Renovation – The Hardest Project Yet, But the Most Important One

I have been fighting it for weeks – a combination of playing for time, debating the plans, and frustration at the cost… basically, anything to delay the inevitable.

My wife is a rock-star, and I’ve been more resistant than I’d like to admit as we’ve had this debate. She has listened patiently and let me vent, but she was, and is, right. We have to start.

She has been working with a designer, disability consultant, and builder to prepare a plan for a disability-friendly bedroom and bathroom, as well as a spare room for a carer (assuming I have a male carer, she and I don’t want them living upstairs), and accessibility ramps outside.

Life with PSP has always been a balance between being prepared and living life, and we’ve tried to be both hopeful and ready. The overwhelming probability is that soon I’ll need to move downstairs, have a disability-accessible bathroom, and a carer. It’s not just sensible, it’s necessary.

More than that, I put in my ‘End of Life Document’, now filed with the government and part of my biometric record, that the two most important things to me are:
(1) That my wife has the best possible support to care for me in an environment that works for her – whether that be a hospice or our home.
(2) My personal dignity – not luxury or comfort, but dignity.

Building these rooms is essential for that, and as a by-product, it also adds value to the house by creating a “unit downstairs”. But the real issue is emotional.

I’m going to have to summon the strength to watch what is, in effect, my ‘hospice’ being constructed over the coming weeks – and I think that would be hard for anyone.

So today, we bit the bullet and signed the contract to start the work. We sat with the builder, and I began by saying (in Hebrew):
“I want you to know that I don’t actually want this work done, and I’ll probably not be the happiest client – but that’s exactly why this is so important. I truly appreciate it, even if I don’t always show it. Thank you.”

We broke the ice, laughed a bit, and got down to business on how long it will take. Today, I bought in emotionally. Now I have to face it like everything else – a project designed to make life easier for the two of us and the kids. It needs to be done, and it will make life better.

It’s a rapid and relentless progression – from cane to walker to wheelchair, and now to “hospice”. But it’s the right step, and I’m going to do my very best to face this challenge and see it as an opportunity.

This is one more way for me to thank my wife for driving this. I haven’t been easy, and renovation is never easy.

I pray that none of this is needed, but the overwhelming probability is that it will be. Having struggled with disabled toilets and wheelchair access recently has given me more than enough encouragement to move forward.

So yet again, I say Yalla to another project designed as a ‘live with PSP’ measure.

I’ll rely on something I’ve seen consistently at each stage – the fear always turns out to be much, much greater than the reality.

Tough decisions are needed – I need to toughen up.