Travelling down the Alzheimer’s road is not a direct journey from point A to point B. It’s a tangle of back roads filled with twists, turns and valleys. In the valleys, there are mazes. The patient gets stuck in those mazes, sometimes for minutes or hours before they find an exit. Sometimes there is no exit, and that particular maze is one the patient is doomed to keep running around in, confused and frightened, until the time comes when they quit searching for a way out.
And if the patient is trying to find a way out, the caregiver is trying to find a way in—and in the early stages then out. Trying to understand, searching for a way to help the patient get back to a place where they’re the same competent, confident person they were before the disease started skewing the map in their brain, creating the tangled mazes and treacherous terrain. The caregivers get lost, too. And confused. And frightened.
In the earliest stages, before a diagnosis is made, neither person knows what’s going on. What they see and feel is ‘trouble’: trouble with communication, trouble with sharing tasks, trouble with following through with plans, and eventually trouble with trust.
On the patient’s side, frustration and resulting anger begin to take hold. They suddenly can’t do some task they’ve done many times, such as make sense of numbers and balance the cheque book; they suddenly can’t recall important things they’re supposed to do, such as attend a weekly staff meeting; they suddenly can’t come up with the steps they need to follow to make arrangements for a party they planned to give. They might try to cover up—lie about what went wrong, or why it went wrong; find a way to get someone else to do the task they no longer can do themselves. They might take on tasks they know they can’t do because they’re afraid to admit they can’t, or because they think they will be able to if they just try harder. They might even succeed at covering up for a while.
On the caregiver’s side, frustration and resulting anger begin to take hold, too. They don’t understand what’s changed, what’s going on. More and more of the ‘work’ of the relationship seems to be falling on them, without them ever having agreed to take on more. They might make assumptions as to why this is happening, such as that their partner is simply being bloody minded because he, or she, doesn’t want to do whatever they’ve forgotten to do, or have messed up.
Tempers on both sides might flare, and result in all kinds of hurt flying both ways.
Eventually though, it becomes clear to someone who lives with a person suffering from dementia that what’s happening is not that person’s fault. Something is wrong, very wrong, and needs to be fixed.
In our case, during Bill’s year as Executive Director of the Recreation Facilities Assoc. of B.C., I fully realized he was in trouble. I’d seen signs long before that, but didn’t know that was what they were: some forgetfulness, increasing difficulty with understanding the computer programs needed to complete the annual budget at work. Even household chores had begun to go wrong. Bill couldn’t seem to build a gate anymore (something he’d done plenty of in the past) or figure out what to do about an outbuilding that started to fall down.
But it was his lack of understanding about what was required of him in his new job that clinched it for me. When I asked him questions about the job, his answers were vague. When he went to the interior to get the office supplies from the former Director (and tutoring about the job), he came home several days before he was scheduled to come home, and he still wasn’t able to tell me what the job entailed, or even what was in the boxes of the supplies he brought home. That was not the Bill I knew.
All his working life he’d asked plenty of questions before he made decisions. He was a multi-tasker, able to handle staff, public and program demands and keep things on track (mostly). He was a planner, and action-oriented. He knew where he needed to be, what he needed to do, and how to do it, or how to get it done if he couldn’t do it himself. Perhaps most importantly, he knew what he could not do. But now, he’d taken on a job he knew little about, there were skills required to do the job he simply didn’t have, and he had no idea how to proceed to fill in those gaps, other than to rely on me to take up the slack.
I had a job of my own. At first, I was just surly about being pulled into his. But when I began to understand he really hadn’t understood what he was doing, that he no longer seemed to know what he didn’t know, that my anger turned to fear.
Long before the year-long contract was up, I told Bill that when it was up he could not reapply for the job. “After all,” I said, “I’ve got a job of my own. I don’t want to keep doing yours.” I began to talk to him about selling our 7-acre property. I didn’t tell him what I more than suspected by then. I said only that two houses, several outbuildings and 7-acres was getting to be too much for us to look after. I didn’t want to spend my life doing yard work and maintaining buildings. Thankfully, he agreed.
After the contract was finished and our house was on the market, I began to ask him questions about what he thought might be behind his difficulties with doing some of the things he had previously been able to do. And as we talked, Bill admitted he was worried, too. He wasn’t ready to admit there might be something wrong with his mind, but he was ready to admit he did think there was something wrong. He wasn’t ready to seek help though.
During a visit to our family doctor, I waited until he was headed toward the door before I could summon the courage to say, “Please. I have something more I need to talk about. Something important.” The words stuck in my throat. I had to swallow several times. “This is so hard.”
The doctor turned around and sat back down.
It took me a minute to get past the ache and say the rest. “I think Bill has Alzheimer’s.”
Our G.P.’s immediate reaction was to reassure me, to tell me not to worry—“Everyone forgets where they put their keys. It will be all right.” But, he also said he was going to refer us to a specialist. Which he did, immediately. I told Bill what I’d done, and he agreed to an appointment with the specialist.
It wasn’t long before I got a phone call and our first appointment with a Geriatric Psychologist was scheduled. He’d come to our house, he said. He wanted Bill to be comfortable in surroundings totally familiar to him, so anxiety would not have an impact on the results of the tests Bill would be given.
Sadly, the surroundings didn’t save us from the doctor’s conclusion that Bill did indeed have some sort of cognitive impairment, though he wasn’t sure what that impairment was, he said. He referred us to the Alzheimer’s Clinic at UBC.
At UBC, Bill underwent a marathon of tests that began at 9:00 a.m. and continued until 4:00 p.m. I was talked to by three doctors also. By day’s end, we were both ready for a padded cell. Please don’t wake us until spring.
The psychiatrist agreed with the doctor we’d seen at home. “Yes, there is definitely some kind of cognitive impairment,” he said. “But I can’t put a label on it, and I don’t want to give you (to Bill) any medication at this point.” He didn’t say what was next. The psychologist who’d talked to both of us that day, though, said we were ‘stuck with her for life’ and if we had any questions or concerns we should call her. In the following months, she would call us twice to ask how we were doing and ask if there was anything she could do for us. We had no answer to that except we were doing all right. Neither of us knew what kind of thing we should be asking her to do.
The psychiatrist in charge of Bill’s case left UBC, and the province, that year. It would take us three more trips to the clinic over a period of three years, seeing two different doctors, before a diagnosis of Alzheimer’s was finally declared, and we had any real understanding of what lay in store for us.