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There have been, Michael Maslinski jokes, some unexpected reactions when he tells people that he spent nine years living in a care home so as to be with his beloved wife, Maggie – diagnosed with dementia at 60 – right up to her death in April 2024. “I have had better treatment from doctors when I go to see them, because they like what I did.”
His unusual choice has come to define him, concedes the 72-year-old, but at the time it felt like the natural thing to do.
“I just thought, why would I live anywhere else but with my wife? I couldn’t bear the thought of packing Maggie off so I was ducking that terrible decision.”
Just 20 months since his wife’s death, he is publishing What Would Maggie Do? In many ways a moving and powerful tale of the triumph of love over the ravages of dementia, it is also – self-consciously – an insider’s account from his unique vantage point of the failings of our care system.
A banker by trade, three decades ago Maslinski began his own strategic consultancy business, developing a fine-tuned eye for uncovering the failings of businesses. No detail escaped his attention in his years in the care home. He was based there four days a week, and travelled up to London the rest of the time to work.
“Frankly I paid a fortune for the place where we lived, but it was still such a battle.” That battle was not, he stresses, against the individuals working in that care home who “were mainly wonderful, which is why I decided not to name it in the book”, but against the system.
“I feel that I had to do something to change that system, so people in the future don’t have the same battle.”
Advocating for reform
The result of those years at Maggie’s side, especially when the families of other residents had all gone home, has produced his agenda for reform. High on it is restoring the legal rights of residents’ loved ones to make the decisions, rather than being forced to defer to the professionals.
At one stage, as he describes in the book, he was at his desk in London when he received a call from the home. “It was someone telling me they were moving us and our furniture upstairs to the floor that was restricted to people with severe dementia. It was the first I had heard of it and I was living there.”
His reaction tells you all you need to know about Maslinski. “I wasn’t having it. I will never get to the bottom of how it happened but it was something to do with a mental health team coming to see Maggie without even informing me.”
He can be, he freely accepts, “forceful if things really matter to me. I see something that needs changing and get stuck into it.”
But, he adds, he didn’t just blow his top. Instead, he stood his ground as the person who knew Maggie best and therefore what was in her best interests. “And the care home eventually apologised to me. We were still living in the same flat there eight years later.”
There is no note of triumph in his voice. At times, he says, the fight could border on overwhelming.
“I’m not going to say it almost brought me down, but there were moments when I felt extremely pressured, agitated, angry. The system that was supposed to be there to protect and look after my wife was actually acting against her best interests.”
As we are talking, we are surrounded by Maggie. This large flat in a historic country house conversion in green fields north of the capital – the couple’s treasured country retreat, pre-diagnosis, from their high-flying careers in London – is now a shrine to their 28 years of happy marriage.
“There were essential parts of Maggie’s character that shone through right to the end: the glint in her eye, her undimmed sense of humour even when she couldn’t speak, the strength of her presence and her personality. And I was so fortunate that she continued to recognise me.”
He guides me round the sitting room and points out the paintings she chose and collected, and the tables and chairs that went with them during their years in the care home. Now they have been returned, they are, he apologises, making the place cluttered.
Every surface is full of framed pictures of Maggie: on their wedding day in 1995 (when both in their mid 40s, too late he says for them to have children); on a trip to the Taj Mahal; in their old holiday bolt-hole in Le Touquet, France; or entertaining at their London flat overlooking Westminster Cathedral (now sold).
“I first met her over dinner.,” says Maslinski. “My brother [who worked with Maggie at a large professional services firm] introduced us. Nothing happened.”
Were they being set up? “Yes.” He smiles bashfully. “I probably was slightly too shy for it.” But fate was shining on him – on both of them. “When we met again a few years later it all happened very quickly. It was all very obvious and we quickly got married. We were both Catholics.”
With hindsight, he wonders if, in her early 50s, Maggie had some intuition that she wasn’t quite herself when she decided to retire early from her job. “She began to lose a bit of energy, but then you do.”
Reviewing the options
As she neared 60, the signs of dementia were accumulating – “when she got lost at the railway station, when she got lost driving to Le Touquet which she knew like the back of her hand.”
Did he raise his concerns with her? “There were occasions when she was trying to tell me something and I brushed it aside. I thought it was age, menopause, whatever else. I told her ‘It could happen to anyone’.” The pain in his voice is visceral, but Maslinski has no grounds for self-recrimination.
Then came the moments when, several times, she couldn’t remember the word for keys. On her 60th birthday, “which was a hell of a party, she would normally have made a speech. She could be witty and amusing off the cuff. But she didn’t. And I knew then that she knew.”
They went together to the doctors. When the diagnosis came, “her first remarks were ‘I have had such a wonderful life to date that I cannot possibly complain’.”
He gulps a bit as he repeats her words. He is a man of a certain generation and background (his parents were in the army and MI6), brought up to keep emotions on a tight rein.
For four years, they managed at home, but Maggie’s speech was going and she couldn’t be left alone. The care home they chose was brand new, luxuriously appointed – “more like a five-star hotel” – and he paid more for her to have individual care seven hours a day when he wasn’t around to keep her stimulated.
“That was the first big issue. I expected continuity of care, but they kept changing her carers. Dealing with strangers made her agitated.”
The home’s solution was to medicate her – in other words sedate her – “but that didn’t address the real problem.” So, he drew up a list of 10 carers who were the only ones allowed to work with his wife.
And the management accepted it? “By then,” he points out, “I had already made friends with the CEO of the group that ran the care home.” Such connections are enviable, but not available to most people - and many families with relatives in care homes find complaining often makes no difference.
“Hands up,” he replies. “Not everyone is as equipped as me to take on the system, or has my force of personality, or the money and the contacts to get my way. But despite the privilege it was still so difficult. That’s why I am writing the book – to help others who are not so privileged.”
Other items on his reform agenda for care homes include banishing what he describes as an entrenched mindset in the way they are run, characterised by the mantra “the system is the system and this is the way we do it”. Running in parallel is an aversion to risk that can be blind to the individual needs of the human beings supposedly being cared for.
“The most obvious example with Maggie was the mobility issue.” He believed passionately that she should remain on her feet for as long as possible. “She was physically robust and strong. Walking is so important for anyone with dementia because, as your brain stops, you have to have something to pump adrenaline through you.”
Every day when he was there (and with a hand-picked friend when he wasn’t), Maggie would go walking, initially in the local countryside, latterly in smaller circles and accompanied by carers. But it only continued for so long because doctors and physios told him there was a risk of Maggie falling, that sometimes the way he helped Maggie out of her chair was “illegal”.
“‘Stay in a chair all day and die!’ If you don’t do anything with your mind or your body, you fade away. Scientific research backs it up,” he says. Indeed, he has been told subsequently by experts that his efforts to keep her walking extended Maggie’s life by as many as five years. “We only stopped doing it a year before she died.”
Yet he bears no grudge against the professionals he challenged so repeatedly. Quite the opposite. He praises them. “People find it very difficult to get outside the box. They are more comfortable ticking those boxes than they are making judgments, which is why I am proposing introducing something allowing people to adapt and override the system.”
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He wants to see those with lasting power of attorney – usually relatives – treated in care homes as the ones who make the final decision about their loved one’s care, albeit after listening to the expert advice. “The professionals at the moment get confused if the power-of-attorney person doesn’t buy into their system.”
Could this be a recipe for chaos? “In the financial services industry for the management of money, you are asked what risk you are willing to run – high, low or medium. That could be applied here. What risk was I willing to take with Maggie? I listened to the professionals in the same way that Maggie would have listened to them, but then made the decision.”
Which is why he has called the book What Would Maggie Do? “I knew my wife, they knew their subject. What tends to happen is that decisions get made by the doctor and the care-home nurse. No debate, no discussion, no knowledge of the person.”
Sometimes, though, the health professionals in the home may worry that their family is either not comfortable with making decisions about their care, and want to be told by doctors and nurses what to do, or don’t have their best wishes at heart.
“All of this,” he agrees, “does touch on the assisted dying debate [currently going on in Parliament], where I have my views.
“Apart from my Catholic views, I saw myself many times, in my years in the care home, families encouraging their relatives to move somewhere cheaper. And if they are doing that already, what might they do if we had assisted dying?”
But, he adds, he doesn’t want to “go too far into all that”. It is not the subject of his book.
The past 20 months since Maggie’s death have been, he confesses, “really, really tough, but she would have wanted me to get on with stuff. And that, for now, means changing the system in our care homes, with my book my calling card.”
What Would Maggie Do? is published by Unicorn on January 14
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