Self-care: underestimated after brain injury

What do I mean with 'self-care'? Well, in rehabilitation it is an essential component of the healing process and the road to returning to your own house. To make things easier, I have divided self-care into several daily life activities, all centered around and in your home: - cleaning yourself (brushing your teeth, shaving, washing, cutting your nails, cleaning your ears) - going to the toilet (doing this safely and hygienically) - dressing yourself - cleaning your clothes and shoes - taking care of your medication - preparing meals and cooking - cleaning your house - taking care of your finances and your mail

In fact, self-care amounts to all the trivial daily things everyone has to do as a necessity to live a pleasant and healthy enough life.

As you have guessed already, brain injury can have serious negative consequences for taking care of yourself. Indeed, after a stroke a patient usually is 100% dependent on another human being! This dependence gradually diminishes in six months but especially after a stroke, independence will never be the same anymore. This is a fact a lot of medical professionals do not realize enough. In telling the stories of real patients and their families, I hope more people will realize how much an impact brain injury can have on someone's autonomy and self-care. So that more help will be offered the next time you'll meet someone with a brain injury.

Self-care: Cleaning yourself and your belongings

Everyone has to clean him- or herself everyday. Brushing your teeth, cutting your toe- and fingernails now and then, going to the toilet and cleaning yourself afterwards in a hygienic way, taking a shower. All seemingly simple activities. That stops immediately after having a stroke in which one half of your body is paralyzed. To imagine how extremely hard it is to clean yourself just try for only one day to do all above mentioned things without your dominant arm and hand. You will soon find out that this takes much more time and costs an enormous amount of energy. Just try to put your stringed shoes on with only one hand. Just go to the toilet and do a 'big' one while not using your one arm and hand. That is extremely difficult and tiresome.

So what happens to someone with a stroke? Well, without help he or she will look like an ordinary bum, with hair and nails not really cleaned, often smelling quite badly. Also, the clothes are more shabby looking, not really ironed, with stains on it. Of course, you'll never get to see this because usually there is someone else who will take care of the cleaning process.

Men tend to forget to shave themselves on the left side of their faces (after a visual neglect). Shaving with a knife has become too dangerous so an electrical shaver must be used.

These examples hold true for strokes but also traumatic brain injury can have special effects on someone's cleaning habits. Although usually traumatic brain injury has less serious motor deficits so that one can use both arms or legs, there can be a change in cleaning habits because of a change in personality. What I have seen the most is that traumatic brain injury makes someone less tidy. As if grooming and washing yourself is not so important enough anymore. So for most men (most traumatic brain injury patients are men), cleaning up is less important and is done less often. Or more sloppy so that they start to look more shabby. Normally, this takes up to one year to correct itself a bit but sometimes this kind of change remains for always.

Self-care: Taking care of your own medication

Self-care does also entail taking care of your own medication. This is an easily overlooked aspect of daily life. Well, of course younger people do not use much time-constrained medication. Unless diseases like HIV or diabetes are involved.

Taking medication has two fundamental aspects. The first is that you have to remember how much you have to take of what kind of medication. The second aspect is that you have to remember when to take your medication.

Brain injury, especially traumatic brain injury normally results in memory problems. The most encountered problem therefore in taking medication after a brain injury is forgetting to take this medication on time. Usually, someone else has to remind the patient to take the medication. I have read some estimates about how many 'normal' people die just because they did not take their medications correctly, that is a huge number indeed. After a brain injury, people are even more vulnerable in not taking their medication correctly. Luckily, there are solutions for this forgetting. Being alarmed by a special alarm box, using your phone or being reminded by nurses. However, when only severe memory problems are involved and someone is alone at home, only special technologies can help someone remember reliably to take his or her medication. Services like NeuroPage and Neuromax (see in the Netherlands are examples of such reminder services with the benefit that someone can live independently with a serious memory disorder. Unfortunately, not many people know about such technology or it is not technically available due to high costs or missing networks.

Self-care: Preparing meals and cooking

Again these activities seem not so difficult to perform. However, when you look carefully at several people I was amazed how little they knew about hygienic cooking and more importantly, about healthy food. The knowledge and consciousness among 'normal' people about healthy eating habits and healthy cooking is underdeveloped, especially in the less educated. It comes as no surprise that such groups suffer from serious overweight and other related health problems.

Brain injury, of course, does not have a positive influence on your eating habits. What I heard from patients was the enormous effort it took to even prepare a meal. I must add, this is largely true for stroke victims who have a lesser functioning leg and arm on one side. For them, preparing mushrooms, potatoes, cutting vegetables, takes much much more time than for a healthy person. Because of their related attention problems, taking such a long time, they get fatigued more easily than healthy people. Getting fatigued earlier does not help in developing pleasure in doing such activities. Over time, cooking is totally taken over by the accompanying partner, because 'now we eat on time and have more time for other more pleasant activities'.

For traumatic brain injury patients it is not so much the motor difficulties in preparing a meal, but more the planning that is involved in complex meals. To understand this you can read my page on Problem solving deficits after brain injury or Problem solving issues in normal-brain functioning. Furthermore, for traumatic brain injury patients, a complication which is often overlooked, is their loss of smell and associated loss of taste that makes cooking less pleasant. Because of that, meals had to made very colorful or spicy to even taste something. Sometimes even bad tastes were experienced so that normal food did taste or smell awful, leading to eating problems.

As if this is not enough, more problems are mentioned by patients. In preparing meals one needs the proper ingredients. To organize this and to keep track of what and when to buy the right ingredients for each diner, is a complex planning task for everyone. Even a lot of 'normal' people with brain damage do have problems with this. That results in eating less varied and usually in such families most of the time the same food is eaten more than twice every week. After brain injury, the planning abilities can be damaged so looking ahead and deciding what and how much food to buy has become very difficult. When interviewing a patient about his eating habits, he honestly admitted that, living alone, he ate the same microwave instant meals every week so he had no stress in cooking anymore!

Self-care: Cleaning your house

Well, the list of problems after brain injury does not stop here. It is getting depressing isn't it? Of course, you can think of the problems you will have when one side of your body has less strength, in cleaning your windows or your stairs with a vacuum cleaner. The usual practice in real life is that most brain injured patients do get help with these activities (again, especially the stroke patients).

Is there anything 'mental' in cleaning your house you might ask? Well, fortunately, not so much. That is also the reason that the lower educated are often found in the cleaning business (not intended to look down on them!). However, you do need to plan carefully when you do your house cleaning because usually after a brain injury, your energy levels are dropping more quickly. So, breaking your cleaning activities into smaller time units with adequate rest intervals, is a pretty good idea. Often forgotten by patients so they have to rest 3 to 4 hours after cleaning!

Self-care: Taking care of your finances and mail

Finally, I have reached the end of the list of activities that can be seen as part of self-care. Taking care of your finances and mail is not so much a physical activity but more mental. Therefore, a lot can go wrong here, after brain damage. And yes, that happens up to the point that someone is not allowed by a court verdict (!) to take care of his/her finances because he is not able to do that anymore.

To do your finances reliably you have to be able to do calculations and understand numbers. Brain injury can lead to so-called acalculia, an inability to calculate correctly. This can be so severe that even simple booking operations can become difficult. Even when having some problems with calculus, doing some financial administration can be unreliable.

Another common effect of brain damage are visual problems. Visuospatial problems, visual neglect, visual field defects, even severe agnosias (difficulties to interpret images) can hinder correctly seeing forms or computer screens. Therefore, numbers can be incorrectly or partly seen and when large amounts of money are involved the risks are high. One simple mistake in typing, which everyone makes every day, can not be detected in time due to visual problems. So, as you may understand by now, usually a brain injured patient will do his administration under guidance of his partner.

A quite different problem after brain injury is what we call dysexecutive problems. These belong to the problem solving capabilities of human being (see my pages on Problem solving deficits). One of the abilities is concerned with evaluating your own behavior, seeing what you are doing correctly and seeing your own mistakes. With frontal damage (damage to the front of your brain), it is possible that you will take much more risks than normal. That can happen with gambling, car or motor racing, and other potentially more dangerous activities. It has something to do with experiencing less anxiety than normal, so risks are being taken much more easily. It can lead to excessive spending and buying things without realizing that the end of your budget is reached or even surpassed.

After so many problems, is there still hope for your self-care and independence?

Of course, all mentioned problems above in self-care are normally not found in one brain injured patient. For that, the brain injury has to be very extensive, such as in longer existing Alzheimer's disease (a common form of dementia).

Furthermore, the problems I have heard of from patients were in the first year of their injury. Some problems get smaller due to more spontaneous recovery and the right brain rehabilitation.

However, these examples do show that brain injury can have and usually does have an enormous impact on someone's independence and self-care. I can think of no other disease that can do this on such a broad scale. It is therefore no surprise that the depression rate in brain injury patients after 1 year is much higher than in the healthy population.

But there is some hope. On my pages about Brain Rehabilitation and training I am giving handy tips that are used in rehabilitation to reduce the negative effects of brain injury on daily life activities. Some tips and tricks come from actual patients and their families, because they are the true experts of brain injury.

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