By Leslie Hill
Simon has avoided me since I arrived a day and a half ago but tonight he leans across the table towards me, his green eyes intent, abandons his meal after a couple of bites and pelts me with questions while I try to eat the dinner Sarah has made us.
‘Did you see much of your aunt and uncle when you lived in Scotland? Where did they live? When did you first meet them? How did they meet each other?’ Each question comes before I finish answering the one before. I’m not sure he actually hears my replies and I doubt he retains them. He isn’t retaining much these days, according to his wife.
I’ve come to Victoria to visit Sarah, partly to celebrate her seventy-sixth birthday, partly to see their dog, whom I adore, and mostly because she won’t leave Simon, who has been diagnosed with both frontal lobe dementia and Alzheimer’s. He’s eighty, just under six feet now, and physically a strong, healthy man. In contrast, Sarah is five feet and frail, with shaky balance, significant bone loss and erratic blood pressure. Simon doesn’t acknowledge any problem except memory loss, something he thinks is to be expected at eighty. But he’s beginning to resent Sarah’s intelligence, clarity and organization. It shows in resistance to her suggestions that he take his medication, change his clothes or sit down to a meal she’s cooked.
The three of us taught together in a Toronto high school in the ‘70s. Sarah and Simon fell in love during the 1976 teachers’ strike and married six months later. Forty-plus years ago now, a second marriage for both of them. Each came in with two children by a previous spouse. Sarah loved him then, his good looks, his deep voice, his easy laughter. I imagine she still does love the man she married. Unfortunately he’s all but gone.
Now they sleep in separate rooms. She sleeps badly and he thrashes about in his sleep, particularly if he’s been drinking. When I visit Sarah puts me in his room, puts him in hers and a mattress on a fold out couch in the computer room for herself. After dinner that first night she discovered that Simon had ‘tidied’ away the mattress and sheets. Simon has always been obsessively tidy, cleaning away a teapot before you turn to pour a second cup, that kind of thing. Only now he can’t remember where he puts things or where they belong. It shouldn’t be a problem finding a mattress, I think. I suggest a search but Sarah holds up a hand.
“Not now. Wait until he goes to sleep. He’s pissed off at me for asking about it. I have to tread carefully.”
I raise an eyebrow. She hesitates, then tells me. He’s hit her twice in the last six weeks. Not exactly deliberately, more a spontaneous reaction when he’s frustrated or startled. But he’s so much bigger that even a swat can cause damage. He accidentally knocked her down two months ago and she ended up with a cracked pelvis and a walker.
Now she sits down every time Simon comes into the room.
He eats very little of the meals Sarah cooks, prefers to load up on ice cream he brings home. He’s not supposed to drink alcohol but he does. For years it was discreet because Sarah’s first husband was an alcoholic; now he’s open, defiant, quite willing to drink alone. He’s still driving, goes out every day with the dog, though he won’t say where or for how long. She can live with it for now. But she’s afraid.
“He’s going to kill someone with that car at some point. I told the doctor he isn’t safe at the wheel. I don’t let him drive me. But no one wants to tell someone they can no longer drive. And he can still talk a good line, sound competent.” Now their social worker, who is mostly there to support Sarah, has written the doctor to say the licence has to be pulled. “But it’s obvious what will happen,” Sarah says. “He’ll take my car whether he’s got a licence or not.” If she gets in the way, she’s afraid she’ll get hurt. I haven’t asked her whether she’s prepared to call the police if he joyrides.
“I’m so glad you’re here,” she says. “I want the two of us to go out for dinner, play bridge, take the dog to the beach, laugh, have fun. Just forget for a little while. He’s better when you’re around.”
Maybe he is but I don’t want to imagine what ‘not better’ looks like. I’m disturbed by the way he alternately needles or ignores her now. Her patience is monumental. She feels she has no choice.
Can’t anyone help? I ask. What about the kids? But only one of their four children lives in B.C. and all of them found Simon difficult before his diagnosis. The social worker has suggested she bring in outside help. But Simon doesn’t yet need help physically and wouldn’t accept it; he can shower, dress, move around without difficulty. He’s been told his diagnosis but refuses to listen. As far as he’s concerned, he’s fine. This, too, is classic Simon. He’s never dealt with difficult or painful issues in all the years I’ve known him. He even walks out of sad movies. Sarah is the one who has smoothed over relationship difficulties in their blended families, dealt with money, house repairs, computer problems, the deaths of pets.
There’s no one person willing to take on Simon if Sarah can’t manage.
“I try not to think about the future,” she says. “ But I’m trapped. We’re both trapped.”
It’s so hard to witness. I wonder if I will come back. But she’s my oldest friend. How can I not?
The morning I leave, Simon and I stand at the living room window together admiring the garden. “It’s so much lovelier since you took out that laurel hedge in front of the window,” I say.
His brow furrows. “Did I? I don’t remember a hedge.”
“You did. Several years ago. It was a lot of work, you told me. Good thing I’m here to remind you what a hero you were.” For a moment we smile at each other, the way we used to.
When I’m back home, I go online to see what I can find out about dealing with dementia. The literature talks about the importance of planning with the patient, once the diagnosis is given. Well and good. But that effectiveness hinges on family caretakers, the availability of respite and the hope that the person with dementia is pleasant and cooperative. When the chief carer is frail and the demented person is in denial and prone to take anger and frustration out on the nearest person, the loving spouse can transform into the violent stranger all too easily.
And when there is no family? I have no partner, no children, no one to monitor or agonize over me. How I would react if I were told I faced dementia? Would I deny the diagnosis, like Simon, or would I have the courage to face it and take responsibility for myself? I want to think I have more courage than Simon but I’m not sure it’s true.
Canada’s recent end-of-life legislation does not permit people suffering from dementia to choose an early exit, regardless of what they wish at full capacity. I believe if someone is clear they’d rather be dead than deadwood, that option should be open. Without it, there’s only suicide. But I’m not sure I’d have the resolution.
I think of Simon and Sarah and myself and I’m afraid, for all three of us.
Copyright Hill 2020