My Role Is Changing


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 now to make being with your caree the priority.

During caregiving, you've been in a battle. Most recently, you've been fighting death hoping to keep death's visit to your caree at bay.

You can end the fight because you've won the battle. You've done enough and are enough. You've long worried that a caree's death could somehow be your fault. You can now know that you've given your caree a life for as long as your caree's life could continue. You no longer have to try everything and do whatever is possible. You understand that over-doing now could create more discomfort and pain for your caree. When you end your internal battle, you can be fully present with your caree. Your peaceful presence is your power.

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). You can focus on loving and feeling good about the shared journey. As you both feel the journey end, this is also a time to mourn and grief. 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 with a different purpose. 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.

Our Peace and Comfort at End-of-Life Assessment with a Certified Caregiving Consultant can help you create an environment that will bring you, your caree and your family great comfort. Check The Caregiving Years Tools for details.

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 like “What do you think about dying?” and “What do you fear about death?” Share your own feelings including ones like “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. Ask the hospice staff for help managing the visits if you worry that the dysfunction may become a distraction. Be at peace, like Andy, because you have no regrets. When you avoid judging, you keep your inner peace.

7. Take a break. Or don't. You decide.
When time becomes limited with your caree, you may spend more and more time with your caree which may prompt others to encourage you to take a break. That suggestion may be a helpful reminder or a horrible idea. You choose when and if the time is right for the break.

8. Hold hands.
If you feel helpless, hold your caree's hand. When others worry about feeling powerless, hold their hand. You're doing something quite amazing when you sit and hold hands.

9. Allow yourself time to mourn and grief.
Your local hospice agency can be instrumental in helping you understand and deal with your grief. You may find that your period of mourning lasts a long time, maybe your lifetime. That's normal as long as, at some point, you're able to move on with your life. It's not normal if you feel paralyzed. A professional counselor may be able to help you transition into a new chapter of your life.

10. Create Your Replacement Therapy.
After caregiving ends, you're left with too much time and feel like you have too little to do. Donna Webb, who cared for her mom and blogged on, created the idea of Replacement Therapy, replacing the time spent on a caregiving task with another task.
You can do that, too. Here's how:

  • Write down the caregiving schedule, including times and tasks.

  • Once you have your list, write what you enjoyed about each task.

  • Use this list of enjoyments to begin to recreate your day. Replace the caregiving activity with an activity that creates a similar experience or emotion or enjoyment for you. Maybe during the time when you fed your caree, you now bake or document your caree’s favorite recipes. Perhaps during the time when you provided personal care, you now create with your hands.

  • Consider building in some quiet time. During the quiet time, consider how you will use free time when you have it. How will you bring your caregiving knowledge to the community? Who will you be and what will you do in your future? What would your caree wish for you during this next stage of life?

  • Finally, this transitioning will be bumpy. Feel the bumps and take time to readjust. The bumps can be a great guide.

11. 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 because they worry they will upset you, assure them that sharing memories and stories brings you comfort.

12. Reflect back on your caregiving responsibilities and decisions with pride.
Find comfort in knowing that you did the best you could. When your thoughts try to trick you into believing you could have done more, reframe those thoughts into knowing you did all you could with the information, resources, support and energy you had. Your caree knows this, too, and sends you messages of deep gratitude.

13. 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.

14. Be patient with your transition.
You are in the midst of significant changes and others may want you to be “back to normal.” After all you've been through, a transition is what's normal. Unfortunately, a transition often feels like a difficult good-bye combined with an awkward hello to uncertainty. You aren't who you were before caregiving and you're still connecting to who you are after caregiving. The unknown can be intimidating and scary. Be patient. You will be rewarded with answers.

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

16. Learn about your transition to your next chapter.
Connect with other former family caregivers adjusting to a life after caregiving. Read our After Caregiving Ends blogs and join our After Caregiving Ends group. My book, After Caregiving Ends, a Guide to Beginning Again, can be helpful as well as our six-week course, Beginning Again After Caregiving Ends.

17. 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.

~ 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

~ Our The Caregiving Years Tools, released with our eighth edition of The Caregiving Years handbook, help you find the answers and solutions right for you. Purchase The Caregiving Years PDF version to complement the tools. You also can purchase the paperback on Amazon by clicking below.

~ Your Tip Sheet: The Caregiving Years, Six Stages

~ Your Tip Sheet: The Caregiving Years, Your Steadies to Continue through The Caregiving Years

~ Resources

~ Read LivHOME's blog post about The Caregiving Years

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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Thank you so much for the articles, Denise. This one brought me to tears... it's where I'm at right now.


Thank you, Lori. I'm so glad this read \"real\" to you.