The Carer Dating Game: Being Left Without a Date for Valentine’s

This weekend is seen by much of the world as a day where relationships and love abound. My wife and I were due to start a new relationship of sorts on Sunday with our new live-in carer, but sadly, it is not to be.

I won’t go into the personal reasons why this match didn’t work – they are complex – but I do want to touch upon the stress and emotions of this “dating game.” It is a dynamic I hadn’t imagined played out this way, yet I hear it is common in so many places. It is also something few patients with PSP (Progressive Supranuclear Palsy) write about. By the time they have advanced PSP, they are often not involved in such crucial choices, leaving their primary caregiver to agonize over the decision alone.

For my wife, the news that “Person X” is not coming to start work was really tough. It was for me too, but if I am 100% honest, I also felt (and feel) a temporary relief that I have tried to be honest about both to my other half but also to myself (and those reading).

Objectively and in fact obviously, I need a carer. I am far too heavy to be pushed around by family, and I am at major risk of falling. I require constant attention and need someone nearby in case I fall or choke. More than that, PSP advances at an irregular but a very fast pace and with incredibly high probability it will become completely and totally untenable. There is simply no question that I logically want and need a carer as I become unable to remain independent. I am already slow and reliant on shower chairs, grab bars, and wheelchairs, though I remain independent regarding washing and dressing – for now, with increasing difficulty and the occasional near miss.

That all said, I won’t pretend there wasn’t a measure of relief yesterday when I first guessed he wasn’t coming (after he failed to return a message) and then confirmed it. It is for all the reasons you can imagine – what a carer signals for a 50-year-old man, stubbornness, ego, and a wish to stop the future from arriving. My wife, however, is 150% right. I genuinely tried to be an “attractive” and positive candidate in this dating game, although in these early days, our success rate is currently 0-2.

Every country differs in terms of government rules, nursing populations, agencies, and funding. Yet, fundamentally, this “carer dating game” shares DNA with the romantic one: it is big business.

To put this in perspective, the global online dating market is roughly a $10 billion industry and growing fast. While that seems massive, it pales in comparison to the global home healthcare market, which is valued at somewhere around $400 billion. I am not making a strictly fair comparison but it is enough to show that this isn’t just a game of hearts; it is a colossal economic engine involving millions of livelihoods.

Fundamentally, however, it is about the relationship between a person who is going to live in your house, be with you 24/6 or 24/7, become a part of your family, tend to your most private needs, and interact with your closest relatives.

For the carer, it is also a huge decision. They must choose which family to go to, often choosing to take themselves away from their own loved ones to provide better choices for their lives. It cannot be easy.

Success rates vary, but I know that when it goes well, it makes a massive, positive difference to the patient, the partner, the family, and the carer themselves. I have been to funerals where the person crying the hardest is the carer; such is the depth of the relationship. I have seen them standing with the family in joint mourning and grief. It is real, and it is vital.

Yet, I didn’t expect to be ‘dating’ (this time alongside my wife) at this age. In this world, dates are interviews, romance is a trial period, and the “marriage” is the long-term employment. One of our dates didn’t go well; one went well but fell through.

My Profile

Using an analogy to what little I know of Tinder (having got married way before the apps existed—and I am pleased to say I remain happily married with the best of the best!), I am a “swipe LEFT” for many reasons.

It turns out that many carers are looking for exactly what I **don’t** have to offer:

• Size: I am far too big (height and weight) and prone to falling, which limits the field significantly.
• Unpredictability: I have a progressive disease which is hard to understand, especially as I have retained my cognition and am trying to remain as independent as I can.
• Location: I live in broadly the right geographic area for carers, but in a small village with less-than-ideal public transport, whereas many prefer the cities.
• Age: I am young – 50 – which is not the usual demographic.

It seems that many carers are used to a much more predictable, older patient who may be “low maintenance”, and in cities.

I do have some advantages. I have access to some government rules regarding the pool of resources given my age and health need, and for some, I possibly fit the “curious, interesting, challenging” scale.

Fortunately, I can just about fund the costs of care. I say this somewhat defensively because I know so many people struggle. It wasn’t in my financial plan to retire at 50 let alone fund a full-time live-in carer, but I started with nothing and worked my socks off for years to be in this position. This isn’t about wealth; it is about hard work during which I gave my fair share back to society.

I believe I have other advantages: a great family and home environment where a carer would be treated incredibly well and with the greatest respect. I believe this came across in the interviews, but we lost out to other factors.

So, I have no date for Valentine’s Day. My wife, family, and friends have to make do and worry about me for longer than they hoped. I can still live under the illusion that I can remain independent, but I am annoyed that I am not getting the attention and care I technically need.

This situation highlights another factor. Due to the speed of PSP’s progression, we are forced to learn about the world of aging and illness at breakneck speed. It is a very big machine we are being pushed into, filled with huge bureaucracy.

We have now hired a private adviser who is shepherding us through the process, and she is great. This is making our lives – especially my wife’s – much easier. Hopefully, we will soon have the carer I need, although I would far prefer not to need one. That ship has sailed, even if I am clinging onto the jetty as it pulls away.

I want to make one bold statement to close this section. Given the terrible abuse revealed in today’s society (e.g., in high-profile legal cases splashed across the papers), we must acknowledge that there are vulnerable people involved in this industry, too. There are significant risks of abuse in many directions. It is critical that this industry is regulated and that people are protected. As I learn more, I worry for those involved – carers, patients, and families alike. I hope and pray that the vulnerable will be helped.

In one other development, I once again took my wife’s advice. After my frustration with the manual wheelchair, I decided to try the electric wheelchair at home again, keeping it on low-speed settings. It was such an enormous relief yesterday. Due to “freezing” episodes and my inability to look backward, I am not going to go out with it yet, but it is a win nonetheless.

I hope first of all that my disease enjoys a plateau after the recent Bell’s Palsy episode and that my semi-independence lasts as long as possible. But mostly, I hope that we find the right carer soon to take the weight off the shoulders of my loved ones and to give me the help I will sadly need with ever-increasing urgency.

For those who celebrate it—Happy Valentine’s Day.