What does it mean to be a caregiver?

It means rearranging your work schedule at a moment’s notice.

It means taking a deep breath and walking away before you explode.

It means advocating to healthcare providers.

It means staying calm in a crisis.

It means lowering your standards for the cleanliness of your house.

It means educating yourself.

It means adjusting to change.

It means rearranging your home.

It means rearranging your life.

And it also means….

Development of new skills.

An opportunity to make a difference.

Strengthened relationships.

Enhanced problem-solving abilities.

Opportunities for creativity.

A sense of purpose.

A chance to support others in similar situations.

Nothing is all good, and nothing is all bad.

You may be eager for your caregiving phase to be over. Then, when it is over, you want it back. You’d give anything to go back in time and give your loved one a bath again. Even though you hated giving them a bath.

You may experience increased frustration with your loved one, while at the same time you feel your love for them growing. As one caregiver told me recently, “I love her more than ever but I don’t want to be around her in this moment.”

You may want the support of your family, but the type of support they are capable of providing enrages you–and you want nothing more than for them to leave you alone. You don’t care if you ever hear from them again.

It’s a lot.

It’s complex.

It can be negative and it can be positive all at once.

It’s okay if you don’t know what you feel.

When people ask you how you are doing, you couldn’t be honest if you wanted to. You don’t know how you are doing.

You aren’t sure about your own health. You think you might have the flu, or are you just tired? Do you need to take a COVID test?

You aren’t sleeping. Is that because of anxiety? Maybe fast food has become a staple. You wish you cared about your own health. Sometimes you just don’t have the energy to think about yourself.

People are telling you to take care of yourself but they aren’t doing anything to help you take care of yourself. They haven’t offered to stay with your loved one or run any of your errands. But they said things like, “Honey, you really need to think more about your own health.” How helpful.

The people who you thought would be supportive aren’t that supportive. Or maybe they’ve gone AWOL. Even worse, perhaps they are physically present but oblivious to your challenges and sacrifices.

If you are lucky, there are people who step up for you. Often they aren’t the people you expected to be there. You try to focus on them rather than the people who aren’t there.

And in all of it, there are these moments that are somehow good. Maybe not good like good used to be. Maybe good in a different way. But good.

You take your mom to the emergency room and despite it being an overall terrible experience, there’s a nurse that is kind and empathetic and a great listener. There’s a woman at support group who invites you for coffee. There’s a neighbor who buys you a bottle of wine when she’s at the store or a co-worker who is more than happy to cover your shift.

Your primary care doctor takes a few extra minutes to talk about how caregiving is impacting your health. Your brother isn’t much help with dad, but his wife brings dinner by a few times a week.

Maybe your loved one goes to bed and you sit alone watching a sitcom and drinking a diet Coke. And you realize life isn’t so bad.

Perhaps your loved one finds something funny and can’t stop laughing. You don’t know what’s funny and you don’t care. You laugh.

You visit the nursing home and see that there are nurses and CNAs who care about your dad and find him to be grateful and cooperative (even though he is neither of those when you are around).

You realize that your wife enjoys coloring books. Or folding napkins. Or watching the Game Show Network. And it keeps her happy and occupied and anxiety-free.

There are moments when you really think you are going to get through this.