The WHO describes disability as a term that refers to a huge spectrum of impairments, activity limitations and participation restrictions. We all are aware of the challenges disabled people face in everyday life be it physically, emotionally or mentally but the role of a caregiver is equally challenging and takes a lot of effort and responsibility and while the role of a caregiver is normally eclipsed, caregiving is learnt through trial and error.
In an interview with HT Lifestyle, Dr Sahir Jamati, Consultant Psychologist and Psychotherapist at Masina Hospital in Mumbai, suggested, “The best thing a caregiver can do is to contribute to positive change and to empower every person living with disability to embrace his old self identity. A caregiver should be empathetic, it is important to keep in mind that people living with the disability are just like us; they have their own individuality and they have the same emotions, interest just as we do.”
Asserting that a disabled person does not want to be defined by their disability but by who they are as a person, Dr Sahir Jamati said, “Addressing or behaving differently with them could actually be a turn off for them. Instead of framing preconceived judgements, it’s always a better notion to ask them for their needs directly; this instils a feeling of confidence and importance in them, making them feel heard and understood leaves them feeling positive. We all want to be heard; lending a ear to them provides them comfort and relieved. Practice active listening. Living an independent life is crucial for almost everyone and for people living with disability is important to empower them with independence; that could be achieved by allowing them to make their own decisions in life.”
Talking about the protocols to be followed by the caregiver while in case of emergency, he said, “People with disabilities are likely to experience medical emergencies, that’s why it’s always wise to be prepared and set a plan in advance before the emergency occurs. We all have heard the phrase “prevention is better than cure “Preparing in advance for the possibility of a medical emergency is as important as the reaction during the same incident.”
Planning for an emergency should be a priority for caregivers. According to Dr Sahir Jamati, the following tips could help them in times of emergency –
- The emergency backpacks: The bag should include basic clothing, toiletries, phone charger and cash for at least 72 hours. The bag should be kept in a safe but easily accessible place. Let trusted ones know where this bag can be accessed in case of emergency.
- Emergency contact list: This list of contacts should include the number of doctors, emergency services like hospital ambulance and also close relatives and friends who need to be notified in case of an emergency.
- Financial arrangement and emergency: One must set aside a relevant amount of money in times of emergency; the amount should be set aside and used only for an emergency situation and no other splurges.
- Self-care: Do not panic. One thing about fear is that it leaves us with a mind fog. We are unable to think clearly; though it is instinctive that we might worry about our loved ones but do not let that fear freeze you to a level where you cannot rationally take decisions. Also taking care of yourself is the first thing to do; lack of which you will wobble on the road to caregiving.
Highlighting the importance of communication with the disabled persons, he insisited, “Communication strengthens the bond between you and the person at the receiving end of it. Sometimes it gets difficult for care givers to effectively communicate. The disabled person could be physically impaired or could have cognitive disability or just tough to get along. It’s completely alright if your communication skills are not up to the mark, communicating thankfully it’s a skill that can be learnt. It is important to respond and communicate positively towards the disabled. Using positive language, being aware and also careful with the words to use around people with special needs. Also, one must avoid displaying nervousness and anxiousness; one must relax and do their best to treat them just like everyone else.”
He added, “For physically impaired people it’s good to inform them when you are approaching and leaving and also to get their attention before one speaks. One must make eye contact and keep the conversation clear and sentences short. A caregiver’s negligent attitude be it conscious or unconscious can be the greatest barrier to effective communication with the disabled. The caregiver should treat the disabled people with common courtesy and respect and recognize the need to maintain the dignity like how they treat everyone else.”
Talking about the need for education and addressing prejudice, Dr Sahir Jamati said, “Disabled people face one thing in common prejudice and discrimination. Disable people are victims to harassment bullying and also injustice. The rights of people with disability act have been in place in India since 2016. The new law protects disable people from above mentioned forms of prejudice and discrimination. It is very essential to teach our kids, family and people around us to not look down upon people with disability and give them their equal right which they deserve like everyone else. The idea that a disabled person is not incomplete should be instilled in the minds of our generation right from the beginning; it’s only one step towards refraining our society from injustice.”
He revealed, “Disabled people could be under the brink of the feeling of dependence. A disabled person without education is like a soldier without weapons. Need for education is mandatory for every disabled person. It instils a sense of confidence and feeling of independence; it is essential for the growth and development and also saves them from a lot of prejudices and discrimination.” Pointing at the difference between dealing with visible and invisible disabilities, he said, “You are a grocery store, the man behind you is disabled, you know it because he is on a wheelchair, illnesses whose symptoms you can see, hear or feel are categorized into visible disabilities. Disabilities like mental health conditions, learning disabilities, diabetes, hearing difficulties are categorized into invisible disabilities. The symptoms aren’t immediately evident to others, so in addition to their internal suffering, they also endure the anguish of having to prove they have a legitimate medical condition daily. Invisible illnesses are real, and many who suffer from a chronic condition, have ways to cope.”
For any care giver, Dr Sahir Jamati advised, “It’s important to learn about the disability of the person; find out about the symptoms, the treatments, the side effects that may be caused by those treatments, and the types of limitations that people who live with that disability have. Having little knowledge could be a dangerous thing. As a caregiver one needs to understand that not always the disabled person will ask for help. As a caregiver one must learn to respect the privacy and space of the disabled person. People with invisible disabilities sometimes feel safer not speaking up, even if it means more challenges for them. And like anyone else, sometimes people with the invisible disability simply want to keep their medical information private and not discuss it with strangers. They know best when they feel comfortable and safe speaking up and when they feel more comfortable and safer keeping quiet, so it’s up to you to respect their decisions. Irrespective of visible or invisible disability, one must learn to be non-judgmental, empathetic and understanding towards them.”
According to Mehezabin Dordi, Clinical Psychologist, Rehabilitation and Sports Medicine at Sir HN Reliance Foundation Hospital, disability is a broad and a multidimensional concept involving the interaction between a health condition, the environment and personal factors. She said, “There is a strong connection between disability and mental health. The Centers for Disease Control and Prevention (CDC) found that adults with disabilities report experiencing more mental distress than those without disabilities.” For caregivers, she advised –
- Be informed: Gather information about your family member’s condition, and discuss issues with others involved in the care of your family member. Being informed will help you make more knowledgeable health decisions and improve your understanding about any challenges your family might face.
- Be an advocate: Be an advocate for your family member with a disability. Caregivers who are effective advocates may be more successful at getting better service.
- Suggest activities that nourish their mind and body: There are several activities that can be included. They have physical, mental, and emotional benefits. These activities can be adaptable to the person’s needs and abilities, and can include relaxation and breathing techniques, meditation, stretching, yoga, or even swimming. Including these activities in the routine can bring significant benefits and easily adapt to all types of people, ages, and abilities. These activities can be practised alone or in groups.
- Do more of what makes them happy: Physical and social activity helps improve independence and a sense of empowerment. Some things you can suggest to your loved one with a disability to improve their mental wellbeing include volunteering, developing a new hobby, or adopting a pet. A new hobby can also have a therapeutic effect and help with socialisation, opening the mind and exploring new parts of their personality. Ultimately, it’s about finding activities that make their life fulfilling and satisfying.
- Encourage open dialog: do not assume that you know everything about the needs of your loved one. Have a dialog and allow them to express themselves openly and freely. Listen and be compassionate, not judgmental.
- Help them connect with others: Social isolation is common in people living with disabilities and is mainly caused by lack of access, social exclusion, and social comparison. Isolation is an unhealthy habit, and is often leads to additional mental health challenges.
- Find a support system/community: Another important action is to find a community. Connecting with other people is essential, and any kind of social connection will be beneficial. Support groups are a great possibility as they will meet new people in similar situations. This is one of the best ways to combat loneliness and isolation, as they will participate in a group of people facing similar challenges, which will help them feel less alone. In addition, meeting other people in similar situations will help them learn more about living with their condition and give them a safe place to share their struggles.
- Be empowering: It is important that you focus on what you and your family member with a disability can do and find avenues to celebrate those milestones. It is crucial to promote their sense of autonomy. When appropriate, teach your family member with a disability to be as independent and self-assured as possible.
- Seek professional help: Often, people with disabilities receive treatment for their physical disability, but their emotional or spiritual needs are not addressed. Although Friends, family members, and caregivers of a person with a disability are the first line of defence from depression and other mental health conditions- it is also important to seek professional help. Find out where and how to get mental health treatment and other support services and resources, including counselling or therapy.
- Take care of yourself: Caring for a family member with a disability can wear out even the strongest caregiver. Stay healthy for yourself and those you care for.
Adding to the list of protocols to be followed by the caregiver while in case of emergency, Clinical Psychologist Mehezabin Dordi said, “It is important that people with disabilities and their caregivers make plans to protect themselves in the event of an emergency or any disaster. Emergencies and disasters can strike quickly and without warning and it requires prior attention and preparedness to be able to deal with them in an effective manner. It’s very easy to panic during an emergency; being mentally and physically prepared may help to minimize that feeling of panic and enable you to keep cool, calm, collected, and most importantly, safe.”
She added, “All too often bad situations are made worse when individuals are ill prepared for the bad things that can happen, whether that is at home or outside. Keeping calm and knowing how to respond to an emergency may save the life of those around you. Having an emergency plan in place is crucial. It can be a document that pasted over the most obvious areas like the refrigerator. The plan should be kept up-to-date with emergency contacts, present medications, present health conditions etc. it is also important to check for additional help and resources available in nearby medical facilities and in your area.”
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