A General Perspective on Stroke Care
By: Catherine McCann M.I.C.S.P.
I was delighted to be asked to write for the V.S.S. and my contribution will be as a Physiotherapist, but from a personal point of view. I am now thirty years working in my profession and during that time I have come in contact with many people who have had strokes. In many instances I have also had involvement with their families.
My particular interest is in the stages after the acute and active rehabilitation phases have ended. Obviously, how people get on in the long run will depend on the severity of the stroke itself and on the person's management in that early period. But there are also many psychological factors to be considered by all involved in each particular case.
If a stroke is reasonably severe, the person is normally hospitalised and their care is managed by a multi-disciplinary team. My experience of the Dublin hospital scene is that the quality of this care is good. However, I do feel that there is one weakness that could be improved - namely, more involvement of family. Such involvement from day one, if possible, is essential. Involvement of relatives plays a huge part and determines in the long run whether maximum recovery, in the fullest sense of the word, is obtained and maintained over the years to come. Close family members need to be given the necessary psychological help and insight required to cope with the often dramatic changes that a stroke can bring.
A stroke deeply affects not only the persons themselves, but also their families. Support is necessary in helping everyone concerned to work through what has happened. The ideal is that a sense of both idealism and hope is fostered at all stages of recovery and after. It is not easy to get this balance of hope and realism right either by the person, their family or even by the health professionals concerned.
Following the usually short acute phase, there comes the recovery period when rehabilitation takes place. Progress in the beginning is normally rapid but later slows down. The rate and amount of recovery depends on a number of factors, such as the severity of the lesion, the person's age, their former health, etc. It also depends on the support, understanding and realistic encouragement they receive from the people close to them.
In the rehabilitation period, hard work from the person, therapists and others involved can lead to the regaining of a lot of function. This can range full, to being partial or even minimal.
Key family members need to get involved at each stage of the recovery process. This requires gaining knowledge and insight into the nature of a stroke and their relative's stroke in particular. Each stroke is unique and produces its own set of problems. The individual is also unique and will react and cope in his or her own way. Family members must also be taught the skills required to help their relative and gain the confidence necessary to use these skills through practice.
Health professionals, therefore, must spend time with families, facilitating this process of confidence building, teaching skills and imparting insight. The person with the stroke goes through a huge upheaval and he or she has to try to adjust emotionally and physically to what has happened. This brings with it inevitable mood swings - delight when the function improves and feelings of frustration and despair at either the lack of recovery or the slowness of recovery.
During the latter part of the rehabilitation phase, the level of disability that the person is likely to be left with emerges. Usually this only slowly becomes evident to both the person and the family. In my experience, there are few who can face this reality at this stage. It takes more time and a lot of support. Facing the truth is very difficult and needs sensitive handling. All through this period there is usually considerable help form a variety of health care personnel
Anxiety levels can rise as the rehabilitation phase draws to a close. Firstly, the level of activity around the stroke person is curtailed, e.g. there are no more investigations, less visits from the doctor, etc. This can increase the fearful feelings attached to going home. The stay in hospital can last normally from six weeks to six months. The most useful recovery in all people with strokes takes place within the first six months, but recovery does continue up to two years and sometimes longer.
Secondly, when the time of discharge approaches, the thoughts of going home while pleasant can be fearful. "How will I manage?" is the spoken or unspoken question. How will I manage in so many areas - activities of daily life, socially, work, leisure pursuits etc. Some may be fortunate to have some step-down facility added to their care - some have none. But the day comes for all when they are finally discharged home. Some may attend a form of out-patient service for a while, such as a day hospital, where the security of the link with the hospital is continued. But an end comes to that also. It would be ideal, in my opinion, if some form of Outpatient Rehabilitation service were available to all people with strokes, on a phased down basis for that first two years after the stroke. This, as far as I am aware, is not at present available anywhere in Ireland.
The Patient and their Family on their own
When, finally, all institutional support strings are cut, the person and family are on their own. But I add immediately this is not entirely true. There are community services available, but the extent of these largely depends on where the person lives. The ideal course, is that the person and their family on leaving the care situation, either as an in-patient or out-patient, have adjusted well and have learned to cope with the limitations brought on by the disability. To have achieved such adjustment and coping ability at this point is asking a lot of everyone. It may or may not have happened. Accepting and learning to cope with a stroke is a process which for many is a life-long one.
In my experience, it is not the actual level of disability which is the main factor in determining who copes well and who does not. Rather, it is the outlook and attitudes of the entire family unit, including the person with the stroke, that is decisive.
Some people with a lot of disability 'overcome' it by maximising on the function they do have and mentally deciding that they will live life to the full despite their limitations. This requires an ability to focus more on what they can do, rather than on what they cannot do. Other people, even with less residual disability, can do less well, by failing to work towards acceptance. For such people, often their world becomes small and closes in around them.
The secret, in my view, on how to live with a stroke, as with many other problems, where the situation cannot be changed, is to work gradually towards acceptance. It takes time, usually requires help, but is essential if a worthwhile life is to ensue. Having a stroke is like a bereavement - the person has to learn to say 'good-bye'. In this instance, 'good-bye' has to be said to certain functions no longer achievable. It is a painful process, but there is a way out if the stages of grieving are gone through.
Stages of Grieving
The stages of grieving are denial, anger, bargaining, depression and finally acceptance. At first, the person with a stroke denies the reality of the situation, then gets angry. After that, there is the bargaining period which often lasts a while. It can be with God, themselves or other people. This is followed by depression. A period of depression is almost inevitable for a while. But if this is understood by all as a natural step on the way through to acceptance, then, hopefully this period will be short and not too severe. Finally and again hopefully, the person (and family) after this difficult journey, will arrive at acceptance. Full acceptance may not be achieved - but some level of it will make the situation more livable with. The greater the acceptance the greater the chance of a fuller life.
Having a stroke is not the same as losing a limb, So while a person must learn to say good-bye to a function, they must also be helped at the same time to 'befriend' the not fully functioning limb. Indeed it is helpful if the person can make 'friends with' the affected side of the body. Rejection is not good, especially when it is rejection of part of one's own body. It affects the image a person has of themselves and this in turn affects how he or she relates to other people.
It is good if the person can go so far as befriending his or her total self - the 'me-who-has-had-a-stroke'. It is not he end of the world. Some of the most alive people I know are confined to wheel-chairs, some since birth. It is the person's attitude which is all-important, i.e. managing 'me-with-a-stroke' or 'my-relative-with-a-stroke'. Families have also to work towards acceptance. It just doesn't 'happen'.
When a certain acceptance and befriending has been achieved, people with strokes should take themselves off the ill list. The person may still have some dependency needs i.e. where help is needed in the performance of some activities, but this does not denote illness. Small children have dependency requirements, but they are not considered sick. People with strokes can get ill like anyone else but most of the time they are not ill. They should not allow themselves, or other people to see them as 'sick'.
Families too should not have an illness outlook. One way of showing this is by not giving unnecessary help - the great rehabilitation dictum is 'Never do something for someone that they can do for themselves'. But a corollary is also true -'Never ask people to do what they cannot do'. If families continue to look on their relative as ill, then illness behaviour can be a consequence and this is not desirable.
Sometimes, if this happens, individuals use their stroke as a 'crutch' which they hang on to for the rest of their lives.
As I have already said, the process towards recovery is not easy. People need to be gentle with themselves in facing negative feelings and working.
Recently I had the experience of a broken collar-bone. One arm was strapped to my side and so it was out of action for a while. As I learnt to do everything with one hand I often thought of people with strokes. I had to manage as I live alone.
It was an interesting experience. More interesting, though, was some of the things that I learnt about myself. I discovered that in the moments of self-pity - where my self-talk was 'poor me', I did not cope well and the situation became bleak. Most of the time I did manage to get in with it and make the best of the situation. I do know it is more difficult for people with strokes. My arm would get better, theirs might not - but there were lessons that I learned.
The 'poor me' phrase and the comment 'why me' are destructive. They pull a person down and often pull down with them the people living close to them.
I always feel sad as a therapist, when, a year, maybe many years after a person has had a stroke, I hear them say: 'why did it happen to me?' It is sad too when one hears 'if only' or 'when I get better' several years post-stroke.
The majority of people who get strokes are not young. So added to the stroke trauma is facing the aging process. The very suddenness of the stroke can propel a person more quickly into the older years, without giving the normal time for adjusting.
Creativity and Enjoyment
Creativity on the part of the person and the family can be a great help enabling people to look at new ways of doing things. There are often different ways. Also certain types of aids can be beneficial. Trying to do new things is also to be encouraged.
Enjoyment is vital and whatever fosters this must be earnestly sought. It is important that people do not cut themselves off from others and face situations as far as possible. Indeed it can be very helpful when people can reach out beyond themselves to help other people. Learning to become a giver again can be very beneficial.
Obviously, the social area is more difficult for those with speech or hearing impairment but again, an attempt to save people from turning in on themselves must be assiduously worked at by encouraging them to become involved in some way with people.
It is important that each one looks after general health - seeing that they have adequate rest and exercise and a suitable diet. Overweight and underweight should be avoided and a level of fitness appropriate to the person's age and condition should be maintained or regained if lost. A good sense of physical and mental well-being greatly helps a person who has had a stroke.
A final word for family carers. It is vital at all stages of 'stroke' spoken about in this article that individual family members look after their own physical and mental health. It is bound to be at times a stressful situation but if it is to be managed well it is important that family members come together to share the care as best suits that family.
Too often the burden is left to one or two persons. These are almost always the women in the family. This needs to change. When families co-operate in sharing the care it is astonishing what can be achieved for the person with the stroke. I have seen also in this situation where the family themselves benefit including, at times, the grandchildren. Family members can be drawn closer together - qualities of character are elicited, such as generosity and caring, that might never have come to the fore, or, have been noticed within their own family. When families are creative and pool their resources, both personal and financial, it is truly amazing what can come about.
It is essential that carers care for their own health. This includes looking after their physical fitness levels. As with their relative who has had the stroke, they too must work at keeping fit for the task on hand and therefore they should have adequate rest and exercise and a suitable diet.
Especially, they should take responsibility for their mental health. One essential requirement for this is that they make time for themselves. It is important that they get away at times from the caring environment and have some time for personal leisure pursuits. The more demanding the care required, the more vital it is that these steps be taken.
A Positive Note
Finally, to end on a positive note. Not all is bleak when a member of the family has a stroke. There are positive aspects to every stressful situation and everyone is helped if they can at times focus on some of these.
For example, people meet people they would never have met otherwise, and friendships are often formed. People discover inner strengths that might never have surfaced. Values change, often for the better and life in general is viewed with a different perspective.