By Linda Fiddler
A letter for all those caregivers who walk the darkest path
I am sitting here at 6:30 in the morning. Less than a month ago, on September 30th at 5:37 p.m, 2022, my mom’s 14-year illness with dementia and later cancer, came to an end; so, I am alone. Throughout her illness and her death, she lived with me. I became her sole caregiver, her confidant, and advocate; she became my confidant, my pathway through life’s hardships, and eventually my vulnerable dependent – like a helpless child seeking shelter from a storm of pain, loneliness, and fear.
At the start of her illness, I learned that another name for this disease is, The Slow Death, and my god that name is so accurate! Dementia is a prison that grows stronger with each passing day, week, and month. The myelin sheath and sensory neurons of my mother’s brain and body were slowly destroyed, and so too was her ability to communicate with and understand the world outside of her own body. She lost her senses of physical, chronological, and spatial awareness. She lost her ability to effectively use and understand language. She lost her ability to retain information and memories of acquaintances, relatives, friendships, and experiences. Then the worst began, her dissipating senses no longer allowed her to remember her own children. The prison in her mind isolated her and did not allow the love or security that memories of her family could have provided to comfort her. She was completely, totally forever, alone.
Initially, I furthered my mother’s loneliness and suffering because I did not understand the changes that this illness wrought in my mother. I was so very impatient and angry, so often. I was alone in caring for her, and I hadn’t the slightest clue as to how to take care of her.
Then, in 2017 she spent a few weeks in the hospital. It was at that time that I was urged by concerned nurses, doctors, and family to put my mother into a nursing home; however, as I was standing next to her hospital bed, uncertain of what to do, I started crying. I cried because I knew I didn’t know how to physically care for her, I had no resources to access, and I was scared to hurt her or let my ignorance cause her accidents. I cried because placing her in a nursing home seemed like the only option, but my mother herself gave me the answer; while I was crying, she reached out her old work-worn hands and took my hand in hers. I could see her struggling to talk, too find the words she wanted, too quell the agitation that heinous illness was forcing upon her, and when she was finally able to say what she wanted her only words were, “It’s okay, Linda you need to do what you have to…I’ll be okay!” It wasn’t okay, and I took my mom home.
Days after my mom’s return home, I met a healthcare worker who put me in contact with a physiotherapist, and a coordinator who would change my mom’s and my own life: they taught me everything about how to lift, transfer, guide, feed, clean, change and toilet my mother; they taught me how to observe and recognize certain pain indicators. Also, a sister whom I hadn’t had close contact with for years came back into my life with all the force, dedication, and support her tiny frame could muster for both my mom and me. She taught me about pericare, medicines, techniques to make my mother more comfortable, and techniques that also made caregiving a little easier. It was also this sister, who in the end tried to prepare me for the cruelty of taking care of and losing someone you love while they die. She quietly waited and accepted all my rants, my feelings, and thoughts; she waited, while I held my mother’s hand and rubbed her arms and shoulders and sang to her, or read to her, or talked to her; she waited, while I clung desperately to my mom and I kept hoping, without reason, that everything my mother had suffered during the past 14 years had been a horrible nightmare or just someone’s horrible dictation of life and fate that would all turn out to be a mistake – that somehow my mom would be okay, that she would get up and her suffering would be ended, that she would be free from the living prison her body had become; then, at the end when a shell of ice and fear froze all my actions and thoughts, she literally pushed me into the realization that I had to say goodbye. It is because of my sister’s refusal to let me freeze up that I was able to talk with my mom and in that final conversation there was all the love, caring, honor, and respect that had been cultivated and tended during our 63 years as daughter and mother. Then she died, at home, with me holding her.
Today, I am and will forever be grateful to my mother for those words she spoke that day in 2017 at the hospital. Those words of love and concern for me, helped me make the right decision. At the time, I didn’t know what our next move would be, how we would survive, and how to care for her, but because of her words were her attempt to free me from the responsibility of guilt, I didn’t give up. Knowing that I held her and didn’t leave her in an institution is a great comfort. Taking care of her and having been her full-time caregiver is for me a badge of honor, and it gives me purpose. I am striving to tell our story so that maybe other people who choose to walk the dark path of death with someone they love will no longer be penalized for a choice made from the very depths of their souls.
Unfortunately, facets of society, government, and bureaucracies lack an understanding of the horrors and hardships faced by those caregivers who choose to stay at home to nurse and comfort dying loved ones. My mother died without even the dignity of having a decent funeral. The Temporary Death Benefit was not made payable to her because she had been a housewife most of her life, despite the fact that being a housewife during the 60s and 70s was strongly encouraged, in fact, coerced. My family is not rich or even middle classed, and despite working all our lives we were unable to pay the funeral expenses. I do not have a partner, and in the first 8 years of caring for my mother, I used my savings, my EI, and my retirement savings to support us. I have nothing left to give. I am forced to rely on charity to complete her burial or to bury her remains at a later time when hopefully I have a source of income; though this may be awhile because now my body and heart need to heal. At 63, because I chose to care for my mom and give her as much comfort, love and stability as possible through a slow, decimating illness, and because I chose her emotional, spiritual and physical wellness over a systemically, coerced institutionalization, my mother will suffer the indignity of charity.
The immediate costs of dying are extremely expensive, in spirit, soul, heart, mind, and physical costs. To die cost my mother her freedom, her independence, her happiness, her very family, and her pride as I had to rely on charity for her cremation and other death costs. It cost me my spirit, soul, faith, and my back’s health – as all the hospital could provide for me to rest and sleep on during a three weeks stay with my mother was a small office chair, financially, there was at least $2500 in costs to stay in hospital with her and then to take her home. Within days after her death, there was the further humiliation of spending a night freezing in my house without energy because a crown-owned utility refused to acknowledge the hardships and costs of dying, and would not allow arrangements to be made for a $450 bill. All these costs and humiliations, however, are just earthly matters and can be dealt with, caring and advocating for my mother gave me this realization – my mother is still busy teaching me, and she is still holding me through the hard times.
The penalties of caregiving and dying in our society are atrocious, inhumane, and thoroughly destructive; yet, regardless of charity or consequence, my mother and I walked the darkest path together, and I can only hope that in that bond of love, respect and honor our souls and spirits are and will forever be linked.