There are many forms of courage – and we often hear tales that involve bravery on a field of combat, or somebody who saves a fellow human being (or sometimes an animal) with the possibility of the loss of their own life, or, at the very least, of doing harm to themselves. There is, of course, the courage of martyrs, those who risk their all for their faith. However, there is a quieter form of courage, a courage that often comes in two parts.
Caring for somebody, usually a loved one, with long term illness, perhaps for somebody who is waiting to die, can be rewarding, but can also be an occasion where immense courage and patience are needed. The sick person also needs the courage and faith to be able to continue.
I do not give my name here as I do not wish to embarrass my relatives, although there may well be readers of this blog who will know who I am.
Seven plus years ago, my daughter in law suddenly had a massive stroke. She was 36 and a few days old. Strokes, we have discovered since, are not something that only happens to old people.
While she was in the hospital we met a girl of 17, who had had a stroke while on a school exchange trip abroad, and a young man of 25, a farmer – with muscles on his muscles, who was alive only because his flatmate had returned home early and had found him on the floor, unconscious.
After a second stroke, she had to have surgery to remove 40% of her skull following brain swelling, and she was moved to another hospital which has a specialist neurology department. During the operation on her skull, the surgeon came in to see us. He was wearing his scrubs and a worried expression. He explained that he was getting no brain response, and asked us what we wanted to do.
Did we want him to continue with the operation as if all were well, or did we want him to close up and give up. We were told that, even if she survived the operation, it was unlikely she would ever walk again, or talk again. It was unlikely that she would be able to feed herself. However, the likely prognostication was that she would die.
We asked him if there were anything we could do. He said: “I don’t know if any of you (we had some friends with us) are religious, but if you are, then I should start praying.”
My son said he had watched a film with his wife only a few days before. I have no idea what it is called, but it starred Keira Knightley. After watching the film, his wife had said that she did now want life support to be turned off, nor did she want to donate her organs. As a consequence, he said the surgeon should carry on.
We prayed as we had never prayed before. Half an hour later, the surgeon returned. “Well,” he said, “One of you has a hotline to God. I am now getting a brain response, and I shouldn’t be.” She was taken to intensive care and we were told she would possibly be unconscious for months.
Each day we would go to the hospital and sit by her bed. She lay there, losing weight by the day, despite the intravenous feeding. Tubes went into her arms and down her throat. Her breathing was being assisted. The day after the operation we were told that the bone of her skull had been put in a pocket in her abdomen to keep the bone alive, since there is less chance that the body will reject a patient’s own bone.
We were also told that she was pregnant. Two days later she miscarried. I said that she should be told about this immediately she came round – the friends who had been with us said she would be too weak. I opined that a doctor would probably come to her bedside with a flock of students (it is a teaching hospital) and talk about the case to them, and this was no way for her to find out.
In the meantime, we talked to her, and I brought in one of her favourite books and read to her. Only one of her own relatives came to visit. He was extremely unpleasant and kept asking questions about their recent house move, and also whether she was going to leave him anything if she died (this at the foot of her bed!). He was eventually asked to leave the hospital and has not been seen since, although he has told others that he visits.
After eleven days, she eased into consciousness. It was not like the movies! She is a woman with some spirit, which – to some – means she is difficult! The tubes were removed and they began to give her thickened liquids. She hated this. When asked what she would like to drink, she answered (croakily) “Gin!”
She was far from her old self. Half her head was missing and as the brain swelling diminished it looked as if her head had caved in. Her head had been shaved on one side, and the log hair on the other side was matted and tangled. She was moved back to the first hospital she had been in.
The ward into which she was moved was small, but it had a door that opened onto a garden. We were allowed to bring her dog into the garden, but she was still incontinent, could speak little, and looked awful.
We would take her into the garden (it was a marvellous summer, weatherwise) and she would pick up a ball with her good hand, but by the time she had raised her hand she had forgotten what she was doing, and so would just keep her hand held back, thus confusing the dog.
At this point, relatives and friends would visit, often in tears. While I can see why, this did not help. We were having enough trouble keeping it together ourselves.
After six weeks, she was returned to the other hospital and her skull was put back together. The surgeon did a wonderful job, but the results are evident as there is still a slight indentation. During all this time, there were problems at the hospital as there had been a clerical error when she was first admitted – and the hospital did not realise that her local hospital was not the one she was in.
More than four months after the stroke, she was finally sent to her local hospital. It was like chalk and cheese. Staff were helpful and kind. The place was more organised. She had more physiotherapy. Just before Christmas the hospital announced that she should have an ICD fitted, since it had been discovered that the stroke had been caused by Hypertrophic Cardiomyopathy (Sudden Death Syndrome).
An ICD is a combination of a pacemaker and a gadget that kickstarts the heart if it stops. Shortly after it was fitted, they said they would be sending her home for Christmas. She had been allowed home for an afternoon, then a day, then a day and a night. Since they had only taken over the house five days before her stroke, there was hardly any furniture and the heating and hot water system worked when it felt like it.
All of the furniture was in their old house. My son moved some of the furniture down, so that at least we had a chair for her to sit in. She came home on the 23rd December. On the evening of the 24th, her ICD went off 16 times in less than an hour. She was taken to hospital as an emergency. I went in the ambulance and my son followed in the only vehicle we had – a small furniture van – with the dog sitting on the front seat as we could not leave her.
Following the ambulance, he was stopped by the police for exceeding the speed limit. He explained –and the police waved him on. We were in intensive coronary care until 3.30 a.m., when they said we should go home and they would call if we were needed.
We sat shaking and drinking tea until 5.30 and then went to bed. Up by 8 a.m. we had breakfast and returned to the hospital. We spent the entire day seeing doctors and sitting by her bed – nothing was open and we could get nothing to eat. Finally, we pooled our change and each had a cup of brown liquid that purported to be coffee. We had enough change to get a bag of nuts – we put the money in and potato chips came out of the machine.
By the time we got home at 9.30 p.m. we were starving and exhausted. I rang round to explain what was happening, and told my mother that I would not speak for long as we had had nothing to eat and so I was getting dinner. My mother said: “oh, you should have made sandwiches!” I am afraid I had not thought of this, given the circumstances.
Finally, she was sent home at the end of February. She had been in hospital for seven months. The house was still a disaster area, not helped by it being both a huge and historic house, and in need of renovation. She could not follow a film or tv programme and spent most of the day rocking backwards and forwards.
Three times a week she would have physiotherapy, then there were the medical appointments. Sometimes there were three appointments on the same day. Until she left the hospital I had been working part-time, so would go up on Friday evening (it is a bus ride to the terminus and then an hour’s train ride), or sometimes on a Saturday morning, and leave on Tuesday evening. Ready-cooked meals would be left in the fridge and freezer.
When I finished work, at about the time she came out of hospital, I spent even more time up there. By this time, few people visited or offered any help. It seems that most people can cope, even if tearfully, with a patient tucked up in bed under nice white sheets, but the reality of somebody with brain damage who cannot walk or use one arm is more than they can stand.
The years have rolled on. The house is more or less finished and furnished. My daughter in law has physically improved more than was thought possible. She can walk by swinging her leg from the hip (the only movement she has in that side) and using a walking stick. Her arm is still almost useless, despite enormous amounts of physiotherapy. She can usually dress herself, but has to have help to bath and will occasionally scream for help getting dressed (and I do mean scream). She has determination, I have to say that for her.
She has also found her faith sustaining – she was brought up Presbyterian, but with a lapsed Catholic mother. When grandma visited, she was marched off to the Catholic church. Both she and my son now attend an Anglican church. This has saddened me, but I have to say that the small rural congregation there have been welcoming to us all and have given more help than either family. A few friends visit, but we rarely see any family.
While my own faith has occasionally faltered, it is only this that has dragged me through this time of trial. Despite all medical advice, the daughter in law was determined to have a baby. She still cries for the child she lost after the stroke.
She had 3 other miscarriages and then, miraculously – and after a difficult pregnancy – she had a little girl. 10 weeks early, she was very tiny. Now she is a beautiful little girl, chatty, bright and ready to try anything. They have become celebrities in a small way.
My daughter in law wrote to the brain surgeon to thank him for his help and to send a picture of the baby. He was so pleased, since it is usual for people to complain, but not to thank. He is, it seems, also a man of faith. He asked first, and then passed on the details to the PR department at the hospital where he works. The story was taken up by the local and then the national press. Then the local tv channel made a short piece, then another piece went out on national tv.
My daughter in law was awestruck at how many people started coming up to them in the street to talk about it. She says that if her story gives hope to others, then it is worthwhile.
There is the other side of the story. My son no longer has the girl he married. We were told by the neuro-psychologist that one in four husbands whose wife has a stroke of this magnitude is gone before the end of the month, two in four in six months and three in four in a year.
He is not a saint. He has to work to keep everything going. He works at home and has his own business – my family don’t understand this. Often he has to work at night when his wife is in bed. He can afford help in the house, but I have had to spend a lot of time there, especially since the baby arrived.
Now she is at nursery two days a week, I will have to be there less, but – for reasons I don’t understand – this has caused rifts in my own family.
He rarely gets a night’s sleep, as if she wakes up he has to be awake too. He has to take her to many appointments. She has become self-centred, in that she expects people to jump to her demands immediately, otherwise she sulks. What ever it is in the brain that deals with empathy no longer works. Nobody else is allowed to be ill.
I have had severe back problems (post-operative) and three eye operations in the last four years. The back pain is continual and, as you may understand, I am not young. My son has developed back problems, which the doctors think are caused by hefting her around.
She is o.k. to speak to on a one to one basis, most of the time, but she can be very rude and abrasive. Her short-term memory is worsening and she asks the same questions repeatedly. She cannot do much with her child, she has, for instance, never been able to lift her and is scared of cuddling her. This is slightly easier now the child is 2.
She has mood swings and expects 100% of the attention 100% of the time. She sleeps for hours in the day time, and then wakes up not quite knowing where she is and shouts at people. She did nothing in the house, not even making herself a cup of tea, for years, but now insists on doing things. She will wash up (they have a dishwasher, but she insists on washing things by hand), but does this badly, so we have to redo it.
She can be totally unreasonable. Occasionally, she has hallucinations due to the combination of drugs she has to take. She has spent an average of two months a year in hospital since she first left hospital after the stroke.
People see none of this. They perpetually tell us how wonderful she is. Recently, however, I have noticed that even those people from the church who used to come around to the house, no longer do. One said to me: “I don’t know how the two of you stand the way she treats you.” One does not wish to rise to this, so the tendency is to smile and say: “oh, it is the illness.”
This whole experience has given me new insight into the lives of those who have looked after relatives, sometimes the elderly, sometimes their children, for many years. Many get few thanks, either from those they care for, or from others. Many suffer both financially and physically. They are under continual mental strain.
Saying to a carer that they are doing a wonderful job is the first step. Offering help – a shoulder to cry on, “babysitting” while they go out for a break, shopping, or dropping round with a cooked meal or a cake, are so much appreciated. Most of all, remember them, and their charges, in your prayers and remember the parable of the Good Samaritan.