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Care of the Caregivers


Significant and healthy human relationships are successful only when they are reciprocal and mutual. The care recipient may need a great deal of assistance, but the needs of the parent/caregiver must also be met for the relationship to remain healthy. Caring for a loved one with a chronic condition can often be profoundly fulfilling, as many times individuals move closer together when challenges arise; however, it can also become overwhelming, physically and emotionally challenging, and isolating.

As the child’s developmental difficulties progress, the often-numerous and variable symptoms physically, emotionally and cognitively can create a need for family members or others to provide care. This responsibility often falls on the parents and sometimes extended family. The long course, duration, schooling, toileting, dressing, feeding, transportation to appointments, multidisciplinary therapies, and more frequently require parents to assume financial and household responsibilities. There are no weekends or holidays off for parents and guardians of children with autism because, in most cases, caregivers do not have someone who can fully take on their role. With no time to relax and recuperate, caregivers are prone to emotional and physical burnout. Caregiving can be deeply satisfying as parents and family members can be drawn closer together. However, as the demands increase physically, emotionally and cognitively for the child, often less time is available to be devoted to the caregiver’s needs or a career. Thus, parents often feel a significant demand and burden on their own endurance and coping mechanisms. Caregivers, especially mothers, commonly report many physical and psychological symptoms. 

Commemorating Autism Awareness Month, SUBURB spoke to Dr Roma Kumar, senior consultant Psychologist at Sir Ganga Ram Hospital, Max Hospital and Saksham Mental Health.

 Parents of children with ASD (Autism Spectrum Disorder) are dealing with the kinds of care needs they had not anticipated managing for years or decades into the future. There are rarely friends or role models who can help guide a parent who takes on caregiving responsibilities through the emotional, physical, psychological and financial challenges they face. A lot of thought goes into how they will adjust their lifestyle and spend time and holidays with their families and friends. It can be a very lonely and frightening feeling for most parents.

But as parents/caregivers find fewer opportunities or strategies to regain positive emotional energy, negative emotions understandably emerge. These emotions for caretakers can range from anger (at their partner, the condition of the child, their god) to depression and regret at their weakness to a deep sadness about the loss of the life they had hoped and planned for as an individual and a couple or family. Often grief is the negative root emotion that caregivers experience. Sometimes there is guilt associated with taking a break as an autism caregiver, especially when ASD children form secure attachments. However, if time is not taken to recharge, how can care to continue

Here are some mental and conceptual/ psychological adjuvant tips to help caregivers of people with special needs and manage the challenges of caregiving.

1.      Seek supportIt is essential to connect with other parents with children with the same needs. They can assist with valuable backup, resources and suggestions on managing your child’s needs by joining support groups or particular communities.

2.      Educate yourselfThe more you know about ASD, the more empowered and the more comfortable you will feel with role changes. This would greatly help you understand the difficulties and strengths associated with ASD. Find out as much as possible about autism and your child’s specific requirements.

3.      Accept Your Emotions. If you feel hopeless, worthless, helpless, sad, anxious or fearful, acknowledge these emotions. These are all normal reactions to your situation. When caring for a child with special needs, it’s normal to feel various emotions, and it’s acceptable to occasionally feel angry, overburdened, or even guilty. You can overcome these feelings and discover coping mechanisms by accepting and acknowledging them. Should difficulties arise, seek couples or family counselling. Your multidisciplinary physician team will have a list of qualified mental health professionals.

4.      Create Realistic ExpectationsIt’s important to create reasonable expectations for yourself and your autistic child as a parent. Don’t compare your child’s development to that of other children; instead, celebrate small accomplishments and progress.

5.      Ask for Professional HelpAs difficult as it is to ask for help from others, realize that you need a break and that others may want to help. You do not have to do it all, nor is it healthy to do it all. The best way to avoid burnout is to accept help. People often want to help; ask. Sharing your feelings with someone you trust—a partner, family member, friend, spiritual leader or social worker— can make your concerns seem more manageable. If you’re having trouble with your mental or emotional health, consider seeking professional assistance. A therapist or counsellor can offer assistance and direction in navigating the challenges of caregiving.

6.      Prioritize YourselfIf you are unhealthy emotionally, physically or spiritually, you will be of no help to anyone else. You are much more capable of being a help to others when you eat a healthy, balanced diet, exercise regularly, are involved with your interests and get enough sleep. Self-care must come first, especially if you are constantly stressed out. Make time for the activities you enjoy, relax by doing yoga or meditation, or go to a salon/spa.

7.      Recognize that you are doing your bestRecognizing compassion fatigue is the first step in trying to find relief. There is no “right” way to be a parent/caregiver, and it’s crucial to permit yourself to acknowledge your efforts as a caregiver and to be patient with yourself as you navigate this role.

8.      Take Regular breaks to rejuvenate yourself and stay social. Connecting with others in similar situations is powerful because you can no longer feel isolated and learn from others. In addition, make sure you maintain other vital relationships, such as with children, family members and close friends. Plan regular getaways or time off. Hire assistance if you need it.

9.      Use visual aids With ASD children, visual aids like photos, drawings, and symbols might facilitate communication. These tools can improve your child’s ability to express their wants and comprehend expectations.

10. Prioritize Effective CommunicationWhen caring for a child with special needs, open communication is crucial. Engage in active listening and try comprehending your child’s needs and desires. Promote comforting connections and acknowledge accomplishments.

Joy, laughter, and humour are all considered ‘protective factors’ for parents/caregivers. This means that finding joy and happiness can support your mental health and improve your well-being. Being a caregiver is often stressful, and changing our routines and finding ways to increase joy can be crucial.

Dr Roma Kumar, Senior Consultant Psychologist at Sir Ganga Ram Hospital, Max Hospital and Saksham Mental Health.

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