Meg Henderson with her husband Jack before his stroke
In another life, many moons ago, when I was working in Cardio-Vascular Medicine, I heard a woman talking to a doctor at her husband’s follow-up appointment.
He had had a stroke and she was suggesting, very mildly, that he was somehow ‘different’.
The doctor replied imperiously, ‘at least you’ve got him home alive, you should be grateful’, suggesting that she was an unappreciative hag and making her feel guilty.
In reality though he knew her husband had changed, but he did not consider it his business to admit it to her.
I have no idea what she did after that rather cruel brush-off, but I have an inkling all these years later of what she was going through.
My husband, Jack, recently had a stroke and his personality has changed to the point where, after a very long marriage, I genuinely have no idea who he is.
Personality Change happens after any form of brain damage, as Beverley Turner, Olympic oarsman James Cracknell’s wife discovered.
In 2010 James was hit by a lorry in America and suffered damage to the frontal lobes of his brain and, as Beverley said: ‘Every moment of my life was devoted to getting James back to the person he was.’
We all do that, but the breathtaking selfishness she describes is something that many families find difficult to cope with. It is total, added to by self-absorption.
Jack was never ill, even when he was, he just refused to give into it and rode it out.
After the stroke he sat in his special chair, with vast amounts of medication laid out on his special table, telling anyone, everyone all about it.
To this day he loves nothing more than describing his every symptom, and expects the minute details of even blowing his nose to be of interest to the universe.
Not only did he become an invalid, he embraced it, it’s who he now is, and it’s heart breaking.
He genuinely doesn’t care about anyone else, only about himself, and nothing, absolutely nothing, comes before what he wants or needs.
James Cracknell’s determination to be the oldest oarsman to win Sunday’s Boat Race seemed to have followed the same selfish pattern – what he wanted. And who cares about anyone else, including wife and children?
Though the Cracknells tried to save their marriage, their split was confirmed in early April, after 17 years and three children.
At one point, Beverley said, she was afraid he was going to kill her, and after researching the subject, she realised she was not alone, that 75 per cent of couples split after similar brain damage PCs (post-concussion syndrome).
It’s a nasty little secret that the medical fraternity keeps from families – I know because I was one of them.
To put it brutally, the view then as now was that stroke victims died or we got them well enough to go home, if possible.
Jack was never ill, even when he was, he just refused to give into it and rode it out, Meg says
Either way the aim was to get them out of our wards, in a box or back to their unsuspecting families.
Unsuspecting because they were not and, I discovered, still are not told about PCs, they are simply left to cope without knowing what they are coping with.
I knew about them but even so I’m struggling badly with this person I’m looking after 24 hours a day.
Recently I spoke to a man who told me his father had a stroke three years ago, ‘and he’s turned into a right miserable, sadistic b*****d. He’s deliberately running my mother into the ground, she’ll die before he does’.
I wondered for a moment if we could be related, then I asked if anyone had mentioned PCs to the family. He looked at me blankly. ‘Go to your GP,’ I said, ‘and ask about PCs after a stroke.’
A good friend, an old colleague who is now a Professor of Medicine, remarked, ‘these things strike suddenly and they always devastate’, which was something of an understatement.
Jack had put the car away after a shopping trip, then I walked into the sitting room and found him on the floor, barely conscious.
I quickly diagnosed the problem and got him to hospital within 30 minutes, heeding the conventional wisdom to get stroke victims help as quickly as possible.
I didn’t know if he was having a brain haemorrhage or a blood clot but it was crucial to find out.
Within an hour he had regained some movement of his left side – there had been a clot on the right side of his brain – and I thought, ‘well, at least he’ll be able to talk’, a stroke on the left can Jack patients of speech.
I was clutching at straws, thinking ahead, trying to convince myself that regaining movement might mean the stroke was so slight that there wouldn’t be PCs.
It was a false hope, though the clot didn’t show up on the various tests it must have been deep in the brain cortex and the PCs would develop.
It was a strange experience watching the effects become apparent, like a bruise that surfaced and spread over time.
Gradually, though I couldn’t put my finger on it at first, I felt him almost disassociating himself from me, and a man who all his life avoided doctors and wouldn’t take an aspirin was only interested in the company of doctors and nurses.
To them he was a wonderful, plucky chap, to me he was silent, which was very odd.
Wives of post-stroke men often say, ‘he’s fine to everyone else, to me he’s a monster’, in fact I have known of some who hit and punched wives who were doing their best to look after them.
Jack had always talked and joked to a fault, he was bright, jovial, lively, sociable and always on the go, I often wished he would be quiet.
If he saw or heard something funny he had to comment and his remarks were always witty and amusing, everybody wanted to talk to him and he never let them down.
Very quickly after the stroke he became this other person, silent, slow, devoid of humour, totally selfish and, very disconcertingly, a hypochondriac.
I was no longer his wife, I became a cross between nurse/housekeeper/mother/serf. He became a child.
On ‘good’ days I’m dealing with a badly behaved six-year-old, on ‘normal’ days he’s three or four.
Just like a child he follows me about in case I disappear, not out of affection but because he needs to be cared for 24/7 and I’m IT.
There is no affection, which in a way is a relief, I would find it difficult coping with affection from a total stranger.
There is no conversation either, and if I try to talk to him he ignores me or has a tantrum, yelling angrily at me for no reason.
The only time he actually talks to me is to criticise or complain, nothing I do, give him or cook for him pleases him, he finds fault with absolutely everything.
One of the things I miss dearly is normal adult conversation. He is demanding, selfish, unappreciative and, at times, quite horrible, and that’s the honest truth.
The mantra I try to keep in mind is, ‘it’s not his fault, he can’t help it, don’t take it personally’, but that’s hard when you are exhausted.
We have no shared interests now, no arguments about politics and social issues, all he can cope with are old comedies on TV that he used to despise, and programmes about diggers, or lorries with big wheels.
And he isn’t depressed, through no fault of his own he just isn’t who he used to be. Our GP, talking undiplomatically to one of her own, said recently, ‘the problem is that you’re able to give him a professional level of care, he could go on like this for years’.
Tests have proved he has capacity, which prompted the same GP to remark, ‘pity, you’d qualify for more support if he had Dementia’.
The man he was did not want to live like this though, we talked about it often over the years, but I don’t know this man so I don’t know what he wants, apart from my constant attention.
The stroke has robbed him of many memories and all his strengths, leaving only his childhood weaknesses, which have become his strengths.
I am now at home 24/7 and the only help on offer is some form of respite, but he has a fear of being put in residential care and is convinced that respite is the first step to abandoning him, so he adamantly refuses to consider it.
It’s been explained to him that if my health fails with the constant work, lack of sleep etc, he’ll end up in residential care anyway, but children expect, demand, that ‘Mummy’ must always cope, and that is how he thinks.
Just mentioning respite makes him even clingier and, if forced on him, I know that whoever he is, this man is vicious enough to make my life more miserable, so it’s not worth it.
I have lost my husband and have been gifted this strange, unpleasant individual who every day tires out every cell in my body.
A friend said recently, ‘well you did promise ‘In sickness and in health,’ and I did, but I promised it to Jack, not to this man. This man I would never have married.
I have lost my husband and have been gifted this strange, unpleasant individual who every day tires out every cell in my body, Meg says
When I spoke to my professor friend about the policy of not telling families about PCs he said: ‘Come on Meggie, you know we don’t deal with mental stuff. People can always get a psychiatric referral.’
Not that they are told this either, of course, so I asked: ‘Will a psychiatrist wave a magic wand and make them into who they were?’
‘Well’, he said sheepishly, ‘no…’ The reason families are not told about PCs is, as ever, because, ‘that’s not our job. If they live we get them as fit as possible and that’s it’.
Quite. Women can suffer PCs too, but, as the good Prof informed me, ‘it’s been noticed that when men have a stroke they lose the controlling influence of some part of the cortex and regress to uninhibited childish behaviour’.
When these men return home their wives are left to believe that the changes they see are somehow their fault, caused by something they are doing or not doing, that they are failing in caring for their men.
Younger women, faced with losing decades of their lives caring 24/7 while often taking quite severe abuse from men they don’t know, tend to leave and, naturally, get pilloried by those who know nothing.
Older women tend to stay, either out of loyalty or lack of options. I did talk to one woman who left at the age of 65 after five years caring for a post stroke husband.
She was roundly criticised and disowned by all sides of the family but said she had no regrets, it was hard to do but she had got her life back.
I envy her but I couldn’t do it. This man is no longer my husband but he once was, so I’ll see it out – unless he sees me out, which is a possibility.
We should be doing better by these patients and their families by now. There are endless, very expensive media campaigns advising the public on how to recognise the signs of a stroke and get the patient to hospital quickly, but I now wonder if the money would be better used by something else, like Mental Health for instance.
If stroke survivors are going to be abandoned afterwards, together with their unfortunate families, I can see a case for simply letting them sink or swim – live or die.
As my son said recently, ‘it won’t matter when he dies, Dad died the day he had the stroke’. Sad, but true and not just for my family but for many, many more who suffer in silence, afraid of being trolled. I am not.