Best Way to Care for the Chronically Ill Child

It’s human nature to believe that chronic illness or mental or physical handicap is something that only afflicts other people’s children. That is, until it happens to your own child. Many pregnant women worry about whether their unborn baby will be born normal and healthy; some even dream about giving birth to a handicapped or deformed child. This fear is almost universal, though it’s understandably worse for mothers who have had problems in a previous pregnancy or pregnancies, or who have a chronically sick or handicapped child already.

If a newborn baby is obviously handicapped or becomes ill very early in life, parents may react with shock, followed by numbness and denial, sadness and depression. Later, there’s a period of reawakening of their energy, which is often combined with much anger. These stages are well-recognized parts of the normal process of grieving. They are mourning for the normal, healthy baby that might have been. The realization that a baby is mentally handicapped often dawns more slowly, which in a way is a blessing.

Talking about your feelings

Whenever an illness or a handicap begins, it helps to be aware of your feelings about the situation and the inevitable changes in your family life that will follow. Marital difficulties can be a problem right from the beginning. One major factor behind this is a lack of open and honest communication of feelings between the parents which leads, in turn, to insufficient and inappropriate support and care for each other. If you are to give the best to your child, it’s essential to look after your relationship with your partner.

If you have other children, you must be sensitive to their need for a fair share of your time, interest and energy. Feelings of jealousy and even hatred are natural as their lives are inevitably changed. Older children may well worry about what will happen to their brother or sister once you are no longer there. Don’t forget that not only do the well brothers and sisters have ambivalent feelings, but the affected child does too. These all need to be talked over to make them easier to cope with. Whatever the problems – the physical exhaustion and the emotional strain – there are positive sides to caring for a chronically sick or handicapped child. Many parents say that for the first time they understand what life is all about and that the child’s presence has enriched them in a way that they could never have foreseen.

Living with chronic illness

With long-term conditions, such as diabetes, epilepsy and cystic fibrosis, both you and your child will need to become used to the medicines or treatments that have to be given, day in and day out. And with certain conditions, such as food intolerance and diabetes, there is the additional burden of always having to remember to be scrupulously careful about what the child eats. Severe chronic eczema can be a truly distressing problem, bringing sleepless nights for both parents and child from itching that is at times intolerable. Some children with chronic illness or with a physical handicap have to go into hospital from time to time if their condition becomes acute or needs special treatment. Hospital visiting can be exhausting, so it is particularly sensible to look after yourself at this time.

Short-term hospital care can give parents of a chronically sick child a necessary break from the demands of day-to-day care. In some areas, there are day care facilities, such as nursery provision for physically or mentally handicapped chil­dren, and for school-age children the local education authority does its best to provide the most suitable education, either at a special school or within an ordinary school. Occasionally, auxiliary helpers attend ordinary schools to cope with any special care a handicapped or chronically ill child might need. Some areas also have visiting teachers for dyslexic and deaf children.

Overprotection

It’s quite easy while caring for a chronically ill or handicapped child to be overprotective, smothering or overconcerned about the condition in front of the child. Children, quite naturally, lap up fuss and attention and can become unreasonably demand­ing. Your protectiveness may be caused by your inability to accept that it is normal to feel angry and resentful at times towards your child while still loving and caring for him. Give him your love and time, and try not to feel guilty and so over-compensate for any angry feelings you may have.

One of the best gifts you can give your child is the ability to care for himself, and you won’t be able to do this if you do for him what he should be learning to do for himself. And unless you demonstrate that you can look after yourself and accept help from others, your child will be left with a huge burden of guilt because he’ll feel responsible for making you run down and unhappy. You may be a very capable person with lots of love and willingness to care for your child, but you don’t have to be perfect. If you try to be, you won’t be doing yourself, your partner, the rest of the family or your sick child any favours. Ask your family, friends and neighbours to help out so that occasionally you can have the luxury of some time to yourself. This will help restore your emotional and physical energy and gives them the chance to show their love and support. Most important of all, it allows you to feel loved and to replenish the well of love which you are constantly drawing upon to give to everyone else.