6 reasons why caregivers don’t practice self-care (the way you’re telling us to)
you are kidding

sat in the waiting room for 3 hours only for the doctor to tell me to make time for myselfNo one likes to be told what to do, particularly when one has no time to do it.

Caregivers have full schedules with competing responsibilities and self-care is not often a priority. This is problem, absolutely, but it isn’t getting resolved with the hundreds of (unoriginal) blog posts that suggest unrealistic ways for the caregiver to take care of his or herself. It feels like these bloggers aren’t listening to the real needs of caregivers. And therefore, we’re not particularly inclined to listen to them.

Here are 6 reasons why we just can’t listen

1. Who has time to take bath anyway?

Why is this suggestion so common? Taking a bath while caregiving is almost a mythical scenario: it requires a chunk time; vents and running water make it difficult to hear anything outside of the bathroom; and you can’t quickly attend to your loved one or patient if necessary.

2. I don’t have the kind of money for a masseuse or day spa…

Massages are wonderful—or so we’ve heard. Going to the spa or getting a professional massage would be a great way to treat oneself but spending that kind money is hard to reason, since family caregivers don’t currently receive any compensation for their care and full-time caregivers are racking up thousands in lost wages every month.

3. … not to mention in-home help

If we’re taking a break, we’re going to need someone to step in for us. And in-home help isn’t covered by insurance in many cases. Many times, our loved ones and patients are not interested in having anyone else but us care for them.

4. There’s no telling when I’ll be interrupted

Any kind of self-care activity we engage in has to leave room for interruptions. If our care recipient calls, we answer. Thus, we’re usually running on a less-than-ideal amount of sleep.

5. My family is not interested in helping me (and I’m not interested in their help either)

It would be a huge help if every primary caregiver had a willing, easy-to-handle, loving family to step in and provide much needed respite care. Unfortunately, many of us have historically tense relationships with family members, or these relationships are strained by the stress of family caregiving (or both!). Our family might be unwilling to take responsibility or they cause more harm than good when they do help.

6. I don’t even feel like my needs are worth it

Sometimes it’s just really hard to see that our needs are worth prioritizing. When we do have time alone, catching up on our to-do list feels more valuable than doing something we truly enjoy, in the same way we might label the pursuit of a childhood dream as unrealistic. It’s hard for caregivers to ask for what they need since they are expected to have all of the answers.

It’s harder than you would think to self-care but it’s not impossible.

Get creative! Pay attention to what a caregiver really needs and work around the constraints of caregiving. Show us you understand what it takes to be a caregiver by creating thoughtful yet practical self-care practices. And we’ll show our appreciation by actually doing them!

What’s one creative way you take care of yourself? Tell us in the comments below!

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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57 Comments

  1. the breathing comment sounds good.

    Reply
  2. Yeah, and don’t ask me where I’m going for vacation either.

    Reply
  3. Yes can definitely relate

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  4. I would be urinated or feces on several times a day. Drive me crazy with “why don’t you wear nicer clothes?” Jogging clothes were the best I could do for FIVE YEARS NO HELP!

    Reply
  5. People just do not get it, I have lost friends over it, obviously not the friends I thought they were.

    Reply
  6. Little things mean so much now…a friend stopping by with a treat…tea…taking that extra time at store to sample the coffee…going out to lunch…flowers…a new pair of pjs…take out for a dinner…sigh

    Reply
  7. Yep! I figure if I get a shower and clean clothes, I’m doing good.

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    • absolutely. Imagine being able to get up in the morning and only having to wash and dress your own body, omg heaven. Imagine only having to worry about your own breakfast, lunch, toilet runs. And people wonder why we might still not be showered by mid afternoon.

      Reply
    • Frances Ryan Definitely! And I thought I was the only one who couldn’t manage to get into the shower until mid-afternoon some days!

      Reply
  8. This is such a
    realistic article! I happen to be a great believer in do
    what works for myself &
    loved one & if
    it works, leave
    it be! We don’t all fit well in boxes!

    Reply
  9. We all know because we live it every day. And as a female caregiver in my early 50s, I have peri-menopause on top of it all. Some days I feel as though I’m going crazy!

    Reply
  10. Great article… no other person truly understands except another caregiver and each caregiving experience is so unique within it’s own. I ended up going to a Life Coach after my husband’s surgery & treatments were completed. She treated me for PTSD. It was the best thing I could have ever done as I felt completely stuck. Every person copes with things the best they can with what they know. Many “outsiders” do not get this. It’s so important to talk with others who understand & are truly supportive. I hated being told to take care of myself as I worked full time & only slept about every other day for over half a year. It physically & mentally harmed my body. I have 2 separate heart issues now. I honesty would do things a bit differently if I ever have to go thru caregiving again. No one should ever think 1 person could or should be able to do it all. Of course, you do what needs to be done, but if there is a next time, I will ask for help & not hesitate to better take care of my own health.

    Reply
  11. I think one problem with non caregivers well intentioned suggestions for self care is that they simply cannot relate to the complexity of a full time caregiving role. Whereas someone who works 5 days a week from 9-5 and actually has free time built in to their week might find leaving the house to get a massage as relaxing and enjoyable, for many caregivers it is actually a waste of precious time that could be used to get essentials done. To even begin to conceive the sheer mental, emotional and physical exhaustion the role causes you need to live it, it is not something that can be truly understood from the outside. Sometimes being able to simply sit, in silence, and think of nothing, say nothing, do nothing, be obliged to no one, for even just ten minutes is the most indulgent luxury, and very therapeutic. But to be told so often that you should be getting out, doing something considered enjoyable or relaxing by others, is frustrating and irritating.
    It’s not that people mean to be annoying, they just don’t and can’t get it.

    Reply
    • Could not have said it any better! SO TRUE!

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    • Thank you for putting into words the emotions, feelings I’ve had these past 7 years. The one that makes me shake my head the worst is the phrase “You need a vacation.” Really?!?

      Reply
    • Haha that’s a fun one isn’t it Cynthia Like telling a bald man he needs hair – tell us something else we need that we can’t have. Salt into the wound.

      Reply
    • yes, at least I can still laugh at the phone calls that say I have won a cruise.

      Reply
    • Exactly Frances!!! Couldn’t have said it better!! Plus don’t have the time.. To type all that!!! LOL…

      Reply
  12. Yup! If I had money for a massage weekly I would do it. If I could afford someone to help with cleaning I would already have help!

    Reply
  13. Even things I do to take some of the pressure off fall flat. The other day, I was 5 minutes away from my hairdresser for a much-needed trim and color. My dogs’ groomer called. “Where are the dogs?” I hurried home, and took the dogs for their haircuts. I still haven’t gotten mine.

    I had a gift certificate for a massage. Today was the day. I was on the table, trying to find that elusive relaxed place in my mind, when the electricity went out. “It’s probably me,” I joked.

    The maseusse said, “Why, is there a dark cloud hanging over you?” Little did she know! I had to wait a few seconds before I could answer.

    She finished the massage in total blackness. She told me that she really likes a challenge, and I am the most tense person she’s ever worked on. I then had to climb down off a tall table (no electricity to put it down) and get dressed in the dark.

    Last week was fairly typical. On Thursday, I didn’t get paid–again! Last time, I didn’t get paid for 10 weeks; this time, it’s been 6 weeks. Tomorrow is payday; if I don’t get paid then, we’ll start bouncing checks.

    Meanwhile, Monday night, I took my husband to the ER, and he was admitted. My car started making a terrible noise, so it was towed to the mechanic. I was driving our conversion van, a huge beast that we use only for family trips. The power steering went out, and I had to take it to the mechanic.

    So, I got my van, my car, and my husband all out of their various hospitals. On Saturday, he felt well enough to go to our son’s soccer game, but I didn’t want him in the crowd (compromised immune system), so we were going to watch from the car. I drove up to the ticket-taker to ask where we could park close enough to watch. Before I could open my mouth, she started yelling at me, “NO, NO, NO, you can’t come up here!” She wouldn’t listen, so we left.

    We decided to go for a drive instead. I was driving along, chatting with my husband, letting go of the negative vibes, and got pulled over. $126 speeding ticket.

    So, I guess there IS a black cloud hanging over me. People keep asking, “What can I do to help?” I don’t know what to tell them. “Get the state trooper to not pull me over? Get my company to fix their broken “Leave” system? Get the ticket taker to not yell at me? Get the road crew to not accidentally dig up the power lines to the entire shopping center?”

    Reply
  14. Getting ready to do something “relaxing” can cause even more stress because of having to line up (usually) more than one person to take your place while you are gone! I went on a weekend trip with a couple of friends to go to my goddaughter’s baby shower in another state (10 hr drive) and had to line up 3 daytime caregivers to take my place and make sure night nursing was taken care of (though that almost fell through!). And just daily stuff is hard too. My regular hired caregiver is herself battling an illness so I have been trying all summer to get coverage so I can work. On top of that I have an ex that thinks I am selfish to want “me time”…….

    Reply
  15. -I take an hour drop in exercise class close to home while my loved one is sleeping. At the moment it is aquasize. I can get home fast. I can leave at the last minute. I can work as little or as hard as I want. I can let go for an hour.
    -I take him to concerts. Symphonies, choirs, country, cultural performance that is free or inexpensive and we can enjoy it and relax. If my loved does not like it or gets agitated we just leave.

    Reply
  16. I am recently new to this page and I find it very comforting. At times you feel so alone, stuck in place with no one to understand you or to help you. I have been taking care of my Mother for the several years and was able to work and have time to do things. As of August of 2014 I am now her full time caregiver. I had to quit my job and focus solely on her. I understand the shower and the lack of sleep, even the ringing of a cow bell makes me jump out of bed like its on fire. I am beginning to understand that this is now my life. BUT… I am having issues with the health companies or whoever governs this about why there isn’t any compensation for family members who leave the work marketplace. The caring for our families in need is only going to get worse as the ” baby boomers” get older. The loss of income now makes living with a husband ( who is very understanding) and the needs and demands of a teenage girl extremely hard. With so many caregivers now at home why isn’t there a system or something from the insurance companies? I’m not looking to make the money I was when working but something is better then nothing. Sorry for running on… I just needed to vent.

    Reply
    • I’m glad you found us! There are some programs that pay family caregivers, but it’s a very complicated system with many family caregivers still left without any sort of financial compensation. One of the big goals of creating a space where all caregivers are welcome is to help us have a bigger impact in the fight to get more financial support for the ill and those who care for them. It’s an important issue that, as you said, is only going to become more important as people live longer and have more chronic healthcare needs. Some long-term care policies do pay family members to provide care, but they’re increasingly rare.

      Reply
  17. Recently, I heard someone close to me was telling my friends that they are worried about me. I am doing too much and look so stressed out and have gain weight, etc… This really got to me. It was from a kind place in her heart but I really took it personally. Yes, I am stressed! By the way, rightly so. Am I in need of a constant exercise regimen and a healthier lifestyle? Yes. Do I need sleep and relaxation? Of course. Guess what? not realistic right now. Some stretches of time are better than others and when that is happening, I am as good to myself as I can be. When things are not so easy, I do fall to the wayside. I accept this as I cannot do much to change it. It doesn’t mean it is ideal, it just means it is what it is! Instead of telling mutual friends how I am overwhelmed and look like crap, I would rather have them understand and give me the benefit of the doubt that I can only do so much in a day. Things fall on me that I cannot delegate. This is my husbands life I am caring for. ugh. Very frustrating when someone points out the obvious instead of maybe coming by and asking me to go on a walk on the beach or bring me a darn healthy meal. That would help.

    Reply
    • I understand everything you are saying…have been there with my dad and still there with my mom…

      Reply
  18. I am very fortunate to be able to go to aqua size three times a week which gives me fellowship and exercise! It is my survival and this site is a very big blessing!

    Reply
  19. I would love to take a nice long bath, however we only have one bathroom and my mom is in there all the time. I’m lucky to get a quick shower in. I also have a door bell that my mom or dad can use if I am upstairs–that’s where my bedroom and living room is. If I hear a door bell on TV, I instantly go downstairs. lol Hard to relax.

    Reply
  20. I have an adult coloring book, with cool gel pens and twisty Crayolas. Listening to music and relaxing in a happy place or hugging my husband are also great stress relievers.

    Reply
    • I love doing craft projects to relax! Adrienne and I are both really into collage – it’s such a great way to work out feelings.

      Reply
      • Yes! It’s relaxing to be doing something soothing to the mind, with our hands. Masterpieces not necessary 🙂

  21. just exhausted and stressed…and my life is nowhere near where some of you are – but I do work fulltime still and that adds to my exhaustion and stress – but Lord help me when I have to quit work and stay home all day – the stress I feel just knowing that day is coming just adds again to my exhaustion and stress. I am my mother’s sole caregiver and she is not agreeable – she suffers with loss of control and I definitely am a reluctant take charger individual.

    Reply
  22. #4 “you never know when you’ll be interrupted” is so true. 18 months on from my duties as a carer I still find it difficult to ‘concentrate’ to read or watch TV or do anything because I’m always half alert for someone calling me.
    I have [thankfully] no difficulty sleeping, I’ve gotten out of the habit of waking up at every sound…

    Reply
  23. It really is hard to get that self care in….Like the young lady above me said, I have been called out of one of my 5 minute showers (lol) I am learning to work around my time with my Dad. My Mother was very easy to take care of, I worked full time and Daddy was in much better health so it was a dual job. My Mother died 20 Feb 2013 and a year and a half later my Dad health started to decline with heart failure and newly diagnosed Amyloidosis. He is not a good candidate for chemo because he is so weak. His muscle tone is poor and its difficult for him walk even a short distance without assistance…. Its all on me but my daughter and her husband, they have (4 kids) under 10, tries to come over and help also… My brother and his wife try to come down once a month and I get to sleep in my own house that weekend. They both work full time and its a 4 hour drive for them. I am out on Family Medical Leave now and I miss my job as an OB Intake Nurse. When taking care of my Mother I was able to stay in my own house. I went to my parents house every evening fed her and got her ready for bed. Sat and Sun I was with her 24/7. She was so sweet and we became even closer. That was my Girl. My Dad on the other hand gives me a fit….. I Can’t do anything right. He says I’m trying to take over. I’ve moved in with him and its a 24/7 job. We bump heads a lot. . Okay.. just wanted to vent. I love this site. You all will never know that sharing what you are going through makes me feel not so alone…And right now ,I’m having a nice hot cup of coffee before he calls. Be Blessed all.

    Reply
  24. I agree w/all of it except some of us don’t even care for a day spa…Sometimes it’s just as stressful just to be away from your loved one and then nobody understands why you are still not relaxed..If I got certificates for that, I would just give it to someone else who would appreciate it more…but it is true that we can’t afford any of that stuff…A gift card to the local grocery store would be much more useful and helpful, for example.

    Reply
  25. I went bowling one night. By the time I was able to have a beer and finally start to relax, the games were over and we were heading home.

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  26. I had to laugh at taking a bubble bath. How many times have I been called out of my 5 min showers to come to the aid of my mother – about half the time I throw my robe over my wet body and run.

    Reply
  27. I started a meditation practice and it has made all the difference ! It is as easily accessible as breathing. It was impossible for me to even think of self care but not now- even if I just have a few seconds to grab, with the snap of a finger. Have found that there is an accrued benefit. True- I had a friend give me some respite for weekend when I took a meditation workshop. WELL WORTH the price of admission!
    mw

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  28. After being the caregiver for both of my late mentally ill mother, my recently departed in-laws, my 8 year old special needs child and my terminal father, I have found myself angered, confused, and humored by many articles regarding “self care for the caregiver.” It’s nice to read on that more aptly reflects my experiences.

    Reply
  29. I have managed alone since 2007 in caring for my disabled husband. Prior to that, he was able to manage for himself while I was out at work, but when it became clear that he was no longer able to prepare cups of tea and his own meals, I had to leave my job. I can get interrupted at anytime, even whilst on the toilet and so I have to take my little pleasures when I can. I’ve adapted my routine to suit his, so that I can be ready whenever he needs me. I have hobbies which I can pick up and put down as necessary, which are easy to fit in around his caring needs. I realise that this isn’t so in the case of many carers and there are still times when I feel that I could use more support. Respite care by an unknown person is out of the question as my husband would not settle with a stranger. My family live too far away to be of any practical help, although they are morally and emotionally supportive. His family quite frankly let the side down badly. Most of them own cars yet none will lift a finger to help with driving him to hospital appointments, etc. This week alone we have spent in the region of £50 on taxi fares as I don’t drive. They find it embarrassing to have a disabled person in the family and often accuse him of faking it to get their attention and sympathy. I now say that I’ve managed this far without their help and will continue to do so. I may not be the perfect carer but I do my best and try to look after my own well-being as best I can. My husband knows that if I’m contented I will do a better job of looking after him.

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    • Xanxa, reading your post almost gave me goosebumps. I identify so much… your story matches mine to a tee. Sometimes it is good to know that someone else out there is going through what you are going through. You are not alone <3

      Reply
    • Have you heard of Well Spouse. org – a place to land

      Reply
  30. Good post. Since moving in with my mother in October of 2012, I’ve been to a spa twice–once last year and the other time was last week. Regular spa visits would be nice, but working full-time along with caregiving it isn’t always possible, plus it’s pricey. But I do try to squeeze in time for myself like going to a movie (where I’ve been known to doze off) or sleeping in late on the weekends or just going to Panera or the library with my computer to get some alone time. My brother has offered that I could come to his home anytime, but as an introvert, a lot of times I just want to be away and alone, something I miss the most since I lived alone for 20 years before moving in with my mother. I don’t necessarily want to be around anyone else and have a conversation. The last time we talked about it, he told me whatever I needed. I could have the basement to myself and there would be no expectation of having a conversation. So, I may take him up on that sometime.

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  31. Spot. On.

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  32. Circles of care is a great idea. At Caregiver Access we are working hard to start a program that would get actual people out into the community. These would be trained folks whose soul objective is to get Caregivers anything they need. It’s a dream and may take a few years to come to a community near you. We’re doing all this without funding because we can’t wait. Caregivers deserve respite, connection, support, resources and to be cared for by folks who have been down similar roads. We would never think to suggest a bath to a mom whose child is having seizures or to the wife of a distressed husband with Alzheimer’s who needs to see you every moment (my case). I am so sorry that the Caregivers who need us now aren’t getting this kind of support already.

    Reply
  33. We’ve all heard it, read it and know it, but knowing something is true, and being able to actually do it, are often incompatible scenarios. A bath? Ha. I wasn’t able to take a shower for over two weeks, until I could find someone to come sit with my husband, because he could not be left alone for even a few minutes. I made do with sponge baths, when I could grab a free moment. Even trying to answer nature’s calls were difficult, as I had to be prepared to jump & run. The best thing people can do for caretakers is be sure they are taken care of as well, give them your time, rather than well meaning advice.

    Reply
  34. Absolutely true, every word! I am a caregiver and I find that when all is going well in my family and I have a moment to help out another, those people usually help me when I need help. Today, I made a chicken casserole and an applesauce cake for one of my son’s paid caregivers who just had surgery and is day #1 back at home. I can do this for him and I know that he will pay back my son and our family many times over. We are in a circle of care. I guess that’s what’s called planting the seeds for future reciprocal care and deepening our relationship. Btw, I had to chuckle at your take on the ‘bath’ – when my son was small, he screamed 24/7 due to severe brain damage. I never had a bath, only showers and I never got more than 1/2 of one leg shaved before I had to jump out of the shower to rescue my boy – often he would have a seizure from screaming. It took me four showers to get my legs shaved (I can laugh about it now!)

    Reply
    • Love that– the “circle of care.” We get so much further working together than we ever could doing it on our own.

      Reply

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