Confessions of a Dementia Caregiver

They say that watching a parent with dementia is like seeing a child grow, only in reverse. Is that really true? Yes, unlike a child, mental capabilities diminish steadily over time; but far from a child’s world of happy curiosity, dementia patients trundle into a world of hopeless emptiness. What is starker, however, is how we as caretakers respond.

When it comes to our children, we’re bursting with stories to share.

“See how fast Ravi is growing!”.

“You won’t believe what Ria said today!’.

“Sid’s teacher said he’s got a special ability in maths.”

Our kids are part of us, and we can’t stop ourselves from expressing that.

But it is different when a loved one is suffering from dementia. They say silly things. Embarrassing things. Stuff that makes you cringe even, especially in public. So we shush them. We get defensive & protective. We are part of our parents, but we’re in hurry to express that.

Personally, I’ve on occasion found myself embarrassed when my mother, who suffers from Alzheimer's Disease, said or did something puerile in public. But it isn’t just me. Many people I know think this way too. And so we do what we think we must – limit their exposure to the world outside, so others don’t judge them, and in the process hurt them (and we don’t get embarrassed either).

It is so easy in such situations to forget how incredible your parents were in their prime. My mom for example never went to school, but can read & write fluently in 5 languages. She would cook delicious meals for our joint family of twelve every day with a constant smile on her face – “cheaper by the dozen”, she would say. She never ate out but was curious to try out new recipes just to see the smile on our faces. And despite money always being short, we’ve never once heard her complain; instead, she’d manage the little we had in the most inventive ways.

So why do we change in how we respond to them? Why can’t we accept that someone we love has a mental disease? Because we believe it reflects on us? As SRK says in Dear Zindagi, “We go to a doctor when we have a fever, so why do we struggle to come to terms with mental illness?”

Having dealt with Alzheimer's Disease at close quarters for a few years, I now understand a few things...

1. It is a disease and a one-way street. So don’t go chasing miracle cures (e.g. drink coconut oil) or conflicting medicine systems. Accept it. Go with the flow. Spend energy instead on being there for them & celebrating each day. There’ll be good days; enjoy them. There’ll be bad days; brace for them.
2. They’ve cared for us unconditionally. We now need to dig deep into our reservoirs of patience & cheer to do justice to their spirit. Small gestures can make them really happy, and making them feel needed is invaluable.
3. Keep them mentally alert & active. Not because it’ll slow the disease. But because it’ll make their last days interesting. And because it’ll tell them you care. There are so many products & ways that can help us do that today.
4. As time goes by, we’ll need to shift our focus from nurturing (emotional investment in their development) to care (competent, enabling support). Emotions keep you invested, but also drain you; so get help if you can afford it.
5. Yes, they are not kids, who need our nurturing embrace to grow & develop. But they are childlike in their helplessness and need us to provide protective care just as much.

By Prasad Narasimhan

Caregiver & Co-Founder of heyzindagi.in