Every day there are people who shoulder a burden of care that should leave the rest of us in awe. Not the professionals who do it for a few hours and then go home to rest – although they do great work – but mothers and fathers, spouses and grown-up children who find themselves looking after a helpless family member at home, with more or less relief.
Margaret Jacobson is one of those people. At an age when demands on her motherhood might amount to little more than wondering whether her two sons who are working overseas are looking after themselves properly, the Hamilton widow is still caring for two more sons at home.
David, 28, has a moderate intellectual disability and some physical problems that at times have been severe and could take away his ability to walk. The six-footer attends a sheltered workshop and recently began training for work in a garden center one day a week. During my visit he made cups of tea and conversed quite well, though with some physical difficulty.
"The main problem is that he is missing logic," says Margaret, hinting at her youngest son's trying determination to do things in his own way against all reason at times. He can read but has limited comprehension and cannot entertain himself. He needs constant reminders about personal hygiene and daily chores.
David's problems, however, are as nothing compared to Stephen's. Margaret's first-born, now 32, was developing normally as a baby when, at seven months, he began showing signs of what would become severe fits. The resulting brain damage has left him profoundly retarded. As well, he is autistic and does not talk. He needs help with everything, from blowing his nose to going to the toilet. For much of his life he has been prone to night disturbances but is sleeping better at the moment.
When I met him Stephen was having a particularly good day. He was responsive and showed his know-how by getting himself some bread from the kitchen. He ate all the sandwiches Margaret made him – a rare event, since feeding him has always been a major problem and he can go for days without eating or drinking, making it extremely difficult to give him essential medication.
Looking after the tall, delicate lad is complicated enormously by the fact that he can walk independently, says Margaret. "Although David helps me, it means I have to have my mind on Stephen all the time. A thump may mean that he's having a fit, because he still has lots. They can slam him forward so that he crashes into the nearest thing, his heart-rate way up." The house is arranged to minimize damage to Stephen from these falls.
Silence, on the other hand is no guarantee that all is well. When he is not sleeping, Stephen often paces around inside and outside, picking up objects which he rolls in his hands and then consumes. At 16 he had the first of several operations to remove things from his gut – including, on that occasion, no less than 30 metres of 4mm plastic tubing picked up from his parents' craft supply shop.
"I always have to think, What is he eating?" A little pile of uncooked fettuccini on Stephen's daytime couch signals an attempt to provide him with an alternative to leaves, household items and even his own hair, which he is inclined to pluck out.
One day at a time
After more than 30 years of thumps and ominous silences, of sleepless nights and days foreshortened by getting Stephen to daycare and picking him up again, of illness, operations and countless complications – and no end in sight – you would expect Margaret to be looking a bit down to it, at best resigned.
But this woman is amazingly buoyant. Habitual good humour is evident in a ready smile that easily turns to laughter, and a gentle patience in interpreting Stephen's needs as he comes and stands quietly beside her or makes a little "ee" sound. How does she do it?
"One day at a time. Things happen gradually, not all at once, and you deal with them as they come. Sometimes there are improvements and you are encouraged, other times there are setbacks. This is what the father of Baby C forgot – all he could see was one big burden and he didn't give the child a chance."
Margaret's personal resources include "a queer sense of humour – I can see the funny side of the most grim situation. And I'm lucky to live in place like this," she says, referring to the 10-acre block just outside Hamilton where she and her late husband Ted built their modest but convenient home 16 years ago. "I love beautiful things, nature …"
The rural outlook is as charming as the house is homely. Bantam chooks roam the garden and decks because Margaret has no time to repair the henhouse. Inside pet birds share the family room: a rainbow lorikeet puts on a show of gymnastics in his cage while a cockatiel takes up his perch on David's shoulder.
There are many signs of good taste and flair, although the carpets are stained and the furniture has seen better days. "You can't have things as nice as you would like when you have someone like Stephen around," Margaret says apologetically. The carpets are one reason she does not invite people to visit, although there are few enough people who can cope with Stephen under any circumstances.
With no social life to speak of – she gets out for tennis once a week and goes to church – she relies on her own "reserves". "I enjoy a lot of things, music for example, and I see and think a lot. For years I had no time to read, but now I manage a bit at night and it helps me to relax."
A Catholic, Margaret says her faith "has a tremendous bearing on things". On a holiday with David to visit her son Anthony in Australia, where he is training as an orthopaedic surgeon, someone gave her a little replica of the Pieta – Michelangelo's moving sculpture of the Virgin Mary holding the dead body of Jesus. "Whenever I'm tempted to feel sorry for myself I look at that and think, There was a mother who had a real cross to carry."
"If it was his lot, it was mine too"
Thirty-two years ago when another doctor delivered the news that Stephen would never be more than "a vegetable" and that the best thing she could do was put him in an institution and have another baby, Margaret was as heart-broken as any mother. "I went home and wept and blamed God for letting this happen to my child."
Then she got over it. "I read up everything I could find to help me understand his condition and I got on with being his mother. If this was his lot, then it was my lot too." Fortunately, she had "a wonderful husband" and, as they grew up, the help of her other boys – including an older stepson (Ted was a widower when she met him).
During the last eight years she has had hours of respite care for Stephen in addition to the nine-to-three daycare he goes to on weekdays. Despite some annoying bureaucratic requirements and a shortage of people available to look after someone like Stephen, this has allowed her to try a few hobbies and play some sport.
There has always been the option of residential respite care, but Margaret has used it only a couple of times, because the few facilities available are not safe enough for Stephen, or they are inappropriate in other ways. "There are gaps in care," she says.
It's a shame, because for all her spunk, Margaret needs relief. She admits there have been times of exhausting struggle, such as the five years following Ted's death in 1994 when she tried to keep their business going – two of them "with no respite from the shop and the boys".
She can sometimes lose her cool with Stephen and reproach him for doing what he cannot help doing. "I want you to know," she says pointedly, "that I am not the perfect mother."
There are other things she would like to have done, and some she still hopes to do – she has a workroom full of projects. "But starting family life with a Stephen puts paid to a lot of things," she says matter-of-factly.
"And really, it has not been so bad. There are little glimmers of things in Stephen, like a sense of humour. Sometimes when we are in the car he does naughty things like poking his legs through to the front seats and gets real enjoyment from our reactions. And at night when I'm saying prayers with him he looks at me so lovingly…"
To the observation that it must have been hard on the other boys, having two handicapped brothers, Margaret counters, "But they are nicer people for it, not just go-getters but truly empathetic people." Gregory, her third son, has just achieved a doctorate in microbiology, specializing in genetics. The fact that he and Anthony have chosen medicine and medical research as their profession is thanks, in part, to learning how to serve the sick and disabled from a young age.
More understanding, more value
What would have made life easier for her and the family? "More real understanding among people," Margaret says without hesitation.
One incident stands out in her mind as indicative of the problem. Often Ted would take the other boys on excursions and she would stay with Stephen, but one day they all went for a trip to Raglan. "It was a rare chance for us to have a happy outing together, somewhere safe for all and enjoyable for all."
But as they walked to the beach another family passed them and then turned round to stare – not just to take a second look at Stephen's odd walk and his dribbling, but actually to stare. "I was so upset I asked them why they did it, and didn't they know it was rude. We no longer felt normal, although Stephen was equally in his element as the other boys, bouncing along and loving his walk with the others in the sun. Other people's reactions are the worst hurdle any family has to face."
The Baby C decision, she believes, makes understanding for families like hers even less likely. It upset her that the jury deliberated for a mere 40 minutes before deciding that the father committed no crime in killing his brain-damaged baby daughter.
"It's devalued people even more. I've had years to think about this issue of valuing people and the way we do it in our society is very strange. If it comes to eliminating people of no obvious value – which it never should – you'd think we would get rid of drug addicts and murderers.
"Instead, we have picked on the innocent. The writing was on the wall the day they passed a law saying you could have an abortion if your child was handicapped. If it's all right to kill before birth for that reason, why not after? There have to be rules. We have to establish a value for life itself. A life is a life and you do what you can for it."
It was hurtful to hear the lawyer for the Nelson father refer to the man's other "beautiful child", as though there was no beauty in the handicapped child. "That about sums up the case. And yet that beautiful child could turn into an utter rotter. For me, it would be far worse to have a child that turned out bad than to have Stephen."
The implication of Baby C is that Stephen has had no enjoyment from his life and it would have been kinder to snuff it out. But even if Margaret did not know better from experience she would reject this excuse. "No-one can make that judgement for another person," she says firmly.
And if you stay long enough with Stephen to see him smile at his mother, you have to believe it.
Carolyn Moynihan is Deputy Editor of MercatorNet.