Learn caregiving skills to make your journey a joy rather than a burden.

 

BY: Priyanka Awasthi

 

Perhaps it dawned on you quite gradually. At a family reunion dinner with your parents, you found that this year, your mother had not cooked the family’s favourite dishes herself. She had outsourced all the work to a caterer. When you asked her ‘why’, she sighed – “Aiyah, too tired, getting old already”.

Or, perhaps it began after she fell at home. “My mother just had a fall and we urgently need help. Where do I go for financial support? Someone said that there is a helper levy waiver if I hire a helper to look after my mother. Where and how do I get such information? Would I be subjected to Means-testing? In either situation, you are now assuming the role of a family caregiver. Your role as caregiver extends beyond “physical care”. You will need to sometimes be a nurse, doctor, counsellor, friend, financial advisor, decision-maker, coordinator or manager. If you are a single child with no close family friends to share the care, you could be undertaking all these roles yourself, while balancing your work and other family responsibilities.  

A family caregiver forms the backbone of our country’s long-term, home and community-based care system. Every caregiving situation is unique and there is probably no such thing as the “perfect” caregiving approach. However, there are some common sense principles you can embrace to make the journey a joy rather than a burden.

Some journeys are long, stretching over a few decades while some are relatively short. Whatever the condition of your loved one and however long the duration, caregiving involves time, commitment and sacrifice of personal emotional space and time, especially when things have changed and one needs to adapt to the new normal. There may be many challenges, especially initially, but over time as one gains experience and confidence, one learns the skills to manage and to celebrate the caregiving journey as part of our life journey.

Here are five habits that serve as a simple guide as you embark on your caregiving journey with your loved one:

 

To know is the first habit that you would like to cultivate so that you become a fearless caregiver. Be curious! Be persistent and always ask questions to address all the information gaps – ask why? Why not? Where? Who? How? When? Gather as much information as you can about the condition of your loved one. What treatment options are available, how to manage the condition, how will the disease progress, and what are the care needs at different points? What are the community resources that you could tap on for funds, for rehabilitation therapy or for home nursing help?

Learn relevant new skills such as how to use a wheelchair or how to tube-feed. Speak with healthcare professionals and ask for details. Prepare a list of questions when you accompany your loved ones for medical appointments. Update your knowledge and information from time to time by attending workshops provided by agencies such as the AWWA Centre for Caregivers, and relevant talks/forums at hospitals, polyclinics and community centres in your neighbourhood. Eventually, you will feel more empowered and in control of your caregiving journey.

 

Plan follows the habit of know. What is the knowledge good for if it is not put into action? Involve your family members and loved ones so that their wishes and concerns are acknowledged when developing the long-term care plan. Divide the roles clearly among your family members to minimise confusion and misunderstanding later. Discuss the care plan in detail. Go through a few of the most probable scenarios – will you need to hire help, when will that be? Who will finance the whole process? Who will be the primary caregiver? Who will be the first backup in case of an emergency? Include family members based overseas in your planning and decision-making as they would appreciate being involved and pre-empted about situations when they may have to travel home to help you out for a couple of weeks or months – when the button is pressed.

“The idea of planning and gathering all the information was daunting. After attending the training organised by AWWA Centre for Caregivers I actually got down to it. Surprisingly, it made my life relatively easy afterwards,” shared Francis Liou, 53, a caregiver for his wheelchair-bound mother in her mid-70s.

Create emergency checklists, including a file on your loved one’s medical history such as medications, dosages, allergies and prepare all relevant documents. Place them in a safe but common place in the house, and make this information known to all caregiving team members. It is equally important to seek support from the various community resources that are available to you at affordable rates like daycare centres, senior home care programme, and senior activity centres.

 

Communicate. Effective communication underpins effective caregiving. Without this, even the best laid plans risk failure. Always keep in mind that each caregiving situation is unique and dynamic. Much depends on how your loved one responds to the treatment. Stay up-to-date with the healthcare systems. Talk to your loved one to understand their feelings and listen to them. Keep the loops of communication closed with each family member – including those living near and far. A good habit to cultivate with family members based overseas is to use social media or e-mail to update weekly or monthly through text and photo updates so they can see the loved one’s condition for themselves. This helps reassure as well as prepare them to accept the gradual frailty affecting your loved one over time.

 

Acknowledge. This is about recognising the people around us and also recognising how caregiving is impacting your body, mind and soul. Never underestimate the power of a simple ‘thank-you’ and ‘please’ – to acknowledge your caregiving team members and loved ones. Simple words can be great morale boosters when expressed sincerely. Talk to a friend, psychologist or counsellor about how you feel. Take time to come to terms with the more difficult emotions and feelings that you may be confronting. Seek time out for silent contemplation and prayer as that can help keep you centred and to better deal with the situation. At the same time, it is okay to celebrate simple occasions like 42-year-old Jasmine Chua does.

Jasmine, who looks after her mother in her 70s with dementia, shares that she celebrates the occasional good days amidst the more challenging ones – with a thank-you to herself, her helper and her father at the end of each day.

 

Self-care. This is perhaps the most difficult yet most important thing to do for most caregivers. Plan for self-care including rest, recreation and occasional time-out breaks when you develop the care plan. “I feel guilty when I go for a cup of coffee with my friends and leave my father in the care of my husband,” shared Felicia Chan (name has been changed), 52, who is caring for her father with dementia. It is in our nature to feel guilty about taking time off to care for ourselves while our loved ones are unwell and bedridden.  

Do bear in mind that the caregiving journey starts with you. You will be a stronger caregiver only when you are physically, emotionally and mentally healthy to stay the course. Create a checklist for yourself in the care plan. Did you eat well, rest well and have you arranged for your time-offs? Doing so will help you maintain a positive attitude in your caregiving journey. Self-care is most vital for caregivers in a long-term care situation, and one should not be deterred from taking time out to exercise, to watch a movie or dinner with a close friend, and even to pack for a short holiday to recharge. Although respite care options are mostly costly and limited, consider such plans in your budgeting in order to preserve your emotional well-being and mental state.  

“Caregiving can be lonely. Loneliness can give rise to negative emotions, which can be bad for mental health. Education, which imparts knowledge and improves awareness, is important for the well-being of caregivers,” shared Dr Kan See Mun, AWWA Centre for Caregivers’ associate trainer, Caregiving Life Skills Training Series.

 

Priyanka Awasthi is a social worker with AWWA Centre for Caregivers. The Centre offers the Caregiving Life Skills Training Series held at Agency for Integrated Care @ City Square Mall. For more information click here.

 

(** PHOTO CREDIT: AWWA Centre for Caregivers)

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