In Grief: After Caregiving Ends, Who Am I?

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[Reviewed and Updated December 19, 2024]

Alongside the hole left by losing a loved one, a caregiver may be surprised to feel a different kind of loss: a foundering sense of purpose. It makes sense -- caregiving can be so consuming and can require such hard-won expertise that it can be difficult to regain a footing in "normal life" afterward. ~ Paula Spencer Scott

A reader writes: My mother died 2 weeks ago. I had been her caregiver for 21 years. I don't know what to do or how to live. Everything I did was based on what was best for Mom. In the last couple of years, as Mom began to weaken, I became so depressed. I would care for Mom but neglected housework and yard work. I was always too tired. Now, I can do whatever I want, whenever I want....but I don't know where to begin . . . all of this stuff just makes me so tired. I just want to sleep or watch TV. Is this normal grieving? How do I shake myself out of this non-productive funk?

My response: My dear, I can assure you that what you are feeling is normal. You're reacting to the fact that you’ve lost not only your dear mother, but your job as well. Caring for your mother all those years defined who you are, and now that part of your identity is gone. That is a significant loss that generates grief piled on top of grief, and it can cause you to question your very purpose in life. Who are you now, and where can you go from here?

I’ve gathered some resources that I hope you will find helpful as you find your way through this challenging time, and I hope you will take advantage of them:

After Caregiving Ends, by Judy Tatelbaum, MSW - The first step after any kind of loss is always to allow and accept our feelings. We must acknowledge this shift in our lives and the feelings it may provoke. It is possible that we’ll feel relief that we don’t have to work so hard any longer, and then feel a sense of guilt for feeling such relief. We may be angry with ourselves or someone else for letting us down. All of these are natural reactions. It is important to express our sadness, anger, loneliness, regret, and whatever else we may feel. Read on here.

When Caregiving Ends, by Donna Schempp, LCSW - Caregiving can last for many years. Caregivers set their own lives aside to care for someone else. When that person dies, caregivers have to figure out what to do with their lives now. There is no preparation for this transition. Generally you are so busy caregiving, and life changed so long ago, that there has not been time nor energy or even the psychological will to think about what comes next. Here are some tips that might help you during this time . . . Read on here.

Feeling Relief (and Guilt) at Caregiving’s End, by Barry J. Jacobs - It is difficult to resolve the conflicting emotions at caregiving's end. But here are some ideas for alleviating the guilt they often cause . . . Read on here.

Grief and Relief: When the Loved One You Cared for Dies, by Carol Bradley Bursack - Many of us start our caregiving career by assisting an elder in his or her home, or we have a spouse who declines and we become the default caregiver in our own home. This care expands to a point where we need some type of respite, often in the form of in-home care agency help. Eventually, the move to assisted living or even a nursing home may become necessary for everyone's health and wellbeing. Whatever happens, we remain caregivers. Many of us continue to see our care receiver daily. Most of us continue to be involved as advocates and support throughout the time of need. When our loving attention and care is no longer needed, we can, indeed, feel lost. Read on here.

After Caregiving Ends: A Guide to Beginning Again After Caregiving Ends, by Denise M. Brown – The end of a caregiving experience leaves you a new person, yet without the time and perspective to adjust to that newness. It also brings up a conundrum—how do you move forward as this new person when you're missing the one who just died? "After Caregiving Ends, A Guide to Beginning Again" accompanies you as you cope with two losses—the loss of your caregiving role and the loss of your family member or friend. Read more here.

Caregiver Stories – From CareGiving.com, a number of articles written by caregivers themselves, sharing how they coped in the aftermath. 

I’ve Lost My Sense of Purpose: Caregiver Confessions, YouTube - In this brief “Caregiver Confession” video below, Leeza Gibbons acknowledges the same sense of loss that you are experiencing now, and offers some practical advice for regaining purpose after caregiving:

As Leeza observes, there are many other caregivers “out there” who are facing some of the very same challenges you have learned to overcome, and they certainly could profit from whatever advice you’d be willing to share, once you feel ready, able and willing to do so.

I hope you will consider how you might re-connect with others. You might think of hobbies or other interests you once enjoyed that you’ve had to postpone for so long. When you have the energy, check out some of the resources in your community that are available to you now that you have the time to investigate them (e.g., your public library; book clubs; adult learning classes; exercise, workout and fitness centers).

At the very least, I hope you will recognize and give yourself the credit you deserve, not only for the priceless gifts you gave to your mother through caring for her, but also how much you have learned in your role as a caregiver. You may not realize it now, but as a caregiver for more than two decades, you’ve gained the sort of expertise and wisdom that comes only from practical experience, and that is a valuable commodity. At some point ~ and only if and when you are ready ~ you might consider offering your skills, either as a volunteer (see, for example, Healing Grief through the Gift of Volunteering) or by pursuing further education and training for a professional career in nursing, social work, geriatric care or elder companionship.

Your feedback is welcome! Please feel free to leave a comment or a question, or share a tip, a related article or a resource of your own in the Comments section below. If you’d like Grief Healing Blog updates delivered right to your inbox, you’re cordially invited to subscribe to our weekly Grief Healing Newsletter. Sign up here. 

Related:

• 6 Things Caregivers Should Know About Their Grief
• Caregiver Remorse: 3 Ways to Find Peace
• Dementia Death: Conflicting Emotions Are Normal for Caregivers After A Loved One Dies
• Eighteen Caregiver Skills I Can Use on Me!
• Get Comfortable In Your Own Skin
• Grief and Role Confusion: Who Am I Now?
• In Grief: How Long Will This Pain Go On?
• Is There Life After Caregiving and Losing One's Spouse?: A Book of Comfort, Solace, Insights, and Showing the Way Back
• Liberating Losses: When Death Brings Relief
• Moving On With Life Once Caregiving Is Over
• Rebuilding Your Life After Caregiving
• The Guilt of Relief
• Transition After Loss: Tips for Navigating The Neutral Zone
• Was I A Bad Wife to My Terminally Ill Husband?
• When Caregiving Ends and Grieving Begins
• When Caregiving Ends: Planning for The Future

© by Marty Tousley, RN, MS, FT