Chapter 4.6. Get ready to ... Play the hardest work of your life. Do not say they were not warned. We told ourselves at the beginning of this short manual.
scared to death. Who has had a stroke can happen to fall asleep in the most preposterous, sometimes in the middle of a conversation and make strange noises sleep, hold your breath, snoring, and move limbs with involuntary movements. Since you probably have not had occasion to witness this during the hospitalization, your caregiver will scare you. Add this fear to the fear of falling (both) or to fail, or not to have a life again and you will realize that the situation is very complex. It is also likely that you have been told that once a person has had a stroke there is a good chance to have another one, so eventually bring your family at home can be a source of new distressing concerns.
Manage seizures. This seems to be one of the most often neglected in the information given to the caregiver. The largest fear of the caregiver who is involved is a second stroke, this will not appear until the seizures that are much more fearful of stroke itself. Given the existence of brain injury, there is always the possibility of developing seizures after months or years after the stroke. Sometimes these are isolated incidents, sometimes in a series of repeated episodes but there are many medications available to help in the prevention, however, 'are full of side effects and thus find the best medication for that person may require a process of "evidence and errors. " Be aware that there may have seizures is not a comfortable thought, therefore, if this occurs, you will benefit from Being able to recognize in time such an event. As can be frightening to witness a seizure, it is useful to know that many of these leave no permanent damage as it does for stroke. Only a small percentage of people with stroke suffer from seizures. But it is not possible to know who will return to this small percentage so try to have a frank discussion with the doctor who has followed your family, ask me to explain how to recognize a crisis and what needs to be done to address it. In the long run this will give you some peace of mind.
Managing incontinence. It 's a very complex problem and is another of those problems for which There is a wide diversity of situations in the field of stroke. It seems that every caregiver is intended to address this problem in some way. We have already 'seen in a previous chapter when we discussed the possibility that it may not be true of incontinence because of failed communication: the patient is not able to understand it must go to the bathroom. On the other hand it is possible that people after stroke have a real deficit in the control of urine or the hive, sometimes it is a temporary problem, it can sometimes benefit from a special rehabilitation but sometimes the pads will become an aid permanent. Sporadic incidents can happen even to those who have kept a better control of bladder or when the hive mind wanders, in a crowd or in situations of discomfort or stress. Then you are not able to prevent the accident. In such cases it may be useful to check the exact location of the bathrooms if you are in new environments. Be prepared for any eventuality, however, when you go around (a change of clothes or a diaper worn in situations "critical"). There are also drugs that increase the control and if it is too late will be sufficient to clean the carpets unfortunately "accident."
understand that the consequences of stroke can last forever, but no therapy. Another of the few certainties is that the caregiver at some point there will be more if not using the rehabilitation provided to private. In that case, the service seems to have the cards (which does not share with anyone) thanks to which it is able to tell how much therapy is enough for that given patient. Just when you think you see improvement, they are not considered significant from a functional point of view and you're left to yourself. It seems that the whole process to ensure that everyone can benefit from the rehabilitation is linked to the possibility of real improvements but it's probably done a calculation on the months and days of service provided relative to some average set a priori (Translator's note: according to the guidelines national rehabilitation) which is not necessarily communicated to patients. Somehow, somewhere under the cases studied in stroke rehabilitation has been established that it makes sense to offer patients (Translator's note on the basis of a cost-benefit reasoning) and therefore have set the rules, or at least that is what it seems judging from the usual services provided (Translator's note in each case whether the patient is close to achieving a certain improvement in X, such as walking or talking, the service will most likely extend therapy beyond 'the limits). Then there is the possibility to be prescribed, at a later time, another cycle of maintenance or rehabilitation in the event of major functional changes (eg, for a long period seems nothing happens and suddenly, and apparently there's a better chance of some function). Improvements and declines will be a constant in the future life of the person who had a stroke. Be gentle with the doctors and professionals, you need to remain at your side. (...)
Attending the disappearance of friends and family. This is one of the hardest things to accept. The care that the caregiver provides a task can become very lonely. Since the process of recovery from stroke is very slow, the whole process far exceeds the attention span of your friends, even the most expensive. When it comes to stroke, you feel very warmth and support from friends and family but after a while, 'when the crisis is over and you are sure that the person will survive, everyone starts to rotate again and since you are not able to keep their pace, you will be left behind even if you still need help. In addition, people often people feel uncomfortable in meeting a person who has become disabled, often because it reminds him of their vulnerability and it is difficult to accept. Others may assume that you're too busy to want companionship or social life. The solution to this problem is to mourn for your loss and then put in motion with energy, to be determined and try not to attach too strongly to the limits of those who will never understand your new life. When the people you need to pull back, look for new friends, new groups, new activities pleasant even in the realm of disability (but remember that we all need to have contact with outsiders, who have nothing to do with the stroke). Avoid isolation. There may still be a life after stroke, different but still beautiful. Unfortunately, good things will not be knocking on your door. You'll have to go looking for them, and then crearvela yourself this life, for you, your family and your sanity.
Living depression. Depression comes when the caregiver and the person with stroke are beginning to understand that disability is a reality. Do not fight it. It 'a terrible thing happened that made your life to pieces. Do not pretend it did not happen. You have the right to be angry. It 's normal, if you're married, feel resentment for your or your partner, because he had a stroke and has upset your life and then feel guilty about these feelings. It 'also natural that the person who had a stroke to feel angry towards the caregiver and overly possessive with respect to his attention and his time. You would not be human if you were sad and downcast at this time. Be honest with yourself and with others, to pretend that all is well and that there are problems is not a way to sort it out. Requires too much energy put on a mask of positivity, while crying allows you to pull off a lot of emotions that should not be withheld and even men should not be embarrassed by their tears. You'll have to go through all these emotions to leave behind. At the end you can afford to be happy again. For you there may be more laughter and smiles despite the situation in which you have found this path, but may require outside support, professional help. Do not hesitate and do not be afraid to seek a qualified therapist (as a starting point is your doctor). Look for support groups (Translator's note asking for information on Aphasia Association Ligure ALIAS) for people with stroke and caregivers. Try to attend some group, even if you get a professional counseling, in fact, depression is also fighting with the company. Compare yours with other stories of war, can change your life and the lives of others.
Remember that doctors, physiotherapists, speech therapists, occupational therapists, do not know everything. At first, when questions were you doing on the recovery you were told that all strokes are different, and that no one could predict when then inform you that the rehabilitation will not be provided, assuming he can ever come to anything, we consider part of a homogenous group ... if you have several contacts in health (medical specialists, therapists, etc.). it is likely that one day they come to contradict one another and offer advice in conflict with each other. This becomes very problematic if the conflict is about drug therapy. Establish a good relationship with your pharmacist to help you be on guard against possible errors, born of this confusion, and taking into account the possibility of buying a book that will explain the nature of the medications you take or have taken (Translator's note America in the Physician Desk Reference). Please feel free to always check the nature of a new drug that is prescribed, do it personally if the Your pharmacist reference is on vacation and can not help you.
confident that things will improve and become easier. Even if your family will do the same. Doing things for the first time is often the most difficult thing, but little by little even the most difficult tasks when entering the routine has become a practice enough. Survive. Try to look at the great tasks that await you as if they were composed of sub-tasks. Keep in mind the overall objective and focus on every action necessary to get there. The sum of small tasks will help you achieve the objective.
THE MANUAL OF FAMILY 
