Schizophrenia: A Handbook For Families

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Support For The Family

People involved with schizophrenia note that the family, most often the primary caregiver, is under a great deal of stress every day. One woman states: "Personal stress is something that often goes unacknowledged. The sick person becomes a priority, and we forget our own needs. The day-to-day tasks involved in caring for a dependent - sudden crises, worry, financial problems, searching for community services, coping with bureaucracy, becoming an advocate, squeezing out precious moments for our other family members - depletes and robs us of our energy. Eventually we end up with stress exhaustion, and this can lead to depression, anxiety, burnout, and psychosomatic illnesses." (Elenor Smith, editor, Alberta Friends of Schizophrenics Newsletter, Nov. 1988).

Families and health care professionals caution that the strain of having a relative with schizophrenia can begin in the very early days, when that person first behaves unusually. Normally, when we see someone who is visibly handicapped - for example, using a wheelchair or white cane - we are inclined to offer that person our support. With mental illness, however, often the only way one realizes that something is wrong is to actually see someone exhibit "weird" behaviour. It is natural to be disturbed by such behaviour, and we tend to withdraw from them. When "weird" behaviour occurs within a family, the reaction is not much different, and may even be hostile. In the early days, family members may be bewildered and resentful, and often blame and criticize the ill individual. Members may blame other members of the family as their fear and frustration grow.

Families drew up the following list of negative responses that they found very common, both in the early days and in reaction to a diagnosis of schizophrenia:

• denial of the illness entirely: "This can't happen in our family."
• denial of the severity of the illness: "She's just going through a phase."
• refusal to discuss one's fears
• withdrawal from usual social functions
• shame and guilt: "Where did we go wrong?"
• feelings of isolation: "Nobody knows what I'm going through."
• bitterness: "It isn't fair. Why us?"
• blame: "You should have stayed home with the kids."
• preoccupation with moving away: "Maybe if we left the city, lived in the country."
• excessive searching for possible explanations: "Maybe we punished her too much."
• inability to think or talk about anything but the illness
• extreme ambivalence toward the ill person
• marital dissension; eventual divorce
• sibling rivalry and refusal to talk to or be with the afflicted sibling
• increased drinking or dependence upon tranquilizers
• depression
• insomnia, weight loss, anxiety.

Families caution that one of the most important things to watch for is resentment in siblings. When you are spending all of your time and energy supporting and seeking help for your ill child, it is very easy to neglect other children. Families warn that you may also have to accept that a sibling may never have any feeling of affection for the ill relative. As one woman said, "My brother was several years older than me. I never had a relationship with him when he wasn't ill. When he first got sick, I was very young, and his behaviour scared me. Then, as I got older, the things he did embarrassed me. It's very hard for my parents to accept, but I don't feel any connection to this ill man." Many parents cannot understand this lack of empathy, and find that they resent their other children for not feeling the same way they do about the ill individual.

Some families believe that one way to prevent resentment is to include siblings in family discussions about the ill relative, and to ask for their support in caregiving. Parents often try to protect children by keeping the truth from them, but ignorance can be very frightening. Children should be given as much information as is appropriate for their age. One woman, whose parents always included her in the support of her brother, stated, "My brother is only one year older than me. I don't remember a time when he wasn't there. I love him dearly, and I am the only person he can really talk to about what is happening to him." One father said that now that his ill daughter is on medication and doing well, his other three daughters are willing to be supportive. In the past, they had been afraid of and embarrassed by their sister. But now the four daughters go out once a week and have created strong family ties.

Because the different relationships within a family can show signs of strain during the very early days, families of those with schizophrenia stress again the importance of joining a support group as soon as the diagnosis has been determined. Listening to others who have been through the experience will help you to acknowledge your feelings of anger, confusion, guilt, shame, and so on, and to realize that these feelings are all normal. Normal as these feelings are, however, they are painful and will grow when the family members are uninformed and unsupported. The sooner a family comes to an understanding of the illness and finds appropriate ways of relating to the ill individual, the greater chance a family has of remaining a healthy, functioning unit.

Burnout

The other reason for joining a support group early is to find ways of avoiding the burnout that so often comes with the burden of caring for someone with schizophrenia. Feelings of chronic fatigue and utter exhaustion, a lack of interest in life, a lack of self-esteem, and a loss of empathy for the person with schizophrenia are common to people who have been coping alone for a number of years. These people are the "walking wounded", and may suffer from headaches, insomnia, drug and alcohol abuse, depression, and stress-related illnesses.

Families offer the following ideas for avoiding burnout:

1. Be aware of your health on a day-to-day basis. Eat nutritiously. Join an exercise club. Go for walks as often as possible. Get enough sleep. Visit your own doctor for regular check-ups. Let him or her know that you are the caregiver of a relative with schizophrenia.
2. Learn about relaxation techniques.
3. Schedule a break for yourself every day.
4. Take regular vacations if you can afford to. Try to get a day or a night to yourself every now and then: will a friend stay overnight while you go to a hotel? (Some families, who are able to be flexible about vacations, go on holiday when a bed is available at a local group home. This sort of respite care is becoming more readily available.)
5. Avoid self-blame and destructive self-criticism.
6. Take a school course - give yourself a few hours when you have to concentrate on something else.
7. If your relative lives away from home, don't visit more than three times a week after the initial transition. Limit phone calls.
8. Try not to neglect the other relationships in your family.
9. Share your grief and problems with supportive people. Be careful from whom you seek advice. (For example, misinformed people may suggest that schizophrenia is something you caused.)
10. Aim for teamwork in your family.
11. Recognize that successful treatment and workable after-care programs require the co-ordinated and shared efforts of several groups of caregivers.
12. Realize that life must go on for you and for others in the family. This attitude may benefit your relative. He or she may be strengthened by the realization that life goes on.
13. Keep on top of developments in your relative's illness that may indicate that a change of lifestyle is necessary. For example, many families have found that although their relative lived at home successfully for a number of years, at some point a change occurred that lowered the quality of life for everyone. Do not insist on keeping your relative at home if different housing is now indicated.
14. Keep your religious beliefs. This may be important to your relative.
15. Keep a sense of humour.
16. Never lose hope.

Burnout may also be caused by a lack of acceptance on the family
s part. Some people are unable to recognize the illness for what it is. The realization that your relative may never be the same again, may never get "cured," is too unbearable to contemplate. Many of these people attend support group meetings on a regular basis, insisting all the while that their wife will get better, that their son will be cured. One mother said that she devoted all of her time to her son the first year he became ill. Then it was pointed out to her that because she was a social worker, she felt that she ought to be able to help him. This mother now strongly cautions others not to impoverish themselves emotionally or financially by chasing "will-o'-the-wisp" cures that have not been scientifically substantiated.

There are those who push themselves to the limit. They never let go. They never get on with their own lives. They wear themselves out. Those with experience advise that once you let go, once you say "This is it," life becomes simpler. One father stated, "You work through fear, anger, grief, and finally come to acceptance. Acceptance is like adopting someone new - the other person is no longer there." Acceptance means that you have learned to look at your relative as he or she is now. Then there is room for hope, and you can begin to work for those things that will really make a difference in your relative's life.

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