forget what he is missing.
I miss spontaneity. In a way, it is like having a small child. A parent quickly learns that they cannot just grab the car keys and go. There is the nap time, meal time, the paraphernalia that accompanies mothers and their babies.
Now, it is the planning, the realization that a planned outing may not happen if one of us doesn’t have the energy or too many aches and pains on that day. And there is a sameness to each day. I remind myself that I have had a good life, a long life and if I am impatient, bored, frustrated that it is up to me to change my attitude. I am working on meditation, on patience, on making the moment what matters, not the future.
All any of us will have left at the end of life is how we managed, how we practiced kindness and above all patience because as Rilke said, “patience is everything.”