The Caregiver

When we think about caregiving, we often picture the physical act of caring for someone.

Helping them get dressed. Preparing meals. Giving medications. Sitting beside their bed. Helping them move from one place to another. Driving them to appointments.

But caregiving is so much more than that.

And sometimes, the most exhausting part isn't the care itself.

I know reading this blog can feel like an exhausting reminder too. Or maybe it can help you to see what someone might be holding who is a caregiver.

It's being the person who has to know.

The person who knows when the nurse is coming.

The person who knows which medication was stopped and which one was continued.

The person who knows what the doctor said at the last appointment.

The person who knows who has been contacted, what still needs to be done, and what happens next.

The person who is there when the care staff leave at the end of the day.

The person who gets the phone call.

The person who asks the questions.

The person who has to make the decision.

And often, the person who is left holding all of it when everyone else goes home.

You can have a care team and still be the caregiver

Sometimes a person is providing care almost entirely on their own.

Other times, there is an entire team around them: nurses, home-care workers, physicians, hospice staff, personal support workers, specialists and other professionals.

But having help with the physical care doesn't necessarily mean that you stop being the caregiver.

You may still be the person coordinating everyone's schedules.

You may still be the one attending appointments.

You may still be the person communicating between family members and healthcare providers.

You may still be the one making sure everyone knows what has changed.

You may still be the person who understands what is happening because you are the common thread between all of these people.

And that can be an enormous responsibility and exhausting mentally and physically.

Suddenly, you're expected to know things you've never had to know before

One of the most disorienting parts of caregiving can be finding yourself in professional arenas you never expected to enter.

Suddenly, you're learning medical terminology.

You're trying to understand medications and side effects.

You're learning about hospice and palliative care.

You're trying to understand what happens when a medication is stopped.

You're asking whether your loved one needs more care at home or whether they need to move into a care facility.

You're trying to understand what level of care they require and how much that care will cost.

And then there are the legal and financial questions.

What does the power of attorney actually allow someone to do?

When does it end?

Is there a will?

Who is the executor?

Has an executor been appointed?

Can someone be paid to act as executor?

How will the estate be managed?

What needs to happen now, and what can wait?

These aren't necessarily things you have any previous experience with.

And yet, when someone you love becomes seriously ill, you can suddenly find yourself expected to become conversant in all of them.

Not because you chose this career.

Not because you trained for it.

But because you love someone who needs you.

The cost isn't only financial

Care can be extraordinarily expensive.

Home care can cost hundreds of dollars an hour depending on the type of support required, the time of day and the level of need.

Sometimes there are very specific physical requirements. A person who needs assistance transferring, for example, may require someone with the appropriate size, strength or training to help move them safely.

Long-term care can cost thousands, and sometimes tens of thousands, of dollars a month.

Families can spend enormous amounts of money trying to create enough support for their loved one that everyone else can continue working, parenting, sleeping, maintaining relationships and having some semblance of a normal life.

But even with all of that support, there can still be one person who remains the person in the loop.

The person who knows.

The person who coordinates.

The person who makes sure nothing falls through the cracks.

The person for whom the buck ultimately stops.

And that responsibility has a cost, too.

The hypervigilance of caregiving

I see this frequently in the people I work with.

They are often incredibly capable people.

They are organized.

They are resourceful.

They are used to getting things done.

So when something needs to happen, they make it happen.

They research.

They call.

They book.

They coordinate.

They ask questions.

They create spreadsheets.

They learn the terminology.

They advocate.

They solve problems.

And then another problem appears.

And another.

And another.

There can be a point where your nervous system simply doesn't get to stand down.

You are constantly anticipating what might happen next.

What if they fall tonight?

What if the night nurse calls in sick?

What if their pain gets worse?

What if the medication isn't working?

What if we need more care?

What if I can't find someone to come?

What if the doctor calls?

What if something changes while I'm not there?

What if I miss something important?

Even when you are technically "off duty," you may not feel off duty at all.

You may be at work thinking about your loved one.

You may be with your children answering messages from the care team.

You may be trying to have dinner with your partner while mentally running through tomorrow's appointments.

You may finally get into bed and realize that your brain is still making lists.

This is one of the reasons caregiving can feel so lonely.

Not necessarily because you are physically alone.

But because you are carrying a level of responsibility that other people may not fully see.

And sometimes, you don't want to step away

This is important, too.

Because caregivers can hear a lot of advice about setting boundaries, taking time for themselves, asking for help and stepping away.

And those things can be important.

But sometimes the reality is much more complicated.

You may not want to step away.

You may not feel ready to hand something over.

You may feel that being there is exactly where you need to be.

You may know that this is temporary.

Or you may not know how long it will last.

One month?

Six months?

Two years?

There is no way of knowing.

And if you are caring for someone you deeply love, there can be a profound willingness to make sacrifices you wouldn't make under almost any other circumstances.

That doesn't mean the sacrifice isn't costing you something.

You can willingly give everything you have to someone you love and still be exhausted by what it is asking of you.

If you love a caregiver, don't just ask, "How can I help?"

Sometimes that question is difficult to answer.

Because the caregiver is already overwhelmed.

They don't necessarily have the capacity to figure out what they need and then delegate it to you.

Instead, try offering something specific.

Bring dinner every Monday so they know they don't have to think about one meal each week.

Drop off groceries.

Walk their dog.

Come sit in the house with their loved one for an hour so they can leave.

Offer to accompany them to an appointment.

Sit with them while they make a difficult phone call.

Bring them a coffee.

Take their children to the park.

Offer to research something they have been trying to figure out.

Book them a massage.

Pay for a manicure.

Or simply come over and sit beside them and listen.

Sometimes support doesn't need to be complicated. Oftentimes this is all they want. A safe place to vent, talk, and share.

Sometimes it is simply giving someone permission to stop being the person who is responsible for everything for an hour.

Look after the person who is looking after everyone else

If you are caring for someone with a life-limiting illness, an aging parent, a spouse, a partner, or a child, I want you to know that I see you.

The physical work matters.

The emotional work matters.

The mental work matters.

The administrative work matters.

The appointments matter.

The phone calls matter.

The research you are doing at midnight matters.

The meals you are making.

The medications you are organizing.

The questions you are asking.

The decisions you are making.

The times you sit beside their bed when everyone else has gone home.

All of it is caregiving.

And all of it can take an enormous toll.

You do not have to earn the right to be tired by reaching a breaking point.

You do not have to prove that you are struggling before you deserve support.

And accepting help does not mean you are stepping away from the person you love.

Sometimes accepting help is simply another way of loving them.

Because the person who is caring for everyone else is also someone worth caring for.