Feeling Grief and Loss While You're a Caregiver

Medically Reviewed by Jennifer Casarella, MD on September 03, 2022
Written by Elizabeth M. Ward, RD, MS
3 min read

Even though the loved one you've been caring for is still alive, you may have already started feeling the weight and pain of their loss.

While some people might think of this as a type of depression, it's really a distinct form of grieving. And it's also a natural, expected response to caring for someone with a long-term or incurable illness.

This kind of grief can hurt as much as what you feel when a loved one dies. Sometimes, it may make the loss after death easier, but not always.

It's real. You can't ignore it and hope to just power through. So allow yourself to process the grief and appreciate the time you have left.

Unlike the grief and mourning that happen after someone has passed away, this "anticipatory grief" begins before the person has died. But the emotions can be similar.

When someone has a disease, injury, or condition that permanently changes their personality, like Alzheimer's, the grief may come as it sinks in that your loved one, as you knew them, will be "gone" even before they're gone.

You might have anxiety, dread, or sadness as you wait for their passing.

You could also feel a sense of loss and longing for your independence and freedom as your own life changes, because much of your time and energy is now going to someone who needs you. And that can also lead to guilt.

Anger, bitterness, even resentment are common feelings, too, as you're forced to come to terms with the fact that you can't change the outcome.

It's important to remember that all of these feelings are normal in such a difficult situation. And often, primary caregivers -- those whose take on the daily responsibility for someone's well-being  -- feel a piece of this loss each day, more deeply and in a way that others in their lives probably don't.

Whether it's with a support group, a counselor, a good friend, or within the privacy of a journal, sharing what you're going through can ease those moments when you're sad, powerless, and tired. Your loved one may be dealing with their own grief, and you might find comfort together.

It's OK to cry or admit that you're angry or frustrated. These are helpful ways to keep pent up emotions from turning into resentment toward the person you care for or from taking a toll on your health.

You can't avoid what will happen, but you can have a say in how it happens.

Learning about your loved one's condition is one way to do something, to have a sense of taking action that puts you in the game rather than merely watching from the sidelines. Get a better idea of the symptoms, treatment options, and possible side effects so you can prepare for and even get ahead of what may be coming.

You could even help your loved one put their affairs in order or plan their funeral service.

Spend time together. It may be something as simple as an afternoon in the park or playing a board game. These activities will strengthen the bond you have, and they'll be something to hold on to after your loved one is gone.

Share memories of past good times, too. If you feel up to it, go through photo albums together or watch home movies.

Your days are probably much different than before you took on the job of caregiver, so you'll need to find ways to stay grounded and connected to the life you've built.

Keep your lunch dates. Run errands as you can. Take that pottery class. Go to the gym.

When you're feeling overwhelmed, reach out to friends and family members and ask for their help -- whether it's to pick up groceries, to call the doctor's office and make an appointment, or to just come sit with you and give you a hug, no conversation required.

However you choose to do it, making time for yourself isn't indulgent or selfish. It's a critical part of making you a better caregiver. And it can empower you to handle the challenges ahead.