The Unseen Realities of Caregiving: What No One Talks About

When people think about caregiving, they often imagine it as an act of love and selflessness—a beautiful way to care for someone you cherish. While that’s true, it’s only one part of the story. The reality of caregiving is often far from romantic. It’s messy, uncomfortable, and heartbreaking in ways that no one prepares you for. These are the parts we don’t talk about, but we should.

One of the hardest and least-discussed aspects of caregiving is the sheer physical labour involved. Assisting someone with toileting is a task that strips away any illusions of dignity—for both you and them. Cleaning up after accidents, managing diarrhea, and giving your husband a suppository are not acts you ever imagine yourself doing when you picture marriage. Wiping him, cleaning him, and trying to reassure him as he apologizes or seems unaware of the mess—it’s a deeply humbling experience, one that can erode the dynamic of a relationship.

It’s not just about the act itself, though that is hard enough. It’s about what it does to the relationship. The intimacy of a partnership shifts into a caregiver-patient dynamic. You stop seeing each other in the same way. The roles blur, and what was once a connection based on love and attraction becomes overshadowed by tasks that feel clinical.

I’ve cleaned up more bowel movements than I can count. I’ve been thrown up on, and I’ve scrubbed floors in the middle of the night. These moments strip away any semblance of normalcy in a marriage. You do it because you love them, but it changes how you see each other. It’s hard to feel like a partner when so much of what you do revolves around caregiving. And it’s even harder to feel desirable or romantic when your days are filled with such deeply unglamorous tasks.

Transfers are another challenge. Whether it’s moving someone from a wheelchair to a bed or helping them stand up, every movement feels like a balancing act. My back aches more often than not, and there’s always the fear of a fall—theirs or mine. The lack of adequate help over the years has left me with chronic pain and physical conditions I am now trying to heal from. Caregiving takes a toll on your body in ways that linger long after the caregiving ends. My shoulders, back, and knees bear the evidence of years of heavy lifting, improper support, and the constant strain of physical labor.

There were days when I had no choice but to manage transfers on my own because a second caregiver didn’t show up. Shawn is a two-person transfer, but when help wasn’t available, it fell on me—"the wife." The repetitive strain, the awkward angles, and the sheer weight of the task left me broken down physically. It’s only now, in the aftermath, that I’m starting to confront the damage done and the long road to recovery.

Caregiving also means living in constant vigilance, especially when choking is a possibility. Watching a loved one struggle to breathe is terrifying. Even if you’ve been trained to handle it, nothing prepares you for the panic that sets in during those moments. Your mind races: What if this is the time I can’t help them?

Because of Shawn’s perseveration with food, he needs constant supervision during meals. He often shovels large amounts of food into his mouth, risking airway blockage. I’ve had to perform the Heimlich maneuver more times than I can count, and each incident not only terrifies me but also takes a physical toll on my body. We rarely eat alone anymore because I’m afraid that if he starts choking, I won’t be able to save him by myself. His brain injury continues to evolve, requiring a higher level of care each year, yet paradoxically, the amount of support available to us has diminished over time.

These crises don’t just happen once; they’re a recurring fear. You’re always on edge, bracing for the next emergency. It’s an exhausting way to live, but it becomes your normal.

Perhaps one of the most heartbreaking parts of caregiving is witnessing cognitive decline. When someone you love forgets who you are or loses touch with reality, it feels like you’re grieving someone who is still alive. There are days when they call you by the wrong name or can’t remember what year it is. Those moments cut deep.

It’s not just their memory that fades—it’s their personality. The person you knew is slipping away, and you’re left holding onto fragments of who they used to be. It’s a kind of loss that’s hard to explain to anyone who hasn’t lived it.

Caregiving doesn’t just change your daily routine; it takes over your entire life. Independence and freedom become distant memories. You can’t just get away without help, and even then, there are strings attached. Whether someone stays at your house to assist or you have to bring help along, your sense of spontaneity is gone.

For years, my life revolved around the clock. Home care workers came at 9:30 a.m. and 6:30 p.m., so I had to be home during those times, no matter what. I eventually stopped trying to make plans during those hours because I was constantly short-staffed. Shawn is a two-person transfer, so if the second person didn’t show up, "the wife"—as I was labeled for almost 17 years—had to step in.

Being called "the wife" stripped me of my identity. I wasn’t seen as an individual anymore, just a caregiver. I was only 36 years old when I became the person I am now. Losing that sense of self has been one of the hardest parts of this journey and a key focus in my healing. I’m working to reclaim who I am outside of caregiving, but it’s a process that takes time and intention.

Caregiving changes relationships, especially with spouses. What was once a partnership becomes a caregiver-patient dynamic. The loss of physical and emotional intimacy is profound. Touch becomes functional—lifting, bathing, assisting—rather than affectionate.

I grieve the relationship we used to have. I miss being seen as a partner, as someone desirable. Now, my role feels reduced to “the helper,” and that’s an incredibly isolating experience. No one talks about how lonely caregiving can be, even when you’re with the person all the time.

Caregiving consumes everything: your time, your energy, your plans for the future. I’ve lost count of the opportunities I’ve missed, the milestones I’ve delayed, and the goals I’ve had to put on hold. Years blur together, and sometimes it feels like my life is on pause while everyone else moves forward.

It’s not just the big things, either. It’s the small moments of time that slip through your fingers—a quiet morning to yourself, an evening with friends, or simply sitting down without a list of caregiving tasks hanging over your head. Time feels like it’s no longer yours, and reclaiming even a fraction of it can feel impossible.

There was a time when I felt utterly hopeless. I wasn’t suicidal, but I also didn’t care if I lived. I was a career-focused woman who had worked incredibly hard to get where I was. In one short minute, it all went away. My days became filled with appointments, workers, and constant nursing visits. It was getting harder to manage, and I knew that one day, my children would leave the house. Then what? Would I move into a long-term care home because Shawn’s needs exceeded what retirement facilities could offer? I felt broken, and I didn’t know how to fix myself.

I was dealing with constant incontinence, nights where Shawn would pull off his catheter because of oversexualized behaviors, and mornings where perseveration left his face covered in blood from picking at his nose. I had to separate our beds because I couldn’t wake up one more time to blood, feces, urine, or semen on me or my bedding. The smells were overwhelming, and I tried to fix it all because that’s who I am—a fixer. But instead of solving the problems, I was defeated.

I cried all the time, in private, because I didn’t want anyone—especially Shawn or the kids—to know I wasn’t strong anymore. I begged for help, but no one answered my call. I felt like a failure.

What people on the outside don’t always see is that this wasn’t an impulsive choice. For a long time, I was screaming on the inside that I was falling apart, but I didn’t feel seen or heard. I had built a wall around myself, and most people either didn’t know how to get through it or didn’t think to try. Some focused solely on how all this was affecting Shawn, while others understood that I had to save myself—for both our sakes.

Ultimately, it was the only way for us to survive a life that had become unsustainable. I knew I was heading toward a breaking point, and if I didn’t make a change, we would both suffer even more. It was a painful realization that the path we were on wasn’t working, and I couldn’t keep sacrificing my health, my identity, and my mental well-being indefinitely. Stepping back or finding a different arrangement wasn’t giving up; it was a necessary act of self-preservation and, in the end, an act of care for him, too.

Caregiving is an act of love, but it is also a sacrifice. It’s messy, uncomfortable, and often heartbreaking. But talking about these realities doesn’t mean we love the people we care for any less. In fact, being honest about the challenges is one of the bravest things we can do. It’s how we validate our own experiences and help others understand the full picture of caregiving.

If you’re a caregiver, know this: you are not alone. It’s okay to feel frustrated, exhausted, or even resentful. Those feelings don’t make you weak; they make you human. And if you’ve ever thought, I can’t do this anymore, that doesn’t mean you’ve failed. It means you’re carrying a weight that most people can’t even imagine.

Let’s keep speaking these truths. Let’s make space for the messy, uncomfortable, and sad parts of caregiving. Because only by shining a light on the darkness can we truly honour the depth and complexity of this role.