Parents’ dream of the milestones that their child will reach as he/she goes on life journey to their own destination. But what happens when that dream is comes crashing down, when the adult child is still at home, not completed school or dropped out of university in the first semester, has never been employed for any significant length of time. The child spends most of the day at home, in their room, in the same clothes, smoking cigarettes all day. Friendships have never lasted long and the child is now an adult and as a parent you are still supporting him/her. You are about to retire and your adult child is still at home. You still find yourself, doing the laundry, shopping for the groceries, cooking the meals and still doing the “caring for” parent role you have always done. Where did it go wrong, you did not sign up to care for your child in their 50’s. This story is not unique, ageing parents who provide long term care to the adult child with serious mental illness find themselves at a stage of life where they themselves are struggling with their own needs to be “cared for”. These adult children have gone undiagnosed and untreated for their serious mental illness since adolescence. The parent did take the child for numerous assessments with psychologists, social workers and occupational therapists as a developing child, but no one could say what was “wrong” with their child. This child then grew up into an adolescent and absenteeism from school became problematic (they did not understand the work, were behaviourally challenging in the class and asked to sit outside the classroom and socially isolated.) These children were removed from the education system and were not placed or assessed for alternative meaningful occupation during the day. The parent cared for them at home, because the home was safe for the adult child and no one could judge them (or you) and there was nowhere else for them to go. The parent now wants to retire and sell the family home and move into a home that requires less work and is less expensive. But what to do about the adult child who has never left and is still very dependent on their parent? They require care, but so does the parent. Old age brings with it physical health concerns, and psychological struggles. These families are vulnerable during retirement not only to the onset of their own disabilities, but also to extreme financial problems. These issues now start to impact on the functioning of the seriously mentally ill adult child, as they become less stable and unable to assist with caring for the parent. These issues are often further complicated by shortages of formal services and residential options for persons requiring residential care. It is also often hard to place a mentally ill adult who has always lived at home cared for by parents in a group home or residential care facility. Firstly, it is about the right social fit, but also changing a lifestyle that has been entrenched for years. The difficulties these parents face daily include: coping with problem behaviours; dealing with feelings of isolation; interference with household routines and with meeting the personal needs of other family members; not having adequate information about the person’s illness; dealing with problems in medication management and compliance; coping with problems related to the adult child with a mental illness impaired social role performance and ability to carry out tasks required for daily living; disruptions to family life; lack of a respite from responsibilities; and insufficient help from the mental health service system.
What can be done to prevent this?
Early detection and diagnosis of a mental illness is key to prevent the child becoming a “burden” in the home as an adult. If, as the parent you have a gut feel that “something just is not right”, you as the parent have the responsibility to seek the professional help and support that both you and your mentally ill child needs when they are still young. Too often parents find it hard to recognise that the needs of the mentally ill adult child are going to increase as the ageing carer parent becomes less able. The ageing parent struggles to recognise or is ashamed by the “strange” adult child in the family. Families are afraid of being stigmatised by the community for being related to the mentally ill adult child. The truth is if one family had the courage to seek the help they require many others would follow their example. It often means not giving up and seeking the right treatment for the adult child, and this may mean the adult child moving into a group home or suitable care facility or that they attend the protective workshop. All these options create an environment that allows the adult child to find independence and appropriate care for when the ageing parent is no longer alive. Each of these options are a process and need to start as soon as the family recognise that this child will need to follow a different journey. It is also imperative to consider the long term financial requirements of both the ageing parent and the adult child. This may mean allowing for a trust to be set up or paying into a policy, thus relieving the ageing parents of the financial burden.
What can JCS do?
JCS can provide a home based, multi-dimensional problem-solving intervention aimed at improving the emotional well-being and the life satisfaction of the ageing parent and the adult child. JCS can also offer education, support, training in problem- solving, and a collaborative role with other mental health professionals.
Please contact JCS on 021 462 5520 should you have an adult child who may require care that you are no longer able to provide.
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