Caregiving is a labor of love and respect. It is difficult, but necessary. You can read a thousand articles and blogs about caregiving—no matter the diagnosis—and most of what you hear are the joys, rewards, and blessings of the role. Yes, caregiving can be noble and rewarding, but today I want to talk about the other side. The side few are willing to say out loud.
Any caregiver can relate to this, but especially those caring for someone after a stroke. This is my truth—some days.
Almost seven years ago, when my husband first had his stroke, I was happy to do everything. I threw myself into caregiving, likely doing far more than I should have, trying to show love and compassion to a man who had once been fiercely independent. The stroke damaged his self-confidence, and many parts of who he once was seem permanently out of reach.
Here is my truth: seven years later, some days I feel tired. Some days resentful. Some days annoyed. And some days, I wish I could walk out the door and never come back. If that sounds harsh, I make no apologies—because it is honest.
How did I get here when, in the beginning, I didn’t mind any of it? The answer is simple: I began to feel ignored, unvalued, and unappreciated. And while that may sound selfish to some, it is incredibly difficult to give endlessly when you feel unseen. I love my husband deeply, but the sacrifices have been enormous. I could carry them more easily if there were signs of appreciation.
He will say “thank you” or acknowledge my help if prompted. I understand that a stroke causes personality changes, but it does not remove one’s sensibilities.
I accepted early on that my life would change. I had no problem staying home, limiting outings, washing clothes and sheets, preparing meals, cooking, cleaning, driving, managing the household, and handling every responsibility alone. I knew that part. What I wasn’t prepared for was the lingering depression, the short temper, the refusal to go anywhere, and the stubborn resistance to even basic care—things like brushing his teeth, cutting his hair, shaving, or wearing new shoes.
Let me explain. He will only allow me to brush his teeth when he has a doctor’s appointment—which isn’t often. He refuses to let me or a barber cut his hair or shave him more than once a month. In between, he looks unkempt, and people quietly place the blame on me.
He wears the same pair of shoes every day. While he does not walk, the shoes help him grip when standing or transferring. After a year, they are worn and need replacing, but when I try to put a new pair on his feet, you would think I was hurting him. He flatly refuses.
I work relentlessly to keep him clean, the house clean, his meals healthy, and his appearance respectable—and he fights me on all of it. This is where resentment quietly takes root.
Yes, I love him. But some days I fantasize about being free—about simply being me again. Some days my eyes roll involuntarily when I hear his wheelchair approaching because I know it means more work. Either he needs help getting to the restroom, or he already has.
This would be manageable if I were rested—but I am not. My biggest struggle is that he stays up all night, making his schedule the opposite of mine. I am woken repeatedly to help him, and my rest is constantly broken. It feels as though I never have a truly peaceful moment. I am always tired.
This is not me complaining or standing on a soapbox. This is reality. I am human. There is no one to relieve me for a day. No one to take him to appointments. No backup.
There are days I would give anything to stay in bed all day watching movies, uninterrupted. That will never happen—but it is a comforting fantasy. The truth is, I will never get a vacation or a true break. This is my reality, and I accept it.
I wanted to say my private thoughts out loud so others who feel the same will know their feelings are valid. My husband will never suffer or be neglected—no matter how I feel—because I love him and would never mistreat him. He receives the best care I can give.
What I have learned is this: I do not have to feel guilty for the days I resent the situation or feel deeply alone. Those feelings are valid. You are not a bad caregiver for having them. You are human.
At the end of the day, we would not trade our lives because we want the best for the ones we love. That is why the “mini vacations” I mentioned in my last blog matter so much. Self-care is not optional—it is survival. If you do not nourish yourself, there will be nothing left to give.
This is how I get up and do this every day.
I’ll share another post before the holidays.
Until next time,
Lillian
The Stroke Effect 