Care for the Caregiver: After the Loss

A common experience for caregivers after a loss is a feeling of purposelessness.

After having one’s schedule tightly wrapped around the needs of an ailing partner, parent, child, friend, or patient, their death can leave one not only heartbroken but also searching for how to fill the days once again.

The background worry does not need to be there anymore. The routine of administering medications has vanished. The limitations of travel, vacation, and socializing with others have been lifted. Grocery shopping is a reminder of what favorite foods not to bring home. And one’s thoughts, feelings, and actions are directed at the wide and lonely expanse of an unexpected future, with no apparent road map or even the motivation to move forward.

Adding to the sense of emptiness, outside supports oftentimes disappear, too. If one was caring for someone terminally ill, the presence of hospice might have been part of the schedule, providing comfort and companionship; however, after the death, hospice leaves and the caregiver remains. Likewise, family, friends, and neighbors who had been visiting regularly may suddenly or slowly evaporate after a time, or also after the death, making the home seem more silent than it ever was in the past.

It is hard to imagine what it will be like without the mission of caring for someone. It is nearly impossible to conceive of what it will be like to live without making sure that someone is still there and still comfortable.

Amidst the rioting emotions of grief or the numbing shock of coming to the edge of the world and peering into nothing is the invitation to look back. Dwelling on the past keeps one stuck in the past, but searching the past for a forgotten experience or lesson can unlock our present and future.

Questions and thoughts to consider, in no particular order:
•    What did I do with my time before I provided care?
•    I was not always a caregiver; I was also (fill in the blank with past roles, jobs, etc.)
•    I’ve always dreamed of (fill in the blank with an activity, destination, goal, etc.)
•    What were my hobbies before I became a caregiver?
•    What and who have I ignored while providing care that I can attend to now?

Most of us thrive on having some sort of structure in our lives, whether that is from being caregivers or from the jobs that we do or the roles that we play in our families and communities. The structures can be dictated by us, or given to us by affection, obligation, or authority.

After a death, it is natural to feel as if what held our lives together has fallen apart, as if the universe suddenly stopped making sense and the unspoken meaning that glued our lives together has ceased to hold us together. Why wait in the grocery line? What’s the point of getting out of bed? Why does anything matter, when what mattered to us has been taken away? All structure seems to be rubble at our feet.

It is important for those who feel a lack of purpose to acknowledge this loss of structure. It does not matter what someone else feels or thinks about their grief or yours, or if they seem to pick up and resume a “normal” life. We are each laid low by different blows we receive in life, and comparison is rarely useful in mourning. We pick ourselves up as we can, and as we need to.

Recreating structure can be challenging, but it can be accomplished. Returning to old structures we had left behind can offer us guidance in the days to come, if not a welcome distraction to the new and unknown path ahead. If one looks to the past for memories, experiences, and what provided a sense of purpose before providing care, this search can help create a new structure, new routine, or “new normal” to live by.

Related articles:
Light at the End
Creating Rituals to Move Through Grief
Psychotherapy and the “Middle Way”

© Copyright 2012 All rights reserved. Permission to publish granted by Ivan Chan, MA, MFT intern Grief, Loss & Bereavement Topic Expert Contributor

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

  • Leave a Comment
  • Janice Sargent

    May 2nd, 2012 at 11:31 AM

    I sure did feel like this after my own mother died.
    It felt selfish, but I really did experience not only the loss of my mother but kind of this feeling of the loss of myself if that makes any sense.
    For so long I was wrapped up in being the one who took care of her, that is how I came to identify myself.
    Who was I when I could not have this label anymore, and why did I need any kind of stupid identifying label anyway?
    The only way that I was able to finally let that go and move on was to find myself some things to do that were actually good for me and fun for me.
    I started going to exercise classes, meeting new people and even got involved in a book club. Those were things that I never made time for or had time for before.
    Now I just identify myself as me, a good friend and hopefully a good person to be around. It is about me, and who I am, and not necessarily what I am in relation to someone else.

  • Jonathan

    May 2nd, 2012 at 2:58 PM

    We often forget about the caregiver who gives up a good part of their lives to take care of another. it is very understandable that they feel the grief over the loss of many things all at one time.

  • Polly

    May 3rd, 2012 at 4:24 AM

    oh Janice, I am so glad that you have been fortunate enough to now have found some things to make you happy.

  • emerson

    May 3rd, 2012 at 1:12 PM

    It must be terrible to care fir someone so deeply and the to lose them from your life. That is a lot of time that you have been devoted to another person and I can only imagine that the sense of loss that you must feel would be like a huge void. But it is easier to tell these people who have been in this role to take care of themselves than it is to make it a reality. Many have probably spent so much time taking care of someone else that they don’t know how to do it for them selves anymore. That is when their family really has to step in and make sure that they do the things that they need to do to heal their hearts too.

  • Ivan Chan

    May 7th, 2012 at 11:35 PM

    Hi all,

    Thanks for reading my article!

    Janice: I’m so glad this spoke to your experience, and that you have come into your own.

    Jonathan: Exactly!

    Polly: Thanks for your supportive comment! :)

    Emerson: It is great when family and friends can help a caregiver who has finished caring for someone to care for him- or her-self, too. Gentle encouragement can go a long way, and bringing out someone’s dreams can help them explore themselves, their hopes, and their possible futures. Not everybody has family and friends, though, and sometimes caregivers can find themselves alone. It’s important at that time for these solitary people to know that they have the resources within themselves to live their own lives, and that they can navigate it as they had before they became caregivers. (Sometimes finding a grief counselor and/or therapist can be helpful!)

  • richard

    December 29th, 2015 at 4:58 PM

    This article describes perfectly the situation I am facing right now, what I feel, what I fear. Alone, I cared for my remaining parent for the last 7 years. She died a few days before Christmas. My world is destroyed. I am lost. Thank you Ivan for your words.

  • Michael

    September 21st, 2018 at 7:57 PM

    Richard…My mom lived with me these past 20 years and needed my constant care for the past 4 years. She passed here at home as her body just wore out. She died less than a month ago and all I do is cry and feel exactly as the article above describes. I am standing over a dark abyss with nowhere to go and no direction…just this horrible empty pain eating my stomach away.

  • Michael

    September 21st, 2018 at 7:59 PM

    Richard…how are you doing now that time has passed?

  • Linda

    October 12th, 2016 at 6:04 PM

    I can relate to this article. After 26 years as a caregiver to two people I barely know who I am anymore. How I spent my time at 28 is very different than 55. And now I’ve had six losses in the last seven years. Motivation is a big problem as well as feeling that doing anything in life isn’t worth it. My job still keeps me motivated enough during the day ar least. The weekends are really tough. Friends at work never think to call on the weekend.

  • Michael

    September 21st, 2018 at 8:01 PM

    Linda…how are you progressing now? God bless you!

  • Linda

    September 29th, 2018 at 6:44 AM

    Hi Michael, Thank you for asking. I forgot that I posted on this site and it looks like it was two days after my mother’s birthday that I posted. I am doing pretty well, but that also depends on the time of year. In weeks coming up to my husband’s death (July) and my mother’s death (June), I usually get struck by the grief monster and end up back down the deep dark rabbit hole. The rest of the year, I am slowly finding more things to do that interest me and it’s not so bad. Everything changed after a close friend and co-worker, earlier this year was fired from her job. After she left I realized that I was depending way too much on her for support, which sometimes wasn’t the kind of support I needed. I realized that I needed to find my own way through this and that I needed to give myself more credit for getting this far in the first place. Not a day goes by when I don’t have some through of them and how they are missing or have missed out on certain things in life because of their circumstances. It is the hardest thing to watch someone who has had a difficult life comtinue to suffer from further tragedies. I really never come to grips with that and the unfairness of it. I loved my mother and my husband dearly and I will always miss them. To anyone who is new to this, please hang in there. The pain does lessen with time and everything gets reframed constantly over time. We can’t change it. We can only move forward and hope that we are living the lives that they would be proud of.

  • Michael

    October 6th, 2018 at 8:37 PM

    Linda….Thank you for your words. Thankfully you have “some” good days. You have experienced some terrible losses. By choice, I invited my mom to live with me a little over 20 years ago. She was 76 at the time and in great health. I was 43 then. I wanted to repay her for all the wonderful things that she did for our family and me. Just three years ago she had some health issues but just recently in early August 2018 her 97 years caught up with her and she has been gone now less than 2 months. That article above about the caregiver describes me perfectly. I am so empty, alone, and have this constant discomfort in my stomach which is this sad longing for someone you can’t have. I am certain that you know exactly what I mean. I have lost my mom and closest confidant. I am keeping busy during the day pushing myself to do things but then I return home to this emptiness and my thoughts. I do have a weekend job. My mom and I told one another every day how much we loved each other so I have that to help carry me forward.. I was her caregiver and happily did everything for her. Reading your story gives me some hope for a better day. I lost one person. You lost more. Then these Christmas decorations in the store now which was her favorite time of year. I go out and look in stores at things but it’s no fun anymore. I am not feeling sorry for myself but God does it hurt.

  • Michael

    October 6th, 2018 at 9:03 PM

    Linda…continuing on. ..right now my loss is almost unbearable. I know it’s all about structure and finding interests but right now i have challenges getting to that point. I don’t think I would benefit from counseling. I have to reconcile it on my own.

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