What do you wish other people understood about caregiving?

October 8, 2017

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Cuban people and emotions, portrait of latina lady laughing and looking at camera. Happy hispanic woman from Havana, Cuba smiling

I hear it all the time: only another caregiver can understand. I asked members of our community for some of the things they wished people who’ve never been a caregiver could understand about the experience.


Omg…people have NO idea what it’s like to be a caregiver unless you have been one. Your life is not your own, it revolves around the person you are caring for and you are darn lucky if your loved one is in decent health…my mother is wheelchair bound and had such bad dementia that most days she didn’t even know me (she thought I was her sister) then the times she was so mean to me…many times I cried in secrecy, and tell myself to shake it off, cause she didn’t know what she was saying…no one has a clue…God bless the caregiver! – Marcia


That I can complain, be depressed, hate my life sometimes but that doesn’t mean I don’t want to still care for the person I care for. I just need to vent and sadly…be told it’s ok. – Jackie

The feeling that you must always smile and never complain is so stifling. It feels that if you complain you’re inadequate or wanting to give up, which is never the case at all. – Frances

That it sucks the life out of you even though you’ve chosen to do it, and that you just need a break. – Jeannine

I wish people understood that when I complained, I needed to vent, not be told to put my mom in a nursing home. No regrets. A hard job. – Karen


That it is easy for you to sit outside and judge…for you to tell me what I am doing wrong and yet you won’t step up and put yourself in my shoes.

My sister and I care for our mom. Our father passed away so we moved in with her (middle stages of Alzheimer’s)…our brother LOVES to tell us what we are doing wrong…he is on a pedestal with our mother when he shows up maybe once a month to spend an hour with her. Ugh!

We have only been dealing with it for about 4 years but she has become very petulant and demanding…makes having a life so hard. And then having a brother swoop in and “save the day” just infuriates me! He has no idea what our day-to-day life is like.

I have a 15 year old that has had to give up so much. We sold our house, got rid of all of our personal stuff to live in what now feels like a prison. So coming in and telling me what I am doing wrong when you get to go home to “normal” and to your own personal items…not sitting well at all! – Angela


when i’m doing the best that I can, telling me to do something unneeded isn’t helping the person. If you lifted a finger sometime to help THAT is how you help. Im not a slave who wants 3rd parties telling me what to do, Im a person who cares and helps because I want to, not because I have to. And It’s not my Job to help relatives who don’t need help. Im not a dormant or someone to use for your benefit. Im actually just nice. – Eric


Just because your loved one isn’t confined to a bed doesn’t mean you aren’t caregiving. The never ending appointments, the emotional roller coaster, the constant battle with insurance and Medicare, the incessant barrage of family members and well meaning friends telling you how you need to handle things. It is suffocating. Everything changes. Everything. Your life is not your own. It revolves around the sick loved one 24-7, and NO ONE GETS IT! – Kim

There’s more to it than the actual work. It involves knowing someone will never return to who they once were. And the energy you expend doing for others takes away from things you could be doing for yourself. – Michaela

That it is SO much harder than you think it is unless you have done it you have NO IDEA. We need to vent because it is a mentally and physically exhausting 24/7 job even though we love the ones we care for, you constantly fight feelings of sadness, anger (anger at them getting old or anger at the illness, anger at God for doing this to them, not mad AT them but mad about the situation etc…) it is a constant emotional roller coaster.and everyone thinks that because you are doing it they don’t need to help at all. – Jennifer

Always being on high alert; the falls, the stress; juggling so many things to keep things together; can be so isolating! – Nina


That I have no reason to feel guilty because my Mom receives great care in the memory care unit/assisted living facility where she lives. We are involved in her life & ensure her care needs are met, and we realize that she gets more stimulation & social interaction than we could ever manage at home on our own.Mom receives such good care, yet there are still stressful times & things happen. The pain of watching her progress through dementia is still so hard. – Johnnie


Please stop telling us we are strong. I am not strong, I am dead dog tired of the physical, mental and spiritual toll. Stop telling me how strong our family is and pick up some of the load. And for crying out loud, visit these people if they cannot get out, make a phone call, send a card, drop off some potted flowers or a meal. These things help so much, Yes my house is a mess working full-time, with a teen who needs us too! Above all do not forget us. – Kelly

A general “if there’s anything you need, let me know” is not helpful. Offer me specific, practical assistance (e.g. I made some muffins, can I drop some off later? When’s your next respite scheduled? If you don’t have plans, maybe we can go out for coffee? Would you like some company when you run errands tomorrow?) I’ll probably say yes to one or more. Putting the onus on me to figure out what to ask for and then call you up to ask, almost certainly guarantees I won’t. It’s too much work to get and receive this passive form of help. You think you mean well making this kind of offer. It’s hard to receive it In that spirit, it leaves me doing more work to help you feel better. Try harder, please. Same applies post-caring, when I’m grieving the death of my loved one. – Alison

It can be very isolating and a phone call or text would be nice. Or come visit. Just because I can’t go out doesn’t mean We don’t want company. “If you don’t mind the mess, we don’t mind the company.” – Carmen

That they have no clue just how strong, yet tired, we are. When you are in these “trenches” someone’s help doing even the dishes is a MAJOR deal to us. – Pam


Friends say “call me when you find the time,” and then get angry because I haven’t stayed connected! Actually insulted because I didn’t ‘need’ them. And how many “let me know if you need anything”‘s have I heard?!

I’ve also ‘learned’ that I need to find a new church, a whole list of books I should read, to drop a few pounds to feel better, and one of my favorites is I need to ‘buck-up.’ I’ve learned that God doesn’t like a whiner, that chronic stress kills, that the ketogenic diet is what I should be eating and that if I don’t accept invitations to the homes of others, then I don’t really need a break.

And did you know that others come to visit me and expect a clean house, clean sheets, meals and a good mood? But they came to ‘support’ me. Even a support group required a covered dish! I wanted to know if anything needed to be in it.

I have been caregiving my mom with Alz for 6yrs, in my home and yes, it takes a toll on my marriage. (I’m always asked.) So where are our theater tickets and someone to stay with mom?

It’s actually been less stressful w/o unhelpful friends and family. They usually mean I will be expected to caregive them as well! – Wendy


That caregiving is my full-time responsibility. Just because I do not work outside of my home, does not mean I “do nothing”. Being a caregiver is more challenging than any job I’ve ever had. I may not be building a career portfolio, but my work is changing lives. Including mine. – Mary

Many of us are working 24/7, with NO holidays or vacations. That INCLUDES our families. My poor daughter has grown up not knowing what an “family vacation” is for the most part! (She’s now 22!) We feel guilt for all that our families have and ARE sacrificing so that WE can do the right thing and take care of the ones we love! – Jeannette

Unless you’re a caregiver, non-caregivers doesn’t understand that I honestly am “on call ” 24/7/365! Even trying to have 90sec for toilet or 10min shower time! It’s hard to have an uninterrupted 3min phone call! Providing proper dietary meals to a picky eater on a 5 meal a day w/2 snacks & adequate liquids! – Regina


The complexity of caregiving. Along with what all you have posted. Sleep is a luxury. Stress is the glue that holds you together. You are on your own when you decide to care for an individual. I’m currently caring for my mother and I took care of my father 20 years ago. You learn to accept the aspects of the caregiving life. In my case, no one will truly help in a way that is beneficial. You make best with what you got and roll with it. – Tonya

How awful you feel all the time because you can’t turn back time for the cared for and the hopelessness of it. The helplessness you feel day after day. It takes a cold heartless person to keep their sanity while caring. I’m losing mine! Oh and those once every two year calls from my siblings saying just let me know mother I can come and get you anytime no strings attached as if I’m the devil. She can’t walk, do laundry, manage meds, make meals, remember if she ate, wears a diaper and is confined to bed. Here at home there is room for her caregiver me. They have no idea that an aide has to come in daily to bathe her. Sheets are a daily wash. They don’t visit. She is in hospital bed they have no idea. At this point i have routine and it doesn’t include entertaining company. – Bridget


The doctors and nurses and other professionals do a pretty great job, but I wish they understood that we caregivers need them to talk to each other and be on the same page with a care plan, especially when being discharged from a hospital or nursing home Rehab. It’s very frustrating when one doesn’t know what the other is doing or wants done.

As far as friends I know they don’t always get it…after almost 20 years of caregiving. Unless they get thrown into a caregiving scenario of one of their own loved ones, they just don’t realize what all goes on.

Family…we have been fortunate to have family that help in any way they can. Still, there are many many hours and days of isolation. They are all working and going to school, etc.

I reach out as much as possible with text, Facebook, and phone calls when possible. – Theresa


That it’s hard to actually get out of the house. I am 26 and a newlywed and I don’t spend every night with my husband. I have been doing this since I was 20 and it’s so hard at times.

People still see me as a 20 year old. I have always acted older than I am. I had to grow up quick when I was young. But they always tell me what to do or what stupid tiny thing I didn’t do that day and I’m always like ummmm she’s still here and you didn’t do a dang thing today to help that. I did, not you. And when I do finally see my husband and God forbid we go to the grocery store and take to long I have to hear about it. It’s hard for me to be around my friends and actually live!

But as most of you are saying, I am not complaining at all, I just wish people would see what I give up. A family member of mine always post what her husband cooks for her or them by the fireplace and I just get so mad bc they could be helping but never do but they always get the glory when they come around.

I haven’t spent a whole week with my husband since we got married and went on out honeymoon in October. And that was an act of Congress to get a week together. It’s funny how when you ask someone to stay with her (and I never have until the) people are no where to be found. Like you know it’s not doing me a favor you are helping your own mother and grandma out geez sorry about that but I’m sure you will find her when you need money. – Amanda


That we do the best we can to motivate them to get better, but they have to want to do things themselves, too. If they don’t want to do things, or go places, carees do have ability to say no and fight us, and for caregivers that can be stressful. We do need breaks away but we do still love them. – Melissa

That for a moment imagine themselves in our position before saying you have to be positive, you should take time for yourself without offering you the time to do it… I prefer that they understand that we don’t need advice, we need a helping hand, a little time for catching up with ourself and our other loved ones… that our relationships are being pulled apart by our caregiver duties…that if they can’t give me the time I need… I will appreciate they keep the advices and the you have to do this or that for themselves …! – Marylind

That I miss my family, but would not chose to not take care of my mom. That I too wish I was foot loose & had something left to give to others. – Linda

That you are putting your own needs last, and it’s really painful some days to keep doing that for so long. And that your dreams and plans were all put on hold or lost completely because now you have to devote all your money, energy and time to keeping another human alive. And it can be very lonely and isolating and not many people can relate or understand what you’re going through. – Liz

Its physically exhausting and my priorities are not yours: Don’t judge my sloppy housekeeping, delayed responses to phone / texts, declining to socialize, dirty car, un-styled hair, simple dressing, or yard that needs attention: my spouse who needs care COMES FIRST. – Michele

The realization that I spend my life helping someone live theirs. That when I’m not with them, I worry. It’s not just a job, I can’t just turn it off. – Tatiana

That no matter how many years we end up being caregivers…. We won’t get used to it. And we won’t find it getting any easier. Everyday is a challenge to our mental and physical state. But no matter how much we rant, we are sincerely and willingly doing it out of love. But we still need to rant sometimes, cos we ain’t saints. – Hooi


That we often feel very alone and afraid often. We miss the things we used to do and enjoy. We make everyday count even if we’re home doing nothing. Phone calls and “hi how are you” are so appreciated. And family, don’t avoid visiting us, just because you feel you don’t know what to say or do. We just enjoy the time with you.

We are in a new normal and these changes bring some sadness but closer together in understanding and in unconditional love. I as my Hubby’s caregiver often have waves of like grieving come over me. In this I know Gods hand is over us and all will be well.

I think as caregivers we do a lot of crying alone. My thoughts are with all of you in this walk in life. One day at a time is all I can do. – Marsha

So many things. How much I miss the man I married. That you can love and be devoted to someone and still need them to be in assisted living. Also that even though we’re not the sympathetic figure in the equation, we need our old friendships. We want to be included and remembered. We are lonely. – Debbi


How isolating it has been. The mental, physical and emotional toll of doing this for years.

How much I hated being asked how was he doing….when we had a long series of complications and facing a grim prognosis as we ran out of options. People just want to hear that “he’s doing much better, thanks for keeping us in your thoughts and prayers.”

How sad I was being unable to travel to visit my family out of state due to his condition. I have not seen my elderly grandparents or my father in over five years.

Devoting my life to caring for him, knowing we do not have a happy ending to look forward too. Knowing every moment was borrowed time. No one understands the way this affects my emotional state. – Morgan


Don’t tell me that everything is going to be OK. Cause it’s not. There’s only one outcome. And if you say you want to help then do so. Don’t expect the caregiver to ask for help, because some people don’t want to burden others with what they are going through. And also don’t tell me what I should or shouldn’t be doing when the outsiders have no idea what or how to handle specific things. Did I want to put myself in this situation? No! Am I in this situation? Yes! Because I care. He’s my dad. And I will do whatever it takes to help him. Is it mind boggling? Yes. Does it take its toll on me? Yes! Do I need a break? Yes! Does this whole situation suck? Yes!! – Tara

It’s mentally exhausting, there’s so much more than just giving physical care, I need to complain as well. It’s not a job I can walk away from. It’s 24 hours a day, anytime of day or night and inconsistent times. That I need help but won’t ask. That you shouldn’t judge me or what I do because you really don’t know unless you are in my shoes. – Elizabeth

People always ask how he is doing but never ask how I am. Everyone is completely oblivious about the fact that my entire life revolves around running the business to support us, managing his heath condition (5x a week home hemo dialysis treatments, drawing, shipping analyzing labs, coordinating doctor appointments, planning, shopping for and preparing all renal appropriate meals). I am collateral damage, but without my efforts he would not thrive how he is. His life is not defined by his disease but mine certainly is! – Corlyn


You can read more responses here and add your comments below.

Written by Cori Carl
As Director, Cori is an active member of the community and regularly creates resources for people providing care.

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45 Comments

  1. A dependable support group comprised of family and friends is of great help to a caregiver. Thank you for your post!

    Reply
  2. I just want to thank everyone for sharing their thoughts. Reading them makes me feel like I’m not alone and someone truly understands what I am going through!

    Reply
  3. Stop saying, “don’t forget to take care of yourself too.” That statement feels like there’s a choice. Every caregiver would love to take care of themselves but it’s not like deciding to put the laundry off till tomorrow and watch a movie instead. Caring for a human being that can’t care for themselves has to come before everything. Morally and even legally.

    Reply
  4. Getting up in the middle of the night to change and clean up after a bowel movement. Getting a drink or a cookie afterwards for them. Then trying to get back to sleep, which rarely happens for me, but I force myself to rest anyway. Zero time for myself except for Hospice respite care for five days every two months. The silence cuz my better half can no longer verbalize something you can understand. A yes answer comes seldom now. I’m not one to complain, it’s what I signed up for. Lost both my parents to Alz. And now my wife has entered her ninth year feb. 1st. God bless those that care and give!

    Reply
  5. That when you talk about how it really is, that they think you are complaining. No, it is stating the facts/realness of the situation!

    Reply
  6. From a special needs parents’ perspective — That when you have to do things for another everyday ( help feed, brush teeth, bathe, teach ,etc.) that others will eventually do on their own it takes more energy .. And at the end of the day you may not feel like socializing or doing anything else… People with typically developing children have to do those cares for a few years & then they are pretty self sufficient.. We special needs parents want friends to know we aren’t trying to be distant we are just tired! 🙂 and if possible.. Offer a day off for us.. We don’t like to ask for help..

    Reply
  7. That not every caregiver experiences the same hardships. Some of us are 24/7 with no sick days or vacation.

    Reply
  8. Ask these things everybody is saying.. You have every emotion possible the love guilt scared worries anger it goes on and on. Please forgive me if I may bark I don’t bite

    Reply
  9. That I can’t just get up and go. I have someone who’s very life depends on me and I need to get them and myself up in the morning. That I can’t make concrete plans because my constant state of worry has caused me severe anxiety and I don’t always have someone capable of doing what I do so I can go somewhere. When I go out, part of my mind is back home worrying and wishing I was there. Oh and I wouldn’t trade my life for anyone’s.

    Reply
  10. I am exhausted and need a break, not more aggravation and ridicule.

    Reply
  11. I hope others read a few of these…

    Reply
  12. Sometimes we need help with what the partner would ordinarily have done, like fixing a water heater, or a porch… And we can’t afford to hire it done because we’ve had to give up a job.

    Reply
  13. If you have not lived it you will “never” know it.

    Reply
  14. That your life is a total and complete nightmare 24/7 and there is no time for anything including most days, it was hard for me to even get in a shower, much less try to do something with a friend. Everyone who knew me during my caregiving days probably thinks I’m a complete bitch because I lived at the end of my rope every day for years. It’s the worst and hardest job in the world. Hang in everyone!

    Reply
  15. I cant say no and my life is short relax with me and live forever,

    Reply
  16. Just empathy and a shoulder or a “how are you feeling today?”.. Some people’s’ empathy buttons are broken and others NEVER think to ask because hey that’s your job! Or “let me do something for you”.

    Reply
  17. That for some it’s a life long commitment, especially if someone is on autism spectrum, you will always be a caregiver. The commitment doesn’t end.

    Reply
  18. Thank you for sharing the article – it made me feel that I am not alone, which helps a lot 🙂

    Reply
  19. The great responsibility you have to make sure your loved one is taken care of and how lonely it can be when you are not able to have free time. It is very physically and emotionally exhausting even if you are doing this because you love this person very much.

    Reply
  20. That it is truly the hardest job you could ever imagine found.
    You not only live for yourself but for the person you are caring for.
    There are unwritten guidelines.

    This is not for those who take care of someone for 5 to 6 weeks and they are better.

    This is for the long term Caregiver.
    Please don’t say you understand because you don’t and never will until you walk in our shoes.
    Also to know that most of the time you are caring for someone the inevitable will happen, death.
    You have to be strong. Stronger than you ever imagined you could be.
    Humans were not meant to exist in a 24/7/365 life of doing.

    For those who can’t do it or even help, don’t ask what can I do for you? Do something, anything.

    Thank you

    Blessings to all caregivers ❣

    Reply
  21. That it’s a 24/7 job. When you ask for help, the helpers should trust what you say and follow our lead.

    Reply
  22. So good—great descriptions of how I feel!

    Reply
  23. I agree. It’s exhausting.

    Reply
  24. I found it a time where special love did not consider it a chore. Yes your busy but happy person home with you.
    Really not poor me but the person who is I’ll. Consider how they feel.
    I really get tired of the poor me caretaker.
    Elaine

    Reply
  25. Don’t give me advice
    Don’t tell me to take care of myself
    I’m pretty sure I know all that.
    Just say good job and bring a casserole then leave .

    Reply
    • I tell people all the time: don’t admire me. Coffee me!

      Reply
    • Susan Creel EXACTLY. I’ve done BEEN doing this for ten damn years and y’all wanna fly in for 2 hours of good deed doing and feel good about yourself. Just no. How hard was it to text. Send a funny meme. It’s not.
      Just bring food and leave.

      Reply
    • Kim Crabbe Winn Exactly! 20 years on the clock for me. It’s my life. Its not a big deal – however, the isolation is rough! I don’t require anyone’s “time” to keep going. Everyone has “stuff”. An occasional check in would be nice – especially during flu season when we limit going out.

      Reply
    • Bring something for dinner and clean my house, do the laundry, pick up some groceries, and don’t forget the wine and chocolate. Oh, one more thing, how about you ask me how I’m doing.

      Reply
  26. how hard it is emotionally as well as physically.

    Reply
  27. I wish people would understand that I am usually physically and emotionally exhausted all the time even though I might not show it.

    Reply
  28. That sleep doesn’t really mean sleep – always always listening for an odd breath and jumping out of bed at a moments notice.

    Reply
    • My Mother went to a nursing home last January. She passed in June. Since then my ears are still listening for her. That now I actually have ringing in my ears because they are still listening for all the noises.
      She was in our living room in a hospital bed for three years and lived with me for 20 years.
      If I told this to ordinary people they wouldn’t understand.

      Reply
    • My mom has been in the hospital recently, had the flu, and then went to rehab. Has been there for about a month and expected to be home in a week. I still get up every morning and look in her room, a habit, to see if she’s still “here” or passed in her sleep. I think I’ll always be looking for her.

      Reply
    • I moved my parents across the street from me 13 years ago. We went through a time that my Mom was having a lot of blood pressure and afib attacks and it would always happen in the middle of the night. It got to the point I would go to bed fully clothed with the phone in my hand and my shoes, purse and keys right beside the bed. No one understands what it is like unless you’ve been there!

      Reply
  29. That even though I choose to do it, something compels me to do it. I’m not judging you for not doing it I just can’t not do it. I am exhausted and I need help. It’s hard to ask for help.

    Reply
    • That is so true I took care of my husband and it was hard but like you said we have to do it and yes it’s hard to ask for help but I did I got hospice and they were a god send.

      Reply
  30. There are so many people who don’t even realize that they are caregivers. It’s not just those who quit their jobs to care for a loved one full-time, but those who alter their schedule to take their relative to weekly dialysis treatments, or those who take leave to help someone recover from surgery.

    If more people recognized that they are caregivers, perhaps there would be greater urgency to develop initiatives to better support caregivers.

    Reply

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