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Walking towards hope

R Sriram Srinivas, who has multiple disabilities—mental retardation and spastic diplegia—takes a breather during his yoga session at home. P Settu, his yoga therapist, who has been teaching Sriram two years now, says that Sriram used to be inattentive and restless, but now follows instructions well and has mellowed down significantly.  

 

 

Images and text by Naveen P M

Walking towards hope (2/9)

M Vanitha, Sriram's teacher, helps Sriram wear his dance apparel before the start of the 'World Differently Abled Day Cultural Programme' at Don Guanella Special School in Chennai. Due to Sriram's condition, simple tasks such as putting on clothes can become a chore and he often ends up needing some assistance. 

 

Walking towards hope (3/9)

Sriram rides his bicycle—fitted with a custom-made backrest—flanked by special education teacher, G V Arumugam. Arumugam has known Sriram for 15 years and was initially hired to teach him basic reading and writing skills. On Sriram's parents' request, he started to assist Sriram in walking and then taught him how to ride a bicycle so he could improve his muscle tone. 

Read Sriram's story here

 

Walking towards hope (4/9)

R Devi helps Sriram read a clock at Sai Sri Ram Training Centre. Sriram has difficulty reading and writing even basic words, and has a hard time grasping universal concepts such as time, date, and money. Devi is Sriram's favorite teacher. Sai Sri Ram Training Centre has eight students with special needs, two teachers, and a domestic help. The school functions from 10 am to 3 pm and keeps the students busy with a plethora of activities such as coloring, computer games, and yoga.

 

Walking towards hope (5/9)

M R Karthik, physical trainer, subjects Sriram to one of the many "balancing exercises" to improve his balance and correct his "scissor gait". Karthik has been training Sriram for the last two years. "In the beginning, Sriram could hardly stand for a minute on his own and displayed a lot of traits commonly seen in persons with Intellectual Disability (ID), such as lack of eye contact, droning, drooling...," says Karthik.

Read Sriram's story here

 

Walking towards hope (6/9)

Sriram and his classmates from Sai Sri Ram Training Centre perform to a medley of Bollywood songs at the 'World Differently Abled Day Cultural Programme' held in Don Guanella Special School, Chennai. P Dharani Kumar, a professional choreographer, composed the dance moves for this performance. He visits the school every weekend to teach dance to these students. "Sriram usually has trouble recollecting and executing my dance moves but he stepped his game up through some spontaneous moves," he said. 

Read Sriram's story here

Walking towards hope (7/9)

Sriram is ecstatic after receiving a silver medal for the Standing Long Jump event. His driver, D Alvin (right), and Sriram's mother, R Vanitha, gather around to congratulate him, at the Special Olympics Sports Meet held on YMCA Grounds, Chennai. Sriram shares a special bond with Alvin and the two can often be seen engaging in healthy banter. 

 

Walking towards hope (8/9)

Sriram does a lap of backstroke at The League Club, Chennai. His parents introduced him to swimming at the age of seven after a doctor suggested hydropathy as treatment. Sriram has been training under U Sathish Kumar, swim coach for children with special needs, for one year now. Sriram won four gold medals in as many events at two swim meets for para-athletes held last year in Tamil Nadu.

 

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Dr J Paul Devasagayam, Area Director, Special Olympics Bharat, Tamil Nadu, reviews Sriram Srinivas's progress with his mother, R Vanitha, during one of their monthly meetings at his 100-square-foot office in Purasawalkam, Chennai.

 

When the roles are reversed: Caring for your elderly parents

Caring for elderly parents can be challenging as it it brings up several practical and emotional issues. How can you cope?
Sriranjitha Jeurkar

Aging affects a person in different ways. The body gets physically weaker; your reflexes are slower, bones and muscles lose their strength, the vision may become weaker, the organs become less efficient and this can lead to a drop in stamina. The brain also begins to deteriorate gradually; this is why elderly people tend to forget things or find it harder to understand or process something new. Changes in sleep are very common, and may affect the person’s physical and emotional wellbeing. 
 

An aging person gradually may be trying to manage with their diminishing physical and cognitive abilities. If there is a physical or cognitive deterioration, they may experience a loss of independence (which can sometimes be sudden), a slowing down of their social lives, the inability to manage things by themselves, and become a bit more dependent on the others around them. 
 

If the aging person is without any major illness, the process of adjustment may be more gradual, and occur over a period of time. In some cases, a health condition may require an elderly person to make drastic changes to their lifestyle, or cause them to become dependent on their family in a sudden manner. In such a situation, there is pressure on caregivers to adapt in a quick and timely manner. The pressure may not only be logistical, but also financial and emotional. The gradual or sudden decline in health can leave an elderly person vulnerable to depression, anxiety or related mental illnesses.  

Caring for your parents 

Caring for your parents when they are unwell can be challenging. There are practical considerations - you may have to work around your schedule to include your new caregiving responsibilities, juggle home and work, manage the finances, and factor in hospital visits or medical care. All of this, while managing your daily routine. 

This can also be emotionally challenging, as you cope with your own emotions around caring for your parents, and coming to terms with their condition. If you haven’t had enough time to gradually slip into the role of the caregiver, it can be more challenging. You may have to make some important decisions about whether your parents will move in with you, or you with them (if you have lived apart), or about appointing professional caregivers for them. Many caregivers report experiencing the burden of cultural and societal conditioning that assumes that children will care for their parents. Family dynamics can change too, adding to the existing stress. If you’ve begun living together after decades apart, you may have personality and culture differences to deal with as well. 

Some caregivers may go into denial, while some can become overprotective, taking over all aspects of their parent’s care, to the extent that the elderly person experiences a loss of agency. 

“The loss of dignity is a large part of the emotional issues that come with aging, this is something we work on a lot, with our clients,” says Tanvi Mallya, a neuropsychologist, who runs an eldercare services consultancy. “For children who turn caregivers, it can be incredibly difficult to watch the tables turn, as they’re still coming to terms with it emotionally. Sometimes, there isn’t enough time to adapt to the reversal of roles, and that can be difficult.” 
 
What you as a caregiver can do 
 
Be empathetic to their situation: An elderly person who (gradually or otherwise) loses their sense of independence can have challenges to cope with. “For someone who has been independent for many years, it is difficult to become dependent on another person. No amount of preparation can be enough for the loss of agency. It can be emotionally disturbing. And it’s important for caregivers to understand this,” says psychologist Dr Garima Srivastava. 

Have open conversations: Ask them how they’re coping with the sudden change in their lifestyle. Talk to them about how you are adapting, and what arrangements you are making. Check if there’s anything else they need or want that they are not able to do for themselves. 
 

Help them stay financially independent: Support them in keeping control over their finances for as long as possible; this can give them reassurance and safety. Give them access to their bank documents, passbooks, debit/credit cards. Check if they have any financial needs or concerns, and talk to them about it. 

Help them settle in their new surrounding: If your parents’ living situation has changed due to their health, help them get accustomed to their new surroundings. Consult them in the planning and take their preferences into account. Having familiar objects in their living space (furniture, photographs, etc) can help them settle in and feel more at home. 

Understand their needsUnderstand what your loved one needs and separate it from what you think they may need. You may have to pick up from their verbal and non-verbal cues for itFor example, a person in the later stages of dementia may not want to brush their teeth twice a day; and not brushing as often doesn’t make too much of a difference to their general wellbeing. However, if the caregiver insists on making the person brush twice a day when they don’t want to, it may lead to anxiety and fights. 

Create a safe environment: Often, caregivers tend to care for their parents the way they would care for their kids. But there’s one crucial difference between caring for children and caring for the elderly. We expect the children to grow up, gain skills and get independent in the future. The elderly, on the other hand, are likely to grow weak, forget the skills they had earlier, and be less capable of caring for themselves as time passes. Creating a safe environment means acknowledging their capacity, and not pushing them to do something they’re not comfortable doing. It also means setting up systems in which they receive adequate support in tasks they don’t find themselves capable of handling. 

Ensure they retain a level of dignity: Involve them in the decision making for issues to do with the family. If they were involved in certain activities like, say, planning the family budget, support them in doing it for as long as they can. This gives them a sense of purpose and dignity. 

Consult them on decisions that impact them: For instance, when planning for medical care, check for their preferences. If you’re consulting a new doctor, ask them how they feel about them: are they feel comfortable? Do they have any concerns? 

Spend quality time with them: Caregiving often comes with constraints of time, finances and energy. If you can afford to hire staff to take care of the day-to-day requirements, you can spend quality time with them, perhaps in an activity they enjoy. 

Help them have some interaction: Having social interaction can help the elderly to deal with their illness and infirmity better. Explore what you can do to facilitate this - having family and friends over, if possible, or accompanying them for a walk in the neighborhood park. This may help decrease the sense of loneliness.


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