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Supporting stroke survivors and caregivers in the recovery journey

Singapore’s first dedicated wellness centre helps patients recover psychosocially and emotionally, while providing social-emotional support to caregivers

For stroke survivors, it’s an uphill task to come to terms with their new reality. It becomes part of the recovery journey of adjustment, with the treatment and support from different healthcare professionals and social support. PHOTO: STROKE SUPPORT STATION

Seeing her father come out of his shell and smiling for the first time in six months since his stroke in September 2015, Ms Liew Huay Ling is deeply touched and wants to pay it forward.

The 41-year-old freelance fitness instructor now conducts K-pop and stretching classes at Stroke Support Station (S3), Singapore's first dedicated wellness centre dedicated to post-stroke care of stroke survivors and their caregivers.

"I wanted to bring music and dance to the stroke community as I believe that it makes one happy, and they get stronger as they enjoy the music," she says.

Stroke had left her father with speech and eating difficulties, as well as physical immobility. He was then 62 years old and Ms Liew was worried that her father would fall into depression. Although he was visiting a rehabilitation centre three times a week, she realised he would only follow the routine as instructed and had little social interaction with other people.

After conducting a K-pop session at an event held in Enabling Village's ActiveSG's gym and finding out about S3, Ms Liew signed him up for a range of activities such as fitness exercise sessions in April 2016.

After a few sessions, her father's condition improved significantly. He started making new friends and would light up when talking about the S3 activities such as gardening, drawing, art and craft, and singing.

Over time, with hard work and determination, Mr Liew is now able to take public transport independently to travel between his home in Geylang East and S3's centre in Redhill.

Ms Liew (in yellow) conducts various wellness sessions such as K-pop and Stretch and Strengthen programmes at S3. Seeing the smiles, encouraging words and gratitude shown by participants are the "best presents she receives". PHOTO: STROKE SUPPORT STATION

Helping stroke patients stay active and engaged

While physical rehabilitation post-stroke helps stroke survivors relearn cognitive and motor skills affected by stroke, S3 aims to help them recover psychosocially and emotionally in order to reintegrate into the community. It also supports caregivers in their journey to care for stroke survivors. To expand its reach to more stroke survivors, S3 opened its second centre at Jurong Point in May 2019.

"Stroke survivors should not be confined to social isolation and dependency. With effective therapy and other activities that promote health and wellness, a stroke survivor with self-determination, hard work and patience can lead a meaningful and active life," says Ms Alexis Lau, head of rehab and wellness at S3.

As highlighted by S3 social worker Ho Huei Fang, the most difficult aspect of stroke recovery is for stroke survivors to "come to terms and accept a new reality, a new normal, which may include serious physical deficits".

S3's executive director Ben Yeo says more can still be done to raise awareness of stroke rehabilitation and the role of caregivers even though public awareness has been increasing due to the combined efforts of the Ministry of Health, Stroke Services Improvement Team, Singapore National Stroke Association and S3.

People tend to associate stroke with the elderly. However, according to the Singapore Stroke Registry Report, there has been a significant increase in stroke incidences in the age groups of 15-29 and 40-49.

As most strokes occur suddenly, stroke survivors are left with a sudden loss of ability to perform certain tasks such as walking to the bathroom or getting dressed, and need a lot of physical assistance for support. They also have to deal with their grief over their loss of function, confidence and independence.

This is where family and caregivers such as Ms Liew step in as an important pillar of support.

Ms Lau says that having positive social support through family members or close friends are crucial in helping the person move through the initial phases of grief, and to encourage the person to be resilient through the recovery journey.

Ms Ho says many stroke survivors are still able to resume the activities they love, albeit in a different way.

"Many find new enjoyable activities, and most eventually find the grace to feel gratitude for life as it is now," says Ms Ho.

She wants stroke survivors to know that there is life after the stroke: "Life continues with all its challenges and rewards."

Ms Lau urges stroke survivors to focus on their abilities - not their disabilities - and actively live life to their fullest potential.

"While stroke can change one's life permanently, it is important to be open to learning new things, re-learning and exploring a different approach or way of life," she says.

Caregivers undergo training at S3 as part of the organisation's push towards providing them with adequate support during the recovery of stroke survivors. During the pandemic, S3 continues to support stroke survivors and their caregivers with wellness programmes such as the Re-learn and Enjoy Active Living (R.E.A.L), which have gone online. PHOTO: STROKE SUPPORT STATION

Challenges and sacrifices of full-time caregivers

Beyond the singular devastating impact of stroke on the survivor, it can lead to a heavy physical and psychological toll on the family members as well.

Many stroke caregivers tend to their loved ones 24/7. Some even quit their jobs, give up their hobbies and sacrifice their personal time. In the long run, this could lead to burnout and depression, said Mr Yeo.

Madam Soon Chii Sy, 57, recalled the stressful times after her husband Ken Woon suffered a stroke in 2018. He had to use a wheelchair to get around as his legs were weak. The mother of two had to take care of his meals, medications, prepare his bath and accompany him on evening walks. Prior to Mr Woon's stroke, the family enjoyed many activities together, such as going to the gym and travelling, but they could no longer do so.

Taking part in the Walk@S3 programme led to what she considers a "breakthrough" in his recovery journey. It enabled him to improve his stamina, and he gradually gained enough strength to walk on his own and for longer distances. Today, he is able to get around on his own by public transport and exercise regularly by taking long walks in the neighbourhood with a hiking stick.

Now that her husband has regained his mobility, Madam Soon says her caregiving burden has eased somewhat. She now provides more of an emotional support for her husband, reminding the 57-year-old to eat healthily and stay active. "Keeping him company is important as I believe it will support him in his mental wellness," she said.

At present, S3 provides caregivers with information or assistance regarding stroke resources and referrals to the appropriate agencies. It also provides care management and counselling for stroke survivors and caregivers facing financial stresses, grief and loss, as well as subsidies so they still get access to rehabilitation services. It also links caregivers with "care buddies" and a support group, so they can lean on each other during the recovery journey.

Mr Yeo also advises that families with stroke survivors can help to "share the load", such as by giving the main caregiver a day of respite every week by taking over the caregiving duties, showing concern and lending a listening ear and observing the main caregiver's moods.

Madam Soon says it is of utmost importance for caregivers to first take care of themselves before taking care of others.

No matter how tired or busy she gets, she would set aside time for exercise and her hobby, belly dancing.

Like Ms Liew, she also volunteers at S3, helping to take blood pressure readings and assisting stroke survivors during workout sessions.

Leading an active lifestyle has helped her navigate the stress of her caregiving responsibilities and work as a process and systems executive. "I don't think too much, just take one thing at a time, a day at a time. This will help to make things look much more manageable," she says.

Collaborating to further support caregivers

Caregivers play a crucial role in the recovery and wellness of stroke survivors, but the effectiveness of that role largely depends on their own health and well-being.

S3 is working closely with partners such as family philanthropy organisation Tanoto Foundation to develop a programme to further engage and empower family caregivers in the rehabilitation and reintegration journeys of their loved ones.

Founded in 1981 by entrepreneur Sukanto Tanoto and his wife Tinah Bingei Tanoto, Tanoto Foundation has operations in Indonesia, China and Singapore. Part of its human capital development work also includes medical philanthropy and healthcare advocacy. Besides supporting select medical research in diseases prevalent in Asia as well as research in early childhood development and maternal health, the foundation was a pioneer donor of S3 in 2015.

Says Ms Belinda Tanoto, member of the Board of Trustees at the foundation: "A quality health span matters for all families and communities, and this is something we hold close to our hearts as we support research and partnerships through our medical philanthropy work. Because we recognise that many caregivers of stroke survivors are family members, we are now exploring with our friends at S3 family-centred solutions and programmes to empower these caregivers and promote family harmony and filial piety."

When it comes to living with stroke, no one - survivor or caregiver - journeys alone.

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