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
