“Morning”. Always, every time, his first word.
Then the stumble, the squat, the reaching for a chair. Half dressed he appears now, no belt or socks, there are in hand, shirt untucked, pants open. He sits for a moment, “Boy… I’m dizzy this morning”, always comes next.
The trip to the bathroom when he has recovered, then coffee and meds, and porridge and TV news, and news paper, and crossword, always in pen.
“Going to look around the estate.” His walk around the house and yard, wide-brimmed Panama Jack straw hat on. He squats, every few feet, then looks to see if I am watching. Like a mother of a toddler, I try not to be alarmed at the stumbling steps. I wave and move on with the morning.
It takes a few seconds for my eyes to adjust when I enter.
Always the same, drapes and blinds closed. Allow nothing in! No air, no light, no life.
Sheets and bed covers pulled up straight, over the pillows up, cover it all up, no room for play, he has made the soft white feather down duvet look ridged with his stern bed making.
There is no comfort here. The air is still, and the odor unpalatable, clean-up a must.
I take the dirty clothes to the laundry room, strip the bed, open the drapes and blinds, let in light and air and life; it rushes in and fills the dark places.
Lemon pledge happy spray, wipe and wax clean. Vacuum away the tracks and stillness, spray and wipe the baseboards, Mrs. Meyer’s lavender all-purpose meets lemon and light, exhale. Better.
Sheets fresh bed made, clothes hung, whites away in drawers.
This I can do.
Melon and berries, half a ham and cheese with tomato and mustard, apple juice and something to crunch, call him in, for a simple lunch.
This I can do.
Find the channel, watch him sink into the chair, feet up, water and medicine down, sometimes he naps, sometimes not. Sometimes he just sits, waiting.
I know his favorite part of a chicken, the wings.
He says he doesn’t like sugar in his coffee, but if it is easier he says, “go ahead and put one tiny sugar in mine too, just like yours.”
He doesn’t like to ask for help. He will sit and watch nothing rather than ask for help in changing the channel.
He does not want a wheel chair, although he is house bound without one, he will not even talk about it, yet.
His vision is worse when he awakens in the morning and better as the day goes on.
He loves history, and the History Channel, and programmes which show men working, “a good days work”.
He forgets things, sometimes right after I tell him, he loves to putter in the yard, pulling wayward blades and weeds, and I know one other thing.
I know he is just waiting to die.
This I can not do.
Just waiting and watching, along with just shutting up, are not really my strong suits.
Griff started working at 14 on the British Rail, worked there for 19 years before coming to the United States and becoming a pole climbing, gaff wearing GTE lineman, then a cable line trench digging crewman, and finally hotel maintainance man; has always been an active guy.
A mans man, a stick- the- desk- job- up- your -ass, kinda fella.
He even went as far as turning down promotions that had even a slight odor of management, he preferred the crew, and camaraderie, the thrill of plain hard work.
While still in Florida, Griff and I were reading the paper on the patio, an article announced the rail system routes for a new proposed electric rail from Tampa to Orlando. Griff reads the article, lowers the paper, looks at me and says,
“I could get a job on this new rail, they will need men with rail experience…”
I nod. Silent.
Multiple System Atrophy, autonomic hypertension, parkinsonism symptoms, dementia, and age 73, but damn it, he could do it.
Have to admire his work ethic.
He is nothing if not a man who after working for almost 60 years, is still defined by the hard work he loves.
He is also defined by the things he doesn’t like, paperwork, writing, and generally doing anything with the finances, or educating himself about his illness and general physical decline. This other stuff was left to Hilda.
With her loss, he is left really non-functioning in these areas of his life. He is a man who doesn’t understand anything about what is happening to him on the most basic level, and so he sits, and tells me,
“This waiting to die, really sucks.”
He leaves the room.
This I can not do.
I think of the line from The Shawshank Redemption, but leave it alone.
After a while I knock on his door.
“Are you going to bed or what?”
“I was reading about my disease, my neck was sore and I wondered if it was because of my crouching tiger syndrome.”
He comes back into the living room.
“You shouldn’t look at a medical book that is 25 years old and produced my Readers Digest Griff, we have a computer ….I have a whole bunch of information on your illness printed out, do you want to see it?”
I get it and hand it to him.
The conversation is started, I ask him what he knows about his illness, which turns out is nothing other than the names, and the fact that the Doctors told him,
“There is nothing we can do for you”.
The web sites are few, the support groups sorely lacking in support, but a DVD is available I find on my search for information.
He watched the 30 minute infomercial about MSA, turned to me and said,
“I could relate to a lot of that”.
“Did you know I read that Johnny Cash had MSA?”
Then came the question…
“Did he die of it?”
I know he isn’t really asking me if Johnny Cash died of MSA. I know what he is really asking is Am I going to die of MSA?
I remember while in Florida before Hilda died, Jackie arrived and Griff grabbed my arm and said,
“Don’t tell her that her mother is dying.”
“The hospital bed is in the family room, hospice is in the picture, I have called her to come and you really don’t think she knows her mother is dying?” I asked.
Lets just say this side of the family is a little emotionally constipated at times. Over protective stick your head in the sand when it comes to emotional issues kinda constipated.
“Griff you know you have a debilitating progressive illness that will not stop. We don’t know what tomorrow will bring, but you have to decide what you want to do with today, just today, ok? ”
“He died of breathing complications I think, which can be a leading cause of fatality to those with your illness.”
“Oh” came his reply.
“But it also says most folks have issues with incontinence, and you don’t …”
“True, that’s true…I read that too!”
I look outside, see the wilt on the hydrangea bush.
“So do you think you think those plants in the pots need a drink or what?”
“I”ll get on that.”
“I’ll get the beers.”
I watch him shuffle off , and I get the beers knowing, at least today,
this I can do.