Caregiver's Guide for Canadians. Rick Lauber
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