I have reprinted Jackie Ashley’s excellent report on caring for her husband Andrew Marr following his stroke. I saw Jackie at Cambridge Wordfest earlier this year and asked how Andrew was, and she replied that he was doing well and getting lots of physio.
As someone who is currently helping to care for an elderly mother and father-in-law in different towns, while holding down a full time job and about to embark on writing a new book, I can relate to much of what she says. It is exhausting, frustrating and there are never enough hours in the day or ‘me time’ left.
I am delighted to hear about Andrew’ progress, and boy, wasn’t he lucky to be married to someone as wonderful as Jackie!
This is her story in today’s Guardian:
We all have our terrors – cancer, a plane crash, being knocked off the bicycle by a speeding lorry. But so often it’s the unexpected that gets you. I thought a stroke was something suffered by people who were either very old, or overweight, or heavy smokers. Yet back in January my husband, Andrew Marr, who is none of those – really, 53 is not old – suffered a very serious stroke. He went from being a super-energetic, fit, over-worker to a half-paralysed invalid. His life had totally changed, but of course, as many kind friends have pointed out, mine had too.
Six months on, after brilliant support from doctors, nurses and physiotherapists, he is back on his feet and returning to work. I have re-entered the political world, but with a different perspective on life. Since so many people have been asking me what it’s like to have your life turned upside down by an unexpected illness, here are six random thoughts from my six months off.
First, although I knew a lot about disability and about caring (my father, the late Lord Jack Ashley was totally deaf and suffered from Parkinson’s), I had never been a full-time carer. It is, above all, exhausting. It can also be extremely monotonous and frustrating for both the patient and the carer. Every single one of life’s daily routines takes twice, if not four times, as long as it used to, from getting through the shower to putting on shoes. Physio routines, which need practice every day, require hundreds and hundreds of small repetitive movements.
Friends would ask repeatedly why I didn’t “just get someone in to help”. I did at first. Yet, as many carers will know, it’s not that simple. You book someone to help with the morning routine at seven each morning and suddenly the patient wants to get up at six. There’s a physio appointment; so a complete change of clothes is necessary in the early afternoon. The times of the appointments change every day, on the day, so you never quite know when a lift will be needed … so you either have someone in full-time attendance; or you do it yourself. Then there’s the additional stress of not knowing, because all strokes are different, how long and how full the recovery will be.
I am no Florence Nightingale and there’s no damn halo visible when I look in the mirror: this is just what any decent relative would do for someone who is physically disabled. One stroke victim wrote to tell me he thought that carers for stroke sufferers all experience some kind of post-traumatic stress disorder. I wouldn’t go that far, but it can be tough, and carers everywhere need support and breaks.
Second, the NHS is wonderful, wonderful, wonderful. The doctors saved my husband’s life, the physios have restored him to strength, and for most of them nothing has been too much trouble. But the inflexibility of the system is staggering. I’ve been contacted by many, many stroke victims and the general view is that hospital care is excellent, but there’s very little support after that. Daily, intensive physio and occupational therapy in the hospital are suddenly replaced with a visit once a week, if you are lucky, from the community services. Given that so many stroke victims, and others who have suffered neurological injuries, would be able to get back to work and look after themselves with better rehabilitation after leaving hospital, this is surely a false economy.
Third, returning to Westminster life, I have never been so frustrated at the gap between the arguments in the House of Commons and the real issues in the NHS. I came back just as the Keogh report into failing hospitals was being debated. All I heard were politicians on both sides slagging off each other – it was all “it’s your fault”, “no, it’s your fault”. For those thousands of people and their relatives currently in hospital this is the last thing we require of our MPs. There are huge issues of priorities and management and accountability to be sorted out, and rather than mudslinging, politicians should be working together to do this.
Fourth, my re-entry into the world of Twitter was an unpleasant reminder of just how nasty the public debate can be. It coincided with the 24 hours of rape threats suffered by Caroline Criado-Perez for giving a radio interview from a feminist perspective.
If you follow Twitter regularly, it’s easy to believe that many of our fellow citizens are cruel, mean, misogynist and foul-mouthed. But suffering a serious illness means that you see the better side of human nature. Countless acts of kindness, messages of goodwill – including on Twitter – and examples of supreme bravery will stay with me for ever. During his rehabilitation my husband was treated for a while at the Douglas Bader wing at Queen Mary’s Hospital, Roehampton. There were scores of amputees, all coping with appalling disabilities with immense fortitude and often a beaming smile. Truly, we are better than the Twitter trolls.
Fifth, from talking to the scores of people I met in hospital, and the vast postbag I have received, it’s clear that for many women these urgent caring tasks for close relatives come out of the blue. Sometimes they last for years, sometimes, as is my own case, it’s just a matter of months. Yet the world of work is not set up to deal with this. Too many older women lose their jobs after a few months off to care for an elderly parent, or other relative. Just as we now accept that women need to take some time out for childcare, surely we should be able to re-arrange the world of work so that “carer’s leave” becomes a normal part of all our lives, men included.
And finally, and perhaps most important, I have become aware of just how fragile life is. We walk in the sunlight, ignoring the shadows. In the blink of an eye lives can be changed utterly. Every year 150,000 people suffer a stroke, and 50,000 of them are still of working age. It can happen while leaning back in the basin at the hairdresser, or even turning your head in the car to look out of the rear window. This is not to say it’s best to spend one’s life worrying about what horrible illnesses or accidents may strike. But there is nothing like a near-death experience to put life’s little annoyances into perspective and to learn to live each day for the day.