Caring more than they do

March 9, 2016


You know what makes being the caregiver to a disabled adult (24 years old) suck so damn bad and why it is the most aggravating job that I will NEVER do again (sorry to our family that is aging, but when you can no longer take care of yourself, into a home you will go)?

When you care a LOT more than they do.

When everything you try to do for them that is good for them is met with a fight.

Like opening the curtains every day so he can see the sunshine.
Like asking him to drink water every day to stay hydrated.
Like putting 1 scoop of vegetables on his plate so he gets some vitamins.
Like trying to urge him to have an applesauce squeeze pouch instead of the s’mores poptarts.
Like asking him to call his family that loves and misses him.
Like asking him to have some independence and look for things he needs just for himself online that cannot be purchased locally.
Like asking him to check his bank account balance over the phone.
Like having him make appointment arrangements for himself.
Like asking him to be accountable for his own hygiene and ask for a toothbrush, a washcloth, some deodorant, a Q-tip, a fresh bathroom rag, nail clippers, a napkin, a new shirt when it gets dirty, a bath when he needs one (before he needs one, in fact!).
Like asking him to be courteous of us cleaning up after him and to warn us that his pee rag is sopping wet because he spilled a little when he went before we pick it up with our bare hands.
Like thinking ahead when he knows he can only pee in his urinal twice without spilling and letting us know he needs it dumped when he finishes going the 2nd time instead of when he needs to urgently go a 3rd.
Like being mindful of his own medicinal needs and to remind us that he needs to take his laxative drink now because sometimes we are running around or cleaning up or cooking, consoling a cranky baby etc. and it slips our minds.
Like letting us know when he starts to get hungry instead of waiting until he is starving to want something right now.
Like begging him to get into his chair today to go down to the park and see some of this world in all of its beauty.
Like trying to have a meaningful conversation with him to be dismissed as soon as the last word leaves our mouths so he can tell us about the blue fire he made in Minecraft.

Yes, he has many needs and yes, we are here to help him because in his position, he cannot physically do very much himself, however when he doesn’t even care about his own needs, when he continuously refuses to take care of the things he CAN take care of for himself, how are we supposed to feel? Every single day it is a fight of some sort, a plea, and ultimately a long, inward sigh of sadness.

by Linaia Le Doux‎, originally published on our Facebook page.

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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  1. Amen! It’s the part that consistently drives me insane. Simple, simple things, like drinking water so kidneys don’t completely shut down with stage 4 kidney disease. I’ve bought flavored water, made lemonade, spa waters, every kind of bottled water, purified the water…I mean, she is literally killing herself by not drinking water. Just drink the water. ARG!

  2. so understand this,especially when the disease the person changes their personality… and you dont know untill too late

  3. I have some of these same struggles with my son.

  4. I am the legal guardian of my 26 year old son.
    If you’re going to stay anywhere close to sane you need to go to counseling and develop some skills and strategies for self preservation .
    It’s worth the time and money.
    Not only can you vent to a professional and gain insight, they will help you learn to maneuver against these issues and manage your emotions.

    It’s been a long time since I took anything personally from my son. That’s not to say I’m not deeply affected by his behavior. But it’s HIS behavior and you learn to accept that you can only do your best.

    And that’s damn better then anyone else is going to do.

    That list though …. that’s a lot of burn out showing there. Get a counselor. You deserve the best tools possible to do this job.

  5. Everything I try to do to keep my elderly father safe and well is met with a fight, and it is exhausting. His lady friend fights me on everything, too. I have a medical background but don’t know what I’m talking about, of course.

  6. Yep! I have the same problem with care giving for my dad! It’s so frustrating!

  7. Yes I went through this. It’s so hard. It’s like having kids but they are so much bigger! Mine are both gone recently, still can’t get it through my head. Miss them so much.

  8. Thank you all who take the time to post on this page. It helps to know I’m not alone in caring for a parent and my thoughts and emotions along the way.

    • We are so many and brings comfort in our hearts ❤️

  9. I need some help Medicare will not pay for name brand meds doctor says medically necessary no generics how do I get help

  10. Day after day. But now that it’s over I wish I could have been more patient and emotionally stronger.

    • I think we all feel that way a lot of the time, but we do the best we can at the time. Sometimes the best we can do doesn’t seem like much, but we are human, dealing with crappy situations.

  11. What everyone who doesn’t live with someone needing care fail to realize. So True.

  12. Been there many times!!

  13. Yea, I have been here and still am depending on the care. 🙁

  14. Put a smile on your face and do the things that need to be done . Stop complaining about what he can or cannot do. Be grateful that you have the ability to do all of these things for yourself. Respect this young man and you will find that he will respect you back. Life is a gift and you can make it so much better for this young man by having a cheerful. giving attitude. My daughter is 43 and is totally dependent, she has her moods and these can be frustrating but I try to be cheerful and take them all in stride and have learned over the years to be more patient and loving and caring.

    • You are some sort of special. Not everyone is cut out to be a caregiver. I know I was not,but managed to do it for 10 years, 24/7 and we managed not to kill one another…but what a thankless job…would I do it again? I think I’d run away…

  15. I feel for you! My situation is different in many ways. But when every single tiny thing is a battle, it is almost unbelievably frustrating and exhausting. This aspect of caregiving is one I haven’t seen written about much. I’m grateful for this post.


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