Never Again: Why I Refuse to Carry the Burden of Caregiving
I was writing a book about how to survive family illness and Caregiving, but now I know I should have walked away. Here's why.
When I cared for my Dad during his decline with Multiple System Atrophy, I believed I was doing the right thing. I believed I had no choice, and I was fully committed to it.
The doctors and the system leaned on me. The expectation was clear: you are family, so you will do this. And I did. For years, I gave everything I had to try to improve his quality of life. I fought for him, advocated for him, and sacrificed myself in the process.
When I brought up the topic of this blog post to Mom, she apparently remembered suggesting during the first Home Care meeting that she and I move far away and have nothing to do with the situation. I didn’t know that was possible, and was given the impression that family had to be involved. Anything else seemed absurd to me, and I don’t know why.
I was proud of what I did, but the cost was severe. My health collapsed. My life was derailed. The damage remains to this day. What I once thought of as strength was, in reality, destruction, and I have realized it wasn’t worth it.
Family Cannot Be Forced to Be Caregivers
Here is what I know now, and what I wish I had known then: no law required me to do it. But they won’t tell you that because they don’t want you to know.
Family members are not legally obligated to take on Caregiving. I could have walked away. The pressure I felt was not law, but guilt, expectation, and a culture that tells families they must sacrifice themselves without regard for the damage it causes.
The System Exists for a Reason
Health care systems exist in Canada to provide care. It is flawed, and in many cases the workers do not push as hard or care as deeply as a family member might. But it is still their responsibility, not ours. It is not the duty of sons, daughters, or spouses to shoulder the entire burden of Caregiving. Nothing in law requires it, yet many still feel trapped into doing it. In many cases, due to financial pressures.
The Toll on My Health
Those two years of Caregiving broke me down. My IBS became unmanageable under constant stress and unpredictable demands. Flare-ups left me unable to function.
Anxiety left me on edge, never able to predict when my body would collapse. I went weeks without proper rest, waking up to help, falling asleep at odd hours, and never truly recovering.
By the time my Dad died, I was wrecked. It took four years before I could even consider working again. Even now, I live with chronic, unpredictable symptoms that control much of my daily life. I have lost the last ten years to this. I have not been living — only surviving, day by day, under the weight of what those years did to me.
Boundaries to Withstand a Hurricane
People talk about “drawing a line in the sand.” That is fragile and temporary. My boundaries are no longer fragile or temporary. It is now a seawall, built from reinforced concrete keeps the water out, more powerful than the kind of structure designed to hold against the impact of hurricanes and relentless waves. These barriers are not symbolic. They are engineered to hold when everything else is swept away.
My body is fragile, like every human body. Mine carries the damage of those years. My boundaries are strong. They are not open to interpretation. They are not negotiable. They are firm, absolute, and built to withstand pressure from guilt, expectation, or cultural myths about duty.
This wall will not shift. It will not weaken. It will not give way regardless of how much pressure is applied. When the pressure comes, it will break against the wall, not through it. I once lived as if I had no choice. This wall exists so I never forget it again, and my body is a daily reminder.
As Mom Ages
Without my involvement those years ago, Mom would have died as well. As my Mom gets older, I will not be forced into the position of Caregiver again. She has her own choices as she ages, and I respect those choices. But they remain hers, not mine. If she ever becomes ill, or is diagnosed with Dementia, or reaches a stage where she requires care, my boundaries are strong, and I will have no part of it.
She may choose home care. She may choose assisted living. She may choose MAID. Those are her decisions and her burdens. They will not become mine. I will not be drawn back into the same role that destroyed me once before.
If that time comes, I will step away completely. I will not ask for updates. I will not involve myself in the outcome. I will cut off contact. She has her plans already in place, and the laws are clear. This is not neglect. This is not abandonment. This is the reinforced seawall standing between me and a storm I will not endure again. These are boundaries that my Mom and I are at peace with.
My Future
As I move forward, my own health and future remain central to my decisions. If I am able to get a Colostomy bag, I will likely pursue trucking as a way to build a life for myself and move on. It would allow me to get ahead financially and physically leave behind the possibility of being pulled into my mom’s care as she ages and the likelihood of conditions like dementia increases. That distance would protect me from the very storm I refuse to face again.
If I do not get the Colostomy bag, my quality of life will not improve. In that case, I expect that I will be approved for MAID. These outcomes, living a better life with a Colostomy Bag, possibly trucking and moving away, or MAID, guarantees that I will not be burdened with Caregiving if my mom’s health deteriorates.
These are not easy decisions, but they are necessary to protect myself from ever reliving what destroyed me before. I will not remotely risk continuing to live with her and witnessing her potential decline.
Conclusion
I cared for my Dad because I thought it was required and “that’s just what family does”, but the reality is that the toll it took on me was not worth it. My health has never fully recovered, and I continue to live with the consequences.
The truth no one says out loud is this: doing what you believe is “the right thing” can leave you permanently damaged. The health care system exists to provide care. Families are not legally bound to destroy themselves, and they should not be pressured into it.
If you are ever placed in the position I was, remember that you have the right to refuse. If possible, please do so.
You are not required by law or morality to sacrifice your life to provide care. I should have refused then, and I will refuse from now on. My dad’s illness showed me what it meant to give everything, and my own body showed me what it meant to lose everything in return. It was not worth it. This is why I say never again.