In my lifetime, I’ve seen both the difficulty and the profound beauty of the Patient-Caregiver relationship. My mother was the primary caregiver for my grandmother, and their bond lasted decades. My grandmother—may she rest in peace—was a wonderful, gifted, high-octane, impulsive, and stubborn woman.
When she was well, I used to stay with her at least once a week as a kid. For breakfast, we’d eat the most random things—kipper and eggs, baked potatoes and beans. She was truly special.
Yet, she was hard work. Despite being half-paralysed and struggling to walk, she fought like hell to live independently. She remained in her completely unsuitable home for over 20 years after her stroke.
She could be very angry, flipping like a switch, and there were many emotional highs and lows. My mother, despite going through very hard times herself, acted as the perfect daughter and primary caregiver—alongside my two uncles. She respected her mother at all times, took the ‘abuse,’ and fulfilled her role beyond any measure of effectiveness. She was a rock. She respected my grandmother’s right to live on her own and behaved with almost total dignity (give or take a few natural explosions and arguments).
I’ve also seen other caregiving relationships—my other grandparents cared for each other, and my in-laws do the same.
As I reflect on this, I see a lot of my grandmother in me—not all of it good. And I see the same strength in my caregiver: my wife of nearly 27 years.
They are often seen as separate characters in the unfolding saga of terminal illness, but I increasingly see the need for a true partnership between patient and caregiver.
My caregiver has to put up with a lot. Her patient (aka me) has been given a diagnosis that ends horribly. She has to confront that reality and accept that this isn’t the life she expected. And honestly, I believe she has the harder role. I’m not saying life is easy for me, but I wouldn’t want to swap places.
She has to endure my frustrations with the massive changes in our lives—and still support me. The truth is, she doesn’t have to do any of it. She chooses to. And I am hugely grateful.
Caregivers suffer tremendously. A CDC study from 2021–2022 showed that caregivers had worse outcomes in 13 of 19 health indicators compared to non-caregivers—including higher rates of depression and smoking. They often have to put their lives on hold to support their loved ones.
The worst feature of PSP, from what I’ve read—worse than the pain—is the gradual ‘loss’ of the loved one as they drift into a kind of oblivion. Many caregivers report that they “lost their husband/wife” and found themselves caring for “a person.” I pray this doesn’t happen to us.
As a patient facing PSP, I know I have the right to feel frustrated and angry. And sometimes, I’ve taken it out on the person I’m closest to—my wife.
So this is my message to all caregivers out there: Thank you. And especially, thank you to my wife.
We patients can be self-centered. We expect complete focus and attention. I’ll say, “Please go out and enjoy yourself,” and then get annoyed when she actually does. You can’t win with me.
It’s a truly selfless role you play, often with no reward—physical or emotional. But your sacrifice is deeply appreciated, even if it’s not always shown.
I know I have to work on myself. It’s not enough to say these things—I have to translate them into better behavior and attitude. My mother didn’t deserve some of the harshness she received from my grandmother, even if much of it was unintentional and illness-driven.
My caregiver is my partner, and I look forward to many, many happy years together.
Why I’m Writing This
Partly because I want her to read this and I find it hard to structure and say it verbally in a coherent way. It is also her 50th birthday and it is causing me to think about it a lot. I need to actually actualize some of the changes and improvements I talk about and putting it on record will push me to do so. Lastly, this is a much more general message about the need to respect the caregiver’s role and see it as a partnership. There are people who take on an illness without a true caregiver—for them, I take off my hat and respect them even more so as they cope, like single-parent families do. I, like many others, rely on my caregiver and just have love and praise for her.
