I Thought, "Surely This Can't Be My Life?"

I can't begin to count the hours I've spent sitting in hospital and doctors' waiting rooms over my twenty-plus years as a carer. GPs. Geriatricians. Cardiologists. ENTs. Radiologists. Ophthalmologists. Occupational therapists. Physiotherapists. Dentists. Podiatrists. The list seems endless.

Then there were the forms. So many forms. I seemed to spend an extraordinary amount of time writing down information I'd already provided somewhere else, a different doctor, a different department, the same medical history, medications and contact details I knew I'd given someone before.

Hospital departments were supposed to share information. I learned not to rely on it. I started carrying spare copies of important documents with me because I never knew when I'd be asked for them again. It saved time, but there was still an endless amount of explaining, repeating and filling things in.

Then you waited. To check in. For the doctor. For tests. For results. Because an appointment was running late, someone had been called away, or an emergency had taken priority. There's probably a reason so many waiting rooms have signs asking patients to be patient.

I understood emergencies happened, that medical professionals were busy and another patient sometimes needed them more urgently. Knowing that didn't make the waiting any less frustrating.

Your time as a carer already felt precious. There was always something else waiting for you.

Shopping. Medication to collect. Phone calls. Dinner to organise. Your own family to get home to. Perhaps somewhere in there, something you wanted to do for yourself. Yet there you were, sitting in another waiting room with no idea whether you'd be there for twenty minutes or two hours.

That lack of control frustrated me enormously. So much of caring involved working around other people's schedules, their appointment times, their availability, their delays, their decisions. I could organise my day down to the last detail and one late appointment would throw the whole thing out.

One Appointment Has A Habit Of Becoming Three

Another frustration I remember well was taking my mother-in-law to one medical appointment and walking out with two or three more things to organise. Even getting to a routine appointment involved work.

Leading up to one visit, I'd already taken her for blood tests so the doctor would have the results, and we'd collected her Prolia medication for osteoporosis so the doctor could give her the injection while we were there.

My mother-in-law had recently broken her hip and was using a walker. On appointment days I always arrived at her apartment thirty to forty minutes early, so I had time to help her get dressed and ready without rushing her. Then we had to get downstairs, navigate the lift and the flight of stairs outside the building, get her safely into the car and load the walker. At the other end I needed a car park close enough for her to manage the walk.

And that was before we'd even entered the waiting room.

So, when I say I "took my mother-in-law to the doctor", those seven words don't come close to describing what was involved. A twenty-minute appointment could take a considerable chunk out of my day.

Then, during the appointment, her doctor suggested she have an eye test and see a podiatrist. Her eyes weren't causing problems and she didn't wear glasses. There wasn't a particular issue with her feet either.

All I could think was, oh no. More appointments.

That thought wasn't about neglecting her health. I knew exactly what another appointment involved: finding somewhere suitable, making the booking, adding it to my calendar, getting her ready, transporting her and the walker, finding accessible parking, waiting with her, getting her home, dealing with whatever came out of it. Then doing it all again for the podiatrist.

My mother-in-law was sick and tired of medical appointments too. When we left, we talked about it. Neither issue was causing her problems, so together we decided to put the eye test and podiatrist on the back burner. We had to prioritise.

When you're caring for someone with multiple health problems, every recommendation takes more time, energy and organisation. One appointment leads to a blood test. A test leads to another appointment. An appointment leads to a referral. A referral leads to another specialist. You go in hoping to get one thing sorted and walk out with three more things added to the list.

And none of those appointments belongs only to the person you care for. They become part of your calendar, your workload and your life too.

Then There Was The Waiting

One experience with my mother-in-law summed up the frustration perfectly. Her GP decided she needed to see a geriatrician and wrote a referral. Within about thirty minutes of arriving home, I emailed it to the geriatrician's office. Then I waited.

A week passed without a response, so I called. The receptionist was apologetic and assured me they'd get back to me soon, and at least explained the costs involved. About twenty-four hours later, I received a response.

They were offering my mother-in-law an appointment in eight months.

Eight months. I was astounded. Her GP believed she needed specialist assessment, I'd acted on the referral immediately, and the earliest appointment being offered was eight months away. I still needed to confirm we'd accept it, complete another set of forms and send everything back.

I called again and explained she'd recently been discharged from hospital and we needed this urgently. Was there any chance of something sooner?

The receptionist was sympathetic, but there was nothing earlier available. So, I asked if they'd contact me the moment somebody cancelled, no matter how little notice. I was prepared to drop everything and get her there. She agreed to put us on the cancellation list, but warned me that with waits that long, people rarely cancelled.

And there was the irony. I was trying to protect my time and keep some control over my own life, yet to get my mother-in-law the care she needed, I now had to be ready to drop everything at a moment's notice if somebody else cancelled.

The crazy thing is, she never did see that geriatrician. During the eight-month wait her health kept deteriorating, her needs increased, and eventually we reached the point where staying at home wasn't working anymore. With her involved in the decision, our focus shifted from getting her assessed to finding the right residential aged care. The appointment I'd chased, followed up and made myself available at short notice for was no longer relevant.

This was caring too.

People often think about caring in terms of the visible things, taking someone to an appointment, doing their shopping, preparing meals, helping them at home. Far less visible is the time spent organising their care. Referrals. Emails. Phone calls. Following up. Filling in forms. Chasing information. Waiting for someone to call you back, then waiting months for the appointment you were trying to organise in the first place.

You spend hours dealing with the problem in front of you, then someone's health changes and a different problem replaces it. A hospital admission changes the plan. A fall changes the plan. A deterioration in health changes the plan. There's rarely a clean finish to one task before the next one begins.

More often than not, somewhere in the middle of all this, the same thought would cross my mind.

"Surely this can't be my life?"

I didn't think that because I didn't love the people I cared for. I did. But loving someone didn't stop me from missing the freedom I used to have. I missed making plans without checking someone else's appointments first. I missed deciding what I wanted to do with my own day. Most of all, I missed feeling that my time belonged to me.

Caring rarely arrived as one enormous change. It built over time. An appointment here, a prescription there, shopping, cooking, paperwork, phone calls, another specialist, another test, another problem to sort out. Each task on its own seemed manageable, but together they started taking up more and more of my life.

Their appointments were now in my calendar. Their medical problems occupied my thoughts. Their emergencies changed my plans. If something went wrong in their life, it immediately affected mine.

My own plans became easier to cancel because they weren't urgent. Hobbies slipped away.

Friendships became harder to maintain. Weekends stopped feeling like weekends. Holidays required an extraordinary amount of planning before I even packed a bag.

I was still living my life. I was a wife, a mother, a friend and a person with my own responsibilities, interests and plans. At the same time, I was helping manage another person's life as well.

That's what I mean when I talk about living a parallel life. Two lives running at the same time, and I was trying to keep both of them going.

It Happens So Gradually

No one wakes up one morning and decides to put their own life on hold. I certainly didn't. There wasn't a moment when I consciously decided caring would take priority over everything else.

It happened one small decision at a time.

I'd skip Pilates because an appointment had come up. I'd tell myself I'd catch up with a friend another week because something needed sorting out. My own medical appointment wasn't urgent, so I'd move it. Something I wanted to do could wait because someone else needed me.

Each decision made sense at the time. That's part of the problem.

When you're deciding between something you want to do and something your loved one needs, their need usually wins. An appointment feels more important than Pilates. Picking up medication feels more important than coffee with a friend. Sorting out a health problem feels more important than an afternoon doing something you enjoy.

Your own life becomes the easiest one to move around.

At first, you tell yourself it's temporary. I'll go back to Pilates next week. I'll see my friend when things settle down. I'll make my appointment next month. But caring doesn't always settle down. Another appointment appears. Something changes. There's another problem to sort out. The thing you postponed gets postponed again.

Eventually you stop rescheduling some things altogether. That's what happened to me. I didn't deliberately give up parts of my life. I kept putting them off because there always seemed to be something more important that needed my attention.

And "eventually" became years.