Being Married to Someone with PSP

Today is our twenty-ninth wedding anniversary. My wife will instantly wonder why I have chosen to write this but I think it becomes clear that this is a much broader post…so honey, please read on.

As I thought about what to write, I realised something. Almost everything I have written over the past year and more has been from the perspective of the person living with Progressive Supranuclear Palsy. That is understandable. PSP is a cruel disease, and those of us living with it are trying to make sense of a world that changes far faster than we ever imagined.

But today is different.

Today is about the person who walks beside the patient.

What does it take to stay married to someone with PSP?

After nearly three decades of marriage, you imagine retirement looking a certain way. You expect to enjoy the rewards of years spent raising children, working hard, making sacrifices and building a life together. You don’t imagine replacing holidays with hospital appointments, conversations about travel with hours preparing medication, or plans for the future with plans for an evening spent alone whilst your partner goes to bed at the completely wrong time because they are so exhausted.

Yet that is exactly what many husbands, wives and partners find themselves doing.

Almost overnight, the role changes. You become the driver, the organiser, the advocate, the administrator and, increasingly, the caregiver. You learn a language you never wanted to learn, one filled with neurologists, wheelchairs, feeding discussions, care agencies and endless appointments. None of this is what you signed up for, yet somehow you keep showing up.

The relationship changes too.

Not because either of you wants it to, but because PSP changes the balance of a marriage.

Hospital beds, wheelchairs, live-in carers and medication slowly occupy space that once belonged to shared routines and dreams. The person you married is still there, but the disease increasingly speaks on their behalf. For many people with PSP, a disease with the same tau protein as Alzheimer’s disease, it can bring cognitive changes, apathy, emotional blunting, exhaustion and behavioural changes. Sometimes the illness says things the person never would. Sometimes it steals words and the ability to express altogether. Many partners talk of the person sitting there as not being the person they married. It is so sad.

The marriage gradually becomes less equal. Not through choice, and certainly not through a lack of love, but through necessity. One partner increasingly gives. The other increasingly receives. Love remains, but it is expressed differently.

What is often forgotten is that PSP doesn’t only ask the patient to surrender their future. It asks the spouse to surrender theirs as well.

Careers are interrupted. Friendships become harder to maintain. Spontaneous evenings out disappear. A live in carer enters the mix. Holidays and in fact any trip require military planning, if they happen at all. Sleep is interrupted. Worry becomes constant. The future becomes uncertain.

And yet so many spouses carry all of this quietly. An overwhelming feeling of sadness is often felt.

There is another question that few people ask but we all know it is there, hovering and lurking.

What happens afterwards?

If the disease follows its expected course, one day not too far away the spouse will find themselves alone. Not because they chose to leave. Not because the marriage failed. Not because they wanted a different life.

They rather liked the one they were building (and so did the patient).

That quiet grief begins long before bereavement. It sits in the background of anniversaries, birthdays and family celebrations. It is rarely spoken about, but it is there.

As we celebrate twenty-nine years of marriage today, I want to say something that perhaps many people with PSP wish they could still say.

Thank you.

Thank you for adapting to a life neither of us chose. Thank you for becoming the driver, the organiser, the advocate, the caregiver and, somehow, still my wife. Thank you for carrying responsibilities that once belonged to me without making me feel like a burden. Thank you for standing beside me through hospital admissions, difficult conversations, frightening symptoms and uncertain days.

You and I know that we have both had to learn our new roles on the fly without warning and it is hard and mistakes are made. We have had to re-imagine life.

No marriage is perfect, although I personally feel our is and has been not too far from that. We met when we were eighteen, and I knew you instantly were the person for me, even if you thought I was someone else :-). We grew up together, raised a family together defying many challenges, we moved country and built a life together. If anything, PSP has reminded me just how much of that life rested on the strength of the person standing beside me.

While I am still able to find the words, I want to use them.

Thank you for everything you do. Thank you for every sacrifice that no one else sees. Thank you for continuing to choose us, even when the road became unimaginably difficult. Sometimes our kids have seen us on less than the best of days when there is so much to do and worry about but the fundamental truth is that I love you and I know you love me.

I also believe that, if they were still able to express it, countless other people living with PSP would want to say exactly the same thing to their own husbands, wives and partners. The disease may change behaviour, personality and communication, but it does not erase gratitude.

So today this thank you is not only mine.

It is offered on behalf of those who can no longer find the words.

To every husband, wife and partner caring for someone with PSP, thank you. Where the partner is not able to or is not around then I extend the same thank you to every son or daughter who quietly becomes a caregiver, to every sibling who does the same, as to every other person who steps up to meet the desperate challenge – the live-in carer, the social worker and the friend.

Thank you.

You help carry burdens that were never yours to carry, and although they often go unseen, they are never unappreciated.

Neither of us knows what our thirtieth year of marriage will bring. PSP has taught us not to make too many assumptions about tomorrow.

But I hope there will still be reasons to laugh. I hope there will still be moments of joy alongside the difficult days. And I hope that next year, we will be able to go away and celebrate thirty years together and I hope the same applies for many many more but we don’t know what PSP will bring.

That would be a wonderful anniversary present. We have to have faith. I love you.