Caring for ageing parents — from afar

A few years ago, I stopped commuting between those two lives.

I moved home to live with my parents full-time.

They are both in their early 80s. Both have Parkinson’s. Both are wheelchair-bound.

I always knew I would come back one day. What I hadn’t understood was what caregiving would actually demand — and what it would teach me about continuity of care.

Care happens between appointments

Much of caregiving doesn’t happen in hospitals.

It happens in the quiet moments.

Taking my mother to the park in her wheelchair.

Sitting beside her as she asks, again and again, where her father has gone — my grandfather, who died before I was born.

Watching my father wake up convinced he needs to return to his university to submit his PhD thesis — a chapter of his life that ended four decades ago.

I’ve learned that correcting these moments rarely helps.

Meeting them where they are does.

And that takes knowing the person — not just their diagnosis.

The continuity problem

Over the last few years, I’ve worked with at least 15 caretakers.

Finding a good caretaker is difficult.

But I increasingly think finding the person isn’t the hardest part.

The harder problem is what happens to everything the family, caregiver and doctor learn over time.

Every time a caretaker changes, the family starts explaining again:

• The medications.
• The routine.
• The medical history.
• What is normal.
• What has changed.
• What the doctor said.
• What needs to be watched.

And when care is coordinated remotely, the burden becomes even greater.

The family becomes the medical historian, coordinator and escalation point — often without ever choosing that role.

But this isn’t only a caretaker problem.

A family can have doctors, nurses, physiotherapists, caregivers and children living abroad — and still, each may see only a piece of the person’s story.

What happens to the story?

Medical records tell us what happened.

But good care depends on understanding what happened over time.

What was the person’s baseline?

What changed?

When did it change?

How did they respond?

What has already been tried?

What should be watched?

And most importantly:

What is different from their normal?

Ageing isn’t a series of isolated medical events.

It is a continuum.

Yet every time someone new enters the circle of care, families often have to reconstruct that story again.

That is the part I couldn’t stop thinking about.

What if care could remember?

Not just store medical records.

But remember the context around them.

• What changed.
• What was noticed.
• What was tried.
• What worked.
• What didn’t.
• What is normal for this person.

Something that allows the next doctor to understand what the previous doctor knew.

The next caregiver to understand what the previous caregiver learned.

And a son or daughter living thousands of miles away to understand what is actually happening.

That thought has stayed with me.

I keep wondering whether the future of care is really about having more information — or about making sense of the information we already have.

Care that knows the person’s story.

I’ve been spending a lot of time thinking about this lately.

And I’m excited about what might be possible.

Perhaps the future of elder care isn’t just about having more people who care.

Perhaps it is about making sure the story of that care doesn’t get lost.