When mental illness strikes a family member, mothers and fathers, sisters and brothers, spouses and children, all are drawn into its churning, frightening vortex. Out of a clear blue sky, without training or knowledge, they are called upon to take on the challenge of coping with new and unfamiliar responsibilities, with the deep psychic pain and damage that will change their lives forever, with such unbelievable stress that it can rip apart families as well as their own inner selves.
Also read: Heal Thy Self | Know your risk profile for mental illness
They are the care-givers, the forgotten victims of mental illness. And their numbers are growing. The World Health Organization (WHO) estimates that, by the year 2020, one in every 5 families will have to care for a person who is mentally ill.
Across the board
The extent of care-giving varies depending on which type of mental illness has “come home”. It ranges from round-the-clock care for those with dementia (e.g., Alzheimer’s) who need assistance with daily activities such as eating, bathing, dressing, going outdoors, getting ready for bed; to coping with the paranoia, hallucinations, turbulence, self-neglect and irresponsibility of someone suffering from schizophrenia; or the apathy, the suicidal talk and sometimes the suicide attempts of someone with depression; ensuring medication is adhered to; supporting the mentally-ill person financially. And much, much more.
How well are today’s care-givers coping with these kind of across-the-board responsibilities? Even in urban India, it is estimated that only one in 5 care-givers is doing a competent job. Perhaps the chief reason for this is that, although the entire family is drawn into the care-giving function, generally one person within the family shoulders the greatest load, becoming the chief care-giver. It is usually the dominant person in the family, who feels it is his or her responsibility to take on the job. This makes for a weighty, one-sided challenge which operates at different levels – emotional, physical, financial.
How do you feel?
Care-givers typically are caught in a maelstrom of intense feelings. Initially, you may experience disbelief and denial (“This can’t be happening”). Once the diagnosis has been made, it provides a medical frame that elicits feelings of hope, compassion and tenderness for the mentally-ill loved one. Later, as you cope with the daily demands of the illness, you may develop seemingly conflicting feelings of anger, worry, sadness, shame – all of them intermeshed with the compassion and the love. It’s important to know that this is normal, and that no feelings are right or wrong.
The seething emotional turbulence is not the only challenge that care-givers must deal with. There are also the very real effects on physical health.
Health Impacts. Being a care-giver of a mentally-ill person can be energy draining, as well as negatively impact the immune system. In one study that looked at a group of persons who cared for a family member with schizophrenia, those caring for the most severely-ill persons had four times as many respiratory and other infections as those who cared for the least-ill persons.
Even if there are no obvious, immediate health effects such as infections, care-givers who neglect their own well-being (e.g., by not eating a balanced diet or getting enough physical activity) increase their risk of medical problems in the long term, including heart dis#ease and diabetes. The relentless stress can also cause emotional damage: care-givers often fall prey to depression and / or chronic anxiety, and may themselves require treatment. At the same time, the emotional toll on the care-giver – by adding stress to the living environment – can also affect recovery of the mentally-ill person. It becomes a vicious cycle.
Your survival kit
But care-giving savvy is something that can be developed. Here are some suggestions:
Do not delay seeking treatment for the mentally-ill person. A number of studies find that there is often an extended delay – up to a year, or even longer -- before a person with a mental illness is brought to medical attention. Sadly, in many families where one member is beginning to show signs of a mental illness, a kind of denial and wishful thinking get underway: “It may be just a passing phase. If we let things be, they will work themselves out.” But this is the very worst kind of thing you can do. We have sufficient evidence today that the longer treatment is delayed in an illness like schizophrenia, the poorer the outcome: recovery is slower and less complete, and the chances of relapse are also higher.
Delay in seeking treatment is also unwarranted, because mental illness does not descend upon a person with the suddenness of a lightning bolt. There are several early warning signs that make it evident that something is wrong. The process very often begins with a decline in the person’s level of performance (academic; job) and social withdrawal (e.g., avoiding friends). Getting a mental health professional into the picture early translates into the best possible chance for recovery.
Understand the illness. Knowledge is power, while ignorance will negatively impact the quality of care-giving. Most care-givers who surf the Net look for information relating only to treatments and drugs; they don’t go beyond that to try to understand the psychodynamics of the illness. “Psychodynamics” refers here to the changes taking place in different kinds of mental processes – thinking, visual imagery, recognition, recall – which manifest themselves in the behaviour of the mentally-ill person. Thus, for instance, in the case of Obsessive-Compulsive Disorder (OCD), understanding its psychodynamics will help you see why, although this is a disorder with a biological basis, the symptoms themselves (e.g., obsessively washing one’s hands, or repeatedly checking door latches) may have important psychological meanings for the person that make her reluctant to give them up, and also make her resistant to taking the medication or carrying out the therapeutic assignments suggested by the counsellor. A care-giver who fails to understand this may see the person’s behaviour as merely wilful obstinacy and may feel anger instead of compassion.
Build a strong partnership with the health professionals. Good communication between family care-givers and the mental health professionals involved in the care of the ill person is key, and becomes especially important if the condition is long-term. Once the diagnosis has been made, important questions to ask include:
What does the diagnosis mean?
(If it’s not been stated in a way you can understand, request your doctor to do so)
What are the available treatments?
How long will it take for the medication to start working?
What are the side-effects that may be expected?
How often should we come and see you?
Are there other things (besides the medication) that may help?
Can you suggest good websites or reading material that will give us more insights into this illness?
Will the person be able to continue his education, or get back to a job?
What can we expect in the near future and over time?
Can you give me an emergency telephone number where you can be reached?
With all that’s on your mind, it’s easy to overlook asking certain questions, so it helps to keep a diary of changes in behavior, reactions to medication, or other problems you need to ask about.
Deal with problem behaviors. Some problem behaviors are part of the illness and need to be accepted as such – e.g., wanderings or aggressiveness in Alzheimer’s. You may have to keep reminding yourself that the person is not behaving that way on purpose. The mental health professional will be able to guide you on what to expect – and accept.
But there are other behaviors that can be harmful or distressing either to the person who’s ill, to your relationship or to others. With regard to such problem behaviors, it’s necessary to set firm limits and to do this from the start. You might need to negotiate with the ill person and agree on what is and is not acceptable behavior – e.g., boisterous singing late into the night is not acceptable.
Empower the mentally-ill person. It is important to relate to the ill person as an individual, not just in terms of his or her illness. (S)he has the right to make decisions, including decisions about treatments. Never lose sight of the fact that people with mental illness are not defined by their illness. They still have likes, dislikes, opinions, talents and skills. They are mothers, husbands, brothers, daughters – avoid treating them as if they were mentally retarded children. Acknowledging the person’s strength and ability to face a difficult situation can help minimize his sense of powerlessness.
Have a plan of action ready in case of an emergency. Keep a list of important phone numbers (GP, psychiatrist, hospital, ambulance etc) on hand. Also, a list of current medications with dosages. Enlist the help of others so that they can be on hand in case of an emergency.
An eventuality that leaves you seriously incapable of handling the chief care-giving role is also an emergency. Find a friend or family member who is ready and able to step in if you are suddenly unable to care.
Dealing with the stigma. The mentally ill continue to frighten and embarrass most people. For care-givers, this stigma creates or compounds feelings of shame, isolation and fear of exposure. They find themselves trying to hide the illness as a malignant family secret, even from relatives and friends.
While drugs and other therapies have made remarkable progress over the last decade, until we shine light on the mental illness, say depression, until we drag it out of the darkness and say this is depression, this is what it does, we’ll never conquer its power to taint and to disgrace. You can take your first step in this light-shedding process by speaking openly to close relatives and friends about it. Doing this will also enable you to enlist their support, instead of struggling alone in an uphill task.
A counselor is also invaluable as a non-judgmental person whom you can talk to without feeling shame or embarrassment.
Take care – of yourself. The very qualities that make one an excellent care-giver -- empathy, trust, intimacy and love – are the ones that can lead to problems, including burnout. When care-givers give so fully to the person they are caring for, they often end up becoming over-involved, unable to separate “self” from “situation.” This is very common and, at the same time, dangerous. It can bring on what is sometimes known as “compassion fatigue” and sometimes, care-giver burnout. It’s marked by a deep physical, emotional and spiritual exhaustion, accompanied by acute emotional pain. Those who have experienced compassion fatigue describe it as being sucked into a vortex that pulls them slowly downward. They have no idea how to stop the downward spiral, so they do what they’ve always done: they work harder and continue to give of themselves until they’re completely tapped out.
Watch out for these signs of compassion fatigue:
Feeling tired most of the time
Feeling overwhelmed and irritable
Sleeping too much or too little
Gaining or losing a lot of weight
Losing interest in activities you used to enjoy
The rationale for avoiding compassion fatigue is commonsensical: if you don’t take care of yourself, you won’t be able to care for anyone else. Here are some ways to stay at your optimum best:
Commit to staying healthy. Regular well-balanced meals will help maintain your energy levels and keep you physically and mentally well. Find time to be physically active on most days of the week, and don’t neglect your need for a good night’s sleep. Downtime is also an integral part of the intelligent care-giver’s arsenal.
Make sure you get your regular health check-ups. Don’t hesitate to tell your doctor that you’re a care-giver or to mention any concerns you have.
Accept help. Many care-givers have a hard time asking for help, they fall into the trap of believing that they have to do everything by themselves. Don’t make that mistake. Recognize your limits – no one can be a carer every minute of every day. It may be hard to imagine leaving your loved one in someone else’s care, but taking a break is one of the best things you can do for yourself as well as for the person you’re caring for. Whenever possible, make plans that get you out of the house. Even short breaks can leave you feeling re-charged.
Join a support group. It can be a great source of encouragement and advice from others in a similar situation. It can also be a good place to make new friends. Studies have found that care-givers with the largest networks of friends and relatives to draw on felt the least burden.
Never give up on hope. New and better drugs for mental illnesses keep arriving on the shelves. Gene therapy continues to make steady advances. You are not alone – some of the best minds in scientific research are currently wrestling with the hydra-headed demon that is Mental Illness. Effective control, if not a complete cure, is in many cases a matter of ‘when’ rather than ‘if’.
(The author, a former editor of 'Health & Nutrition' magazine, now works as a counselling therapist)