Parents of children with chronic disability need community support
Raising a child with a developmental disorder such as autism or caring for an adolescent with mental illness such as schizophrenia can be extremely difficult for the parents, for in both cases, it often means a lifetime of caregiving.
There is a lot of difference between mental illness and a developmental disability. A person with severe mental illness such as schizophrenia or bipolar disorder can usually have a functional life if they receive suitable treatment. But in moderate and severe cases of developmental disorders such as autism, or intellectual disability, the person's brain development is hampered and this affects their communication and social interaction. Also, they are not curable conditions.
Parenting for children with developmental disorders is different from raising an adolescent with mental illness (the onset of most mental illnesses is during adolescence). Taking care of a child with a developmental disorder involves teaching them the basic skills of personal hygiene and grooming – brushing teeth, bathing, dressing properly, etc. Caring for a child with a severe mental illness such as schizophrenia or bipolar disorder involves helping them with the physiological and psychological changes in their lives, while dealing with their frequent episodes associated with the illness. Most persons with severe mental illness live functional and full lives and need support from family and friends.
In both cases though, these are some of the challenges that parents face while caring for their ward in their advanced years:
1. Who will look after my child after me: After caring for their children with mental illness for a long time, the first concern for aging parents is – who will look after the child, who is now an adult? They expect the child to be looked after for their basic needs, be provided timely medication and periodic health check-ups and loved for, after they are gone. We talk in detail about it in this piece.
2. Dealing with their own chronic illness: Older people are more prone to several chronic illnesses such as diabetes, heart diseases and hypertension. At this time, managing their lives with these illnesses and caring for the adult child can become difficult and stressful.
3. Lack of quality caregiving services: Parents go through several dilemmas when choosing professional caregivers for their children. They may wonder if the staff would be efficient and if the child would get the same level of treatment as they would at home. As such, there is a lack of rehabilitation facilities available in our country, and the few institutions that are available are not well-known to people.
4. Being prone to mental health issues: Parents of children with severe mental illness face social isolation due to the stigma attached to mental illnesses. Loneliness and constant caregiving can cause the caregiver parents to be emotionally detached from the child and make caregiving mechanical. In the long run, this can cause caregiver burnout.
5. Explaining life’s realities: As children with illness such as schizophrenia grow up to be adults, they see that their peers are getting married, having children or busy in their careers. In some rare cases where the person is not living a functional life, it is challenging for elderly parents to explain the realities of life to their children – about the difficulty of their illness and the social stigma around it. If you as a parent are finding this challenging, consider seeking the help of a mental health professional to have that important conversation.
6. Handling it alone: Often, the child's diagnosis of a disorder requiring long term caring may cause a rift in the parents' relationship. In some cases, they end up separating and one parent becomes the long-term caregiver to their child. The fear of managing the finances and the child's future along with their health issues can be stressful for the single parent.
How you can help yourself
It is recommended that caregiving need not be the sole responsibility of one person and there are ways in which they can seek support and try to prevent caregiver stress and burnout.
As much as possible, follow a proper diet and get enough sleep. If you have a chronic illness that needs management, make sure you don’t ignore that. Try to take a break from caregiving to meet friends and socialize.
Find resources to share your caregiving responsibilities. Look for respite-care services that have day-care facilities. This will help you also fulfill your personal and professional responsibilities.
Having a support system, in your extended family or friends, can help you, the caregiver, feel less lonely in the process of caregiving and, hopefully, receive some assistance from the support systems in the future.
Seek help from a mental health professional if you experience signs of any emotional distress such as chronic fatigue, sleeplessness, feelings of constant sadness, irritability, hopelessness, etc.
Family burden among long term psychiatric patients, J. Roychaudhuri, D. Mondal, A.Boral, D Bhattacharya
Challenges faced by aging parents in caring for their children with mental disability, John Athaide, Prerana Chidanand, Tina Chung, 2013