My Role Is Changing

Stage 5: The Transitioning Caregiver

My role is changing.

Who are you?
You’ve been caring for a period of time and now can sense the end.

Your Keyword: Allow
–Allow time to mourn and grieve;
–Allow remembrances to remain;
–Allow reflections of your experiences.

Your Challenge
To let go of the fear of the end, to understand that reaching the end isn’t about your failure but about the natural cycle of life. Now, you’ll move from the “doing” of caregiving to focus on the “being.” You’re used to doing and going; it’s time to put the priority on being with your caree.

Your Purpose
To walk with your caree during his last months and weeks, implementing his or her decisions about end-of-life care that you both discussed during Stage I (or as soon as you could). As you both feel the journey end, this is also a time to mourn and grief. And, this stage is about loving and feeling good about the shared journey. You also will begin to question and worry about your life’s next chapter.

As a “transitioning caregiver,” what can you do?
1. Use your best judgment as to when you take breaks.

You now have a limited amount of time to spend with your caree. Trust your gut and spend as much time as feels right for you. When others encourage you to take a break and you know it’s not the right time, let them know: “Time with my caree is my priority. I appreciate your concern. I’m okay.”

2. Know that being with your careee is how you do for your caree.
You’ve done so much for your caree. Because of all you did, your caree has seemingly lived nine lives. You’ll be tempted to continue doing at the same pace. You’ll continue doing, especially ensuring your caree receives the best quality care, but at a different pace. In this stage, being is as important as doing. Know that being, like simply sitting and holding hands, also can be the best way to do for your caree. You’ve both earned this time to be just where you are in the journey.

3. Consider hospice before you think it’s time.
If you contact hospice too soon, you’ve just bought yourself some time. If you contact hospice too late, then you’ve missed out on support and comfort for your caree, your family and yourself. As soon as you begin to wonder about hospice, make a phone call to a hospice organization to learn about the right time for its services. Hospice provides services regardless of where your caree lives—your home, her home or the nursing home.

4. When your caree speaks of death, continue the conversation.
Your caree may want to talk about death. You may be tempted to stop the conversations, believing a discussion about death is like giving up. When your caree brings up death, be open to listening and talking. Ask questions (“What do you think about dying?” and “What do you fear about death?”) and share your own thoughts (“I’m going to miss you ”). As difficult as these discussions may be now, you will find comfort in them later.

5. The release of fear, the ability to “be”, can add a spiritual component to your tasks.
Your caregiving tasks may take on greater importance to you, as you see yourself caring for your caree who now exists in a holding pattern between life and death. You may see these duties—the personal care, the feeding, the bathing—as readying your caree for the final journey. You can look at your hands as doing God’s work here on earth. You will see the sacredness in your days.

6. Let others in.
Those family members and friends who disappeared may now reappear, anxious to visit your caree. The temptation may be to make these visits difficult for those family members and friends, believing they haven’t earned the right to be involved now. Let go of that temptation and let the visits happen. Be at peace because you have no regrets. When you avoid judging, you keep your inner peace.

7. Allow yourself time to mourn and grieve.
You are experiencing tremendous losses. You’ll feel it.

8. Remember your caree.
You don’t have to give away clothes or remove pictures–until you want to. When family and friends seem hesitant to talk about your caree (they worry they will upset you), assure them that sharing memories, laughs and stories brings you great comfort.

9. Reflect back on your caregiving responsibilities and decisions with pride.
Find comfort in knowing that you did the best you could.

10. Review your journal.
How are you different today than you were on the day you first started writing in your journal? How will you use this experience to enhance your future relationships?

11. Be curious about what’s next for you.
You may feel disconnected to who you were and unsure of who you are. Rather than rush into decisions, simply be curious about what’s possible. Accept that you will have moments of discomfort and confusion. You will find your way.

12. An apple a day…
What’s your apple in this stage? You may feel that an apple in this stage is unnecessary. Take an apple. It’s what keeps you feeling like you.

13. After Giving
Please join us at to share and connect with other former family caregivers adjusting to a life after caregiving.

~ Stage 1: The Expectant Caregiver ~ Video: Ask, Stage 1

~ Stage 2: The Freshman Caregiver ~ Video: Find, Stage 2

~ Stage 3: The Entrenched Caregiver ~ Video: Receive, Stage 3

~ Stage 4: The Pragmatic Caregiver ~ Video: Welcome, Stage 4

~ Stage 5: The Transitioning Caregiver ~ Video: Allow, Stage 5

~ Stage 6: The Godspeed Caregiver ~ Video: Treasure, Stage 6

~ Resources

Note: I have provided The Caregiving Years to be used strictly as a guide. All situations vary. I encourage you to always consult your health care professionals to discuss your individual situation and the best course of action for you and your caree.

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2 Comments on "My Role Is Changing"

Mar 13, 2013

Amazing article. And, exactly what I was feeling.