When people find out I take care of my mom, a certain percentage of people tell me how lucky I am that I still have my mom. How I should cherish every moment. Sure, it’s hard now, but they’d give anything for just one more day.

These people are assholes.

Okay, I know they’re probably great people in the big picture. I’m sure they mean well. They’re speaking from their own grief or spouting nonsense they think seems right for the occasion. This is not the right thing to say.

I have some advice for the world: if you’re thinking of telling someone what they should be grateful for, don’t. Unless the message you want to send is that you are a person without empathy.

I’m stressed out over how I will pay my own bills and my mother’s expenses, which I could barely afford even if I weren’t required to take all of this time off of work to ferry her to appointments and cover when the home health aide doesn’t show up. Don’t tell me to be grateful that I’m going into debt because of my mother’s illness. Don’t tell me to be grateful that my own career and financial future are turning into a huge mess because of her illness.

I’m stressed out over how her illness has stripped her of dignity. Some people are capable of gracefully accepting care. My mother is not one of these people. She is mentally ill and fights every little thing I do to care for her. I have to provide her hands-on care many people, her included, find degrading. She has lost her independence and her ability to make decisions for herself. I am not grateful to have the opportunity to see my mother like this.

The mother I loved is already gone. I am not grateful to endure abusive tirades and hysterics on a daily basis for some unknown number of years. I am not grateful that this is what my life has become. No one deserves to be treated the way she treats me, but I have no other option besides enduring it. I am not grateful to have my mother here like this.

I’m sorry your loved one is dead and you miss them.

Your grief does not make my life easier. Don’t dump it on me. I have enough to carry.

Although, if you would give anything for one more day of having curses hurled at you, finding poo smooshed in the couch, or figuring out insurance coding errors, you’re more than welcome to come to my house and lend a hand.

T.L.A.

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.

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78 Comments

  1. I could not stop laughing when I read this! OMG it is one of those things we feel but are almost afraid to say. I felt the same way. My mom recently passed and it was traumatic for me and very difficult, my love for her is why I did what I did, but it didn’t make the days of having to jump immediately in the shower because you just got hit with a poop bomb any easier. I’m still gagging and vomiting just the same. I totally get it! As caregivers we need support, a break once in awhile, not to be left out of everything because of our responsibilities, and definitely not to be made to feel guilty because we are looking for a bit of compassion because we are just plain worn out.
    Thanks for this!

    Reply
  2. My mom passed away 8 months ago and I just found this article…so much of what I dealt with on a daily basis was mentioned here. It seems that everything I dealt with, thought about and struggled through– was done while finding resources or outlet(s) for relief after the crisis was over…like finding this article 8 months later. Although, that’s OK, because it lets me know that so much of what I was dealing with and thinking back in 2018, in the midst of my mom’s care and this article being written…gives me validation that I was not alone in my thinking or some crazed self-absorbed uncaring ingrate. Thank you!

    Reply
  3. Wow, I needed to see this today. Just spent many hours moving Dad to dependent living, from a lovely little cottage in a retirement community. After Mom died suddenly, everyone’s world was rocked, and especially Dad. I was there everyday worrying about his meals, medicine, dr. appointments, laundry, and getting him to participate in life. It ‘s been almost two years and Dad requires more help. Just spent the past week emptying the contents of his cottage to basically a really nice small apartment, but getting him moved in, his needs, and learning the system there, and settling the cottage I have been non stop. I have been physically and emotionally exhausted. he is close, so I will be there often. I can’t imagine doing this with children at home, or having a full time job. I am a retired teacher. My husband has been a saint in helping. My “she shed” is now filled with furniture and lots of stuff. I mentioned how tired I was to my girlfriends, and yes, the response from one friend, why are you so stressed, I would be happy to have that problem..ok, I get it, but that’s not what I wanted to hear. My older brother has not been any help, besides, Great job sis. Bless you all that have your elderly parents living with you. I feel guilty for not going that route, but he is safe, and I know his needs are being met and someone will be keeping an eye on him. It’s really expensive but he can afford it, and hopefully, when everything is settled, I can visit and not be the nurse and the nag. Blessings to all of you who are caring for your parents.

    Reply
  4. They’ve all got advice for you but, it’s all self indulging B.S.

    Reply
  5. They’ve all got advice for you but, it’s all self indulging B.S.

    Reply
  6. THANK YOU THANK YOU THANK

    Reply
  7. THANK YOU THANK YOU THANK

    Reply
  8. People just can’t understand unless they have experienced being a full time caregiver. Their comments sound condescending, but they are just ignorant.

    Reply
  9. People just can’t understand unless they have experienced being a full time caregiver. Their comments sound condescending, but they are just ignorant.

    Reply
  10. Amen, amen, amen!

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    • I got chills reading all the stories. God bless you all. I, too, am a caregiver. My title of wife seems to have disappeared. There are still good days along with some very bad ones. We just do the best we can even tho the man I married is not the man I see today.

      Reply
  11. Amen, amen, amen!

    Reply
  12. To everyone who commented: You are doing an AWESOME job! That’s something we don’t hear enough. I take care of my mom.

    Reply
  13. To everyone who commented: You are doing an AWESOME job! That’s something we don’t hear enough. I take care of my mom.

    Reply
  14. This is an awesome article and exactly how I feel. No one should be required to do and listen to some of the crap we have to as caretakers. I was not born so that my mother would have someone to take care of her. Yet, that is exactly what has happened. People, plan your funerals, but also make plans for your old age. Don’t expect others to take on your responsibility. I’m sure I’ll miss my mom when she’s gone but I want a life of my own where I don’t have to juggle my schedule constantly to be available for her and feeling guilty when my other responsibilities make it difficult to get there.

    Reply
  15. This is an awesome article and exactly how I feel. No one should be required to do and listen to some of the crap we have to as caretakers. I was not born so that my mother would have someone to take care of her. Yet, that is exactly what has happened. People, plan your funerals, but also make plans for your old age. Don’t expect others to take on your responsibility. I’m sure I’ll miss my mom when she’s gone but I want a life of my own where I don’t have to juggle my schedule constantly to be available for her and feeling guilty when my other responsibilities make it difficult to get there.

    Reply
  16. This is a great article and the first time I’ve read something that resonates with my current situation. This is not a blessing, it is another test! About endurance, patience, dealing with impossible problems that you have no control over.

    Reply
  17. This is a great article and the first time I’ve read something that resonates with my current situation. This is not a blessing, it is another test! About endurance, patience, dealing with impossible problems that you have no control over.

    Reply
  18. This reminds me a little of a novel I read long ago where a woman down on her luck had to work in a laundry in England in the 1700’s, stirring boiling water-filled vats of clothing all day with a paddle, rinsing the clothes out, setting them out to dry. Some upper class type showed up at her hovel when she was done, and wanted to take her somewhere (maybe to the king’s palace?) , and she told him about working at that laundry from sunup for hours, and he just looked at her. and said words to the effect, ‘really? well, you look fine, put on a pretty gown so I may show you off to my friends.’

    Reply
  19. This reminds me a little of a novel I read long ago where a woman down on her luck had to work in a laundry in England in the 1700’s, stirring boiling water-filled vats of clothing all day with a paddle, rinsing the clothes out, setting them out to dry. Some upper class type showed up at her hovel when she was done, and wanted to take her somewhere (maybe to the king’s palace?) , and she told him about working at that laundry from sunup for hours, and he just looked at her. and said words to the effect, ‘really? well, you look fine, put on a pretty gown so I may show you off to my friends.’

    Reply
  20. I hated the texts from a coworker “are you ok” – um… no… nothing about it made me “ok…”

    Reply
  21. I hated the texts from a coworker “are you ok” – um… no… nothing about it made me “ok…”

    Reply
  22. High Fricking Five.

    Reply
  23. High Fricking Five.

    Reply
    • Love you sweet friend ❤️

      Reply
    • Crystal Lawhead we know the struggle is real.

      Reply
    • Sara Pomakoy Poole we sure do ! I don’t take marriage advice from people who’ve never been married , parenting advice from people who’ve never had children , but MOST of all caregiving advice from someone who never walked in the hardest job I’ve ever had. ❤️

      Reply
  24. What about, “you really need to make time for yourself” or “you really should get more help” or “why don’t you put her in a nursing home?”

    Reply
  25. What about, “you really need to make time for yourself” or “you really should get more help” or “why don’t you put her in a nursing home?”

    Reply
    • Oh yes! I always hated when ppl would say all this

      Reply
    • Yeah, people who don’t look after someone are so handy at giving advice, good job we have these people around to ‘help’ us with their advice, shame they can’t actually help

      Reply
    • Jill Cooper’ be nice plz. Im a Caregiver as well and it gets extremely hard. Im at it 65 hrs a week at times but wouldn’t trade it for the world, im trying hard to help God do his work!! I wish i had my Mom with ME TODAY, Needy or Not!! #FeelBlessed#BeBlessed#GodBlessUMam!!

      Reply
    • Adrenerenee please don’t judge me I am caring for someone 24/7 I really don’t need someone telling me to be nice

      Reply
  26. I ama caregiver for my husband.

    Reply
  27. I ama caregiver for my husband.

    Reply
  28. Just got my mom out of rehab today.
    Every person that speaks to me gives me more to do, expects more information from me, more money to spend etc.
    Meanwhile my kids are staying at home alone while I take care of her and my dad.
    I love her and want the best for her but had a total meltdown yesterday when someone asked me if I was participating in a fun event that I intended to do.
    I can’t bc between kids and parents I don’t do the things I would like to do:(

    Reply
  29. Just got my mom out of rehab today.
    Every person that speaks to me gives me more to do, expects more information from me, more money to spend etc.
    Meanwhile my kids are staying at home alone while I take care of her and my dad.
    I love her and want the best for her but had a total meltdown yesterday when someone asked me if I was participating in a fun event that I intended to do.
    I can’t bc between kids and parents I don’t do the things I would like to do:(

    Reply
  30. Yes…Assholes for sure. Best to tell them “I’ll pray that you’ll be as lucky as me”….Ugh Ugh. Any fool can know but the point is to understand. Awarness & Ego can NOT co-exist…..

    Reply
  31. Yes…Assholes for sure. Best to tell them “I’ll pray that you’ll be as lucky as me”….Ugh Ugh. Any fool can know but the point is to understand. Awarness & Ego can NOT co-exist…..

    Reply
  32. I’ve never been told that.

    Reply
  33. I’ve never been told that.

    Reply
    • Wait, it will come when you do not need to hear that, but something else.

      Reply
  34. Many can relate to this guest author.

    Reply
  35. Many can relate to this guest author.

    Reply
  36. I really needed this today

    Reply
  37. I really needed this today

    Reply
  38. God Bless you, I am a full time caregiver for my husband due to a stroke. 12 years so far and I am exhausted!!!

    Reply
  39. God Bless you, I am a full time caregiver for my husband due to a stroke. 12 years so far and I am exhausted!!!

    Reply
  40. There has never been anything truer spoken than this article.

    Reply
  41. There has never been anything truer spoken than this article.

    Reply
  42. I totally empathize with your sentiments. I am a full-time caregiver for my disabled adult daughter, a comorbid, non-verbal Autistic & experience many of the same scenarios you described. The isolation & confinement are debilitating for me, also!!! Support is nearly non-existent & it’s physically & emotionally exhausting!!!
    So, NO I AM NOT BLESSED … I am enduring what I must to provide for my child.
    LOVE does conquer all … but, it’s a terribly lonely existence.
    And it sure would be lovely if once in awhile others included me in their adult socialization & not forget that I am more than just a caregiver!!!!!

    Reply
  43. I totally empathize with your sentiments. I am a full-time caregiver for my disabled adult daughter, a comorbid, non-verbal Autistic & experience many of the same scenarios you described. The isolation & confinement are debilitating for me, also!!! Support is nearly non-existent & it’s physically & emotionally exhausting!!!
    So, NO I AM NOT BLESSED … I am enduring what I must to provide for my child.
    LOVE does conquer all … but, it’s a terribly lonely existence.
    And it sure would be lovely if once in awhile others included me in their adult socialization & not forget that I am more than just a caregiver!!!!!

    Reply
    • I totally understand cause I have been caring for our disabled daughter also. People just don’t understand. It’s hard to met our bills.

      Reply
    • Very well said and I truly know how you feel

      Reply
  44. Rarely if ever been told that

    Reply
  45. Rarely if ever been told that

    Reply
    • Oh I have from many that tell me what a blessing it is, they have no clue how hard it is nor do they step up to help in any way.

      Reply

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