mountains enshrouded in fog by jesse orrico via unsplash

What does it feel like to be me?

The first word to come to mind is “full”. Frustrated is a close second. My 91yr. old mother has lived with me for six years. Her dementia has stolen her reasoning, memory, logic and ability to track what I’m saying. Some have told me that “caregiving” is my identity.

I don’t want it to be. I want it to be what I do and not be so encased in who I am.

What does it feel like to be me?

Sad a lot of the time as I get covered in anticipatory grief. The grief ebbs and flows in phases and I’m just now realizing that those phases will pass. I know life will have challenges and struggles but I can choose whether to be miserable or not.

What helps is focusing on the moments of joy I have with my mother today or in a brief moment. Those moments will be kind to me after she’s gone and bring me solace.

What does it feel like to be me?

Tired. Mentally, physically exhausted. I try to make time to do what refreshes and restores me, like gardening and going to church, lunch with friends, a massage, the gym, weekend away with my husband and the kids. It’s difficult when I’m so fatigued but once I push myself to do it, I always feel better.

What does it feel like to be me?

Lonely. Even when I’m not alone. Few people in my life truly understand what the experience of caregiving is. Friends ask how my mom is doing but rarely ask how I’M doing. And there are those times when I, too, get tired of hearing my own voice expressing my frustrations and irritations. Sometimes the loneliness is a loss of connection with myself. I’m an introvert and it is vital that I have time alone to reconnect with myself, my thoughts, to process what’s happened or be distracted from the chaos and unpredictability of it all. Those days to reconnect with myself are far and few between.

What does it feel like to be me?

Grateful. At the most challenging time in my life (caregiving for my mom) I experienced the greatest blessing in my life–I met and married my husband. My mom’s friend will take her for a few days to give me a break and I’m so thankful to her for that. I”m grateful for having good health to be able to continue caring for my mom. I’m still practicing acceptance for this struggle and pray for patience and stamina. This experience has brought me back to a connection with God and I don’t think anyone could be a caregiver without a connection to some higher power.

Thank you,
Kellie

Written by Guest Author
The Caregiver Space accepts contributions from experts for The Caregiver's Toolbox and provides a platform for all caregivers in Caregiver Stories. Please read our author guidelines for more information and use our contact form to submit guest articles.

Related Articles

Elderly and imprisoned

Elderly and imprisoned

"Efforts to reduce the aging prison population are driven not solely by compassion but also by the tremendous cost of incarcerating older people....

Love in the age of sickle cell disease

Love in the age of sickle cell disease

"There are not yet universal standards for genetic testing, but a narrow consensus has emerged around specific conditions. The first prenatal...

Popular categories

Finances
Burnout
After Caregiving
Housing
Relationships
Finding Meaning
Planning
Dying
Finding Support
Work
Grief

Don't see what you're looking for? Search the library

Share your thoughts

35 Comments

  1. Being a caregiver has always been my designation from when I was a young mother to the death of my late husband in 2016. I had my mom for over 30 years, and her sister for 8 years. Then my late husband for 13 years, 4 of which were really difficult. The degree of care has always been the biggest issue and the multi-tasking between family and those family members who need care outside of raising my own children. At my age now, I have people who help me, but they aren’t family. Family is too busy to do what I did. Amazes me how I made the time, lost jobs, and did the next right thing without going crazy. Now, I can do as I want but my body and finances don’t agree. Please, take care of yourself and learn to give what you can without sacrificing your soul. It is hard to be a caregiver despite the viewpoint of other people who are selfish and self centered. I sleep at night knowing I did the right thing! Blessings on all the caregivers.

    Reply
  2. I cared for my mother for 16 years, please believe me when I say I understand how you feel. Look after yourself, because we tend not to do that. Most of all GOD BLESS YOU for doing what you’re doing.

    Reply
  3. Sounds like my life except I don’t get a chance to get away.

    Reply
  4. It fluctuates from one side to the other with no predictable method. Quite frankly, feeling anything about or for myself usually only has to do with health issues. There’s no time or energy for anything else.

    Reply
  5. Please do not forget about the reluctant caregivers in our society. Many had a very difficult relationship with the parent we found ourselves having to be the caregiver for, yet for one reason or another, we got stuck having to be their caregiver anyway. Often, relationships that were difficult before we were put into the caregiving role continue to deteriorate. I thank God for the doctor that finally convinced my mother that she needed to move into a care facility. At that point, she was getting into dementia. She was extremely codependent and wanted me to be in the same room with her every moment she was awake, and the stress was way more than anyone should be expected to endure.

    Reply
  6. I wish my mother was still here for me to care for. She left 43 years ago, would be 91 now.

    Reply
  7. exhausted almost always, and overwhelmed, with details. One detail is taken care of and 4 others come to mind. I crave a 36 hour day so I had time for a bit more sleep and more time to clean and organize.

    Reply
  8. I’m in Anticipatory grief a lot of the time. But that’s okay. I’m tired most of the time. But that’s okay too. For me, it’s important to accept what is my life right now and having less and less of my mother even though she is physically still here. Yes, it’s difficult. Because I love her so much. I’d rather live my life from a place of love then resentment.

    Reply
  9. Well said. I also am a caregiver for my 91 year old. So much of what you said resonates with me. Blessings and prayers…

    Reply
  10. Empty, nothingness!! Now trying to live without my Mommy, this is the most difficult, frightening journey in life. 20 plus years with my Mommy, and now there is just grief!!!

    Reply
    • I’m sorry for your loss. Grief is powerful. Hopefully you will find ways to adapt and integrate a new,albeit painful, reality.

      Reply
  11. How beautiful!! Hit it right on the nail! Thank you for this great blog!

    Reply
  12. Emotionally and physically exhausted all the time. Sad that I had to give up on my dreams in order to stay behind to care for my parents. Very lonely too

    Reply
  13. Tired both physically and emotionally…. So ready to move on to the next chapter of my life…

    Reply
  14. So many feelings. Proud to be able to allow my life to be nothing but a 24/7 caregiver to my husband and to be available to help my Dad. I get weary and it is emotionally exhausting and physically challenging however I find that prayer and going outside in times of fear, bring me a great deal of peace.

    Reply
    • I’m right there to i have the same feelings. I take care of my husband and work in a nursing home and it gets to be to much sometimes. But I’m thankful for my pastor Howard Avery and my church family. Thanks Dawn M Giordano-Avery love ya

      Reply
  15. i have no idea anymore….. none whatsoever

    Reply
  16. While I am a caregiver, I am not me. The real me is on hold, indefinitely…but not forever.

    Reply
  17. I’m a caregiver to my 91 year old mom for six years. I’m her daughter, but that too is changing. It is not all that I am. I have not let it “consume me” or “define me” or “make me small” or incapable of creating a life separate from that. That’s not what my mom would want and I refuse to resent her because I Choose to Not have a life of my own. That wouldn’t be healthy for either of us. I’m no victim. There are choices out there.

    Reply
  18. My job is the only part of my life I have an identity. After a decade there is no me

    Reply
  19. I can see how taking care of someone makes others think that is all you are is a caregiver. It can consume you when another’s welfare is your only reality for a while.

    Reply
  20. I am the same..just no mom friend taking her for a few days. I have one person that spends tuesday days with her, and she just broke her wrist yet still has had her husband bring her for a few hours. She is my angel.

    Reply
  21. I think we all kind of “see saw” back and forth in our identities

    Trading Spaces

    If you could be me
    And I could be you
    And we traded places
    For a week or two

    Then your perspective
    And my point of view
    May change in ways
    Maybe many
    Maybe few

    We’d realize
    Where our journey takes us
    It’s The Who what where why how
    That makes us

    Since you are you
    And I am me
    We can only imagine
    What that change might be

    No matter where we go
    Or who we see
    You’ll always be you
    And
    I’ll always be me

    Theresa Loder

    Written for the ” Embracing our Differences” exhibit in Sarasota , Florida at Island Park

    Reply
  22. In a sense, this is true. We completely lose ourselves while caregiving for another.

    Reply

Share your thoughts and experiences

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Join our communities

Whenever you want to talk, there’s always someone up in one of our Facebook communities.

These private Facebook groups are a space for support and encouragement — or getting it off your chest.

Join our newsletter

Thoughts on care work from Cori, our director, that hit your inbox each Monday morning (more-or-less).

There are no grand solutions, but there are countless little ways to make our lives better.

Share your insights

Caregivers have wisdom and experience to share. Researchers, product developers, and members of the media are eager to understand the nature of care work and make a difference.

We have a group specifically to connect you so we can bring about change.