Nine Stages of Caregiving

Gail Sheehy wrote an article for AARP.org outlining the stages of caregiving. She calls it The Labyrinth of Caregiving. It reminds me of the 5 stages of grief because it is a process that ebbs and flows.

It has been FOUR years and FIVE months since I have been a solo, long-distance caregiver. I continue to evolve in my role emotionally and spiritually.

Here are Sheehy's stages:

1. Shock & Mobilization
Your entrance to the labyrinth of caregiving starts with shock and mobilization. You get a call that your mom's fallen, your dad's had an accident, your spouse has a frightening diagnosis. Who to call? Where to start? It's a rollercoaster—you may be up and down for weeks or even months.

2. The New Normal
You realize, perhaps for the first time, you have a new role—family caregiver. This isn't a sprint. It's going to be a marathon. You are living with a new uncertainty and you're not going back to the old normal.

3. Boomerang
Everything has settled down into a new normal routine. It's been months, maybe a year or more. You're handling it, thinking "OK, I can do this," when BOOMERANG! A new crisis erupts. You need to call a family meeting. Who else can help? You need to start thinking about how to take care of the caregiver—that's you!

4. Playing God
You've become very good at caregiving by now. You're the only one your loved one trusts. You believe you're the only one who truly understands what he or she needs. You're seen as heroic. You're playing God. But you know what? We ain't God. We can't control disease or aging. And if we keep trying we'll be overcome by stress and fatigue and come to a dead end.

5. I Can't Do This Anymore!
You were convinced you could do it differently. But a few years into it you break down in tears and total fatigue. You've given up so much. You absolutely must come up for air or you'll go down in despair. Call for help! Start taking at least one hour every day to do something that will give you pleasure and refreshment. Your loved one also needs some time with other people who offer stimulation of a different kind.

6. Circle of Care
You need to create a circle of people who will assume some responsibility for
aspects of care. Let members of your family and friends who have not been involved know that you have reached the end of your rope. They may assume you're handling it all. Even long distance, they can definitely be helpful. And don't be shy about asking for assistance from neighbors, coworkers, your community. A professional care manager can save your life.

7. Coming Back
At the seventh turning, you begin coming back. It is clear now that your loved one is not going to get well and will become more and more needy and dependent. You are approaching the center of the labyrinth. This is where you must begin the process of separation. It is a slow and painful process, but the other way is to lose your self and go down with the person you're caring for. That would be a double tragedy.

There is life after caregiving. What were your lifelines before caregiving? You must have some transports to joy? Pick them up again. They will lead you out of the labyrinth.

8. The Long Goodbye
This is the last turning. Inevitably, there will be times that you will likely feel: Why can't you die? Enough already. Then, of course, you'll feel guilty for thinking such a thing. But it is entirely human and predictable.

No one can answer your most burning question. How long? It's important at this turning to have end-of-life conversations. Encourage your loved one to talk about fears and wishes and goals. What kind of activities give him or her pleasure? And what kind of medical interventions does he want—or want stopped? Hard as it may be, follow your loved one's wishes. This is his or her death, not yours. You are on a different journey.

9. Afterlife of the Caregiver
And then, suddenly, it's over. Your loved one has passed on. You have completed the labyrinth of caregiving. Now what? Maybe you've forgotten who you were before. You've been consumed for so long by caring for someone you love. You have given of yourself and done a beautiful thing. After the first months of mourning, grief will come out of nowhere when you least expect it. Don't sit around and wait for depression to set in. Pick up your passion—whatever you do where time passes and you don't even notice—and follow it. It will lead you on a new path. Look at it as an adventure! And God bless you.