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People don’t like talking about money. It is sensitive. It causes stress. It remains slightly taboo.
As a Brit, I can discuss the weather and sport for hours. Mention finances, however, and I suddenly develop an urgent need to put the kettle on.
Health is obviously more important than money. But money is still PDI. Pretty Damn Important.
The grim reality is that PSP and other serious illnesses are expensive. Families can ignore the subject until it creates a crisis or address it early. Neither is easy. In our family, we are trying to choose the second approach.
For families like ours, there is lost income. Sometimes two incomes.
I retired at least ten years early from a well-paid career, while still only in my 40s. The financial consequences were enormous. In many families, the primary caregiver must also give up work, reduce their hours or change careers. That carries both a financial and an emotional cost.
Then come carers, medication, private treatment, home adaptations, wheelchairs, beds, hoists and countless smaller expenses that steadily accumulate.
Some countries provide disability benefits and tax exemptions. They help, but they rarely come close to covering the true cost. Even securing that assistance can require lawyers, upfront expenditure and considerable determination.
I was fortunate. In fact, I was blessed in this one respect.
I worked extraordinarily hard, saved consistently and arranged insurance to protect my wife. As a result, I was just able to retire at 50 without depending on others to support us.
It is not easy. However, all those years of travel and workaholic behaviour provided us with some financial security.
I use the word “blessed” carefully. We have taken an enormous financial hit. I was also diagnosed with a terrible terminal illness in the process, which is not remotely a blessing. But we have been able to cope financially so far. Many families cannot.
The effects also spread beyond the immediate household. Children, relatives and charities previously supported by the patient or caregiver may lose that help. Family members may need to step in. Plans, inheritances and expectations can all change.
For many families, money adds enormous pressure to an already unbearable situation. It restricts choices, care and access to therapies.
There is currently no treatment that stops PSP. Nevertheless, managing it is expensive. I take 44 pills or pill pieces a day. Physiotherapy helps preserve my function, yet I have temporarily put some sessions on hold to conserve resources.
Money also creates guilt.
Patients may feel guilty for leaving work early or becoming dependent on others. Those already retired may watch with despair as savings accumulated over decades are spent on care rather than helping their children or grandchildren.
Loved ones may feel guilty for worrying about the financial consequences.
Neither should.
Some relatives may feel resentment because they have to step in. Others may be angry that an expected inheritance is disappearing.
Nobody chooses PSP or another terminal illness. Families are entitled to worry about how they will cope financially.
Guilt solves nothing. Planning does not solve everything, but it helps.
Talking early can mean obtaining sensible advice, checking pensions, insurance policies, benefits and tax allowances, deciding how care will be funded, arranging powers of attorney, and organising important documents, accounts and secure access details.
These conversations are uncomfortable. In my opinion, they are also essential.
Discovering too late that nobody knows where anything is, what assistance is available or how the bills will be paid would be considerably worse.
Money cannot be pushed off the table. Not in the world we live in.
I certainly do not have all the answers. I still have many questions to address while I can. Every family and every country will present different challenges. But my advice is simple.
Talk about money early. Talk as a family. Then talk to an expert you trust.
