Diagnosis
At 9:15 a.m. a psychiatrist comes to meet us in the waiting room we were directed to when we arrived at the University of British Columbia Hospital Clinic for Alzheimer Disease and Related Disorders. He introduces himself as Dr. F and leads us down a maze of hallways to the Alzheimer’s Clinic, where he asks us to have a seat in that waiting room. Some months ago, we were referred here by the Gerontologist who came to our house to assess Bill and except that we know this is an all-day appointment, and I was told to bring a book, neither of us knows what to expect.
There are only two unoccupied chairs, and while Bill and I sit down Dr. F picks a folder off the reception desk and says a name. The man beside me stands and helps the woman on his other side to her feet. He leads her to the doctor, then comes back to sit beside me while Dr. F ushers the woman into a room just off the waiting room.
Bill grabs a magazine off a low table in front of us and starts to flip through it. I’m not in the mood to try to read.
This waiting room is an uncomfortable place. It’s painted the yucky green hospitals seem to love, and the paint is peeling. The chairs that line three long walls are too close-set. The other occupants all have gray hair. Neither Bill nor I are gray. I think we’re the youngest people here.
Then I notice some of the people are doing strange things, like smacking their lips continually, or humming tunelessly, or rocking back and forth. While we wait, other men wearing white coats come and call peoples’ names. There doesn’t seem to be a receptionist or doctors’ helper here. Individuals and couples get up and leave with the men. They disappear down a hallway.
About twenty minutes later, the door to the room Dr. F’s in opens and the woman starts to shuffle out. The doctor follows. She stops just past the doorway and laughs—a high- pitched, almost hysterical sound—then continues moving toward the man beside me. When she gets there, she turns around and he touches her arm so she moves sideways until she’s in front of the chair she vacated earlier. “Back up,” he says quietly. She takes a small step backward. “More,” he says, and she does. “Okay,” he says, and she sits.
Wow, I think, she trusts him completely.
Dr. F picks up another folder, and asks us to come in. The only furniture in the room is three chairs. The doctor explains what the day will look like for us. Bill will have a number of tests and I’ll mostly wait. While he’s talking, a woman comes in. Dr. F introduces her, but I don’t catch the name. He tells us she’s going to take Bill now and I can go back to the first waiting room for the time being.
Bill follows the woman out the door.
Back out in the waiting room, Dr. F picks up another file and calls another name. I head off.
This place is like a rabbit warren. A bunker of tunnels and burrows. So many hallways, so many turns. Miraculously, I wind up in the right place, where I read my book for almost three more hours before the woman who led Bill away comes to get me.
She leads me through another maze of corridors to her office. It contains a wooden desk that almost fills the space, and two chairs. She sits and tells me she’s the Social Worker. “You and Bill are mine,” she says. “You’re stuck with me for life.”
I’m not sure how to take that, so I laugh.
She tells me Bill is very intelligent (which I already know), and asks if I have questions. I reply that it’s all too new for me to have many questions.
“Does Bill have angry outbursts?” she wants to know.
“Sometimes.”
“Is he a drinker?”
That strikes me as vaguely insulting. I can’t imagine what Bill might have said that would make her ask that question. “He drinks alcohol socially and he sometimes has a beer or two at home, but he’s not what I’d call a drinker,” I say.
“Does he have trouble finding words?” she asks.
I can’t remember him ever stumbling over words. “No. He’s very articulate. Why?”
“People with frontotemporal dementia often have trouble with language,” she says.
She doesn’t say more about it, and I assume that’s the kind of dementia they’ve decided Bill has. I’m about to ask what it is, exactly, and what it means for him, but before I can she says, “Let’s talk about you. How are you doing? Are you having any problems?”
I think for a minute about what she said about angry outbursts. I have angry outbursts and I don’t think I’ve got dementia. “I get mad just like he does,” I reply. “When he snaps, I snap back. Or I might be trying to help him with something and he argues and my back goes up. Then it’s like…” I punch the knuckles of my folded fists together with a smack.
“You can’t argue with someone with dementia,” she says.
“It’s not like he doesn’t understand,” I say. “Neither of us likes it if the other is making a mess of something and we try to help and get rebuffed. So what do I do?”
“You just have to smile and agree with him. Or walk away and come back to it later. Or let it go.”
That doesn’t seem right. I know Bill is perfectly capable of discussing things, or arguing. But I picture our house two weeks ago. Us, painting the living room and hall of the rancher we’d recently bought. Me spending two days going up and down the ladder, redoing all the cutting in he missed where the walls meet the ceiling, and scraping paint globs off the wall. I’d tried to correct him several times, then swore under my breath—at him and at myself—and sent him outside to prune bushes. I swore again the following day when I was so stiff I could barely walk. Rheumatoid and osteo arthritis don’t like ladders much. I was angry I’d let him muddle along for so long before I’d sent him outside. Angrier still that I now had to do major projects like that alone when physically he’s healthier and far fitter than I am. We’d painted lots of rooms and whole buildings together before. It used to work so well. It wasn’t fair.
“You’re talking about patience,” I say to the Social Worker. “I was not born a patient person. That’s going to be hard.”
She laughs, but I don’t mean it as a joke.
“Well,” she says, “if there are any problems just call me. Anytime, night or day.”
I am returned to the waiting room and Bill joins me. It’s 1:00 p.m. and we have an hour for lunch. His tests will resume at 2:00 o’clock. We find our way to the cafeteria and order soup. Bill looks as done in as I feel.
“I don’t think I’m doing too well on these tests,” he says.
“You’re probably doing a lot better than you think,” I tell him. “The Social Worker has already told me how intelligent you are. Either that or you charmed her into thinking you’re smart.”
He smiles at that.
Between 2:00 and 3:45 p.m. I read some more while Bill is elsewhere. Then the Social Worker reappears, takes me to Dr. F’s office and leaves. Bill isn’t here.
Dr. F tells me Bill does have cognitive impairment. “But it’s not Alzheimer’s yet,” he says. “There are calcium deposits in his brain and there’s a fifty percent chance it could turn into Alzheimer’s. There’s also a decline in his kidney function but we don’t know the reason for that.”
He asks me if Bill has exhibited any inappropriate behaviors, such as laughing or crying for no apparent reason, or taking his clothes off in public.
I bite my lip. Please God, I say silently, tell me Bill isn’t going to get like that.
Out loud, I answer the question. “No, he hasn’t done any of that. The Social Worker mentioned something called frontotemporal dementia. Is that what Bill has? Is that what people with it do?”
“I don’t think that’s Bill’s problem,” Dr. F says. “The real problem right now is that someone like Bill could easily fall through the cracks in the system because he isn’t bad enough for anyone to take it too seriously, but he is bad enough for it to cause problems in his life. I’ll put him on a drug called Aricept. It’s an enzyme blocker that works by restoring the balance of natural substances (neurotransmitters) in the brain. In other words, it’s supposed to help people use everything they have left to the maximum. Some people have said it helped them. It might help Bill, or it might not.”
He writes a prescription and hands it to me.
Bill returns with the Social Worker then, and she and Dr. F shake our hands and wish us luck. We’re left to find our own way out of the building.
Outside, I realize we’ve come out a different door than we went in. I don’t know which direction the car is in. Neither does Bill. I’m panicking. We have a ferry to catch back to Vancouver Island and Bill has always been the one who knows which way to go.
“Well,” I say, “we need to stretch our legs before we get back in the car. So I guess we’ll just keep walking around to the parking lots. How many can there be? Sooner or later we’ll find the right one.”
I spot the university bookstore and we go in. The clerk asks me which lot we’re parked in, and I remember there was a sign at the entrance to the lot, but I can’t recall what the sign said. About now I think maybe I’ve got the same problem Bill has. “Good thing we’re not in a hurry,” I say, trying to laugh. Not very successfully. We get a map of the entire campus as well as a map of the city.
We walk to three different lots before we find the car. There’s nothing I yearn for more right now than to be back on the island, safely on our way home. Bill looks limp with exhaustion. “I’ll drive,” I say, praying I don’t lose direction again because he can’t read a map anymore and we don’t have a GPS.
By the time we’re on the ferry, I’m too tired to eat, and while Bill does I reassess. He has some sort of problem but no one seems to know just what it is. There’s a 50% chance it won’t become Alzheimer’s. Calcium deposits in his brain is a visible physical defect but the doctor didn’t give any indication that was even treatable. The medication might help, and it might not. By the time we get home, I’ve convinced myself it’s stress, and Bill can recover from that.
I ask him what he thought of the visit to UBC. “I don’t know. I like the doctor,” he says, then changes the subject. “I wish I had a job. But who’d hire me now?”
He’s right.
*****
Two years earlier, he’d retired from his job as Manager of Strathcona Gardens. In that job, he had over eighty staff, multiple levels of bosses, the public, a multi-million-dollar budget, and everything else that went with managing a large facility to deal with. But he was a diplomat. He approached everything in a logical way, and for 24 of the 26 years he worked there he’d loved his job. However, although he didn’t know it then, the onset of his illness caused him problems that led to his retirement.
When he retired from the Gardens, he applied for and got a job as the Executive Director of the Recreation Facilities Association of B.C. (RFABC). He’d done the job before, filling in for six months when one of the previous Directors had unexpectedly left. But he’d had his staff at the Gardens then, and he’d delegated a lot of the work to them.
He told me about the job a week before he was leaving for Oliver to spend a week with the previous Director to learn it. When he arrived home from Oliver with stacks of boxes filled with papers and CDs, he dropped the boxes in my office.
I pulled out some CDs. “What are these?”
“I dunno,” he said.
I pulled out copies of a slick newsletter done in magazine style. “And this?”
“That’s the newsletter. It goes out quarterly to the members. It’s one of the major parts of the job.”
“You don’t know how to put that together.”
“No, but you do.”
“What did you tell the people who hired you?”
“I said my wife would do that.”
“Huh. Nice that you have confidence in the wife. Trouble is, you didn’t ask her.”
“So will you?”
I sighed.
Bill was still very capable of talking to RFABC members and potential members about the organization and its programs. He could arrange the ice-making courses and pool maintenance courses he needed to organize, hire the people to run them in various communities, and make sure they ran as scheduled. He could also persuade advertisers to take out full-page, half-page, and business-card-size ads in the magazine. But he couldn’t keep on top of membership lists, and if advertisers didn’t have a fully-developed design and ad, he couldn’t create them. Neither could I. Steep learning curve number one for me. He could find articles to reprint, but couldn’t write or edit new content. Curve two: learn what was going on in the recreation world and write about it.
What was supposed to be a part-time job for one person turned into more than a full-time job for two (with one of us unpaid for our work). The contract was for one year.
“Bill,” I said a month before the contract ended, “when this contract is up, you are not allowed to re-apply. I am not doing this job again.”
His turn to sigh.
*****
All of that comes flooding back as I consider his lament: But who’d hire me now. “You went to work every day for over thirty years,” I say. “You volunteer with Greenways Land Trust and MARS (the Mountainaire Avian Rescue Society). I think you need to spend more time doing things you really like to do, like golfing, hiking, fishing, canoeing, carving. And maybe we should take some vacations. I know there are places you want to go.”
He says yes.
I suggest he phone a friend on Quadra who likes to play golf.
A few minutes later, I hear him on the phone. His voice seems lighter, and when he hangs up he says, “Graeme says he’d love to go golfing. We made a date to go this week.”
It’s a start, I think. And I tell myself again, his problem is just stress. When he doesn’t have anything to worry about, he’ll be back to his old self.
THREE
Diagnosis Two
Our third appointment at UBC has come. The psychiatrist who took over Bill’s case last year because Dr. F moved to the United States tells me the diagnosis is now changed to early onset Alzheimer’s.
Since our first appointment three years ago, I’ve done a lot of research on dementia. Like Cancer, Dementia has myriad forms. Alzheimer’s is just one of 120 different types that have been identified. It’s one of the four best known types, but even labelled as ‘best known’ nothing much is known about it. I ask the psychiatrist why Bill’s diagnosis is now that.
“We’ve ruled out everything else,” he says. Then he shows me the picture of the clock Bill drew. There is a sort of circle with some random numbers in random places inside the circle. That surprises me.
One of Bill’s activities is carving. He’s carved dozens of 3-D folk figures, animals and birds out of blocks of wood. Some with intricate details like goatees that draw to a thin point and wings that are honed to the finest degree. Also, he wears an analog watch, which he looks at a lot. But he can’t draw a clock?
The doctor interrupts my thoughts. “Are you having any trouble handling him?”
“Sorry? What do you mean?”
“I mean keeping track of him, that sort of thing.”
“No. When he’s home he barely leaves my side except when he’s in his shop. He likes to walk and a couple of days a week goes down the hill to play pool at a hall that’s just a few blocks away, but he lets me know when he’s going and he’s always made it home.”
“So how do you think he’s doing?” the doctor asks.
“He has incredible determination. He does everything he can to keep himself active. But he has horrible nightmares. Sometimes he yells in his sleep and I have to rub his back for a long time before he calms down. He also gets terrible cramps in his thighs. I know how to ease cramps, but it hurts him a lot. And his nose runs non-stop. I’ve read those are side effects of Aricept. I don’t know if Aricept is helping him because I’d have to take him off it to know what he’s like without it.”
The doctor agrees. “Lots of patients experience those effects. It isn’t worth it. I’ll change the prescription.” He writes ‘Ebixa’ on the paper he hands me.
“What is that?”
“Memantine. It belongs to the group of medications known as NMDA receptor antagonists. It works in the brain to block the effect of some chemicals that cause symptoms of Alzheimer’s disease such as decreased memory and other mental functions. It might, or might not, work for Bill.”
I know perfectly well from my reading nothing has shown it alters the course of Alzheimer’s. Some friends keep sending suggestions of things they think might help, too. Alternatives based on wishful thinking. The latest is coconut oil, which was touted in a YouTube video by a doctor whose husband had dementia. It hasn’t done anything for Bill. I’ve stopped chasing those rainbows. But I remind myself that patients with any disease react differently to different drugs. If this is the best medicine has to offer, I’ll give it to him and hope.
“And how are you coping?” the doctor asks.
“Uhm, I need to talk to the social worker.”
“She’s not here.”
I inhale sharply. The appointment was set a full year ago, and I’d waited all day to talk to her. No one had said she wasn’t here. Last year I hadn’t gotten to see a social worker either, because the first one—the one who’d said Bill and I were hers for life—was gone and they hadn’t hired another one yet. I want to cry. “Excuse me?”
“She’s at a conference,” he says. “She called you on Friday to tell you she had to cancel your appointment.”
“Oh. We left home on Thursday. We wanted to spend a couple of days at the PNE having some fun. I didn’t get the message.”
“So how are you coping?” he asks again.
I let him have it all. “When he’s not in his shop, Bill hovers over me. When I’m trying to work, he’ll interrupt me every few minutes with some question I’ve answered a dozen times. I’ve been getting more and more irritated by it. Also, I’m not getting much sleep. When he worked, he got up at five-thirty. He still does. I’m a night hawk and have always stayed up late but now he waits for me to go to bed with him and I go a lot earlier than I used to, but I don’t sleep. He’s not quiet when he gets up, so I’m up, too. I’m very tired most of the time.”
I can hear the pathetic whine in my voice and want to stop, but can’t. “And that’s not helped by me having to think about and plan every single detail of every day. I used to say it took both of us to make one complete person. Now there’s only one of me trying to think for two, and sometimes I can barely think for myself,” I finish lamely.
He’s silent for several seconds, then says, “There’s a new trial for a new drug that’s going to start soon. Bill might qualify to participate. If he was accepted, you would have to come to Vancouver every week—sometimes twice a week. What do you want to do?”
I feel my shoulders droop. “I’d have to talk to Bill about it,” I say.
“We’d like a full family history,” the doctor says. “As complete as you can make it.”
“It took me a year just to persuade him we had to tell our kids about this illness. He’s still not ready to let the rest of his family know. If I contact the relatives, it has to be with his okay.”
“Can you do it?”
“I don’t know. Is Alzheimer’s hereditary?” I ask because I haven’t seen any information that indicates it is.
“We’re just compiling as much information as we can,” he says.
Bill arrives from somewhere with an escort then and the doctor asks him if he has any questions. Bill says no, and the visit is over.
It sinks in fully then that we’re in this for the long haul, and I think our trips to Vancouver are a waste of our time.
*****
At home, I check the Alzheimer Society’s website again. The advice given there is for caregivers to take care of ourselves. Exercise, maintain social contacts, eat well and get plenty of rest—things that are prescribed for everyone in general for a healthy lifestyle. Bill does all of that. I try to do the same for myself, but I am lagging far behind in a few of those categories, and my never-strong patience quotient is getting thinner and thinner. I’m aware I’m not a robot—programmed to always be upbeat—but there are times I wish I was. Then maybe I wouldn’t say mean things to him like, “It’s right in front of you. Just open your eyes and look for Gawd’s sake.” (Later, I will remind myself women were the gatherers. We’re hard-wired to look closely at what’s around us. Men were the hunters. They had to stare off into the distance and never really learned to look at their own feet. Later still, I’ll learn about the shrinking vision of patients with dementia.) Or, “I already answered that. Can’t you remember?” Of course he can’t. If he could, he wouldn’t ask.
I tell Bill about the research and ask him if he thinks he wants to participate. I feel like a hypocrite because I’m hoping with everything I have he’ll say no to the experiment. Even if he is accepted, there’s no guarantee he’ll actually get the experimental drug and no guarantee it will work if he does get it. And I do not want to have to go back to UBC every week.
Perhaps he picks up on my vibe. He says no. Silently, I sigh with thanks.