I began grieving for Jack almost ten years ago, when the first tell-tell signs of his disease first showed themselves. We lived then on the edge of the jungle, a twenty minute walk to the beach and a five minute stroll to the river where, in the dry season, I waded into waters which did in fact occasionally house crocodiles. This was in the country of Panama. If you’ve read Clueless Gringos in Paradise, you know how we got there.
Relocation therapy is what the counselors call it.
Jack always said, “Every five years I change jobs, locations, or wives. Often all three.”
I’ve been with Jack for almost thirty years now.
“I messed up,” he’d tell people, “went out on permanent disability from my job, and this wife just moves with me when I relocate. I can’t get rid of her.”
He was kidding. Partly kidding.
Where was I going with this? I’m not quite myself right now, am at that stage where I have a check list before I leave the house. Keys? Purse? Dog inside and safe? Hair combed? Shoes on my feet? Yesterday morning I carefully swallowed my Tuesday morning pills, made my tea, let the dog out. After which, I slowly and with great pride in how I was remembering to take care of myself, took my Tuesday evening pills as well. When talking to friends I realize, usually just as I’m finishing the story, that just two minutes ago I told them the exact same thing.
I remember where I was going with the Panama story.
Because Jack’s Progressive Supranuclear Palsy has, as he himself says, “eaten away at him one piece at a time,” my grieving process has been long and slow. In Panama, when Jack suddenly lost his sense of direction and when his PTSD rages became more and more frequent, I was convinced we needed to get back to the states and VA medical care as quickly as possible. During our five years in Arkansas I often pulled the car over and cried, grieved for the husband who was disappearing before my eyes. Those were the years when Jack fell more and more, became increasingly irrational and jealous, demanded more and more attention from me as he became less and less able to get out and do things on his own. Arkansas is where, after a series of accidents, he stopped driving, gave up his license.
We’ve been back in my hometown of Eureka, in northern California, for about two and a half years. During this time, he has gone from walking unaided, to using a walker, to a wheelchair. At first he was somewhat mobile in the chair, able to get himself from room to room. Then he was not. The VA got him an attendee operated power chair. I, of course, was the attendee. He could not move one inch in that chair without my help.
He developed double-vision. Then his sight began to slip away. His tremors, at first controlled by dopamine that can be so effective in Parkinsons, came back. With a vengeance. He had more and more trouble feeding himself. We went to finger food, then smoothies. Now he is being fed a spoonful at a time by helpers who never pay enough attention to make him happy, who feed too fast or too slow, or can’t understand that that particular grunt means applesauce and not minced turkey. His speech is slurred to the point where communication is difficult at best. It takes two people, two strong-backed people, to move him from bed to chair.
As he lost more and more control, more and more physical and mental ability, I grieved. There came a point, about six months ago, when his day-to-day care was simply so exhausting, when he became so demanding and unable to understand that I could only do so much, when his talk of moving to Asia and his inability to accept the reality of his situation – of our situation – simply overwhelmed me. He fell into me. Accused me daily of cheating on him. Yelled at me because I had it so much better than he had it. Then, at the end of days when it seemed I could do nothing right for him, every night, when I put him to bed, he said, “Thank you for everything you did for me today. I love you.”
And this was the worst moment of my day. I came to hate those rout words.
“Don’t you dare say you love me,” I wanted to shout at him. “Love isn’t words. Love is fucking action. It’s not demanding something every single time my butt hits my recliner. It’s not accusing me of cheating on you every single damn time I’m out of your sight. It’s not throwing your plate across the table because the bacon is too crisp.”
Every night I said, “I love you, too. See you when I see you.”
Every day ended in anger.
In about an hour, I am meeting the hospital discharge social worker. We will walk into Jack’s hospital room and tell him that a VA ambulance is picking him up at 1:00 today to transport him first to the neurology ward of the San Francisco VA hospital, and then to the Long Term Care facility next door. San Francisco is almost three hundred miles from me. He’s been in our local hospital for fifteen days.
It turns out that anger, exhaustion, and a tight daily schedule do a pretty good job of burying grief. I’m learning that when that combination is taken away, that same grief, long buried, blooms full-blown into the soul.