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I try not to talk about money because, as a Brit, it is one of those uncomfortable topics. I am lucky. I worked very hard during my career and saved well. But retiring at 49 was not expected. Neither was needing a full-time carer, which is very far from free.
Money is obviously not the most important thing in life. It is easy to say that.
It is slightly harder to believe it when your income has been dramatically reduced, your expenses have increased, and you are still part of a family with bills, education costs, shopping, and all the normal expenses of life.
For most of my life, I tried to live within a budget. That is relatively straightforward when you have a predictable income. It becomes rather different when your income is suddenly slashed and you were the main earner. You cannot help worrying about money.
Take last night. From 1 a.m. until 7 a.m., I sat playing with a spreadsheet of our finances.
I am a chartered accountant by background, so spreadsheets are not exactly unfamiliar territory.
I wanted to know one thing. Are we going to be okay?
I am luckier than the vast majority of people. The answer, thankfully, is that I can just about make it work. But even getting to that answer creates enormous stress.
I have also been through the tortuous process of applying for disability benefits. Here, PSP is not even listed specifically in the standard disability framework, and although I eventually received a high disability assessment, it did not come easily.
There were committees. Assessments. More assessments. A friend of mine with cancer was granted 100% disability automatically, without going through anything comparable.
I am absolutely not suggesting that cancer patients should face more bureaucracy. Quite the opposite.
I simply find myself asking why someone with a rare, progressive, and ultimately fatal neurological disease should have to repeatedly prove how disabled they are.
PSP has an awful prognosis. It progressively removes independence, mobility, communication, and the ability to work. Surely the system should recognise that reality more easily.
The financial burden of serious illness also goes far beyond disability benefits. You may have to give up your career. Your partner may have to reduce their work. You may need carers, equipment, adaptations, and private treatments.
You have to think about insurance, pensions, taxes, wills, powers of attorney, passwords, and access to financial systems.
You have to make plans for the people you love. At exactly the moment when you would really rather be thinking about almost anything else.
Money becomes another part of the illness. Not the most important part. But a very real part.
It affects your wife or husband. It affects your children. It affects other family members who may depend on you. Nothing about it is straightforward.
I wish I had a clever solution. I do not. Save well if you can. Take advantage of pension schemes, insurance, and tax-efficient savings while you are healthy.
Get good financial advice – I have had the best. Make sure your partner understands where everything is. Keep records.
And do not assume you will always have another ten or twenty years of earning ahead of you. My own plans looked very different a few years ago. So did my expectations for retirement. So did my expectations in many areas of life far more important than money.
But we should stop pretending that finances are somehow too vulgar or too unimportant to discuss when serious illness arrives. They are not. Financial stress is real. And it can be enormous.
As I said, I am one of the lucky ones. I have savings and life insurance. I have financial knowledge. I can sit for six hours with a spreadsheet and work out whether my family is going to be okay.
And that was still one of the first things I felt I needed to do all those months ago. For someone without those savings, without that training, or without good advice, this must be unimaginably harder.
Money is not the most important thing when you are seriously ill. But pretending it is not important is a luxury.
