Eldercare

CHAPTER ONE: THE DIAGNOSIS

It was March 2007 and my wife Clair and I had endured what seemed like an excruciating, unnecessarily long period of diagnostic frustration, awaiting some answers—any answers—to what was plaguing her. Brief lapses in memory. Losing her keys—but shoot, I’d done that myself more than once. Misinterpreting others’ actions and reactions. Mild disorganization such as leaving bedroom and bathroom lights on—I did that, too—and trying to bake a pizza in the microwave. But all of this was way out of character for the highly organized woman I had known and loved for more than twelve years.

Now the results of her visit to the neuropsychologist had been relayed to her neurologist, and we sat waiting for him to pass on the news.

“It’s TIAs, isn’t it?” the anxious physician within me asked hopefully. TIA stands for transient ischemic attack, which is a small, often temporary stroke.

The neurologist shook his head slowly but surely. Then he quietly explained that my wife had Alzheimer’s disease or, as he diplomatically shortened it, AD. Before we left his office, he wrote her a prescription for memantine, one of the four or five medications that help slow, though not stop, the progress of this relentlessly cruel and pitiless memory-killer. As we drove back to our home on Vancouver’s north shore, my wife began crying quietly.

“Do you want to share?” I asked at a stoplight.

“Well, you’ve been through this before,” she observed, referring to the cancer death of my first wife.

“Well, you have too, honey,” I said, a reminder that she had lost her first husband to pancreatic cancer. We were mostly quiet as we drove the rest of the way home, our private, probably overlapping thoughts, fears and fantasies swirling in our respective heads.

Clair was suffering from early-onset Alzheimer’s disease. It had first been symptomatic five years earlier, when she was only sixty-two, an age at which very few in the general population are so unfairly stricken. A gifted clinical psychologist, she had been in steady demand in those days to give workshops to counsellors and psychologists working in the field, professionals who wanted to take further instruction from someone with such an outstanding and deserved international reputation. But there had been little incidents that indicated all was not right with her: missed appointments, confusion over a passport renewal, misinterpretations of family and colleagues’ actions. On February 21, 2002, she had written in her journal:

“So much is happening that I can’t keep issues straight . . . Every one of these hiccups seems to take the stuffing out of me. And I am so tired . . . We took [grandson] William for the weekend . . . He kept us busy & David seemed annoyed/irritated that he was there . . . I was picking up black vibes from David [which] was not helping because amongst other things, as he saw it, no sex. But he was creating an unpleasant aura . . . Everything seems to be compounded by my forgetfulness—e.g., I asked Mary to pick up the signed passport application [at J’s clinic], and she did so—at least she went there but I had not yet taken it [there] . . . I try to stay/be organized but I have never felt so disorganized. Passport papers, insurance papers. This leads to much pain. Worrying if dementia is setting in. I need more time.”

After presenting a week-long workshop in London in July 2004, Clair emailed me, adding a very pleased note that her hostess “was thrilled with the card holder, in pewter and pearl, that I gave her . . . Actually, I forgot to give it to her [when I arrived] and found it in my suitcase when I packed this morning.” It was an innocent postscript, but it was a reminder that in a somewhat synchronous fashion we had both been pushing our respective fears and anxieties about her health into the background and continuing to love, appreciate and fully enjoy each other.

Then in late spring 2006 Clair returned to the United Kingdom to teach, and what happened during that trip would tell each of us that ours was going to be a more challenging marriage than either of us had imagined. In a message I received on June 4, she explained that she had told her friend and host about her health issues. “Because [she] was originally a speech therapist, she knew quite a bit about brain functioning. So we had a good chat. I am now very tired.” The next day she emailed me.

“It seems like forever since I saw you, made love with you, felt so safe with you. It was good that I had told [her hosts] about the problems I have been having . . . [because] this morning I have had total mind/memory blanks . . . It makes me feel sad to be so out of touch with myself . . . I am hoping this all has to do with jet lag. Please be assured that I am in good hands and that my friends are so very supportive. I plan to go for a walk this afternoon and maybe clear my head.”

On June 15 I received a phone call from Clair’s concerned hostess and colleague to say that Clair’s mind/memory blanks had increased. Afterwards I spoke with Clair, then emailed back to her hostess:

“Talked with Clair at about 0845 your time. She was understandably upset, reminded me her [reviews from workshop participants in Wales] were uniformly okay, all '5/5 except for two 4/5s!' but she did try to listen to my concerns. I think she will . . . cancel balance of her trip but am not sure. Faxing her MDs today.”

Three days later I heard back from Clair’s hostess:

“Dear David,

I would really appreciate the opportunity to talk to you about how Clair is doing and my concerns about her going to Greece and then later to Green Park. Could you get back to me as soon as possible with your number and when I could best catch you? It has been wonderful to spend time with Clair and we have had a great time together in Cambridge and in Wales. However, her difficulties are very marked—more than I think she is aware, although I know she is understandably very anxious and distressed about her challenges with short term memory and spatial/time awareness.

Hope to talk with you very soon.”

Clair’s trip to Greece was cancelled, and her teaching tour of Europe was cut short. She returned home to Canada frustrated. Like me, she was puzzled and anxious about this turn of events in her life, but she was also cooperative, eager to help us help her. We assured ourselves that things must be getting better, right? That we would discuss the problem tomorrow—or when it was quiet. Each of us in our own way was eager for answers, wanting to make sense of these pieces to our shared puzzle. Then in the spring of 2007 we received the answer we were dreading: Alzheimer’s disease.

A week or so after we received the verdict from the neurologist, Clair insisted we see the movie Away from Her, which had been adapted from an Alice Munro short story called “The Bear Came over the Mountain.” The film covers a time of transition in the lives of an Alzheimer’s-afflicted woman (played by Julie Christie) and her retired college professor husband (played by Gordon Pinsent) as they struggle together and separately with the themes of socialization, relationship possibilities and needs, sexuality, commitment, intimacy, loneliness and loyalty. The husband experiences an epiphany when the wife transfers her affections to another man, a wheelchair-bound mute who is a patient in the same care home. Clair and I laughed. We cried. Afterward we shared our feelings softly while savouring Indian food.

There were many challenges in the next phase of our marriage and our personal lives. For Clair, the greatest challenge was being forced to shut down her clinical practice; such a large part of her identity had centred around her work with clients and the knowledge that she was making a difference in their lives. As for me, I learned that I could make two types of mistakes in our daily to-and-fro and give-and-take. The first type was the anxious husband reaching out to help his wife when she neither needed nor wanted assistance. The second type was my missing opportunities to help when she genuinely needed me. Type one errors were more common and really teed her off. Type two errors were mercifully less frequent—or so she said.

I comforted her when she was having a bad day, feeling irritated or frustrated. Sometimes I felt cheered up myself, reassured and relieved in being there for her. Most days we enjoyed each other, sometimes hugely. Laughing. Fighting. Making up. Making love. Teasing and joking. Snuggling. Tasting her superb rhubarb crisp. Just as in the time before Alzheimer’s disease came into our lives, on our very best days we lived contentedly in the moment, in the here and now. And I was reminded of my grandmother, who would have told me, “Make hay while the sun shines!”

Learning about Alzheimer’s Disease

The seeds of the book you now hold in your hands were probably planted sometime around the day that my wife and I saw the movie Away from Her and then shared our thoughts and feelings over dinner. But so much more has happened to her and me—and us—since that day in 2007 about which I must now write. Perhaps if I had been a little less grief-stricken, in less emotional shock over losing Clair one teaspoonful at a time, I might have done some more mental or cognitive homework back then, maybe a little more reading about what she was likely experiencing. Since that time, however, I have learned much more about this disease.

I learned, for example, from the Global Voice on Dementia, sponsored online by Alzheimer’s Disease International, an international federation of the 75 Alzheimer associations around the world, that as of 2013 there were an estimated 44.4 million people with dementia worldwide, a number that is expected to increase to 75.6 million by 2030 and 135.5 million by 2050. There are 7.7 million new cases of dementia diagnosed each year, which means that a new case of dementia is diagnosed somewhere in the world every four seconds. According to the website, at present the cost of AD amounts to approximately 1 percent of the entire world’s gross domestic product, varying from 0.24 percent of GDP in low-income countries to 0.35 percent in low middle-income countries, 0.50 percent in high middle-income countries and 1.24 percent in high-income countries. This amount is divided between that provided by family members and that provided by care professionals within the community and in care facilities, as well as the direct costs of medical care.

Variable Factors in Dementia

Although the techniques for diagnosing Alzheimer’s disease have changed little over the years and are still imprecise, a diagnosis is valuable for both the patient and his/her family because a systematic assessment can eliminate other possible explanations for the symptoms a person is experiencing and the signs he/she is exhibiting. (It is useful here to note that symptoms are concerns, observations or complaints experienced by the patient him/herself, while signs are clues observed by family, friends or health care professionals. Thus, a headache is a symptom, not a sign, but memory loss to which a person is oblivious is a sign. An increased temperature that the person is aware of but that is also documented by a thermometer is both a sign and a symptom.) Recognizing early warnings and having them assessed by a family doctor are a critical first step toward diagnosis.

Warnings may include changes in memory; reasoning and judgement; speech, language and comprehension; mood and personality; and balance, gait and orientation. However, the Family Caregiver Alliance website points out that there are critical distinctions between reversible dementias and irreversible dementias. Reversible dementias result from metabolic abnormalities, endocrine imbalance, operable brain changes (hematomas, benign tumours or blood clots, for example), infections or reactions to (or interactions with) medications. Alzheimer’s disease is at the top of the list of irreversible dementias, but the list also includes Lewy body dementia, Creutzfeld-Jakob dementia, frontotemporal dementia and ischemic vascular dementia.

It is possible, however, for both competent family practitioners and specialists to confuse one of the treatable and reversible medical problems with a progressive dementia such as Alzheimer’s, and vice versa. Hypothyroidism, for example, can slow a person down and affect his/her thinking, sometimes in a manner mimicking dementia. Anemia in older people may affect not only their energy levels but also sometimes their thought processes and memory. There is also a category within psychiatry known as the pseudodementia of depression. In this situation, a deeply depressed older person may become bedridden and lethargic, with sometimes severe cognitive slippage and memory loss. Treating that person’s depression aggressively usually (although not always) results in a marked decrease in his/her depression-related cognitive and memory impairment.

While it still takes time to monitor each individual to be sure of a diagnosis, as diagnostic processes are refined and the mass of data collected in tests is analyzed, specialists are determining both more accurately and more quickly whether there is a problem, the severity of it and often the cause—or in some cases, the combination of causes. This determination helps to guide the treatment and care for the affected person and family. However, until there is a conclusive test for Alzheimer’s, doctors may continue to use the phrase probable Alzheimer’s disease.

Mild Cognitive Impairment

One step before the diagnosis of possible dementia, a doctor may refer to an individual’s recent memory slippage of uncertain origin as mild cognitive impairment, or MCI. The Mayo Clinic website describes MCI as a stage between the memory decline that can be expected with advancing age and the memory loss typical of dementia, but MCI may affect not only memory but also language and thought processing. People with this diagnosis may repeat questions, may have difficulty performing executive functions and may struggle with mastering new job skills or organizing events. They may not notice that their mental functions have slipped because the changes may be gradual and not pronounced enough to disrupt day-to-day activities to any marked degree, but family members and close friends will be aware of changes.

Mild cognitive impairment may be accompanied by depression, irritability and aggression, anxiety or apathy. It may also be associated with the patient’s risk of later progressing to dementia, but some people with mild cognitive impairment never get worse, and a few eventually get better.

Vascular Dementia

The second-most prevalent dementia after Alzheimer’s disease (with or without small strokes) is vascular dementia (also known as multi-infarct dementia), which accounts for up to 20 percent of all those diagnosed. Unlike Alzheimer’s disease, with its insidious onset, vascular dementia usually comes on suddenly as the result of stroke, when the blood vessels supplying oxygen to the brain become blocked or bleed, or both. Symptoms may include sudden confusion, disorientation, trouble speaking or understanding speech and loss of vision. Minor strokes, a series of transient ischemic attacks (TIAs, which raise the risk for more strokes) and other conditions that affect the smaller blood vessels may lead to cumulative brain damage, however. In such cases, cognitive symptoms may increase in a stair-step pattern; sometimes the person’s abilities may deteriorate for a while, then stabilize on a plateau before deteriorating again. The person may experience gradual thinking changes, such as impaired planning and judgement, declining ability to focus, difficulty finding words and impaired function in social situations. Suspected vascular dementia can be confirmed with brain scans.

Risk factors for vascular dementia include being older than sixty-five, having high blood pressure and having a history of heart disease or diabetes. Obesity, smoking and a family history of heart problems or high cholesterol levels are additional risks. There is strong evidence, however, that the outcome can improve for the person with vascular dementia if he/she adopts a healthier lifestyle with physician-approved physical activity and a healthier diet. Reducing stress and stopping smoking can also make a big difference, as can taking medications to control high blood pressure, heart disease and diabetes.

Many people whose dementia is referred to as Alzheimer’s disease also suffer from some form of vascular dementia, so that in addition to the changes in the brain that are typical of AD, the blood supply to the brain is compromised by one or more strokes. In fact, this combination of AD plus strokes is probably the most common form of dementia. That was true in Clair’s case.

Lewy Body Dementia

Lewy body dementia is the third-most common type of progressive dementia. It is caused by abnormal deposits of a protein called alpha-synuclein inside the nerve cells in areas of the brain that affect thinking, memory and movement; these deposits are called Lewy bodies after the scientist who first described them. This type of dementia is characterized by a progressive decline in memory, language and reasoning abilities and is often associated with hallucinations. It frequently overlaps with Parkinson’s disease, including the same kind of movement disorders typical of that disease, but people with Lewy bodies may also have the changes in their brains that are symptomatic of Alzheimer’s and experience the same kind of cognitive slippage, sleep difficulties, mood swings and wavering attention.

Risk factors for Lewy bodies are being male, older than sixty years, and having a family member also afflicted. Obviously, these are untreatable factors.

The Diagnosis

In most cases a complete medical and neuropsychological evaluation can determine whether the person has a cognitive problem, whether it is Alzheimer’s with vascular dementia (the most common presentation) or one of the other forms of dementia, and how severe it is. This will usually include the following steps.

1. A review of the patient’s history, including the onset of symptoms. This information can usually be provided by a family member.

2. A medical history and list of medications. This information will include conditions that might indicate a higher risk for a particular type of dementia or identify medications that may be contributing to cognitive problems.

3. A neurological exam. This step will help to identify symptoms indicative of particular kinds of dementia or other conditions—such as stroke or Parkinson’s disease—that could be increasing cognitive problems.

4. Laboratory tests to rule out vitamin deficiencies or metabolic conditions. Although not common, sometimes a simple vitamin deficiency, infection or hormone imbalance can cause cognitive symptoms.

5. A CT scan or an MRI. Brain imaging will evaluate the anatomy of the brain for conditions such as a stroke or a brain tumour that might be causing cognitive changes.

6. Mental status testing (also called cognitive or neuropsychological testing). These pencil-and-paper tests help evaluate the breadth and depth of many areas of thinking, including memory, language, problem-solving and judgement. Today the preferred screening tool is usually, although not always, the Mini-Mental Status Examination (MMSE). However, in a pilot study with a diabetic population that was being screened for mild cognitive impairment, the Montreal Cognitive Assessment test (MoCA) appeared to be a better screening tool than the MMSE.

It is widely agreed that early diagnosis of Alzheimer’s disease is important to the patient. Why? Clair and I soon learned that having the diagnosis could help her move forward and gain more control over her life by taking the necessary steps to live better with the disease. The Alzheimer Society of B.C. says that early diagnosis has many benefits for patients:

- provides time to adjust to the diagnosis;
- gives an opportunity to understand the symptoms they are experiencing and the changes they can expect;
- allows them to gain access to information, resources and support;
- enables them to benefit from and explore treatment options;
- lets them play an active role in planning for their future;
- encourages them to develop and engage support networks;
- helps them maximize their quality of life.

To this list I would add that early diagnosis can bring hope and clarity to those within the marriage or partnership and allow them to have more fun. And why not? Diagnosis is prognosis, an important glimpse into the future, its threats, challenges and promises, both the negative and the positive. When you have a diagnosis, both you and your partner may anticipate a dynamic combination of grief and relief.

While no two journeys through Alzheimer’s disease are alike, it may be helpful, as you find your way and make decisions for your afflicted partner, to learn how others have made the journey before you. When I asked my friend John why he had first decided to seek medical help for his wife, Nancy, he said,

“I guess I hadn’t noticed anything particularly different [about her], but on reflection I can see that there was this . . . building up. But what prompted [me to take her to a doctor] was two or three episodes with the car. She had her own car and she was a good driver, but she would get lost going to pick somebody up or going to somebody’s house for bridge. She’d get totally mixed up and lost. So at that point we went to our GP who was a pretty good friend as well . . . and he suggested there might be a problem. Her cholesterol was a little on the high side, so he thought she might have a vascular problem and suggested that I get her an MRI . . . and that didn’t show anything. So he gave her the MMSE test [Mini Mental State Examination] and realized that there was a problem there. And then we took her to a neurologist who confirmed everything and put her on Reminyl and referred her to the UBC Alzheimer Clinic, and since then we have been going there every six months . . . they’re very supportive.”

For Margaret, whose husband Donald recently died from AD-related complications, the Alzheimer’s diagnosis arrived like a thunderclap. He had headed up university departments, been seconded to the government to do policy work, sat on multiple boards and been headhunted to become the chief scientific officer for one of the largest technological companies in the country. When his behaviour began to change, Margaret phoned a friend at the University of BC’s Brain Centre:

“He’s the one who said I should bring him to the Alzheimer’s clinic and have him assessed. He suggested two doctors, but we had to be referred by our family physician. There was a complete mixup, and somehow the referral got lost. So I had to go back to our family doctor a month later and do it again. By then it was 2007 so we had wasted some time. Then we went for the appointment and they ordered a CAT scan, an MRI, etcetera—you know, the usual tests—and he was diagnosed with mild cognitive impairment, and the doctor told us that 50 percent of people who are diagnosed with MCI just go on for the rest of their lives with it. It doesn’t go away, but it doesn’t progress. The other 50 percent develop dementia of some type. But the following year when he went for tests, he was diagnosed with early-stage Alzheimer’s.”

When I asked Margaret if she and Donald had talked about the diagnosis over a drink or dinner at the time, she said,

“Do you know, I remember being in the room with him when Dr. H said to him, ‘Well, Donald, based on the tests I really think that you now have early-stage Alzheimer’s disease,’ and we both sat there, just stunned. It was just a feeling of . . . you almost felt like saying, ‘You’ve made a mistake, haven’t you?’ But I don’t remember . . . I think we talked about it when we came home, but it’s blanked out. And for quite a long time after that Donald would tell people that he had mild cognitive impairment. Which was fine with me. I wasn’t going to say, ‘No, you don’t! You have Alzheimer’s.’ You know, I thought he needs to be the one to come to terms with what this is.

“After that we did a clinical trial for a drug over a period of two years. It was an experimental drug and it was in Phase Two, so there was great hope because it had apparently reversed the effects of Alzheimer’s in the brains of mice. So obviously there was great hope that this was what was going to happen with people. And what’s interesting is that you know how, when you go into clinical trials, you don’t know if you’re on the drug or the placebo? Well, in my mind I was just certain that Donald was on the drug. I really did. I thought I saw an improvement. I think the mind projects things that you want, and I really thought that this was going to help him, that we could beat this like cancer or a broken arm. Well, it turned out that he was on the placebo and also that the clinical trial failed. My point is that it’s strange the way your mind sees things that you want to see. I wanted to see improvement so I thought I saw improvement . . . but no . . .

“Donald really didn’t talk too much about it. He enjoyed the process of being in the clinical trial because it gave him something to focus on, to enjoy being a scientist again . . . But he was very accepting all the way through. I mean, he was very gracious about it. I only saw him frustrated a few times and that was in the later stages when he was in the care facility . . . But really all the way through, he kept his scientific detachment. He could watch what was going on . . . He had a wonderful analogy, you know. He said his mind was like a glacier and great chunks of memory were just falling off and floating away. Calving. It’s a very powerful metaphor.”

Maureen, a retired insurance broker, has been married to Merv since 1993. The first change she noticed in her husband’s behaviour was his frustration with himself.

“He would get really upset because of something that he would normally remember, like taxes—he had been an accountant—and he wasn’t remembering. I think he was beginning to recognize that something was wrong and that frustrated him. And if I would say, ‘Merv, you need to do this,’ and if I didn’t remember to say, ‘Would you mind?’ or ‘I’d appreciate it if you would do this,’ he would get confrontational and then very angry. And I would say, ‘What are you angry about?’ and he would answer, ‘I’m angry at myself. I can’t stand it. I can’t do anything anymore. I can’t remember.’ Apparently he sensed the change more than I did. I noticed he was getting a little forgetful, but my goodness, we all get forgetful as we age. I took him to his doctor, and he said, ‘Well, he seems to have a little dementia, very mild, I guess.’ Merv didn’t want to hear that. He said, ‘Dementia? You mean I’m not all right?’ He got very, very upset the first time he heard those words. But after that conversation the doctor finally got through to him and put him on Aricept, but it didn’t do anything for him, so I took him off that. Then it just seemed to steamroll from there.”

Maureen’s daughter added:

“It went very fast. Just two years ago he was driving his own car and he could go to town on his own, never get lost. In the last two years the change has been just so dramatic. I guess everyone is different when it comes to this disease, but . . . well, he’s so healthy! I’m concerned that he will live to be so old and just be a vegetable.”

Maureen continued:

“You see, he’s never fallen, his legs are strong, he goes up and down steps. He’s healthy, his blood pressure is perfect, his heart is perfect. It’s heartbreaking. I said to him, ‘Well, Merv, if we could take your body and put my head on it, we’d be in great shape!’ [laughter] And he might laugh, too. He had a great sense of humour and he loves to laugh. Now he makes all kinds of strange, funny noises. Even out in public.”

Sometimes, of course, it is hard for a partner to recognize changes in behaviour as being the symptoms of dementia. After forty years of marriage, Graham was surprised when his wife, Yvonne, began acting strangely during a holiday in Mexico.

“This happened about three or four years before she was diagnosed. It was my brother’s house—a timeshare that he owned—and Yvonne and I had to sleep in the guest bedroom, and she went absolutely nuts that my brother and his wife would have the good bed and we had to sleep in the secondary bed . . . It was totally out of character. In hindsight it’s my guess that was the disease beginning.

“It was my sister-in-law who said, ‘You know, I’ve been reading about drugs that can assist in reducing the speed of whatever Yvonne might have, and so don’t you think you should be getting her to a doctor so we can find out what it is and start getting her some treatment?’ So I went to Yvonne with that argument. I’d been after her for at least two years before that, trying to get her to go to a doctor, and she just wouldn’t listen. ‘Stop trying to run this show,’ she said. ‘Stop trying to boss me around.’ But she finally agreed to go, and we went to our GP who suggested we see a geriatric psychiatrist. And as soon as she saw Yvonne, she just told her what she had. It was that obvious.

“I certainly was almost numb at the news. It’s one of those things that you don’t have any control over, you don’t want to hear. You don’t want to accept. Yvonne accepted it. The doctor told her she shouldn’t drive a car again, and she never did from that day. She never made a fuss about it, never argued about it. I’m sure she was very upset, but I wasn’t allowed to tell anybody, not even our family for ages and ages . . . And the few times that she found out that I had told somebody, she went crazy. I mean absolutely crazy. Like bizarre.”

Today as soon as signs of dementia appear, our first thought is Alzheimer’s disease. However, at least 20 percent of dementia patients are suffering from vascular dementia. For Sam, who had a very successful career as a logistics officer with the Royal Canadian Air Force, the process of diagnosing his dementia was very long, very slow and in the end inconclusive. When he died in early 2015 there was still no final diagnosis, although he appeared to be suffering from vascular dementia. His problems had begun many years earlier with a diagnosis of epilepsy. In an interview in 2014 his wife, Nora, said,

“We discovered that he had epilepsy about two years after we were married. He was an RCAF pilot at that time, but he was having nocturnal seizures, so he really didn’t know he was having them except that he didn’t feel well the next day. Then he had a really bad one, and I saw it and insisted he get tested. So the air force threw him out—they tend to do that in the military. If you’ve got anything wrong with you, you’re gone. But a couple of generals who knew and respected him went to bat for him; he had to change his trade to logistics, but he did very well and became a colonel.

“I don’t think he was drinking to excess when we got married, but in those days the military encouraged the mess life and drinking because the guys were moved every two years and drinking together was a tool to make the group cohesive. Of course, they lost quite a number of good young men that way—they got really drunk and got into their fast cars and wrote themselves off. Every time that happened the military was losing thousands of dollars in training, so they’re not doing so much of that anymore.”

After Sam retired from the air force, he took a job with a major railroad, and that kept him in the workforce for another five years. However, at sixty-five he was forced to retire, and he and Nora settled in Calgary.

“Sam wanted to do some physical work and he had worked on a farm when he was a kid, so for three or four months each summer over the next ten years we would go to a distant cousin’s ranch in central Saskatchewan and Sam would work on the harvest. He didn’t work the combines but he did everything else while I would teach little kids art and work with the cousin’s horses. And we were really happy up there, but then Sam began getting snarly. Yes, snarly is the only word for it. And he was starting to drink really heavily . . .

“I would say to my friends that he never should have retired because he was not handling it well. He didn’t have any recreational interests, and he was getting more and more upset about the way his life was going. I would go off by myself to visit our daughter or my sister and I wouldn’t want to come back because he was getting more and more morose. Then about seven or eight years ago he had a small stroke and ended up in emergency. He didn’t have any of the classic paralysis on one side or anything like that, but he couldn’t speak. They tested him and did all the brain-wave stuff, and he must have tested out all right, but in the past four or five years he has been having small seizures while he’s watching television, and he also has small absences . . . he doesn’t fall down or seizure muscularly, but he’s just not there . . . He’s just gone for maybe thirty seconds or sometimes less than that.

“His doctor thought he may have Parkinson’s because he was going downhill on things like balance, but they decided it wasn’t that. Then during the move from our old house last year he just shut totally down. He just sat in the living room of the old house with the debris all around him and sat there and sat there, and when a friend came looking for me, he stood up and fell over. So at that point people started listening to what I’d been saying. We went to the Alzheimer’s clinic at UBC, and Sam took all the tests, which showed there was dementia and memory loss, but I don’t think they knew what to do with him because he’s not a classic case. He does very well on their pencil-and-paper tests. He scores [way] above what he should be doing—which is called showboating. The last time we went, a very nice doctor gave him another one of those visual tests, and then came out to tell me that he had done better than on his last test, so he was making improvements. Yet just that morning he had been unable to identify a picture of his grandson who has Treacher-Collins syndrome—he looks a little like a duck—and that blew me away. And he wasn’t sure about identifying our other grandchildren either. So here he is supposedly doing better?”

As I look back on the diagnostic doldrum days in Clair’s and my own life, when it seemed as if we would never receive an answer to her worsening memory and organization problems, it seems clear that she and I had two fears: first, that we would not get a diagnosis, and second, that we would get a diagnosis. But how deadly, draconian and unacceptable would either development be to each of us, or to both of us? It’s also entirely possible that her excellent physicians and neuropsychologists were experiencing some inertia or conflict as they tried to establish a diagnosis and then treat a patient who had a PhD in psychology and whose husband was—and is—an MD psychiatrist (and an anxious one at that). In any case, the doctors came through, as did the neuropsychologist who tested Clair for her problems with recent memory, judgement and problem-solving skills. Courage and competence prevailed, as they did with Clair, whom I have long experienced as both a strong and brave woman.

Then we went further. We phoned around for a second opinion and consulted with a very competent neuropsychologist in Alberta. Her findings and diagnosis of AD mirrored those shared with us in Vancouver, which came as an anticlimax and a bit more grief in our cups. But during this process, we were also given more sunlight in our overlying journeys: the sunlight of diagnosis, of focus, of clarity and of knowing where we two would be going into our shared and separate futures. Together. And apart.

If you and I were talking today—and in a way, dear reader, we are—I would want to help you recognize and appreciate the courage and strength that live in the relationship that you and your partner have worked to share, develop and enjoy over the years. And I would remind you what Clair—as well as my first wife, Betsy—have taught me, modelled for me and reminded me of supportively so many times: courage is not the absence of fear as much as it is a person’s willingness and determination to push ahead in the face of fear. And with that reminder comes hope, both for the future and the present.