‘She’s not a burden, she’s my grandma’: Lessons from an extended family’s care for a terminally ill elder

I have lost count of the number of times I hear people complain that an older family member is “troublesome” or “burdensome”, or elders expressing fears of “bothering” their adult children.

This is especially common when health goes downhill and the elders — once caregivers to their children and grandchildren — need to be cared for themselves.

In a society that prides itself on productivity and efficiency, growing old and even caring for the aged are often deemed as dreadful and portrayed in a negative light. This does nothing to reduce the anxiety and ageist mindset of younger adults, when they need to be encouraged to be part of the solutions.

Ironically, even health and medical experts can get caught by the ageism trap when they use terms such as “caregiving burden”, despite their good intentions.

Some people even speak of how there is no need to waste resources and money sustaining the aged in their last lap of life.

Is a person’s life so cheap and easily discarded? I would prefer to think it is the fear and anxiety of being financially strapped that drives this.

I will not sugar-coat it: Taking on the care of older family members when they are no longer mobile or have a debilitating condition is an undeniably demanding and complex task.

It is also not a one-person job — unless you want that person to burn out and collapse.

However, if families doing the heavy lifting are properly supported within the community and have easy access to well-thought-out support schemes, perhaps caring for our elders can become joyful and meaningful, rather than a bleak and depressing experience.

That was why I was paying some attention to the news at the start of the week, when the Government announced that it is giving more updated support for seniors and their caregivers under its 2023 Action Plan for Successful Ageing.

Having seen and experienced first-hand the complexities of the care my frail grandparents need and the struggles my extended family face, I feel that this move is long overdue.

CARING FOR TERMINALLY ILL GRANDMA

Last April, my grandmother, with whom I have a close relationship, was given just “days to weeks to live”.

In her 80s now, she has been battling many serious health complications and chose to be cared for in a nursing home because she was not comfortable with having a live-in domestic worker.

However, the Covid-19 restrictions in nursing homes in the past couple of years took a severe toll on her health and cognitive function, and she deteriorated to the point of no return.

She was given a terminal diagnosis and placed on end-of-life care due to a non-healing diabetic foot ulcer. She was simply too frail and too sick to survive a limb amputation operation.

With rotting flesh that required intensive daily wound cleaning, multiple health problems and in a bedbound state, it would have been so easy for us to place her in an in-patient hospice.

Hospice care is provided for a person with a terminal illness with a prognosis of six months or fewer to live if the illness runs its natural course.

However, we decided to take on the difficult task of handling her end-of-life care at home. She now lives with my married aunt Mary, who is one of my grandma’s four children.

In the meantime, my grandfather, who is also in his 80s and has several medical conditions as well, lives with my mother.

My grandparents’ care had to be split up between two households.

This shows you the circle of support needed to care for two very frail and ill seniors. Both are living in public flats sharing space with different generations of the family.

Aunt Mary does most of the hard work in caring for my grandmother, but there is also a lot of help and support from a live-in domestic worker, the extended family and a team of home hospice nurses and doctors.

Days are spent troubleshooting problems by trial and error. Family meetings are held to discuss the next steps of care over video calls or over dinner.

Resourceful family members would go around sourcing for reasonably priced medical supplies, such as a second-hand hospital bed.

We learnt to tackle a range of issues that come with caring for a terminally ill senior. For example:

• How do we clean her wound in a way that doesn’t hurt her?
• What can we do if she stops eating and drinking due to a lack of appetite?
• How do we get her to take 10 tablets of medication every day?

When she caught Covid-19, we fretted over whether we should admit her to the hospital.

On my end, I try to contribute what and whenever I can in simple ways.

For instance, in a bid to boost my grandmother’s poor appetite, I enticed her with her favourite home-cooked traditional desserts but modified the recipes so that they were diabetic-friendly.

I turn to Google and acquaintances in the community healthcare industry to get information. I also read up on end-of-life care so that I could help address some of the concerns.

When everyone tries to chip in to help and connect with one another, the caregiving journey feels less lonely.

THE COSTS OF CAREGIVING

My aunt and my mother have flexible work arrangements since they run a small business together.

It will be a formidable feat for a person working full-time to be a primary caregiver. Yet, having part-time or no earnings may not give you the peace of mind to pay for medical bills and caregiving needs.

My aunt gets some subsidies and grants here and there, including the S$200 monthly Home Caregiving Grant for a person with at least permanent moderate disability.

However, it is nowhere enough to cover the daily expenses and home care of a frail senior with medical conditions, and ensure a good quality of life.

The national action plan is looking to double this grant to S$400 for families that meet the income criteria.

With our arrangement, it is still substantially more expensive to care for my grandmother at home than in a nursing home.

Including the wage of a live-in domestic worker, the expenses could go up to an estimated S$2,000 a month for each grandparent.

This excludes the cost of wheelchair-friendly transport for medical appointments or emergencies.

By comparison, nursing home expenses, after subsidies, may work out to be around S$600 to S$700.

The cost difference does not make sense at all.

Seeing that most Singaporeans prefer to die at home than in a care facility — and working on this premise for the national action plan — then the Government’s policies must make it much less daunting financially for the caregiver, so that the elder or the dying still get to maintain a decent quality of life.

Apart from money, time is also of essence.

A new set of Tripartite Guidelines on Flexible Work Arrangements will be introduced by 2024, to make it easier for caregivers of elders to work flexibly around family commitments.

Employers certainly can do so much better all round by having more humane policies at work.

Much like providing parents with childcare leave, eldercare leave will be appreciated by caregivers who have to juggle work and have less or no help from family members or relatives.

WHAT ELSE THAT CAREGIVERS NEED

Another key challenge we face in looking after my grandma is the lack of awareness of support options available within the community.

For example, my family was not aware at first that home hospice services or certain elder-friendly subsidies were available. If we knew that earlier, we could have planned in advance.

Understanding how all the various support services and initiatives worked has been arduous.

Caregiving families want seamless support and access to these resources in simplified, easy-to-understand layman terms.

We do not care for the fancy names of initiatives, plans and governmental schemes.

We do not want to jump through complicated hoops and be bogged down by excessive administrative chores and paperwork.

All these only confuse us and derail us from the concrete task of caregiving.

I cannot imagine what it is like for households where members do not or cannot keep abreast with the news and public service announcements, or they do not have people advising them where and what to look for help.

Healthcare teams could also do better when explaining and referring care and support options available outside of the hospital for patients and their caregivers.

At one hospital here where my grandmother was admitted for the festering gangrene in her foot, a doctor wanted to discharge her quickly.

There was no follow-up on how we could cope with her care after her hospital discharge, just a cold comment on the fact that there was nothing more to be done for her medically. We felt utterly lost.

Thankfully, our experience was drastically different when we switched to the Singapore General Hospital.

Even though the terminal prognosis given was the same, a caring doctor took the time to discuss care options and referred my grandmother to a home hospice team.

The home hospice team reassured us that they would be there every step of the end-of-life journey.

This show of support made a big difference in reducing our anxiety and gave us the confidence to forge ahead.

In the latest action plan, it was stated that the Ministry of Health is working to improve the quality of end-of-life care and “fulfil the final wishes of Singaporeans”, through these measures:

• Supporting caregivers by facilitating timely access to home-care equipment, for example
• Smoothening discharge processes from hospitals and encouraging earlier referrals to palliative care
• Boosting the capabilities and capacity of primary and community care providers, such as nursing homes and family physicians, with the knowledge and skills to support patients at the end of life
• Raising awareness of end-of-life care and pre-planning

Through these efforts, the proportion of deaths in hospitals is targeted to be cut from 61 per cent to 51 per cent by 2027.

‘NO REGRETS’

Against all odds, my grandma managed to survive many infections, including Covid-19, while she was at home. This is in addition to her non-healing foot ulcer.

I would like to think that it is love that has kept her going.

We recently celebrated Christmas and Chinese New Year together.

Seeing her eyes light up during our ritual new year family “ban-luck” session — a social game of Black Jack — gave everyone much joy. Although she can no longer speak coherently, she won S$48 that day.

I recently asked aunt Mary if she found my grandmother a burden, given that she does the bulk of the caregiving and cleans her wound every day.

She said: “Not at all. Thank God that we have a good helper and family members.

“I’ve no regrets (looking after her) and I’m very happy we can spend time with her in her final days.”

Holding my grandmother’s liver-spotted hands in mine, I thought to myself, “Me, too”.

The details of the 2023 Action Plan for Successful Ageing can be found online.