Giving till there is nothing left: What dementia steals from caregivers

Dealing with sundown syndrome and huge personality changes accompanying dementia can be all-consuming.

- Millie Yun Su and Caroline Lim

Dementia arrives slowly, and caregiving often follows the same path, say the writers. If we continue to overlook caregivers, we risk burning out the very people who hold our ageing society together.

(PHOTO: ISTOCKPHOTO)

When Jessica’s father died after a long battle with cancer, her mother began showing signs of dementia — forgetfulness, mood swings, disrupted sleep.

At 45, Jessica left her job to grieve and care for her mother, thinking it would be a short pause before she returned to work.

But the pause stretched. Months became years. Jessica’s world shrank to the four walls of their flat. Outings with friends stopped. Nights were broken by her mother’s repeated wake-ups.

To get by, Jessica took on odd jobs, but she felt herself fading — no longer the confident professional she once was, but someone whose energy and joy were slowly eroding.

“J found myself out of touch. 1 became a dull and boring person,” she admits.

Eight years on, she is drained, still balancing her mother’s needs against her own survival, unsure if she can ever find her way back to the life she had.

Samantha, 44, lives the same exhaustion every night.

At midnight, her mother jolts the household awake, insisting they get ready for work or school.

“It’s challenging talking to her because she can’t remember what we say,” she shares.

The broken nights bled into her days — she struggled to concentrate at work, her body tensed each time the phone rung, and she lived in a constant state of alert.

What most families don’t see coming is that dementia is never just about memory loss.