Advice Special Needs Caregivers Need to Hear

RDSS

It can be too easy for caregivers to lose themselves in the daily tasks of caregiving. This may cause us to experience issues such as burn out, poor health and relationships with our family members.

Instead of waiting till the last minute to deal with these issues, how can we prevent and pre-empt them? How can we prepare ourselves for better quality lives as we go about caregiving for our special needs dependents?

CaringSG caught up with Kenneth Mah, a father who quit his job to care for Chloe, his daughter, in 2010, after she was diagnosed with Pompe disease (an inherited neuromuscular disorder that causes progressive muscle weakness) at seven months old. He is her main caregiver who looks after and coordinates her daily routine, education, hospital visits, and therapies.

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Caregiver Kenneth Mah and his daughter Chloe (Photo courtesy of RDSS)

In 2011, Kenneth and his wife, Patricia, founded the Rare Disorders Society (Singapore) or RDSS to create awareness about various life-threatening rare diseases. RDSS has grown from three to 130 families and provides financial, emotional and psychosocial support to these families. To acknowledge his caregiving efforts, he was awarded the Exemplary Caregiver Award 2019 by Club Rainbow.

Kenneth hopes fellow special needs caregivers will hear this advice which have supported his own journey as a caregiver over the years.

 

1. Work with the strengths of your family members

“Each person has their strengths. We cannot expect wife and husband to be equally involved in the same way.” – Kenneth Mah

Not everyone can do every task equally well. Kenneth advises caregivers, fathers especially, to be honest with themselves regarding the strengths and weaknesses they and family members have.

He openly shared that he is dyslexic. Hence although reading is not his forte, he is better at remembering pictures and doing hands-on tasks. As Patricia is better with words and is doing well in her career, she takes care of the family’s finances and is helping him to oversee the running of RDSS.

This is one reason why he decided that to quit his job to be a stay-at-home dad to Chloe. Besides familiarising himself with first aid and CPR, he is a MacGyver of sorts, improvising for her daily medical routine as she grew older and her needs evolved. He trialled and invented new equipment using everyday items to fulfil her medical needs when there was no reported precedent or example to refer to.

With both parents to look up to, Chloe has bloomed. She has learnt how to communicate using a communication app (Touch Chat) installed in iPad and said her first words ‘Papa’ at eight years old. Her younger brother, Cayden, has also grown to become an empathetic boy who looks out for classmates who need help at school.

 

2. Remember to self-care

Kenneth makes plans where possible to have some time for self-care. He arranges sessions with friends for golf, badminton and makan sessions, during periods which Chloe is looked after in school or by the helper.

He advises caregivers to:

  • Embrace the changes
  • Prioritise basic self-care – set ‘me time’, ‘family time’ and ‘we time’ with friends.
  • Be kind to yourself and set short term self-care goals
  • Engage in meaningful and healthy activities
  • Have a personal crisis plan – keep a circle of confidantes
  • Positive thinking – there are more solutions than problems

 

3. Look after other caregivers too

In RDSS, caregivers support each other through the ups and downs. When he was caregiving for Chloe in ICU, several caregivers stopped by the hospital to spend time with him, go for meals, listen to him and provide emotional support.

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Kenneth sharing about RDSS at a briefing for Let's Take A Walk event in 2019, which RDSS was an adopted beneficiary of (Photo courtesy of RDSS)

In the same spirit, Kenneth shared that although some children in his RDSS group have passed away, he reassures their caregivers that their families are still part of RDSS. Some of these caregivers have since taken a step forward to volunteer with RDSS to care for other caregivers.

This is the spirit of servant leadership and solidarity that Kenneth hopes will multiply in Singapore, where the needs of the community come first and caregivers take care of one another.

 

4. Be sensitive to the feelings of other caregivers

In the past, Kenneth had encountered an incidence where a parent pulled his child out of the class that Chloe was in, because he had the mistaken impression that Chloe was dragging down his child in terms of academics due to her condition, although this was not the case.

He is empathetic that caregivers should be considerate of one another and be mindful not to look down on other kids with special needs.

As a caregiver, he also experienced conflicting emotions of relief, self-doubt and guilt of keeping Chloe alive, and the perpetual stress that she could die at any moment. These feelings were exacerbated during one traumatic near-death episode in 2018 when Chloe had a cardiac arrest and he attempted to revive her by performing CPR, while fearing she would have permanent brain damage and needed to be hooked on life support. She recovered with no apparent damage.

Kenneth hopes the public would be mindful of caregivers’ feelings as well, sharing in a TODAY article that he faced negative comments from people and keyboard warriors who said Chloe has ‘no hope’ and criticised him and his wife for trying to keep their child alive.

To help improve understanding and sensitivity towards caregivers of special needs dependents, Kenneth is helping CaringSG with CAREkaki training of grassroot leaders and volunteers to know what to do when they come across a special needs family.

As caregivers could also be siblings, RDSS supported the launch of CaringSG’s first webinar: Special Siblings – Just As Special, where invited speakers discussed the experience of growing up with a sibling with special needs and later being involved in their care, and what parents can do to care for all their children while raising a special needs child.

About Rare Disorders Society (Singapore) or RDSS

RDSS is a charity initiated by parents of children with LSD (Lysosomal Storage Disorder). Established in 2011, it aims to raise awareness on various life-threatening rare diseases. The society offers financial support through various supports such as Medical Intervention Support, Power For Life and Home-based learning and therapy support to over 100 beneficiary families with rare diseases in Singapore.

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