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“We do not remember days; we remember moments.”

Cesare Pavese

Most stories begin at the beginning, but for this story, it is more appropriate to begin at the end. It was June 20, 2004, and the last day I saw my father alive. This was a Sunday and one of my usual days to visit Dad who, at that time, had advanced Alzheimer’s Disease (AD) and was living in a secured long-term care facility.

A “secured” facility is necessary for those with AD because they are prone to wandering away and getting lost easily. These facilities are not like jail cells; sunlight can stream in through large windows, budgies can chirp from a cage in a corner, and residents remain free to roam throughout the available space and are encouraged to do so. Elevators, however, can be security coded and exit doors can be camouflaged with painted wall murals. While you or I would be able to tap in a few digits or find the colourfully painted doorknob to easily exit the building, such restrictions can be enough to confuse an individual with AD.

The condition attacks the human brain and steals precious memories — careers, friends, and even family members are forgotten. In the early stages of Alzheimer’s disease, a person can become increasingly absent-minded. Keys are misplaced more often, questions are repeatedly asked, and shopping lists become more relied on. During the middle and late stages of AD, a person can also forget the current day of the week, important news headlines from the past, and even his or her own birthday. My father, in the early stages of his disease, once overlooked my mother’s birthday. Although I reminded him in time, he was quite distraught when he realized he’d forgotten.

Individuals with AD will also decline physically; too weak to stand, those stricken will often end up in wheelchairs. AD also affects a person’s behaviours and speaking abilities. In my father’s situation, he could eventually only mumble incoherently, if he spoke at all.

The aforementioned wandering also occurs in the mid-to-late stages of Alzheimer’s disease. This could be due to individual restlessness, a desire to exercise, or a misunderstanding of the facts (e.g., a person with AD may believe that he or she can visit a long-time friend, when that friend has been dead for many years). Wandering, as an action, is harmless enough; however, when one lacks direction or cognitive abilities, it can become very dangerous. More than ever, local police detachments are frequently called by frenzied family members asking for help in finding a lost parent. More recently, Good Samaritans have begun stepping forward to help with locating missing relatives. It is alarming to think that a senior, wearing nothing but a nightgown, may escape from secured premises to be gone for days and at the mercy of weather conditions and other outdoor factors.

A further disturbing symptom associated with AD is “sundowning.” This occurs between the mid-to-late stages of AD. The confused senior cannot distinguish between daytime and nighttime. This can cause havoc with his or her sleeping patterns. Should this senior be living with a spouse or family caregiver, there will be unpleasant spin-off effects: For instance, a wandering senior may keep others awake.

While many perceive AD and dementia as identical, Alzheimer’s disease is, in fact, just one type of dementia. Other examples of dementia include vascular dementia and Pick’s disease. Strokes can also cause dementia due to cognitive damage to the brain.

My ritual each Sunday included arriving at the facility and searching for Dad. He could be anywhere on the third floor — lounging in an armchair, sitting in the dining room, or sleeping in another resident’s bed. The care staff on duty was always very helpful in locating him for me. Dad was a little unsteady on his feet and didn’t even recognize me as his own son by that point, so there was precious little I could do with him. If he was sleeping, I would often let him sleep. It seemed frightfully selfish on my part to wake him up when he was obviously tired.

If Dad was awake, one of my favourite activities was to take his arm and walk with him. Dad had always enjoyed long walks and vigourous hikes so he always seemed more than willing to stroll up and down the extended hallways of the facility. On warmer summer days, I liked taking Dad outside in the facility’s backyard. It wouldn’t matter how many times we looped around the same sidewalk because it was always new territory for Dad.

In the winter, we remained inside the building and made for an odd couple — with me wearing my winter snow boots and Dad often shuffling along in his bedroom slippers. This sight always made the nurses smile and chuckle. When Dad was tired, I would read to him: Dad, a retired University English professor, loved the written word. In earlier years, Dad would commonly read some of his favourite titles to my siblings and I before bedtime. We were introduced to the likes of Mark Twain, Farley Mowat, Lewis Carroll, and Charles Dickens.

Now, I read to him — reintroducing him to the same authors he had once introduced to me. Given the choice, though, I would often choose to keep Dad moving rather than sitting idly on those Sundays.

Note that exercise is good for the body at any age. Without continued movement, the body will stiffen and weaken; older and brittle bones break more easily. When Dad was inactive, I was concerned he would not be as strong and flexible, or as able to heal or fight off infections.

My older sister and her two children would join Dad and I within an hour of my arrival. Together, we would have dinner. Our regular treat for Dad was to bring in take-out food; whether this was pizza or Chinese food, it provided a change from the standard nursing home menu.

June 20, 2004 was a double celebration because we were marking both Father’s Day and Dad’s 75th birthday. In his honour, we brought in seafood and chocolate cake — two of my father’s favourites. Dad seemed to be in good spirits that night with a healthy appetite — he even drank a beer!

After the celebration we accompanied Dad back to his room. I hugged him goodbye — his somewhat musty, wool, button-up sweater tickled my face and Dad grunted his approval. How was I to know that this would be the last hug I would ever give to my father? If I had known, I would have squeezed him tighter and not released my grip as quickly.

My telephone rang at 9:00 p.m. the next evening. “Rick? This is Brenda at the Good Samaritan.”

“Yes?” I replied, without giving the late hour much thought. “How can I help you?”

There was a slight pause before Brenda managed, “Your father has succumbed.”

It was such a clinical term. Shock and grief overcame me. “Wh, wh, when? H, h, how?” I blurted out.

“Just a few moments ago. We were putting him to bed. It appears that he had a stroke.”

The next few minutes of conversation were a blur; eventually, I remember hanging up the phone and calling my sister to share the news. She, too, was stunned. We had just seen Dad, alive and well, only 24 hours earlier.

My older sister and I raced over to the nursing home to tearfully say our goodbyes to Dad. He lay on his bed, half-covered by a sheet and shadowed by the darkened room. The only comfort was that he looked at peace. Brenda sympathized and explained that his passing was quick and without excessive pain. This seemed little reassurance, but what can one ever say at such times to ease the anguish?

Dad’s body could not be stored at the care facility so we had to act immediately. With very heavy hearts, we called a local funeral home and arranged for Dad to be removed. I looked away as the attendants wheeled him to the elevator; all I heard was the clatter of the gurney wheels. When I heard the sound of the elevator doors closing, I turned and looked — but he was gone. After a few more sympathetic hugs from Brenda and her on-duty staff, we returned to my older sister’s home and called our younger sister. As she lived in another city, she had not yet heard the tragic news.

The next week was filled with funeral arrangements, cleaning out Dad’s room, and donating his clothes to a local charity. It all passed in what seemed like a second. Because Dad’s room was immediately required by another waiting senior, we were obligated to move quickly. Looking back, I remember fiercely disliking having to return to Good Samaritan so promptly when the memories were so fresh; however, this was for the best. It can be better to face a challenge head-on than to deal with it later or stall indefinitely.

During these days, my eyes frequently welled up with tears. Little things upset me, such as spotting the bus I used to ride to visit Dad, dusting off the few parental mementos I had adopted, and even reading another vehicle’s licence plate which began with the three letters “URN” (we had Dad cremated). I went for long walks without any destination in mind, just to escape the four walls of my apartment. I felt I had no further direction in my life. I functioned on autopilot through days and nights where I felt orphaned: I was now nobody’s child.

I was not only a caregiver for Dad, but also for my mother. Mom was initially diagnosed with Parkinson’s disease. This condition, a progressive neurological disorder of the central nervous system, can strike a young or an elderly person — Canadian actor Michael J. Fox was diagnosed with Parkinson’s at the age of 30, while my mother was diagnosed when she was 68.

Parkinson’s disease, for those unfamiliar with this condition, was first described in 1817 by Doctor James Parkinson, a British physician who published a paper on what he called the “shaking palsy.” With this, Mom’s hands would unexpectedly tremble; her handwriting became smaller and illegible. Her voice became a hushed whisper, and shoulder checking while driving became an unavailable option due to her more restricted mobility. There were many, many nervous moments when I was a passenger in her car.

There was medication, physiotherapy, and vocal exercises to help control the shaking and to make her life easier. There was nothing life-threatening; for Mom, always the stubborn one, Parkinson’s disease proved to be an inconvenience more than anything else. I cannot say the same for what was to come next.

The far bigger blow for both Mom and my family was her leukemia. She and my father had both retired and relocated several years earlier to the warmer climes of Victoria, British Columbia, while the rest of the family remained in Alberta. Considering my parents’ advanced ages, both were in prime physical condition at the time; I thought nothing of the possible future and the potential inconveniences associated with the distance between us. I realize now that this was a huge mistake. As a person ages, he or she will naturally decline so the person and his or her family must prepare. While on Vancouver Island, Mom and Dad did socialize; however, they built a very limited support circle so when all medical hell broke loose, my sisters and I had to act quickly. Although Dad had yet to be officially diagnosed with Alzheimer’s disease, Mom’s health news coupled with our joint concerns of how much we could help from a distance created an environment of worry.

There were few options. Mom and Dad agreed to return home to Alberta for a second opinion on Mom’s medical condition. The diagnosis, little surprise, was exactly the same. While they were back home and temporarily rooming with my older sister and her family (certainly not an ideal situation), my sisters and I argued that we could provide far better care for Mom if she was situated locally. To strengthen our case, the three of us often spoke as a unified body — either meeting with Mom and Dad as a group or with the others echoing each of our messages.

Convincing Mom and Dad to move back to Alberta was a long shot. We were comparing the beauty and year-round warmth of their Vancouver Island home to short summers and bone-chilling winters. Maybe Mom and Dad still had a soft spot for their former home or perhaps they realized that their children were bringing up practical and reasonable points. In the end, my parents agreed to move back.

Despite that my parents were former residents of Alberta, they still had to apply for provincial health-care coverage. When my parents relocated from British Columbia to Alberta, they were covered by BC health care for three months from the date of their move. Upon the re-establishment of their residency in Alberta, the paperwork began. In the case of Alberta Health Care, applicants must submit photo identification (e.g., a driver’s licence), a birth certificate or passport, and proof of residency (e.g., a pay stub or a utility bill). Despite being former residents of Alberta, my parents did not receive any preferential treatment; however, their former Alberta Health Care numbers were reactivated, making for at least one shortcut. In the case of other provinces, you should confirm the application process involved with your government health agency. For quicker service, I would recommend applying in person rather than by mail.

Initially, we found Mom and Dad a nice seniors’ apartment, which offered somewhat independent living. There was a kitchen in each unit; however, most residents took advantage of the restaurant downstairs which served three nutritious meals daily. In addition, care staff could provide assistance with daily tasks such as doing laundry, providing medication reminders, or monitoring the residents’ conditions. A doctor and registered nurse also made regular visits to residents.

Residents of the apartment building could come and go as they pleased. Visiting hours were unrestricted. A “great room” in the property offered space for residents to design different crafts, watch television, and play a game of eight-ball. Mom and Dad liked the building and got along well with their neighbours. My sisters and I appreciated the central and convenient location. I frequently stopped in on the way to or from work.

With Mom’s leukemia, she required almost weekly blood transfusions at a local hospital. Occasionally, we could stretch these to biweekly appointments. Although these transfusions provided short-term results — I called them “bandage treatments” — it was a pleasure to see Mom return to her old sparkling self again, albeit briefly, where she had untold energy to tackle almost any job given to her. Even Mom, a dynamic woman and accomplished zoology professor who fixed her own bathroom plumbing and fought for women’s rights, thought she was invincible after the process; she was found repeatedly climbing up the eight flights of stairs in her seniors’ apartment building!

We became regulars at the local hospital. Mom always joked that she needed a “fill up” and that “the gas gauge was running low.” Her lighthearted attitude helped to ease the strain of taking her in for what proved to become a full-day process. Mom had the easy job — she often dozed peacefully through the transfusions. As a spectator, though, watching the blood drip slowly from the bag above her hospital bed was painfully slow. There were only so many times I could read the daily newspaper, wander through the hospital hallways, or plug another few coins in the coffee vending machine down the hall.

Furthermore, coordinating these trips was no easy process considering Dad’s declining condition. Eventually, we couldn’t leave him at home to fend for himself for even a short period of time. Leaving a person with Alzheimer’s disease alone can prove immensely risky because the person may turn on the stove and promptly forget about having done so, or wander away from home and become lost. Nor could we just explain to Dad that Mom needed to be taken to the hospital and we would have her returned within a few short hours — Dad would not understand or remember this. We could answer a question for him and he would ask the same question minutes later. With Dad being very devoted to Mom, it was even more likely that he might stray from home in hopes of finding her when she wasn’t there. Eventually we either had to bring Dad along to remain at Mom’s bedside, or otherwise occupy him during her treatments.

Fortunately, my sisters and I shared the workload. I feel that doing everything independently would have been far too time- and energy-consuming, at the very least. I recommend that you do whatever you can to distribute the work when it comes to caregiving — there is simply too much to do and too much for one individual to handle.

Caregiving can become overwhelming. An only child can be at a huge disadvantage without siblings to work with; he or she can, and should, partner with other individuals and caregiving corporations, many of which exist (you will find many links to Canadian organizations in the Resources section at the end of this book). Whether you are an only child or you have siblings, you should know that you do not have to look too far for support and encouragement. Take a few minutes to complete the Your Circle of Caregiving worksheet at the end of this book and you may be pleasantly surprised as to how many support individuals and mechanisms you can find.

My sisters and I often rotated responsibilities: One of us would chauffeur Mom to the hospital while another would engage Dad by taking him for a walk, treating him to coffee, or visiting the museum. Another process was to spell each other, meaning whoever was minding Dad would bring him to the hospital and trade responsibilities with whoever was with Mom. Sharing the workload seemed like the fair thing to do.

We also hired a private companion for Dad to accompany him on regular jaunts when we were not available. My sisters and I chose the private companion route for consistency more than anything else. A friendly face arriving on a regular basis can be comforting; the sight of an unfamiliar worker can be confusing. More and more professional caregiving companies are springing up; however, many of these companies cannot guarantee the same worker will visit each time.

To find our private help, we placed an advertisement in the local newspaper. There was no shortage of applicants. It was a matter of interviewing and selecting the best one. While past experience was preferred, we were more interested in finding someone with good character; we had to trust him or her to be gentle, understanding, and caring with Dad. Jannet, our unanimous choice, proved to be an absolute dream; she remained with us until Dad’s death and even attended his funeral service. (See Chapter 8 for more information about interviewing caregivers.)

As Mom further weakened, she was admitted to the hospital. Although she was bedridden and the prognosis was not promising, my family still did not expect Mom’s death on June 25, 2000. She was 73 years old.

While I had had grandparents die, those relatives were quite distant. I never really knew them, making those losses easier to bear. Mom’s passing was the first death this close to me. Naturally, I felt saddened but I knew I had to carry on. There was little time to grieve because Dad still required attention.

Therefore, over the next four years, Dad became my primary focus. The property where Mom and Dad had been living somewhat independently was no longer suitable for Dad. He required far more attention than what could be provided. Missing that physical and emotional closeness he had had with my mother, Dad would “attach” himself to other residents. He would hover around them, rarely leave their side; obviously, his neighbours found this both uncomfortable and unnerving.

After some searching, we moved Dad from the apartment to another facility and, eventually, to a secured unit in long-term care. Along with moving Dad the first time, we moved my parents’ Siamese cat. We had thought the cat could provide a sense of comfort, calm, and familiarity for Dad in his new home. Initially, the cat was welcomed; however, that welcome wore thin quickly when it was discovered the cat, when outside, could reach up and grab the home’s door handle with his paws. The door would swing open and the cat would happily wander back inside. All fine and good, but the cat was not clever enough to remember to close the front door behind him! This posed a huge security risk to the residents, who may have unknowingly left the home themselves. Therefore, the cat had to go — immediately. Thankfully, my older sister adopted the cat.

When it came to the final move for Dad, we had little choice. He had outgrown the arms of Home Care (a government health program encompassing various services to help an individual remain living at home) and he had to be admitted into long-term care. Because of his situation, Dad was placed on a Priority List, meaning that he would be one of the first to be given an available bed. While we could specify preferred locations, this space could be anywhere and the family was obligated to take the first bed that became available. We were fortunate that a bed opened up at one of our top three care facility choices. There was no guarantee as to when or where the next bed would become available.

Transferring those with Alzheimer’s disease is not always recommended because it can cause increased confusion and anxiety. The earlier move occurred when Dad was still somewhat aware of my mother’s death; however, that memory slipped in and out. He would peer around corners and call my mother’s name. He would regularly ask where Mom was and I would have to repeatedly remind him of the painful news. For Dad, there was no recollection of this so each report came as unheard previously — watching his pained response each time was heart wrenching. We could have easily told him that Mom was at a friend’s, out for a walk, or reading at the library; however, it just didn’t seem ethical to lie to him.

Perhaps the progression of the Alzheimer’s disease was a blessing in disguise. As Dad’s memory continued to slide, he, fortunately, no longer asked about his wife. He adjusted well to his new surroundings and seemed at ease. Conversely, AD can have negative effects where an individual can become angry and therefore potentially physically dangerous to those around him or her. However, Dad seemed relaxed and cooperative — quite possibly a testament to his character of being very quiet and unassuming. Knowing that Dad was comfortable and cared for by competent and professional health-care providers reduced my own anxiety levels; however, I always had plenty to do for Dad, whether this was paying the bills, chauffeuring Dad to doctor’s appointments, picking up medications, or shopping for and delivering new clothes.

Balancing these extra duties, and often going steady from dawn to dusk, proved to be difficult. If I was not running another errand, my mind was always racing thinking about tomorrow’s schedule or what Dad might need. Many nights I would fall exhausted into my bed and pray for sleep, but does one really ever sleep when in this role? I often wished for more than 24 hours in a day and even that may not have been enough time. Compromising on sleep was not the solution as it made me exhausted the next day. Every time someone brings something new into his or her life, it will demand a portion of their time. Caregiving did more than demand; it competed with my personal life, work, and outside activities. As a current or future caregiver, you can — and should — expect the same.

My employer was not the most understanding when it came to granting my increased time-off requests. It is my hope that employers, in the future, will adapt to allow staff more caregiving time to tend to the needs of parents. I, however, had to resort to other means to do what had to be done. As an example, I remember once bringing Dad along to my personal physiotherapy appointment. Dad, however, grew restless while sitting in the front waiting room and the clinic receptionist, unsure of what to do, led him back to my curtained-off area. When he saw me, Dad became more relaxed and sat while I was receiving treatment. Having my dad there, I could not physically and mentally rest to enjoy optimum benefits of the physiotherapy session, which was certainly not an ideal scenario.

Many times, I could not sleep because I was concerned for Dad. Insomnia was my worst enemy; this obviously affected my concentration and ability to function. At that time, I was both working and attending post-secondary schooling. Caregiving was done in conjunction with these other responsibilities and balancing the roles was challenging, to say the very least. If you remember nothing more from reading this book, remember to seek help when and where you need it before you burn out; a candle burning at both ends will, eventually, burn through.

Remember, also, to plan ahead. You pack a suitcase and map an itinerary before leaving on vacation; you make a list of required items before going to the grocery store; and you pull on your long underwear and boots before going outside in the winter — caregiving is no different. You must prepare. What will you do when your mom or dad ages? Aging is the natural course of life, yet so many adult children are ill-equipped for the consequences. While becoming a caregiver may not be an imminent consideration, it is a strong possibility in today’s society. We age, meaning we physically and mentally decline. Never did this reality hit harder for me than when both my parents went through this process.

To their credit, both Mom and Dad worked hard and always provided for us; however, they fell short in providing emotional support or closeness. I cannot ever remember a good night hug or a kiss. My parents were not being mean or vindictive; this was just their way and what they had both been taught by their own parents. I now accept that they did the best they could with what they had both been given.

While I was never emotionally close to either of my parents, feeling like an orphan hit me hard. There was huge regret that I had not ever really known either of my parents. Granted, neither parent was the talkative type; however, why had I never asked them any questions about their lives? I know the basics such as their birthplaces, parents’ names, fields of study, and so on. However, my knowledge of other personal information is very limited. Who were their role models? Did they ever do anything they regretted? What were their favourite colours? What were their memories of their own childhoods and parents?

Over the past several years, anniversaries and holidays have dredged up painful memories. I wear a poppy on Remembrance Day in honour of our country’s veterans; however, that flower is also a tribute to my father, who could not remember. While Christmas celebrations have changed over the years (and family traditions have had to be reworked), this festive season still reminds me of the past. I often wonder how society seems to focus on people feeling festive but how can people feel cheerful when they are not? The annual marking of Father’s Day has also been complicated for me, for obvious reasons.

The old adage of “time heals all wounds” does ring true; however, one must be patient. I was told once that grieving is a personal process, so be tolerant of yourself and give yourself as much time as you need. If you know someone who is grieving, be supportive of him or her and remain understanding and patient. Show your love but give space; provide an empathetic ear but do not push him or her to talk. A person cannot, and should not, rush through, ignore, or dismiss sorrow.

In reading this book, you are taking an important first step as a caregiver, which is you are reaching out for help, support, and knowledge. You simply cannot do this alone. As a former caregiver, I can give you information. I intend to share what I have learned in hopes this may somehow help you. Through my sharing of personal anecdotes, I hope that you may somehow relate and learn.

Like so many other caregivers, the newfound responsibilities came as a surprise. Like a novice swimmer, I kicked and flailed but, somehow, managed to keep myself afloat. Although Mom and Dad had cared for me all of my life, I had never considered that the roles would switch and I would help care for them someday. Was this ignorance on my part? Possibly.

During the course of my caregiving experience, my emotions ran the gamut. There were days I laughed. There were days I cried. There were days I was frustrated. There were days I was hurt. There were days I felt hopeless and completely lost. There were days I was emotionally numb and didn’t know how or what to feel. You will likely experience similar emotions and many old memories will resurface as you proceed with your caregiving journey.

As a caregiver, I also became very aware of the struggles, the turmoil, and the careful balancing act required between living my own life and acting as a caregiver. I continued with my work, despite the fact that my effort and enthusiasm were dwindling. I ignored my friends not because I wanted to, but because I felt I had little time to socialize and my parents were my priority. I also pursued further post-secondary schooling (subconsciously, I must have realized doing this was important); however, I was having difficulty completing the homework assignments. Essays were being written at the eleventh hour and I did drop and postpone a few classes. As is common with caregivers, I put Mom and Dad’s needs far ahead of my own. Like so many others, I was not fully prepared for this role.

Having twice walked miles in a caregiver’s shoes, I feel well-able to share my experiences and knowledge in this book. I am neither a health-care professional nor a lawyer. Instead, I am a professional writer, a former caregiver, and my parents’ son and, therefore, I am well qualified to share in these pages.

Through reading this book, you will learn what I had to learn. You will be better prepared to tackle and positively continue with your own caregiving role. While I have written this book in hopes of helping others manage and cope, I have also written this for somewhat selfish reasons — those being to help rid myself of those personal demons and my continued doubt from my time as a caregiver, wondering if I could have done or accomplished more.