Stroke: Who Cares? - The stories of five carers

Introduction

This book was written by the five-strong Stroke Carers Writing Group, each of whom was, or had been, the principal carer for a close relative who had suffered a stroke. It aims to reach out beyond the group to other people in the same situation.

The group met to talk and then write about a shared experience which they all they knew about from the inside because they had been through it. No professional expert, however skilled and caring, can speak with the same knowledge and authority as someone who has actually looked after a loved one who has had a stroke. The five stories are each very different in style and approach but all are lively, moving, immediate and informative.

Becoming a principal carer changes your life. It has a profound effect on your work and your financial situation. Irene and Guy gave up work to become full-time carers. As well as being a carer, Joan had to take two jobs to make ends meet; she couldn’t have managed if her son Nick hadn’t been able to stay at home with his dad.

The carers all found it very helpful to be part of a group and came to see things differently. They got a lot of support by sharing their experience and feelings with people in the same situation, though some felt at first it was disloyal to talk about a loved one behind their back.

One or two were dubious at first because they had very little experience of writing and did not think they would be able to write very well. But although it was hard work on occasions they found a great sense of relief; just to write all your feelings down and get them out of your system can help tremendously.

Georgina tried and failed to start a support group. There is a need for an organisation to facilitate the setting-up of small self-help groups of stroke carers. Initial help would be needed to get the group going but thereafter the members could run it themselves. Writing is therapeutic, but of course that need not be the main aim. It is valuable just to meet as a group, even if it’s no more than having some time out from the daily responsibility of caring, in the company of people in the same situation. At least you can have a laugh and let your hair down a bit with people who know exactly what you are talking about. They’re the ones who know the practical problems too, and together you can act as a pressure group to make sure you get the help you need from the NHS and other agencies.

There are problems when the stroke person is not fully responsible for their actions. Attendance allowance should be paid to the carer. Paying it to the stroke person directly, as in the case of Doreen and Guy, can only lead to complications if the stroke person hasn’t recovered sufficiently to be responsible with money. Where the stroke person can’t write or take independent decisions about money, it is a good idea to apply for power of attorney. The stroke person can then place a witnessed “mark” or cross on a document which may (for example) change their personal bank account into a joint one. A joint account means that should the stroke person die there will be no need to wait for probate for the funds in the account to be available.

Irene was asked to sign a paper admitting her husband to residential care, when all she wanted was enough support and advice to look after him at home. Conversely, it is wrong for the family member to be pressured into taking the stroke person home when they are really not able to cope, and they should not be made to feel guilty. This should be discussed when the stroke person is ready to be discharged from hospital.

The return from hospital can be a time of isolation and desperation. There is the feeling “who can I turn to?” This is when carers need full support from the health and social services. They have to learn about the stroke person’s needs and rights. They need to know what services and benefits are available. They also need to be shown how to cope in practical ways, such as lifting. This process should ideally begin before the stroke person comes home; it could be taught by the nurses on the ward, with the carer joining in some of the hospital care, where appropriate.

Here the work of the Homeward Rehab Unit at the Brighton General Hospital is a model, and we are dismayed that there have been some cuts in its resources (see Guy’s story), as well as a reduction in the role of volunteers, who were able to do things that nurses had no time for, like taking patients out. And the learning-to-cope process continues at home. All the carers who know them speak very highly of the Stroke Rehabilitation Community team; but have they the resources to visit every carer?

It’s also important for carers to have the right information about the nature of stroke, its effects and the best strategies for improvement. Every stroke causes damage to particular parts of the brain and this will have a different effect in each individual case, though of course there are many similarities between one person and another, so there is a lot of knowledge and experience to share. Stroke people are not suffering from an illness which will cause them to deteriorate; the brain damage will not “spread”. On the contrary, as long as they have enough stimulus and motivation they will find new “pathways” around the damaged areas. In most cases a stroke person can only get better!

The need to start working with the stroke person as soon as possible cannot be stressed enough. Don’t listen to people who say “Oh, she can’t talk, there’s no point in visiting her in hospital.” The stroke person needs continual stimulus and communication from the outset; great strides can be made in the first few months.

But this needs to be kept up when they have returned home. Our stories show that, whatever the doctors or therapists may say, people continue to make progress for months and years after their stroke. New carers need to fully understand how important it is never to give up on the person who has had the stroke. Persistence is the key to recovery.

On the other hand false expectations can also be damaging. Karen was told to expect a full recovery and believed that her mother would soon be her old self again. In the event this was extremely misleading. She had no idea that her freedom was going to be so drastically curtailed for the foreseeable future, and this has given her painful feelings of anger and resentment. Such feelings are understandable, and to some extent unavoidable, but would they have been so strong if her hopes had not been falsely raised? A few casual words can do a lot of damage.

Doreen’s was an opposite case. Guy was told she had “no hope”. A less intelligent and self-confident carer might have been devastated by these words and have been tempted to give up altogether. So with Irene: when Micky came home from hospital she was told there was “nothing more to be done”. He was not expected to speak again. If these two carers had believed what they were told and not given their loved ones the unstinting encouragement and stimulus that they did, Micky and Doreen would have been unlikely to make the remarkable recovery they have.

The carers who wrote this book had obviously been coping successfully with their role, though it was a hard struggle. But not everyone has the resources to manage at home and we would not want the stories in this book to be thought of as a model that every carer has to follow. Stroke people tend to become very much the centre of their own little world, they may be unable to show affection or to say “thank you”, they may take the carer for granted and be quite unaware of his or her feelings of anger, frustration or distress. They may need the kind of constant attention and nursing that is very difficult to give in the home, especially if you are single-handed. A lifetime of caring can destroy a carer’s health and leave them alienated from their loved one, full of guilt and the sense of a failed life.

All too often people’s sympathy goes to the stroke person and not to the people close to them whose lives have also been devastated. But who cares for the carers?

Me and my shadow
by Irene Player

The day it happened

On January 10th 1989 my husband Michael, at the age of fifty-five, suffered an aneurysm in the head. The day it happened had been a very happy day for us, both with a day off work.

We went out and bought a new kitchen. After much saving we had made it, a new kitchen was something that Mick really wanted to do. We had lunch out and walked along the sea front. Mick had his usual rest in the afternoon to be ready to work all night as a taxi driver. Mick was a taxi driver in Brighton for thirty-eight years. He was not unwell at all and had had no recent cold or any other problem with his health.

We said goodbye and off Mick went. In a very little time Mick came back into the house, which I was not surprised about, because he had so many times forgotten his drink for the night or wanted new batteries for his torch, just little forgets and getting things together for work.

When I looked up and saw Mick he said “Phone the doctor, something is the matter with me, something hurts real bad in my head.” He needed help to stand. I went to him, and as I held him he was sick everywhere. So I said “Best to lie down Mick”. I helped him undress and go to bed, but he was still being very sick. I phoned the doctor, the time would be about six or seven o’clock. I phoned my son Brian and my daughter Debbie to say dad was not well, I was so worried. Mick was still being sick when the doctor came at about nine.

The doctor said Mick had a virus and when he stopped being sick to give him a tablet, which he said should settle him for the night. While I was seeing to Mick, still being very sick upstairs, the doctor left, calling out to me that he had left a letter on the side for me to give to our doctor the next day.

After hours of being sick my husband went to sleep and I myself went to bed. In the morning when it was still dark I woke. Mick was very quiet and still, instead of snoring his head off as usual, and his face had no colour. I knew things were not right with him. I phoned our doctor’s to ask for a visit before the start of surgery. I was told that the doctor would be coming and that they had a letter left by the doctor who had seen Mick the night before.

I phoned every hour. Our doctor phoned me back at twelve o’clock asking if he still needed to visit. I can remember saying to him “I have been asking for you all morning”. I went back upstairs to be with Mick and the door bell rang. The doctor had come as soon as I finished talking to him. He threw back the covers on the bed and said “May I use the phone?” He phoned for the ambulance and then told me Mick was unconscious and he thought he had suffered a brain haemorrhage.

We went to the Sussex County where Mick had a scan and was taken to the Neurological Centre at Hurstwood Park for a four-and-a-¬half-hour operation, and then he was taken to the ICU (Intensive Care Unit) and put onto a life-support machine still unconscious. The sur¬geon, Mr Walter, said he had only a one-in-ten chance. My son and daughter were with me at the hospital and my daughter through floods of tears said “What a shit of a day”.

Hurstwood Park & Bevendean

The next day Mick’s head had swollen so much the talk was that he might have to go back to the theatre but it turned out not to be necessary, thank God.

On Sunday 15th Mick was taken off the machine and was as well as could be expected. On the following Tuesday Mick became very tired and had a trachy op to his throat but by Wednesday he was very ill and was put back on the ventilator. On Thursday it was unbelievable how well he was. On Saturday 2 February Mick started to wake up and the weekend was a great lift to me and my family. On 23 February Mick was taken off the machine and had a good steady week. On Monday 30th when I was helping to wash Mick he took the trachy out himself and gave it to the nurse, who then said “Well, that’s it, he has made up his mind he has had enough of us.”

At first it was very frightening because Mick did not understand what had happened and did not remember us, his family, although we had played tapes to him all the time he was unconscious and never left his side more than we could help. His first sign of waking was when his grandchildren were calling to their granddad to wake up and take them to the park. You can’t imagine how I felt when Mick opened his eyes. You really don’t know whether to run out of the room or not, it’s such a surprise. But that was the beginning and the next morning he smiled at Brian when he went into ICU at six o’clock to see him. This he did every day, once he started to go back to work, and even now Brian is Mick’s strength and the love they have for each other is wonderful.

On March 8th Mick left Hurstwood Park and was taken to Bevendean Hospital where he was making good progress, everybody doing so much for him. We will never be able to thank the hospital staff enough for the help Mick was given and through all our bad days and prayers things were looking much better.

After being at Bevendean for three weeks he was able to walk a little and on March 27th, the third weekend, he came home for a day, but he had no idea where he was and when he was told he could not remember. He was not aware that he was home. The following weekend Mick came home for two days. He still could not remember even the road but when he came into the house it came to him and he knew that it was where he lived.

Coming home

During Mick’s first week at home, one day our daughter Debbie walked in and Mick just got up and went to her and cried and cried. By now he was beginning to remember us.

The day Mick left hospital I was told a lady would be coming along to see us to know if she could help us in any way. To this day she still has not come. So we started at the beginning and at this time Mick called me Mum. I suppose because he heard the children call me Mum he did the same.

We started with A,B,C and 1,2,3. How to wash and feed yourself, comb your hair, go to the loo, dress yourself and speak. We worked every day together when Mick was most awake. Then our first appointment came for Mick to go to speech therapy. On the day, I had to wake Mick to keep the appointment. An ambulance picked us up, but when we arrived at the hospital it was to be told that the speech therapist was not there and so our first visit was a complete waste of time. Mick also had to go to occupational therapy and physio so we were at the hospital most days. But the day would come when it was speech therapy only, with work to do at home as well.

If it was possible it would be nice for members of the stroke person’s family to be included once he has reached the homeward bound ward. It’s very hard when you have never had to deal with a person who needs a lot of help. Once you are at home by yourself, you are the only person who has to deal with everything, and you are so worried about the stroke person you just can’t think straight.

It would also make the homecoming less of a worry if you could be told what help would be available and see the things which could be made available to you, for helping to care. I’m sure lots of people would be able to have more help if they knew who to get in touch with. It seems that some people get a lot more help than others.

The worst thing I was told when Mick was about to leave hospital and go home was “There is nothing more we can do.” Why don’t they say “Keep going and things should improve, but it takes time”?

Friends, helpers and family

If you have broken a leg, because it’s in a snow-white plaster and everyone can see it, people come to say “How are you and how did that happen?” But it’s different when a person has a stroke. People seem to just look and never seem to pass the time of day. It is even harder when a person you know walks past without a “hello”. You know who they are and how long you have known them, maybe worked with them, but you just can’t call out and say that name. People just don’t think. Once the visiting in hospital is over people just seem to fade away.

Our circle of friends is much smaller now but we do know they are true friends and have stood by us and are there at any time we may need them. Having such good friends has meant so very much.

Colette and Phyllis, the two volunteers from the Volunteer Stroke Service, came to be good friends too. They started with Mick after he’d been home for about six months, when he stopped going to the hospital as an in-patient for OT, physio and speech therapy. Then he had three heart attacks, which put him right back, and it was another eleven months or so before they were able to come back and work with him, Colette for three months and Phyllis for two years. The important thing with volunteers is to get somebody, if at all possible, with the very same sort of interests as the person, and key into them. I think it makes people feel valued, this interest and understanding.

Our son, daughter and grandchildren are Mick’s greatest joy in life. The time spent with the family, I’m sure, is what makes his life worth living and their love and the way that they show they care mean the world to him. His old smile comes back when they are around and he still gets very upset when they go. Even to speak on the phone to them brings Mick to tears. The feeling still stays with him that he may not see them again and on the not-so-good days he’s sure he is going to die. I am not able to change this way of thinking with Mick, it just keeps coming to him.

Day by day

Imagine how hard to make people understand you, think of a day when you cannot speak but can’t make people understand you any other way. How can we know what this person feels? You have got your bus fare, you know how much it is and where you are going but cannot say how much or where you wish to go. All day long this is your problem, with so many things, putting the right name to the clothes you wear, or what you would like to eat, it’s endless. Time is needed for people to listen and help clue in, and the word is there.

It takes a lot of time to go through each thing. But it’s what you have to do, and not give up, just keep trying one day at a time and take it slowly. Progress is slow, like learning to walk again. A little at a time and all of a sudden you know you can do it. But confidence is hard to get back and the feeling you’re not doing very well stays awhile, and then one day you see the person can dress himself and cut up his own dinner, even go and make a cup of tea when he feels like it, and that’s a big step forward, with more good things to follow.

We have had some smiles. The day we spent looking for a pair of slippers that turned up in the airing cupboard. A cup of tea made with hot water only. Mick taking a lot of time over eating a meal, then asking “Was it nice?” Mick putting on roller boots at our grandson’s birthday party and sitting himself at the table so as not to be left out of anything. It’s so good now to see Mick laugh when he has been watching the TV and enjoyed a programme and will then speak about it so you know he understood.

Mick doesn’t stay awake all day or sleep all night. When he first came home from hospital day and night were still the same for him as they were when he used to work all night. When he goes to bed he finds it takes a long time to go to sleep even when he is very tired. He will fall asleep only to be wide awake in an hour’s time. So wide awake we go downstairs and have a cup of tea, maybe make a piece of toast and sit awhile. Then we go back to bed, only for Mick to wake again in about an hour. This goes on until the early morning when he would be finishing work time and then like magic he falls into a beautiful sleep, snoring his head off.

Mick went back to Hurstwood Park for two six-monthly check-ups and then had just one a year for two years before he was discharged.

For some time he also had an assessment from the Speech Therapists every year and then six weeks of work with them which really boosted him up and showed how much progress he was making.

The car

At the end of the first year when we went back to Hurstwood Park for the second six-month check-up with Mr Walter, he was so delighted with Mick and most surprised he had a voice as he had said not to expect him to be able to speak. And we couldn’t believe it when he tested Micky’s reactions and he said “Well Mr Player, I think you could start driving,” and Micky nearly jumped for joy. He couldn’t wait. But we had to go to Banstead Mobility Centre first, where we spent the whole day. When Micky had seen all the doctors, the driving instructor came to take him out in the car, which was an hour’s drive, and not in our car. He just got in the car and went. They came back and the instructor said that Micky had no problems at all. So he’d passed with flying colours.

Now Mick is able to look after the car again and keep it in good repair. Driving the car again must be the happiest thing for him because he is in control, with no problems at all. It’s amazing how he knows where to go and would never get lost. He would find it impossible to name roads and give you a route, but say where you would like to go and Mick will know straight away and take you right there. Our four walls have opened up and we are independent, able to go as we please.

Now Micky’s driving the car, his speech is much clearer, he’s totally confident. One day, we were coming up over the hill and we passed a spot at which there was an accident just after we’d gone by. He saw it all through his mirror and he not only parked our car properly on the side of the road, his coat was off and he reached the boy before anybody else, did all the things that he should do, properly, which shows just how much he takes in as he’s driving. And when the ambulance people arrived, and the police, and they were asking what had happened, had anybody seen any of this, Micky spoke to them and said everything as clear as a bell, without any hesitation at all.

A miracle

I do believe in God and talk to him every day. I don’t know for sure that my faith is strong enough, although through all my life when things have been tough and sad I have known for sure in my heart that he was there, so always found it very easy just to talk to him. The power of prayer is not something you can teach, but feel it you can.

For me it has been like watching a miracle happen.

We now have a good life together to share and can never say “Thank you” enough to everyone who has been part of our lives these last few years. Without their help and backup we would have felt cut off from everyone. I have nothing but pride for Mick and my family. They leave you speechless for all their support, and once again we can all enjoy life together. Who knows what next year will bring.

Mick

What can I say about Mick? We have been married for thirty-eight years and he has always said “You don’t know till you try.” He would always have a go at anything. He never knew the meaning of saying “No” to anyone, always willing to help. Now he has needed to help himself, and that is what he has done, without a grumble, willing to have a go and keep going until it is right, trying and trying again, so many times, but never giving up. Starting with two steps from wheelchair to bed, then a little more each day, but never saying “I can’t.”

Before Mick was ill I was working five mornings a week at Sainsbury’s in Lewes Road. I used to work in the bakery, behind the counter. When Mick had his aneurysm I left work and haven’t worked since. I enjoy not working but I do miss the company.

Why did Mick and I decide to call this story “Me and my shadow”? Because we have come to a stage together, when we are at home, where Mick is just that. Whatever I am doing in the kitchen, he is there helping, poking his nose in, telling me I’m doing it wrong, just so he can have a go, and if I turn round quick I always bump into him or step on his foot.

If I make the bed
like a shot he’s round the other side doing his bit.
If I’m cleaning
he will do the hoovering.
If I’m hanging out the washing
he is standing beside me giving me the pegs.
If I’m in the bath too long
he pokes his head round the door
to see if I’m alright.
When we are shopping,
anything he thinks we don’t need
is put back on the shelf
and what he thinks and knows we need
goes in the trolley.
When we go fishing Mick baits the hooks and casts the line,
I hold the rod, do the fishing and reel in the fish,
he takes the fish off the hook.
When Mick’s going to polish the car,
he puts the polish on
and I shine up.
If I’m getting the veg ready for dinner the bags are put away
almost before I have taken what I need.
In the evening, once dinner is cooking,
Mick then sits in a chair
with knife and fork in his hand
waiting to eat his dinner.

His sayings stay in my mind, like the time he said “Look at those lovely dead flowers,” meaning artificial ones. If he sees a flickering light-bulb that’s going to pop, he says “It’s angry.” Or once when he had laid his slippers on the bed he told me he had put them to sleep.

March 1993

Me and my mum
by Karen Clark

Who we are

Mum was a single parent for many years. She had been divorced when my brother and I were very young. By the time she was forty-nine she was suffering from depression and the last couple of years before her stroke she also had agoraphobia.

Myself by this time had been a mother to Elliot for two and a half years and had been very content with our life up till that point. Although mum had the agoraphobia she enjoyed Elliot very much, she used to play with him quite a lot, always crawling around the floor with him on her back, making tents for him and sitting in them for quite a while with him. Myself and my brother had left home some years before this time and had made homes of our own and had quite independent lives.

Mum had been given many different anti-depressants over the years, unfortunately, so the problems that she encountered were never dealt with at the time. Instead they were just suppressed by the tablets.

Eventually mum did manage to wean herself off them and for a time looked and felt the best she had in many years, then finally the agoraphobia began and then the last straw, the stroke.

The day it happened

My mum had felt bad for a few days and had actually been staying with me, but because she had suffered from nervous problems for years I just put it down to her going through another bad stage.

After she had gone I left my son Elliot (then two-and-a-half) with my neighbour and went to see her. When I arrived she had been lying on the settee and was upset. I said she could not go on like this and I phoned the emergency doctor, who decided he did not need to come out and examine my mum, instead he phoned through a prescription to the chemist for something to calm her down, I think the tablets were valium.

After speaking to him I decided to take my mum back home with me. I ordered a taxi and we stopped at the chemists on the way to pick up the tablets. We arrived back at my flat and I gave her one of the tablets, then I went to get Elliot from my neighbour. She was very quiet for the rest of the evening, she decided to go to sleep and then I went to bed.

I woke on Sunday morning still worrying that mum was having a nervous breakdown, but I was not quite sure what to do about it. I got up and hoped that she was feeling better. I knew my brother was supposed to be returning to his flat after being away for a few days, I thought that he might know what to do about mum. I asked her how she was feeling but she was still quite dozy. I told her that I was going to my brother’s to see if he was back but he wasn’t, so I left a note for him to get in contact when he got home.

When I got back to my flat I thought my mum was feeling a bit better. She had got up and had just made herself a cup of tea. My mum was sitting on the settee and went to pick the cup up but it slipped and the tea spilt over. She tried to steady it but she did not seem to be able to grip the cup properly. She did not seem to have any control over her left hand. I took the cup from her in the end. She then decided to get up from the settee but as she did she sat forward and lost her balance and fell over on to the floor. I was shocked at this but she tried to lift herself up from the floor. She managed to get on to her knees and put her hand on to the settee but she could not pull herself up. I tried to help her but I just couldn’t get her up either. She rolled over on to the floor and I told her to stay there.

I grabbed Elliot and ran round to my neighbour’s house to phone the doctor. My neighbour went to my flat to sit with my mum while I phoned the doctor. He said he would be there as soon as possible. I left Elliot with my neighbour’s husband and went back to my flat. My mum was still lying on the floor and my neighbour was talking to her but she did not seem to understand what she was saying. She looked like she was in shock. I got a duvet to put over her. It was not long before the doctor arrived and it did not take him long to realise that it was a stroke. I couldn’t believe it. I felt awful that I had not insisted that the doctor came out when I phoned the night before. The doctor went with my neighbour to phone for an ambulance, which soon arrived.

Once we were in the ambulance my mum seemed a bit more aware and I hoped that things would not be too bad. We finally arrived at the Sussex County. I remember feeling quite relieved that at last mum was somewhere that people knew what to do and how to help her. They whisked her off to a room in Casualty and took me to a small waiting room.

I sat there for a while wondering what was going on and then a nurse came to take details and explain a bit about what was happening. At the time I couldn’t really take in what she was saying.

She asked me if I wanted to phone anyone else. I phoned a friend of my brothers to ask him to let my brother know that mum was in hospital. I tried to phone my mum’s sister but she was out. I went back to the waiting room for a while, then a doctor came in. He confirmed mum had had a massive stroke. The doctor left and a little while later a nurse came in and said I could go and sit in with my mum. I expected my mum to be more aware of things by now but she wasn’t. She did not seem to understand me at all. She didn’t look like my mum, her left eye seemed wide open and didn’t seem to blink at all. Her mouth was lop-sided. She would try to move her body but the left arm and leg would not move. Then I realised that she was paralysed all down her left side. I really cannot remember what the doctor or nurse had actually told me about mum’s condition at that stage but I was really quite shocked to see my mum like this. I did not know then how a stroke could affect someone.

A bit later I managed to get through to my mum’s sister and they came to the hospital soon after I had phoned. It was such a relief to have someone else there. They eventually found mum a bed in Donald Hall Ward. When we arrived on the ward I had to give the nurses mum’s details again. They asked us if we all wanted a cup of tea, which was very welcome. Mum was a bit brighter by this time but of course she still couldn’t move her left side. The most frustrating thing of all was her not being able to talk and tell us how she was actually feeling. They gave her a cup of tea, but because the left side of her mouth was paralysed she had problems keeping the tea in her mouth. Mum must have been really frustrated over that because she always loved her tea. The nurses in the ward were really nice and understanding. They made mum as comfortable as possible and tried to make her laugh. She had perked up a little bit but I don’t think she realised what had actually happened to her.

Later on another doctor came round to see mum. He checked her over and explained a bit more about what had happened but I couldn’t take it all in at that time. I think I probably expected mum to be the same as she was before the stroke within a couple of weeks.

I asked the doctor if she was still in any danger, but he said no she wasn’t. It was getting late and I was very tired by this time. I’m not sure how long we were there but it was most of Sunday. I felt very guilty to go, but I just wanted to get home to Elliot and try to get some sleep. All mum seemed to need by this time too was to sleep. I said goodbye to mum and when we left the hospital all I could think of was that it was her fiftieth birthday the following week, and I thought, what a present.

I visited mum every day when she was first in hospital. She had been transferred from the Donald Hall Ward to the Lady Chichester by this time. Donald Hall Ward seemed more sort of cosier. Chichester was much more larger. It seemed an entirely different atmosphere. Some days I would visit and she could be quite bright and other days she would seem to be quite confused and helpless. Her left side was still paralysed and she would sometimes get very frustrated and angry.

Mum came to my brother’s flat for Christmas. She seemed to enjoy herself but was quite worn out when we took her back to the hospital the day after Boxing Day. The beginning of January mum was transferred to the Brighton General. March came and they decided she could come home. Mum was over the moon and couldn’t wait to get out and back to her flat.

Friends

It’s awful when something like a stroke happens. You really do find out who your friends are. Lots of my mum’s friends have disappeared, although I must admit that before her stroke they had begun to dwindle off due to her suffering from depression and agoraphobia. Some of her friends do have their own health problems too. When my mum first had her stroke and was in hospital quite a few people came to visit, but as time went on they came less and less if at all. She was in hospital for about four months altogether. When she did finally return home a couple of the neighbours were quite good and would pop in and see her from time to time. She might get a visit occasionally from a friend. My mum was at that flat for another four months, my brother and I thought that she was quite isolated there. None of us were living near to her so I asked the Council if it was possible for mum to be found a flat which would be closer to me. After offering two flats which were totally unsuitable, they finally came up with one which was in Park Crescent Terrace which was ideal. It was just around the corner from me. It seemed like the perfect solution. It was on the flat close to London Road, no hills to climb when she was able to walk out properly. I also thought that she might make some more friends of her own age.

We finally moved mum into the new flat. She seemed quite happy for a while. One of her neighbours from her old flat visits occasionally. My mum sees one of her brothers and her sister regularly. My ex-in¬laws visit her still, as they all got on even after my ex husband and myself had split up, but as far as a lot of her friends are concerned, they just don’t bother any more. They can’t blame the move because in fact it has not made any difference distance-wise. Another of my mum’s brothers only lives just around the corner and has only been to visit her once in the two and a half years she has been there. The only reason he bothered then was because he and his wife were passing one day and mum called them over. Myself and my brother are the most regular visitors now.

My mum found it difficult to make new friends due to her speech problem and lack of confidence. She was becoming quite a recluse really and I found this very distressing to watch. I had hoped that by going to places like the Stroke Club and Montague House she would be able to start socialising more but unfortunately she gave up going to them. She has problems sleeping so therefore has problems getting up in the mornings. It’s a shame that some of these clubs could not have been in the afternoons because I have heard that other people who have suffered strokes have problems with the mornings too. I feel mum’s life should be much better than this, at the age of fifty-three and having brought up my brother and me single-handed for most of our lives, she should be at a stage where she should be able to socialise and just be enjoying herself.

I feel she has been a strong person in her life and has had to overcome a lot of problems in the past but I suppose over the years the knocks have taken their toll and something just had to give.

As for myself, I would not say that I have lost any friends since my mum’s stroke, but I do find it difficult sometimes to visit as much as I would like to, especially if it’s a friend who lives away, because I have to make arrangements for more help for mum from the home help services. But as it’s lack of company that is mum’s biggest problem, this is obviously something they cannot provide, so I don’t actually feel free for my son and I to be able to take off whenever we want to. I have to think of mum too.

Most of my friends have been quite good. When mum actually had the stroke my neighbour was a tremendous help, but I don’t see her now as she moved away. One friend in particular has been a great help. I didn’t know Helen at the time of mum’s stroke. We met when our sons started at playschool together. Helen has been a great help with Elliot ever since. At the times when I’ve needed someone to look after him she’s always been there. Other people have helped me too, like my brother and my ex-in-laws and other friends, but Helen has been the main person to help me out where Elliot is concerned, and I’m very grateful to her.

After the stroke

A few months after my mum first had her stroke she was beginning to make quite a bit of progress, her walking was improving and her speech was getting better. She was doing bits and bobs quite happily for herself. Her left arm was the only thing that had not seemed to improve much, but as we had been told before that in a lot of cases the arm is the last thing that improves, we were not overly worried about this. Early on I had been told that mum had a good chance of a full recovery as she was not that old. We expected her just to gradually get better and for the first year it seemed like this was a good possibility. As long as we could see some sort of improvement that was the most important thing. Things looked good.

A couple of months before Christmas 1990, nearly a year after the first stroke, Mum had a second stroke. Luckily it turned out to be only a mild one and did not seem to affect her too badly. In fact, her left hand seemed to improve a bit. I remember walking into her flat one day and she had managed to put a corner of a towel in her left hand and then proceeded to fold it up still using her left hand. She was so pleased with herself and I thought, and told her so, that it was brilliant.

She deteriorated more and more. She just couldn’t motivate herself, she was tired and depressed most of the time and I know her medication made things worse.

Bad feelings

I have had a lot of bad feelings towards my mum in the past three years. Sometimes I feel angry at her for not doing more for herself as she is capable of doing more things but she gives up too easily, and it’s a strain to try and get her to do anything. At the age of fifty-three I feel this is such a waste. I hate to see her just sitting there so depressed and doing nothing for a lot of the time and letting herself deteriorate. It’s the depression that stops her doing a lot of things, more than the actual physical problems. What people like my mum don’t realise is that often it’s the depression and bitterness that is actually pushing people away. I do find myself running out of patience. I’ve got to the point quite a few times where I’ve had to just walk out of her flat. When I’m angry at her I feel like just going off and leaving her to it, but obviously when I calm down I wouldn’t be able to, I would feel too guilty.

If I could see my mum making progress and trying to help herself then I’m sure I would feel much happier to be her carer, but at the moment it feels like I’m hitting my head against a brick wall.

I’ve sometimes felt very angry towards my brother especially in the early days, when we argued an awful lot over mum’s condition. I felt like the buck was being passed to me all the time, but as time has gone on I understand his reasons more now. My brother gets very depressed himself and cannot cope with being around my mum too long. He also has his own health problems and has spent some time in hospital himself.

23rd December 1992 – Another Christmas

Gradually, as time went on, things got worse. Because mum was not getting out much, she was getting more fed up and depressed and gradually was demanding more of my time.

My life seemed to be taken up by mum’s needs and I found myself getting very frustrated and angry at everyone. I felt that no-one else seemed to be concerned about mum, and I had felt like I had told as many people as I could that mum was deteriorating but it seemed like nobody was listening. Until Christmas 1992, when mum was admitted to hospital again. They thought she had a virus and chest infection, and she was in hospital for a month.

One day I arrived at the hospital and mum was bawling her eyes out. One of the doctors had said that she would have to go into a rest home because she was unable to cope at home any more. I think the threat of the rest home made mum determined to prove to us that she was well enough to go home because within the next few days her walking had improved tremendously. The occupational therapist said there was no reason mum couldn’t go home. Mum agreed that if she went back home that she would go back to the Stroke Club. At least that would be getting her out and seeing more people, which is half the problem. The Social Worker at the hospital arranged a Home Help to visit every morning, not only to help mum, but also to relieve a bit of pressure off me.

I had made it clear that I was not prepared to do any more than I had been doing. As Elliot was getting older it was getting harder to juggle his needs and my mum’s evenly, and three years of caring for my mum had made me realise that sometimes the carer needs to put their foot down and let others do a bit of the caring too.

Home again – January 1993

Barbara Wood who runs the Volunteer Stroke Association Club arranged for a young man called Joe to come and give mum speech therapy once a week. I think it will do mum a lot of good to have a young person coming to see her as she always did get on well with young people before the stroke.

We arranged for mum to go back to the Stroke Club at Tower House the first week she was out of hospital. She also agreed to go back to Montague House once a week, but so far she hasn’t been.

We also persuaded mum to join the Rokets, which is a group of people who are around her age or younger who have suffered strokes, they go out on a couple of outings a month. The idea is to get stroke victims out and socialising again. When mum realised they were going off to a country pub for lunch on only the second outing, she seemed quite eager to go and she really seems to have enjoyed herself. After the pub lunch they had gone on to a warehouse to do some shopping and she was really pleased. She had never liked shopping much before and it could be quite hard sometimes to actually get her to go anywhere like that.

Mum probably feels more comfortable with doing things like this with the Rokets because she does not feel like she is the only one and that everybody will focus on her. It is probably nice for her to go shopping with a group like this. They can boost each other’s confidence because they all understand each other’s circumstances in one way or another and it will do mum good to be around people of her own age group and younger. Hopefully it will make her feel her age again, rather than feeling like an old woman which is how she had been going on before she went in to hospital. Unfortunately there are not that many organisations that can cater for the younger people, but hopefully that is gradually changing now that everyone is beginning to realise more that because someone is disabled by a stroke it doesn’t mean that they have to become old before their time.

Things have seemed to get better since mum joined the Rokets. I only wish she had joined earlier when they first got in contact about two and a half years before. She really needed more socialising with people of her own age group but because she did not have much confidence and found it hard to hold a conversation it held her back. And of course she had to rely on others to take her out anywhere. Not being independent makes it hard to socialise for anybody.

February 1993

What a paraphernalia! Guy’s story

Who we are

My wife Doreen and I were both born in the early twenties. We met in 1945 when I was on hospital sick leave from the RAF for Christmas and was introduced to this young nurse just off duty. Two years later we married, I by then having returned to work for my former employers. Three children followed and the tough life of bringing them up was sometimes tinged with tragedy. In the early sixties we moved to Peacehaven. I suppose that I might be called a “public figure” for I have been involved in local politics for many years and am at present a member of both our district and town councils and also a past mayor. A list of the organisations that I was connected with fills two A4 sheets, to say nothing of hobbies.

Doreen worked for twenty years as one of our local postwomen, walking or cycling over ten miles a day, six days a week, in all weathers, so she was extremely fit. She was a keen fencer for quite a time. Her hobbies included painting, knitting, crochet, embroidery, rug making, music and drama. She was always taking part in productions and was an enthusiastic member of a local light opera society.

In 1983 I was compulsorily retired from full time work at the age of sixty but soon found part-time work, finally running the accounts and computer for our daughter Karen’s in-law’s transport company. After retiring Doreen spent much of her time looking after our three grand-daughters while our daughter worked as a practice nurse for a local doctor. Life was about to change though, and suddenly.

Thursday 31st May 1991 – the day that changed our lives

I had a busy morning ahead and I wanted the computer shut down by 12.30 as I had to collect Doreen then from our daughter’s where she would be waiting for me after a visit to her hairdressers.

Just before 12.00, the phone rang. “It’s Karen (our daughter) for you,” I was told by my “boss”, Karen’s mother-in-law. “Dad, come up right away, it’s urgent”. “Leave everything,” my “boss” said, so I hurried off up the road in my car wondering what was up.

Karen met me at the door. “Mum has had a stroke but don’t worry, I’ve phoned the doctors.” Apparently while at the hairdresser Doreen had stumbled and fallen over but put it down to tripping. Later she had walked quite happily along with her friend, the three quarters of a mile to our daughter’s house. Karen had gone to the kitchen to prepare lunch while Doreen stayed with our two youngest grand-daughters and another babe. After a while my wife appeared at the kitchen door and Karen took one look and took her mother back and sat her in an easy chair. Being a fully qualified nursing sister, she knew immediately what the trouble was. The doctor was called, then me, and after that another call to ask her mother-in-law to come up for a while to look after the children. We were then able to get Doreen back home as per medical instructions to await the doctor’s visit.

By now Doreen was slumped in an armchair and only semi-conscious. I think that I had been told to try and give her some soluble aspirin but by then the day was beginning to get a bit vague and I think that I managed to get myself a snack of some sort. It was then a case of wait for the doctor to arrive while keeping an eye on the patient. She kept sliding down to the floor and was obviously incontinent and from time to time I struggled to get her up again and was only able to manage when Karen returned for she had had to go home to breast feed her baby.

Eventually by mid-afternoon a lady doctor arrived and agreed that the problem was a stroke and that Doreen would need careful nursing. Could we manage? “No,” I said, “I certainly could not and my daughter, with three children under five, is in no position to help”. “Right then, I must try and get a hospital bed for your wife.” Some telephoning around eventually found a bed at the Royal Sussex County Hospital. Next an
ambulance was required, nightwear and toiletries packed (and what man knows what his wife requires and where to find it), then by late afternoon, we were off in the ambulance to Brighton.

Things then become even more vague in my memory. I think that Doreen spent some time in the Accident and Emergency Department before being taken to Donald Hall Ward still in a mostly unconscious state. Eventually she was settled in bed and I was told to go home so phoned Karen and was eventually collected from outside the hospital by my “boss”. Fortunately it was a warm evening. Once home I was left to try and get a night’s sleep. In my bewildered state there was not much chance of that although leaving the bedside radio on all night ensured that I did drop off from time to time.

Next day I went to the RSCH with our daughter and the baby, and found Doreen still in a sorry state. She had however had a brain scan and the results had been “faxed” to the Hurstwood Neurological Centre at Haywards Heath. They took one look and said “send her up right away” so our hospital visit was only a short one, for within minutes Doreen was on her way in an ambulance. Upon arrival she immediately underwent a five-hour operation for the removal of a large blood clot on the brain.

That evening our son had driven up from Malmesbury after finishing work so I had company that night. Again I got very little sleep.

Saturday morning I spent mostly telephoning friends and relatives with the news. That afternoon, three of us plus babe, drove up to Hurstwood Park to find my wife connected up to monitors, drips etc, and being “specialled” twenty-four hours a day with a nurse constantly at the bedside taking observations every fifteen minutes.

The surgeon arrived, took Karen and I into the sister’s office and went through the operation with our daughter. It was all in medical jargon but his conclusion was that if Doreen recovered from the operation, the best we could expect was that she would be almost completely paralysed for the rest of her life and also unable to speak. Later the sister said that the surgeon was being over-pessimistic. This was proved to be the case as time went by. For the time though we could only hope and pray that things would improve.

From then on, I tried to keep myself as occupied as possible and of course visited the hospital every day, a fifty-mile round trip, thank goodness for a motor car. On the tenth day Doreen at last opened her eyes, coming out of the coma she had been in since day one. Seeing all the wires and tubes connected, her first words, which came out quite clearly, were “What a paraphernalia!” This became a stock phrase for weeks to come even though she could not manage much more simple words.

On the thirteenth day, she was moved from ITU to the Surgical Ward next door and what a difference. Staffing levels seemed much too low after the “special” intensive care nursing. By day sixteen there was more talk from Doreen which, if not always understandable, at least showed that that there was something there that could be worked on, improved and developed.

At that time we had more bad news. Our son-in-law, Karen’s husband, Barry, was a racing motorcyclist riding his sidecar unit on the Spanish Grand Prix circuit with his brother as passenger. At 150 mph something happened to the front wheel and they hit an Armco barrier head-on. Fortunately Barry only suffered minor injuries but his brother was rushed by helicopter to intensive care in a Madrid hospital. This left only two of us out of five who normally ran the business until David was recovered enough to be flown home by air ambulance. It meant a lot more work for me which in some ways was a good thing. What a time to have two problems to deal with. It snowed next day in Sussex (16th June).

Then on the 17th, Doreen was moved to Chichester Ward at the RSCH where she was to stay for the next two-and-a-half weeks. There were good days and bad, most of the problems being caused by the side effects of drugs. She was still unable to do much unaided but was sometimes allowed to sit out of bed. The ward contrasted with the quiet of Hurstwood Park for it was large, full and very busy day and night. Sleep was difficult.

Another step forward on 5th July, with a transfer to the Homeward at Brighton General Hospital, a ward mainly devoted to assisting the recovery of patients who had suffered strokes. She was to stay there for over three months of slow and steady progress. But what a wonderful place Homeward was.

Homeward

I do not know the correct words to use, but “Culture Shock” springs rapidly to mind. My first visit to Homeward on what was a very hot day (shade temperature 28° C at midday), I was greeted by a young girl in T-shirt and hot-pants who was the nurse-in-charge that day of the small ward of five beds (one of four) that Doreen was in. There was only room for a maximum of twenty-four patients. The only uniforms to be seen were those of the physios, everything was as near to conditions at home as they could possibly make them. Then, about the end of September, the dreaded economies struck and there were never enough staff on duty. One of the rituals during the summer was the daily visit to the “garden”. Another ritual was the visit to the young (and pretty) lady physiotherapists, or should it be physio-terrorrists, in what was the old Lancing gym. Doreen was at first completely paralysed down her right side and of course confined to her wheelchair. She had to learn everything again from the start. I was soon helping and slowly progress was made.

Then there were the speech and occupational therapists. Doreen had two Australian girls and I had visions of her turning from a Pom into a Digger.

Dogs and cats were allowed in and they had their own resident budgerigars and fish. Children were also very welcome. There was never any complaint if a stream of visitors all arrived at the same time.

On my wife’s birthday she had a party and another five weeks later for our wedding anniversary (forty-four years). There was another party because one of the patients had spent a few days in “The Flat” before going home. This was a small ward fitted out like a bed-sit and one day the occupant of the flat, plus Doreen and another patient, with the assistance of the nurse of hot-pants fame, spent the afternoon making cakes. The laughter could be heard all over Homeward but at least that afternoon there were lots of iced cakes to be eaten with the afternoon tea.

Our wedding anniversary was nine weeks after the transfer to Homeward and that evening I was given a commode chair to take home, for the next day Doreen was to come home for the day. A few days later, she was taken to Hurstwood Park to see the neuro-surgeon for a three month check. Mr Walter was extremely pleased with progress.

That Sunday another day was spent at home and I was able to wheel her around the local area. The following weekend she came home both Saturday and Sunday. Then a midweek visit with the occupational therapist and a student nurse to check if there were any problems in the home. As there was nothing insurmountable, that weekend Doreen spent Saturday night in her own bed, her first night there for four months.

By then she was able to walk a few yards without assistance. It had been a slow process, first being helped to get up and standing unsupported, then rising from the chair on her own, then upstairs, downstairs, always first with assistance and then unaided.

So on 8th October 1991 I was allowed to take her home after nineteen weeks in hospital. That afternoon we walked the hundred yards up our short road and back. She was now an out-patient as opposed to an in-patient.

I can never come up with anything but praise for Homeward and its staff. All I hope is that the scheme is kept going and not discontinued as an economy measure.

Homecoming, Support & Caring

Now with Doreen home I would need some support and it was soon to arrive. Within twenty-four hours, Jan Nowak called, she was and is the local Stroke Nurse, one of a small band of four whose job it is to help stroke patients, their families and friends. This was the first of a number of calls that Jan was to make on us and soon that day, all three of us were standing in the bath together (fully clothed) to see if it was possible to shower easily. Silly little points like how to get a bra on and off and other dressing hints were very helpful and the counselling was excellent. (Please try and read Brighton Health Authorities leaflet, “In One Stroke”).

Next Doreen’s friend arrived so I was able to go and do a “big shop”. We were to get a procession of friends and relatives visiting over the next few weeks. The following morning was spent back at the hospital with the physio. This was to become a twice weekly visit for the next two months but then suddenly it was announced that they could do no more to improve her condition. Day two also brought a visit from one of our doctors. The three that form the practice that we belong to have been very helpful and made several calls in the early days without question and even now they are still very supportive.

Besides the physiotherapy, Doreen also had weekly speech therapy at BGH but that also stopped after two months for, it was claimed, the same reason. Was therapy being rationed? I got the impression that both therapists gave up, although they said that they had got all the improvement possible. My reply to that was the old service expression, “Bullshit”, for Doreen herself carried on with daily exercises (and still does after another year) and there is slow improvement still.

The local Volunteer Stroke Service co-ordinator soon called and arrangements were made for Doreen to attend the Newhaven Stroke Club each Tuesday morning. (There is now one in Peacehaven). This at least gives me one morning a week to myself so I am able to do the week’s shopping and anything else that I want to do before having to get back to prepare lunch. Otherwise if I wanted to go out at any other time, I had either to find someone to stay with Doreen or take her to someone else’s home. Now also the VSS is providing speech therapy weekly and this too is proving to be most helpful.

Doreen came home with her wheelchair but only used it occasionally for a month. She was soon walking more and more each day (with assistance). The last time the wheelchair went out was for the opening of Lewes Leisure Centre which was attended by several hundred people. I was asked to prove that the Centre was “wheelchair friendly”; yes if you only used the main entrance, but the emergency exits were decidedly unfriendly, especially if there had had to be an emergency evacuation. Then the chair went into the garage until collected for re-use.

One month after leaving Homeward, Doreen went to our local newsagents by herself, only four hundred yards away, but she came back with what she went for. From then on she occasionally went out alone, even crossing the main A259 road unaided.

What were the first six months at home like? There were good days and bad and the doctor was called in or visited a number of times. There were problems early on with incontinence which meant extra clothes, carpets and walls to wash. It amazed me to have to stand on tip-toe to clean a wall.

Then there were occasional falls mostly in the middle of the night but fortunately no injuries, just the odd bruise. Once I was about to call on the ambulancemen for assistance but one more try and Doreen was up into bed again.

Many a tear was shed during that time, the slightest upset was enough to start her crying, even moments of happiness brought a flood of tears.

Daily life for me was a bit of a strain, having been used to going off each day to “do my thing”, I now felt as if confined to a cage. Doreen would not be left alone so I could only get out if there was someone to look after her. Even now when I do leave her alone for a while, I feel I must rush back as quickly as possible and often don’t achieve all I went out for.

First Improvements

They all say that Doreen is determined to get better, at least as much as she is able to by her own efforts. After the surgeon’s first prognosis, we thought that there would never be any improvement but with hard work, there has been slow steady progress. The only problems now are the right hand and speech but even in those areas there is still improvement, perhaps slower but nevertheless noticeable.

During the first five months after leaving hospital, Doreen had days when she was unwell but these days became fewer as time went by. Then in mid-March I had to take her back to see the surgeon again for another check. The drug Phenytoin had been prescribed to prevent fits occurring after major surgery to the brain. He again was very pleased with progress and advised cutting the drug dosage from three to two a day, then later to one and finally to stop taking pills completely if that was possible and there were no adverse reactions. This turned out to be a mistake, as three weeks later Doreen had two fits, and was rushed to hospital. However she recovered quickly. Perhaps the thought of another stay in hospital was enough to get her well enough to return home.

Because of this upset, Doreen went back on to three tablets a day and has stayed at that level up to now, nine months later. A blood test would confirm the correct drug level to prevent her having fits. Later, when she had had a slight fit, I realised that a TV had been on a few feet from her left shoulder so my theory is that TVs or strip lights flickering in the corner of the eye, or the scenery rushing by while in a fast car, can bring on fits. (Now children are having the same problem with computer games).

One year on

Spring Bank Holiday weekend was one year after Doreen had her stroke. Again we had visitors from our twin towns in Germany and France although none stayed with us this time. Doreen was able to take part in some of the activities such as attending a reception and helping at a stall on the carnival field. This was the start of a sudden surge in improvements, in dressing and undressing and in eating. Also by now she was doing some of the housework, washing, ironing and a little cooking and her embroidery was being done more speedily. She was also visiting our local shop on her own more frequently where they called her “Guy’s lovely lady”.

Then early in June we were off on holiday, our first for almost two years, staying with friends on a twenty-five-acre smallholding in the cider county of Somerset. The holiday was spent quietly, for we were miles from anywhere, and there was a nice garden to sit in and when it got too hot there was the shade of the cider orchard. The journeys there and back were a bit of a strain but we took it steadily.

Back home we had one or two upsets and the doctor was called in. He finally gave Doreen a bit of a talking-to, saying that she had nothing to get worried about. I also said my piece and this seemed to mark another turning point, for she made quite a sudden improvement. Now she was able to do all the normal things even more easily. Besides her embroidery, she started knitting and this was one area where her memory had faltered. She had to be shown how to cast on and do some kinds of stitches but once shown, soon got going using the left hand.

Mr Walter also asked to see her again because of the upset in April and again was pleased with progress but now advised her to stay with the full drug dosage. So in spite of setbacks, progress was still being made.

Consequences

Before the stroke, we each had our separate lives which came together at times, but now Doreen has to rely on me for support, so much so that both our lives have entirely changed. For a year, caring was almost a twenty-four hour a day, seven day a week activity. My only free time was on Stroke Club mornings when I had first to do the week’s shopping and then any other outstanding tasks. I had to give up my part-time work and so missed the job satisfaction I got as a computer manager and also of course the pocket money which I had used to fund my many hobbies. I also had for a time to drastically reduce my activities as a District and Town councillor and as member of many other organisations. I can no longer spend much time on my own, listen to my favourite music, watch the TV programmes of my choice or travel abroad.

My biggest moan is that when Doreen came out of hospital, no one took the trouble to show me how to lift her. Whenever my wife had a fall or had to be got out of the bath, my weak back had to take the strain, and suffered. The powers that be seem to think that if young nurses can manage, senior citizens then must surely be able to do the same. I wish that I still had the strength.

Probably what I hated most was to keep having to ask people to look after Doreen while I went out. After a time it could have strained friendships. Then there were the times when I was let down, especially annoying when it was at the last moment and there was an important meeting to get to. This has happened a number of times.

On the positive side, being at home more means I am able to enjoy my hobbies to a greater extent but have to spend quite a lot of time cooking. Yes, I have had to learn how to cook. It was very basic at first but now it is a little more adventurous. Doreen is determined to get better and she has taken over more and more of the domestic tasks, washing, ironing, cleaning etc, but I still do ninety-nine per cent of the shopping and cooking and of course decide what is on the menu.

One really bright spot is that her sense of humour has intensified. Even now after almost two years, nine times out of ten, when asked a leading question, she will answer in the opposite way that she means, “no” for “yes” and vice versa. It is very amusing to see the faces of people not in the know when they get the opposite answer to what they were expecting.

Doreen has always had quite a cackle for a laugh and now at times it is ten times worse. Tell her a good joke or let her see a funny TV episode and she really lets fly. In company, they must think that she has a terribly “dirty” mind.

Although I know that I should not have them, from time to time bad feelings have entered my mind. The first problem to crop up was over money, isn’t it always? We had asked for Attendance Allowance to be paid into our joint housekeeping account but no, the DSS insisted that it be paid into Doreen’s personal account and so at first every begging letter in the post received a cheque by return. I was not allowed to give advice or vet anything so goods ordered by mail were often incorrect and then who had the problem to sort out?

My thoughts are that all older people who have been very ill tend to become very possessive and think only of themselves. Of course with the speech problems I had great difficulty in understanding her and if I got it wrong, Doreen would get very agitated and the more worked up she became, the more likely she was to have a panic attack.

All of these problems had their effect on me and at times I felt like walking out on it all. At times like this though I did have my “railway room” to retreat to. Here I had my model railway, computer, radio, etc. A game of patience on the computer worked wonders for me. Otherwise I could watch a video to release the tension. Then when things were more settled we could have a kiss and a cuddle to bring things back to normal.

Friends

The dictionary says a friend is someone to lean on in adversity, one who loves you. In the main, both Doreen’s and my friends all turned out to be true friends.

For the five months that my wife was in hospital, I was seldom home during the day, either being at the office, hospital, meetings, or sitting down to a meal that someone else had prepared. I had recently acquired an answerphone so each night, I recorded a “bulletin” and all our friends got into the habit of telephoning each day. It made things much easier for me not having to say the same thing every few minutes.

There was a regular stream of visitors other than family and Doreen’s former workmates did not forget her even though she had been retired for a few years. One ex-colleague who is a near neighbour has been especially friendly and helpful. A few years back he had a heart attack and Doreen’s prompt action possibly saved his life, so perhaps he feels that he “owes her one”. People came from church, council (Doreen had been my mayoress), RAFA, etc etc and even from Germany.

In the main, I found that all our friends and associates, even if not doing things, were thinking of us and offers of help were too numerous for us to accept every one. I can say that Doreen and I have been “loved” in our time of trouble. My only problem is that, as I said before, I feel very embarrassed each time I have to ask a friend for help, but that is me and I expect that they do not mind for that is what friends are for.

Why did it happen?

This is a question not always easy to answer but the main cause is probably stress. Doreen had spent much time looking after the three grandchildren and sometimes others as well and no doubt this was too much. We had been trying to move. Also Doreen had not been in the best of health over the past dozen years having had a number of major operations or serious illnesses and been close to death a couple of times.

In 1991, my younger sister had died, our third grand-daughter was born, there were the local elections and finally, the weekend before the stroke, we had a friend from Germany staying with us. Women worry about all of the above things and they add together.

Whatever the cause though, Doreen suffered a very severe stroke so how is she now, almost two years on? We were told that improvements would only take place during the first eighteen months, after that, nothing.

But that is being proved wrong. Over the whole period, improvement seems to have come in marked spurts. The latest change has been in improved speech. Also Doreen is now able to go to church without bursting into tears at frequent intervals. She is also talking of a possible trip abroad later this year. Already she has attended a number of functions over the past month or so. Memory is still one hundred per cent and she is able to read books without difficulty. Counting is not quite as easy as it was though. One problem is that she is still a trifle unsteady on her feet and falls now and again but fortunately so far she has escaped injury and is now able to get up by her own efforts.

How does she feel now, in March 1993, twenty-two months on? It has been difficult for her to tell me in her own words but I gather that all along she has been frightened that the same thing will happen again, although this fear is now starting to recede. However when she feels a bit off colour, she starts to panic. Medically there is no reason for a subsequent stroke, but it is possible.

As time goes steadily by, slow progress is still being made, the right hand does more and more, although “not a lot”. Speech also at times is almost back to normal, so never give up hope. Determination works wonders.

Let us hope that we are spared another similar episode and are able to lead a reasonable life for the rest of our days.

March 1993

That Damocles sword – by Georgina Castelfranc

I always think that we have a very benevolent God, insofar as he does not “lift the veil” and allow us to see into our future. I think some of us, and I think of myself especially, would quail or want to “opt out” if we knew that for an indeterminate period, our lives would be given over to the caring of a stricken or sick relative, to the sublimation of our own interests and desires.

Thankfully, the “veil” is not lifted, for how few of us can picture ourselves or a loved one becoming the victim of a stroke? And yet, like the sword of Damocles suspended by a hair’s breadth, that “hair” can snap, and a blood clot that suddenly breaks free can, in seconds, turn an unsuspecting man or woman into a helpless being, bereft of certain essential bodily functions which up until then have been so taken for granted.

In that split second, he or she is changed, sometimes completely and forever, sometimes mercifully and miraculously regaining his or her mobility and/or speech, to a degree where damage does not appear noticeable, except for a slight hesitance in speech or slowness in movement of arm or leg.

It is probably true to say that proper diagnosis within the first hour of a stroke and prompt hospitalisation where necessary – and not speculation or waiting to see if it is just a TIA (Transient Ischaemic Attack) – could help many more stroke patients to return to a fair degree of normality, especially if given the right drugs and therapy as soon as practical.

Unfortunately, my two nearest and dearest, namely my late sister and my husband, were woefully neglected in this respect, and I must confess to a feeling of bitter resentment at the lack of expertise and awareness on the part of the doctor to gauge the seriousness of their strokes, which even I, as a lay person, could observe and knew needed urgent hospitalisation.

My sister’s stroke happened in June 1984 and left her permanently paralysed down her left side, but mercifully her speech was not affected.

She suffered the first signs of a stroke at 8 am on a Saturday and was able to phone her doctor who arrived about 9 am, carried out a few simple tests, left a prescription and advised her to get up. This she did, falling twice and bruising herself badly as the stroke progressed. By lunchtime, when she managed to phone a neighbour of mine to get me to go to her flat, her mouth was all lopsided and her left limbs hanging useless. I immediately rang her doctor, describing these symptoms. His classic reply was: “I’m so sorry your sister’s weakness has returned, I’d better arrange for a nurse,” which he did, but did not visit her again himself. It was not until the following Monday week that she was hospitalised, and then only because I had myself collapsed as a result of angina and exhaustion after a relentless week of 5 am-11 pm constant caring.

She came home after three and a half months in Brighton General and I took care of her for the next two and a half years until she could regain a modicum of mobility. She showed immense courage and determination, but she was also subject to temper tantrums and outbursts of hysterical weeping. Not realising then, as I do now, that these are the signs of a stroke patient’s terrible frustrations, I would often return home weeping myself for what seemed to be her ingratitude for all I tried to do.

Sadly, after this long struggle to regain her mobility, she had an even harder one fighting against terminal cancer of the lung and bone. This was five years later in 1990, and she died in December 1991, only five days after her seventy-eighth birthday – a truly gallant lady indeed! She was my only surviving relative so now I only had my dear husband.

They say disasters usually happen in threes!

My husband had already had two minor strokes, which fortunately only left him with slight left limb and speech impairment. In February 1990 his third stroke happened, this time a much more serious one. Only a week earlier I had returned home from hospital, where I had spent three weeks after being rushed in as an emergency with a pulmonary embolism and told I was a very sick lady indeed. I confess I did feel it – and more so when I saw all the “drips” and oxygen mask!!

Both these events came just five months before my sister was also rushed into hospital and later diagnosed as being terminally ill. My “cup” in that year certainly was “overflowing” and in a way I could never have envisaged, nor the difficulties that were to follow with both my “nearest and dearest” needing the utmost loving consideration and help I could give. Visiting my sister entailed a longish two-way bus journey and cold waits at bus stops. There were times indeed when I thought I would not be equal to all that was imposed on me – and single-handed!

While I was in hospital, my husband was desperately (and very foolishly) trying to get a whole lot of re-decorating jobs done which he should have done during the previous year, when he was so occupied helping our neighbours with jobs they wanted done. So, while he was not only fully occupied in our home and catering for himself, he was also visiting my sister with shopping and then visiting me in hospital and finally coming home and working till eleven or twelve at night, stripping wallpaper off the hall and landings and trying to re-paint our bedroom, as well as sleep in it with all that mess ! I came out of hospital to complete chaos and a husband overtired and still having to look after me, as I had also contracted a virus just before leaving hospital and had to get straight to bed. I always contend that it was this over-tiredness that contributed to his third stroke.

It happened at 7.15 am on a Friday as he was having his breakfast and I was still in bed. He came up to me with a bit of scribbled paper, saying: “I can’t swallow or wee!” I phoned the Surgery as soon as they were open, to be told that the doctor was not there and to phone next day if my husband was no better. By the evening he still could not speak, swallow or urinate and I phoned the emergency doctor, who appeared very bored, and in exasperation, I said: “Do you want to come to my husband or not?” – to which he replied: “I’m having my supper as a matter of fact.” To which I replied: “Fair enough.” He came an hour later, took a look at my husband, said it was probably a TIA and to wait till next day. I rang the surgery the following morning (Saturday) and our own doctor came. He also said it was probably a TIA and to wait till next day. Mark you, it was my husband’s third stroke and he had still not been able to swallow or urinate, so hence he could not drink or eat either. I was then told to ring the surgery the following morning, but not before NOON, as it was a Sunday.

I rang at noon and a duty doctor who had, thank God, been on call and seen my husband when he had his second stroke, arrived in a very short time. I, of course, was still ill in bed and my husband was sitting on the bed, rocking to and fro and moaning and crying, he was by then in such dire distress. The doctor said: “My God! how long has your husband been like this?” When I told him since 7.15 am on the Friday, he said that if he wasn’t got into hospital immediately he would dehydrate rapidly. After ringing round the hospitals, he got a vacancy in Hove Hospital.

It so happened that at this time there was an ambulance strike, so that I had to pay for my neighbour to take him by taxi to the hospital. The doctor had also looked at me in bed and said: “You look pretty poorly” and looking at a bowl I kept on my table to cough into, said: “How long have you had blood in your sputum?” and promptly put me on antibiotics.

During the three weeks my husband was in hospital, being fed by a tube down his throat, I was too ill to go and see him and was virtually on my own in the house – just crawling up and downstairs to the kitchen to fill a hot water bottle or make bovril or tea, but a little later two “Angels” in the form of two very elderly friends of mine – both dedicated Christians – had heard of my plight through another, and came to my aid, one doing the shopping for me and the other some very much needed housework, as none had got done while I was in hospital, nor since being home, and I found lying in bed looking at everything covered in a grey film most depressing!

The difficult days

When my husband first came home from hospital, I found it very difficult to get used to his “new voice” – or lack of it! At the same time I felt such optimism. It would only be a matter of weeks before he would he back to speaking normally! – especially with my help and encouragement with the exercises the hospital Speech Therapist had given him on typed sheets.

As each day went by, I’d wake in the morning thinking, “TODAY IS THE DAY!!” and go to bed each night realising with an aching heart that nothing had changed, although we had had our exercise sessions for about an hour or sometimes less, depending on how soon his throat muscles grew tired, and then he lost the initial motivation and gradually grew irritable on subsequent sessions, and so I had to “let him be.”

A friend of mine then offered to come each morning for an hour and help him with the exercises, and he seemed happier with her help than mine! Unfortunately, after a week or two, she got bad back trouble and had to give up, and I didn’t like to pursue the matter when she got better, as she didn’t offer. So little progress was made with these vital exercises, but later, on visiting the hospital for a check up he was told by his consultant to rest his voice more.

In the early days, we had two visits by the Stroke Rehabilitation Nurse – and what a marvellous personality she had! I was able to have a frank discussion with her and speak of my hopes and fears – the former, at this time, being much more in evidence than the latter! I asked her if there was a Support Group for spouses of stroke victims – she said: “No! – perhaps you’d like to start one!” I did get as far as drafting an ad for our local paper, to see if I could get people like myself interested, but abandoned the idea because I found free time for me was at a premium with a husband now facing the challenge of his speech being inhibited, and still with my sister needing me to visit and do shopping.

My life, of course, had already been adapted to cope with my sister’s stroke during the previous five years, but I began to wonder how I would cope with a second patient to care for, but made a mental resolution that I would TRY not to fall into the trap of desperation and that feeling of wanting to “throw in the sponge” that other carers of my acquaintance had voiced to me. Some had felt suicidal and been almost on the point of leaving their spouse when the strain of silences, tantrums and unco-operativeness was almost too much to bear. Some of the people who spoke like this had been caring for an even briefer period than I had already faced with my sister; plus, they only had the one patient to care for and also had the backing of family support, which I lacked.

Well, I must confess that this resolution began to take a few warning knocks, now that I had two somewhat volatile patients to care for, and my husband’s first months of speech difficulty gradually passed into the first and then second year, and by the third year was deteriorating, so that at times he was almost unintelligible, simply because he will not speak to me SLOWLY as he has been told to by his therapist and by me, and then he can be more easily understood. Strangely enough, he does speak more slowly to outsiders, and if he should answer the phone, I can also understand if I overhear him speaking ! It is his insistence on trying to speak to me at the normal speech speed, when it becomes an unintelligible jargon, that brings about his “tantrums” because I fail to understand him. I have even bought him an expensive electronic device: he can tap out messages on a small keyboard, like a typewriter, and the words appear on a tiny screen. Here again, after initial interest in it, it now lies unused. A kind friend also suggested that we both learn the deaf-and-dumb sign language so that we could more easily communicate with one another – but No! that certainly didn’t appeal to him.

Our marriage, which has always been a happy, loving and co-operative one – in fact, we have just celebrated our Silver Wedding Anniversary – is now no longer the same because of these constant irritations on an almost daily basis. I know just how frustrated he must feel at not being understood, but it seems they only vent their spleen on their “nearest and dearest.” Every day I hope that things will be a bit different – that I shall manage not to say something that will set him off on a tirade – he, who has always been the most happy and amenable of husbands. His personality, alas, seems to have completely altered and now, for the most part, he seems only concerned for himself.

As our tastes in T.V. programmes tend to vary, I will get away to our bedroom, which I have turned into my workroom as well, and in this way I can keep some form of sanity in this daily diet of pressure “ad infinitum”!

The interplay of emotions gets more intense when you have no family; also a lessening of friends due to the age factor, who might otherwise add the “leaven” to this daily sticky dough!! It was also very noticeable to me how neighbours, who had previously been quick on our doorbell to ask my husband for his help and expertise in doing repairs (he having been a builder for some twenty-six years before going into hydraulics), now no longer called and were very brief in conversational exchange if they met him in the street. I found this very hurtful and distressing for the first year – both for my husband and for myself – but gradually have come to accept that people, generally, are afraid of what they do not understand or have not met with in their own lives. Compassion comes with being able to experience another’s pain or disability and putting oneself in their place, and for most people, they have their own problems and don’t want to get involved, as such involvement could, perhaps, escalate into more than they would be prepared to offer.

One’s own character, as a carer, also comes sharply into focus at these times. There is a point where even the most understanding and generally even-tempered individual finds his or her grip on keeping the “status quo” finally wears thin, or even snaps, and many factors can contribute to this, namely, over-tiredness, the carer’s own health problems, age and other commitments; there are few of us who are truly saintly and continual frustration can be the match that ignites the flame of self-pity. The ensuing “flare-up” must be dowsed as quickly as possible, once relief has been obtained and a balanced perspective returns!!

So I, too, now get my days when a combination of my husband’s “frustration tantrums” and my own health problems seem to decide to be particularly aggravating and I, too, just want to pack a bag and be off! ! (Mark you, I never would!)

I don’t think I can say that a day passes that some inadvertent word or request to my husband doesn’t develop into a stupid row. Most days start off peacably, but my husband has got into the habit of believing every request I make to him is going to be some form of fault-finding, and before I have even completed a sentence you can see – and hear! – the “aggressive” stance coming into action. The disputes, such as they are, are usually over the most stupidly trivial things – probably some-thing I have very nicely previously requested him not to do – not just once, but many times, and suddenly I find my temper snapping at his continual unco-operativeness.

My husband has, alas! like myself, grown much slower and more forgetful – not unusual when past “three score and ten” as in my case!! – but now he never remembers to put away anything he has been using, be it clothes, tools, etc, so, like a mother clearing up her toddler’s toys, I am constantly going and tidying up after him. Fine! if you are a young, energetic “Mum”, but not when you find it takes you all your time clearing away your own muddle! When he kindly shops for me, I am forever finding the wrappings or paper bags, etc, tucked away into odd corners around the kitchen, instead of putting them away in our “baggery” as we call it! He persistently, and with seeming relish, seems to flout my plea to put the kettle on the stove pointing into the kitchen, and not into the near wall, where I have a hanging cupboard whose glass doors are often left open, and my husband leaves the kettle steaming away into the cupboard, which also does not do the surrounding paintwork any good! A gentle reminder about this has him smashing the kettle down in the right direction and shouting away at me!

On one occasion he came back with vegetables from his allotment and tried thrusting them in my hands, but because I was at that moment right in the middle of making pastry and my hands covered in flour, I said I couldn’t take them for a moment. Next minute he had opened our back door and flung the lot into the garden! His irascibility is difficult to understand at times.

If I have left newly ironed clothes in the airing cupboard, as like as not he’ll go there looking for an item of underwear that is being aired, and scrabble amongst the clean clothes like a dog frantically digging for a bone. The same process is adopted if he gets into a drawer! Both types of sortie need me to go and tidy up after him. These things are in themselves trivial but when repeated endlessly, they do most certainly tend to wear one’s patience rather thin – and we all know what happened about that “last straw” and the “camel’s back”! You need “stamina-plus” to cope with these daily irritations – so don’t anyone think they have the ultimate solution – as it is a question of variables!

Learning about friends

I have found that, as in the case of blind people who receive more sympathy and assistance than someone who is stone deaf, so it is with the paralysed but STILL VOCAL stroke patient, who will attract more sympathy and willing helpers than the poor VOCALLY INERT stroke victim. Any would-be helper only becomes increasingly frustrated by the lack of conversational progress, unless, of course, both are accustomed to sign language.

These vocally inert stroke victims suffer far more from the isolation imposed on them than people can realise, and it is this constant battle of trying to make themselves understood, that causes their “temper tantrums” and, in turn, the eventual irritation and lack of interest on the part of the listener.

The approach of friends and the public to my sister and my husband has been so totally different it is worth recounting. My sister, mercifully, never lost her speech. Her paralysed limbs attracted a lot of sympathy from neighbours, friends and the public with whom she came in contact, drawing offers of help; whereas the salivating and speech difficulties of my husband was most definitely not something that attracted sympathetic understanding. It was rather the reverse, “off-putting” in fact, and the general public, with no defined knowledge of the various forms that a stroke can take, can view the dropped jaw and copious salivating as something akin to a mental defective’s appearance, and even in the early days of my husband’s stroke, my friends would address him in a raised voice, dropping a word at a time, as though he were both deaf and an idiot, and this I could see added to his distress, until they learned to speak to him normally.

As I’ve said, my sister met with offers of help and sympathetic enquiries and she, who had never been able to make friends easily, found herself acquiring new acquaintances willy-nilly!

On the other hand, my husband, who is a “Geminian” and therefore can be both a “loner” and an extrovert, loved to indulge in banter and “Micky-taking” and was a well-liked man at his place of work until he retired. Now he found himself isolated by his new predicament, and it only dawned on him gradually that neighbours and friends were not behaving as they used to. This raised a deep hurt in him and I, too, felt the same hurt as his wife, for we are one! This change in attitude was very noticeable, particularly in the case of neighbours who had formerly been so friendly, with my husband being a builder, so that people were often ringing on our doorbell for his help or to do jobs or give advice on their own DIY jobs.

One such neighbour, for whom he had done quite a lot of work after he retired, just to keep his skills alive, and on a neighbourly “do it for love” basis, passed my door one day as I swept my garden path, and stopped to speak to me, and I mentioned it would be nice if he came and had a chat with my husband sometime. How surprised I was when he started making lame excuses and some rubbish about not wanting to interfere! I must confess that, in exasperation, I bluntly told him that he had managed to find plenty of time before to keep ringing on our doorbell when he wanted some job done. He exploded and said he wasn’t going to stand for that, and went off in high dudgeon!

Two other neighbours, whom we had known for years and one of whom, a bachelor, had asked my husband to do all sorts of jobs for him, and was frequently coming around for a cuppa, were invited by me to come and help celebrate my husband’s birthday, together with the wife of one neighbour and another woman friend of mine. They all appeared to enjoy their evening and the buffet I had provided, although never addressing my husband! During the course of conversation, I men¬tioned how much we missed not having our car now and longed to drive into the country for the day as we used to. On their leaving, a firm promise was made to take us for a drive by the husband and wife, and the bachelor would, on returning home, check his diary to see when he was free to come around to chat and listen to music, which was a passion of my husband and him. From that day to this – a matter of three years now – we are still waiting for our car ride and for the bachelor to keep his promise to come around for that chat! I often saw him in the street afterwards, and always there was the excuse he was so sorry, but he’d been so busy, etc, etc. Once we got the picture, we withdrew into ourselves.

We now no longer feel the hurt that we did at the perverseness of human nature, because others, whom we didn’t know before, showed kindness and sympathy once my husband’s difficulty in speaking had been explained to them. So it is a case of “ebb and flow” in relationships – you lose some, you gain some. We must be thankful for the lesson it teaches us – never to expect too much of another human being.

Epilogue

Looking back over the events of the last nine years – and still ongoing! – I have had plenty of time to cogitate, ruminate, meditate and ponder over the vagaries of life in general and sometimes people in particular – those who let you down and those who never fail you; those you can’t see eye-to-eye with – perhaps as a result of you giving them advice or they you, and neither accepting it; and oh! the myriad other strengths and frailties of our human condition.

Then there are the great “imponderables” of life and death and learning to accept what fate offers you; albeit with thankfulness if it is good and courage if it is not. There are lessons to be learned in every aspect of our daily life and the way we handle situations. Most of us find that the difficulties we surmount make us that much more resilient to cope with the next one when it arrives.

However, “saintly acceptance” is not an inbuilt virtue, and for most of us there comes a time when we are resentful, bitter or angry, and these feelings are often the most difficult to live with while they last, but as with bereavement, time is the great healer and the emotions of the heart or mind gradually cease to hurt as time distances us from the event that caused it.

Looking back on past events with a discerning eye is no bad thing, for it makes looking forward to the future not such a daunting prospect now that you are strengthened by your “battle scars”, and never forgetting that it is having faith which pulls you through each and every difficulty.

March 1993

Bill: the Man with Plans
by Joan Roberts

Who were we?

Bill and I met at Art College in 1947. I was a shy seventeen year old and Bill was one of the ex-service students, confident and mature, already married with a small child. We gradually developed a very close relationship and he would spend hours talking about his life, distressing war experiences and emotional problems. He had recurring nightmares about his previous experiences of having been trapped. After his divorce we got married and had two sons of our own, first Tim and then Nick, and lived for some years abroad. Eventually, on returning to England, we both pursued our own careers. After several years apart we both felt that we desperately needed each other’s support and companionship so we bought a house with a beautiful studio that Bill had always dreamed of having. Bill was then working as a graphic designer. We hoped to grow old together with greater understanding and more emotional stability than we had been able to achieve in our younger days. But that was not to be!

Bill was a `maturity onset’ diabetic who got progressively worse over many years. Each time he was given stronger medication he would take that as a licence to act freely again. As much as possible he would cover up his symptoms or the fact that his blood count was high. He would often eat what he fancied particularly when in company or out to lunch with work-mates. He never wanted people to know that he was diabetic.

As Bill’s diabetes became more severe, so the complications that often develop began to manifest themselves. Among other things, he began to have chest pains and shooting pains down his arms or legs. In fact he had such a myriad of symptoms, including extreme fatigue, that even when he was fairly stable with his blood count, we began to wonder if he had some other complaint. After trying many things, even going to an ME specialist, our doctor eventually agreed to refer Bill to the cardiac specialist at the Royal Sussex, Dr Chamberlain. He confirmed that Bill had acute angina and a more balanced treatment began. However he developed more serious heart pains, beginning to wheeze with fluid on his chest and eventually he was referred to Kings College Hospital in London for an angiogram, which showed that two of the arteries were between 70% and 90% blocked, another was severely narrowed and his heart showed that at some previous time he must have had a heart attack.

The Day it Happened

Driving him home from Kings College Hospital only two days after the angiogram, was a long and arduous journey through London traffic and only when part-way home did Bill admit that he had had a peculiar and unusual pain in his chest ever since the operation. I was really worried and tempted to turn back but the traffic was so horrendous that it was easier to drive on home.

That evening there was a gale and Bill insisted on seeing to the storm damage, only eventually being persuaded to go to bed. I was very distressed and tried to stay awake and watchful of him but the extreme tiredness eventually got the better of me and I slept. I was suddenly awakened and leapt out of bed. Bill was sitting on the edge of the bed groaning and shuddering with all limbs tensed and obviously in pain. Not sure if it was a heart attack or a stroke but sure it was serious, I shouted to my son to come quickly, flung a blanket around Bill and phoned the doctor on duty. I felt it was fortunate it was not Bill’s doctor from our practice as by now I didn’t trust him. The duty doctor instructed me to ring for the ambulance at once, which I did.

The ambulance station being close by, there was a quick response and the doctor was hard on their heels. The ambulance men calmly took over, I dragged on some clothes and sent Nick ahead with Bill while I gave some details to the doctor. I had had the presence of mind to ask the ambulance men which hospital they were taking Bill to, which was fortunate because I drove so fast that I got there at least five minutes before the ambulance which must have taken a different route. Poor Nick looked really miserable and didn’t want to stay in the hospital and sat slumped in the car.

The usual take-over by hospital personnel ensued and I was asked to wait outside. This I calmly refused to do and explained that whatever they did to him I would not get in the way or freak out, so they let me stay. I find it difficult to remember exactly what happened but it seemed an interminable time while various tests were taken, details demanded, records sent for etc, etc. I think Bill was being sick, but it all seems rather a haze. I can only remember holding his hand and waiting. Eventually I was told he had had a stroke and he had a drip feed hitched up for the insulin. There was no space in any ward and we had to wait for a discharge to take place. We were taken up to some other ward, I think it was Ear Nose and Throat, and Bill was `parked’ there still on the trolley for several hours. Occasionally a nurse came by to check routine things like the drip and to clean up any mess but she could not tell me anything. I realised by now that Bill was pretty bad – almost completely unconscious, drooling, unable to communicate in any way and I could see one side of his face was paralysed as was his right hand. How much more was affected I was not sure but I felt he was possibly dying. I just felt convinced that if I held on to him constantly I could transmit some strength from my body to his. So I did. I never left him, only to go and tell my son to go home and fetch some things that we needed.

I think it was about eight hours before we got a bed in Baily Ward and from that moment things changed. I was suddenly surrounded by concerned and caring nurses who instilled one with confidence and optimism. They made Bill comfortable, brought me a chair, offered me tea, pillows to rest and were ready to explain exactly what to do. There was no question of my leaving him – it was my decision and they respected that. I was offered a camp bed to sleep in or a foot rest for the chair. They talked to me about his likes and dislikes and general welfare, recognising that I would know certain factors about his previous history. They were very much in charge of the situation and gave calm quiet advice but were pleased to involve me as much as possible.

I continued to hold Bill’s hand constantly and talked and talked to him to try and gain a response. As the ward quietened down for the night and another shift of nurses came on duty I still felt well supported. I just watched and waited all night.

People’s reactions

When Bill had his stroke I had partly expected it to happen. We had felt desperate about his treatment and did not know which way to turn. I informed Bill’s work, friends, relatives, and anyone Bill had promised to do things for. It is strange that when there is a crisis the very people that you thought were your friends find themselves suddenly rather `busy’. At first one is dismayed and rather hurt. However, on reflection, it is those very people who have a problem with their own feelings. They are the ones to pity because they miss out on the close bonding of a real friendship that develops under shared distress. So what happens is that they fade into insignificance. They were a brief encounter in one’s life, a shallow fleeting relationship of little value. Some attempts may be made to visit the patient, but when they find that the lively fun-loving character that made them laugh is now unable to communicate, lies in bed drooling, clasps their hand and tries weakly to give a lop-sided smile – they cannot cope. What is it in society that makes us so easily shun the disabled, or avoid meeting the eye of the mentally handicapped? How glad I feel that nowadays children will possibly meet them in their schools more often as they become integrated into mainstream education and are given equal opportunities. I was continuously conscious of the fact that Bill had rapidly regained full receptive powers and understood absolutely everything that was being said. He was able to reason, reflect and worry about what was happening but was entirely trapped within his own body. What a desolate state of frustration that must have been.

Bill’s family were very shocked at the news. He meant a great deal too them and they wished to be with him at once.

When visiting, the immediate reaction of some people was to crowd round Bill’s bed stroke him and say in pitiful voices such things as “Poor Billy, his brain is affected.” I was terribly angry that any one should talk like that in Bill’s hearing and had to walk out of the ward.

On the other hand there were those who quietly did small things, knowing that Bill was receiving all the care possible. We were lucky to have some very valuable friends some of whom we had known for forty years or so. Several of them journeyed long distances to visit Bill and to sit with him.

The need for laughter

As the shock of the degree of Bill’s disability sank in, my own personal determination and strength seemed to grow and I resolved to help him to recover as much as possible. This became my total concern almost to the degree of an obsession.

Before the stroke Bill was always one to rise to an occasion. However depressed he was (and he once said he thought he was a manic depressive), he could always joke, tell yams, play tricks on folk and become the life and soul of a gathering. This was something to hold on to.

From the moment that Bill could sit up and try to do simple things, we laughed. The laughing could easily be construed as laughing at – in fact it was laughing with – for Bill, as ever, rose to the occasion whenever he could. An object would slip from his grasp and he would try to reach for it, paw it, not be able to grasp it again and I would laugh and he would laugh with me. He began to use his hand more and more and in a few days could walk slowly with help.

Almost from the first week I challenged him with tasks and games like draughts or patience. At first he showed no interest and it was very slow going because he required a lot of persistent coaxing and encouragement.

Once his ability to walk improved we would journey to the bathroom to wash. I tried to make him do as much as possible for himself, even though for each act and stage of the process he had to be instructed. “Now clean your teeth” (he would wait for the command), at which point he would pick up the hair brush and try to put it in his mouth. We would both collapse into hysterical laughter.

Before he could begin to learn to talk again the speech therapist advised us to help him learn to move his tongue and to swallow. This involved putting ice on his tongue or we tickled his tongue, his cheeks his throat – always trying to smile and joke. Later when he began to make sounds again and try to say something he would breathe in – hold his breath – and almost burst a sound out. It was often quite ridiculously wrong and we naturally laughed and he would join in.

One day his younger sister took us out for a special car trip. Bill was enjoying the ride in the back and trying hard to express his joy started to talk and his first real word came out at last. “Bugger,” he said proudly! Well, what an achievement!

Even though at times he felt utter despair at the slow progress he was making, we struggled to recapture the lighter side of life. What else was there to do? To allow him to sink into despair and despondency would have had even more adverse effects on his progress. So we continued.

Eventually when able to speak in streams of `words’, (jargon dysphasia), most of which were meaningless combinations of jumbled sounds, he would engage in ‘conversations’. As a close family we could often interpret his intentions but sometimes he would earnestly say something, sure he had made complete sense, then looking us straight in the eye he would note our blank expressions. “No?” he would ask with rising intonation. Seeing us smile and shake our heads he too would laugh. Sometimes we would even try to suppress our laughter because his look was tinged with despair and a hug would be needed too.

Progress and coming home

After eight weeks the time came to prepare for Bill to come home. The physiotherapist had been very helpful and had trained Bill to walk up and down stairs etc. She had visited our home and ordered aids for the stairs and bath etc. These had been installed reasonably quickly and I had been fortunate to find out how to go about getting allowances and after that the local social services were helpful with guidance. The speech therapy was well under way and Bill had developed a good relationship with the therapist, Sharon. Twice weekly sessions were planned. The preparation for discharge was well handled by the hospital.

Once Bill was home permanently Nick and I had to cope with all the difficulties. It was strange at first because responsibility weighed heavily upon us. Nick stayed home to look after him through the day while I went to work as I was the highest earner. The mortgage had to he paid. It was obvious that Bill would never return to work and he had to take early retirement.

I had notified his employers about his stroke and the degree of disability explaining that he would no longer be able to work. Alas, there was another example of the total lack of understanding at his work when they replied with an official letter to him to ask him to come in and discuss the terms of the settlement!

Bill wanted to do things around the house as normal so giving him some simple tasks to do and making him really feel useful was a help. Never mind the disasters. As long as a wary eye was kept on him these could he laughed at and shared. Making a cup of tea and putting the milk in the teapot won’t happen too often for practice makes perfect. Never scold – they can’t help it. Patience is needed when the knobs of the radio get all mixed up or the rubbish appears in strange places. But soon things began to get easier as Bill’s awareness grew.

Bill’s joy was so immense when at last we could cuddle each other in the warmth of bed and sleep peacefully. We soon slipped into a routine which was helpful for Bill to keep track of things.

Before long Bill wished to go out to the shops independently and I got rather nervous about this. Initially I surreptitiously followed him but he was quite alright. I advised him to only go a short distance and he liked to go to the little general store at the end of our road. Here he would take a list (he was never able to talk well enough to ask for things) and the shopkeeper would let him take things from the shelves. Bill would come home well satisfied with his purchases. I would try to receive them joyfully but there would be many things I did not want. For example, Bill got into the habit of buying tins of chopped oranges to make marmalade and would come home with several tins on each shopping spree! It is another form of friendship when one can liaise with the tolerant shopkeeper who is able to understand the problem. All I had to do was take them back quietly one day and get my money back. At all costs it was important for Bill to feel valued and independent.

Bill’s favourite nurse, Jenny, kept in touch and invited us to visit her at home, so a firm and lasting friendship was established.

Beginning to learn again

I had such a strong feeling that inside this damaged body there was a fully comprehending person. The only way I can describe it is that it is like a two-way radio where the message is fully comprehensible in one direction only and because of some electrical fault, however hard you talk it is not possible to transmit anything back in the other direction, or if you do it becomes scrambled. I wished to maintain Bill’s confidence as much as possible and protect him from anything that would undermine his self esteem.

I had already started collecting pictures from catalogues and colour magazines and made a scrap book with pictures of things that approximated as nearly as possible to familiar things in our home. I collected pictures of actions (jumping, running, eating, drinking, etc) and we would sort through them and I would talk about them and try to get Bill to recognise them. He had learned to make some sounds and if I began the word he eventually became able to finish it. I printed labels to go with the pictures. These were carefully done in a clear script from the computer rather like a child’s reading book. Shoes, socks, slippers, etc. This would link with what we were talking about as he got dressed and to reinforce the learning we would go over the words both in the dressing action and the scrap book.

I found that conventional phrases which are deeply ingrained in most people’s memory came more easily. “How are you?” Bill could be asked. “Alright thank you” as an almost automatic answer was not too difficult. Things that did not require too much preparatory thought, such as opposites like “Pepper – and – ? Salt”, he could answer quickly. So we started on some basic nursery rhymes. I used ones which had words in that we were already practising. “One, two, buckle my shoe,” and so on. This was quite successful particularly when they were printed out and the repetitious nature and his deep memory of these words enabled Bill to develop a kind of confidence in reading them. I was never quite sure how well he could read within his head. He couldn’t read out loud. But he often sat with some text in front of himself as if he was reading.

By now, ten to twelve weeks after his stroke, two visits a week were being made to the speech therapist and two helpers were arranged by Barbara, the organiser of the Brighton Stroke Association.

I had read Roald Dahl’s book about his work with his then wife Patricia Neal who with constant help had made a remarkable recovery. It was said that continuous stimulus had helped her enormously. I followed much of his advice and everything else that I had read seemed to confirm this. So as soon as Bill was home I used all the cheek I could muster and approached a number of people in the neighbourhood to ask them to help. I arranged to have some willing volunteer, friend, Speech Therapist or Stroke Volunteer to visit Bill or for him to visit both morning and afternoon almost every day. Where this could not be managed one of us, particularly Nick, would work with Bill, as having watched the Speech Therapist we could continue with the work at home.

It didn’t really matter what one did as the stimulus itself was encouraging him and forcing him to communicate. One person just came and played games with him, while another who had some artistic talents and knowledge would get out artifacts and books on art and talk with Bill about it. This Bill enjoyed immensely as he felt that he was being treated as an equal and not as a child. In fact when on one occasion they were examining a lovely book about Chartres Cathedral and the view looking up the aisle, Bill suddenly came out with the word `chancel’ and even wrote it down. He was elated by this success.

We tried the Stroke Club at Newhaven but he always came away terribly frustrated and angry and we had to give that up.

Matching tasks with his capabilities and intellect was not easy. Here was a man who had been involved in research about the very kind of brain functions that he was wrestling with. His frustration must have been a real strain on his patience yet thinking back I feel that he rarely lost his temper.

Sometimes he would just sit and watch television. I was not sure how much he could follow a complicated plot but when there was an emotional scene he would burst into tears.

The development of Bill’s writing was very interesting. At first he could hardly hold a pencil and could only trail it across the page in a scribble. Soon he started to make letter-like shapes. Mostly capital letters. Attempting to write his name would only produce these random semi letters. Next there were recognisable letters but with no sense of order. Then he could copy accurately. At first only his name and then only by copying one letter at a time. Eventually he began to write his name or copy a few words in a shaky style closely resembling his former handwriting. One day he sat down with a piece of paper and wrote a whole page. This was an amazing feat because on examination he had written nonsensical words except for a few instances of words such as `and’, ‘the’ and so on. He was writing just as he was speaking. He was really pleased with this effort. He was so keen to learn that I tried using an imaging technique that is used with children learning to spell, in an attempt to improve Bill’s memory for writing. He would trace over a word with his finger, look at it carefully and then cover it up and try to write it from memory. He began to have some success with this though he was not able to retain it until another day. He took to copying things trying to improve his style of script. He used to do beautiful calligraphy and he made great efforts to write out a particular poem he had admired for a long time previous to having his stroke. I think that this poem, ‘Warning to Children’ by Robert Graves, may have quite strongly evoked his feelings of being enclosed and trapped. Somehow all his previous nightmares of being trapped had come true. Being totally unable to communicate was for him the ultimate trap.

His efforts at writing this poem produced some quite good handwriting and he was moderately pleased with himself. Who knows, this might have gone on improving but by now he was getting a lot of pain in his hand and all down his right side.

On consulting with Dr Chamberlain I was told that Bill’s brain was developing new pathways and that unfortunately these were passi¬ng through a pain centre. I did not like the look on Dr Chamberlain’s face and there seemed to be nothing to do about it. Bill was desperate to learn and the more he learned the worse the pain became. Sometimes he would cry out and his hand would swell and would be too sore to even touch. My apprehension grew.

Bill loved being able to go out for a drive but difficulties had arisen because he could not make himself clear if he wished to go to the toilet. I had exchanged our car for a camper and this proved to be a real boon. I bought a little toilet which lived under one of the seats and Bill could just get up and use it when taken short. At first we took small journeys down to Seaford to watch the waves, then we progressed to longer trips: a one-night visit to the Singleton Museum near Chichester, a holiday in Cornwall, up to Herefordshire and on to Shropshire where we visited an open air Museum where he had a lot of fun and a car rally which was the highlight of the whole summer for Bill. But he felt claustrophobic and even panicky in the camper and these fears of being trapped got worse so, seeing the toilet problem was not so bad now, I decided to spend some of his retirement money and bought a car with an open top.

The Final Stages

One of the worst things at this time was the realisation that time was running out and I still had to work to earn enough money to keep up the mortgage. I was working at two jobs and felt pretty exhausted. Because of Bill’s illness it was impossible to contemplate a move and anyway he loved his house and the studio. It was a dilemma because I felt that I wanted to spend more time with him. I would sometimes stay awake at night and watch him sleeping, trying to put myself in his position. I felt that he too knew deep down that he did not have much time left yet he maintained that enthusiasm for living and the intense desire to achieve as much as possible in his life and my heart went out to him. Sometimes I would return from work to find him sitting in his beloved studio just gazing into space. He would sit at his desk trying to draw. By now he could copy drawings. So he would copy ones he had done just before his stroke. They would have quite wobbly lines but were reasonably good. If he tried to create a new drawing it would be minute like a postage stamp and would contain a lot of scribbly overdrawing.

Just before Christmas we had a lovely `luxury short break’ at an hotel overlooking the sea. On the way home we drove through the New Forest. Bill kept saying “Beautiful! Beautiful!”

Only a few days to go before Christmas I was awakened early one morning and found Bill sitting on the edge of the bed rocking backwards and forwards clutching his head and crying out in pain. We got him to hospital and eventually he was received into Baily ward.

He was again among friends, but I was despondent and felt so convinced that this was the end that I know I was not using the same strength to literally will Bill to get better that I had used the previous time. This time I just sat there watching him and waiting. It is a strange feeling of helplessness that comes over one.

At one point when surrounded by people trying to reinsert the drip needle Bill turned over in despair and I felt sure he said “I’m going to die!” This was so clear that I asked him to repeat it and I was sure that I heard the same again. He turned and gave me a look of pity and patted my hand in a reassuring manner as if to say he was sorry for me, and in a way I felt he was saying “Good bye,” and he closed his eyes. Shortly after this he appeared to drift off to sleep. At this moment a whole choir came into the ward singing carols and all the lights were switched off so their candles could be seen. It was late on Christmas Eve. Feeling that I needed to gather some strength for the final stage I decided to go home to get a bit of sleep. I kissed Bill quietly and left a message that I wished to be informed if there was any change. I had only just got into bed when there was a phone call and my Nick and I hurried in to find Bill lying peaceful and quiet. We held him and spoke to him gently. For one moment his eyes flicked open. We cuddled him for a long time quite calmly, not crying but slowly coming to terms with our loss.

Postscript

Two years later, only five days after the anniversary of Bill’s death, Nick’s baby was born. Bill would have loved to have seen her. What a character she is and so like Bill! I know what he would have said, “Life goes on!”

15 March 1993