two people who don't understand each other


This post was written in response to the video above, in which Michael Bloom and Adrienne Gruberg discuss the unique struggle of caregiving.

Our family and friends don’t get it.

It’s no fault of their own– the demands of caregiving are almost impossible for them to understand because they haven’t lived with it.

Even if we don’t feel comfortable talking to our friends and family, we cannot keep our the feelings inside. These thoughts and emotions are distinctive to caregiving. Fortunately, caregivers are uniquely qualified to help one another— we understand the complicated emotions and overwhelming responsibilities because we’ve been there.

Another caregiver understands

why I can’t just “self-care” by taking a bathwhen would I find the time?

… that my mom doesn’t want me to hire help

… how much I can resent caring for my sister, even though I love her

… what I’ve given up to show up for caregiving

… what “constant care” looks like

… that five consecutive hours of sleep is a miracle

secondary-PTSD from caregiving

… that having four arms still wouldn’t be enough

… the resentment, frustration, love, loneliness, anxiety, guilt, and fear

… how hard it is to get a job after being a caregiver for so many years

the pain of watching a loved one suffer

what it feels like to no longer be asked “How are you?

… that going to the grocery store is like a mini-vacation

… what “running on empty” really means

… how much you feel depended upon

how frustrating it can be to have siblings visit

… the education we get from caring

… our capacity to give and love

So thank goodness I know just where to find the people who will understand.

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Written by Alexandra Axel
Alexandra Axel was the first founding staff member at The Caregiver Space. As a New York native, Allie grew up people-watching and story-collecting, eventually pursuing her undergraduate degree from The College of New Jersey in sociology and creative writing. At The Caregiver Space, she worked with social media, graphic design, blogging, and program development to brand and grow an online community composed of, and focused on, caregivers. From the seedlings of an idea to the thriving community that it is today, Allie was there from the beginning to support the evolution of The Caregiver Space. Allie enjoys writing poetry and short fiction, devouring books, biking, crafting, urban agriculture and imperfectly cooking. She currently resides in Brooklyn with her pup, Hen.

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28 Comments

  1. You are doing a great job caring for your mom. There will be other jobs but you only have one mom. The fact that you put her first says a lot about her and how good of a mom she must have been to you all these years.

    Reply
  2. This article is exactly how I feel every day. I haven’t worked in 10 years..I have been offered a good paying, stable job with endless overtime, at the same place twice since January of this year. I’ve turned it down both times. First because there will be nobody to take care of my Mom and second because of the guilt I will feel for abandoning her.

    Reply
  3. No judgment – we all do what we can -and seek help for when we can’t.

    Reply
  4. That’s the truth. But they could understand better if they stayed involved !

    Reply
  5. I’m a home health aide and single mom of three. I love all parts of caregiving. At night it’s the hardest

    Reply
  6. So much truth. I really would not be surprised if I end up with PTSD. I quit my job to take care of my father in law and 11 yrs ago and now my mom who has dementia and cancer. I also had a roommate that needed help for a while and was given the name nurse Nanci. First it was cute, now I cringe. I have found who my true friends are.

    Reply
  7. Pretty sad, and when they do figure it out they disappear.

    Reply
  8. All true. Takin care of one person (my MiL) is still frustrating at times, but seems easy when I look back at my FB memories from 3-7 years ago. That’s when I had to quit my job to care for my disabled husband. Then the next year moving in with his mom so I could take care of both. Then the next year my 95 yo mom, who lived by herself, broke her leg and was diagnosed with CHF. Taking care of 3 in 2 separate houses…well, you can imagine. Husband died 2 years ago 8/10/15. My then 97 yo mom moved in with my MiL and I. She died 6 1/2 months later. Whew!

    Reply
  9. A list nobody wants to understand

    Reply
  10. Found out this is a true statement when I brought my father home 2.5 years ago.

    Reply
  11. This so hits home, I have experienced every one of these feelings & emotions, that said now that I’m a retired care giver & only over seeing my daughters care I would do the 24/7 all over again for another 6 years. My daughter is alive & doing well after adjusting to becoming a quadriplegic. She’s rarely had pity parties & is my hero!

    Reply
  12. Also there are folks who have to work or sole caregivers that just can’t do it alone and may need placement . I’m one of them. At some point I just can’t do it alone and should never be judged

    Reply
  13. True statement but so many of us are secluded

    Reply
  14. I am finding this to be a true statement.

    Reply
  15. Caregivers understand that’s for sure. You are heroes beyond measure. Know that so many of us view the duties you perform as the most important job ever performed. Thank you for doing what you do.

    Reply
  16. This site has been my only place to escape. I read all the stories about all the situations, not only the ones like my own. Makes me feel not so alone, which in turns makes me stronger. I’m 35 my husband 38 with stage 4 glioblastome (brain cancer). He’s my everything…. I’m now taking care of him, he has fought for a strong 3.5 years and still fighting hard. But my heart and willpower are starting to get the best of me! But I rad all the great info on this site and know, we can do this!!! We’re not alone in the scared, dark world of this terrible disease! And for that I thank every person that has told their stories, we hear you and thank you! God Bless you all!!!! Much Love!!

    Reply
  17. Yep. Just had a frustrating conversation with my brother who tried to rationally explain to me about my mother’s desire for a cell phone. When I complained about the number of things that have been bought for her that don’t get used, he said it doesn’t matter. I told him it mattered to me and went on to tell him that I’m tired and regret even doing this. He said I was the one who suggested moving in with her. Actually, I didn’t. She asked me to move in with her and without thinking, I just say “yes”. But he did admit that he didn’t know what it was like. Cardinal rule #1 for anyone: don’t assume you know what a caregiver is going through. You can’t know if you’re not living the daily reality of it and very little of anything you say will be a comfort if you’re not willing to empathize.

    Reply

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