Caregiver Burnout: When Someone You Love Is Chronically Ill

aging manThis evening my local newspaper contained this sad headline: “Maryland couple found dead at home.” A husband and wife, both aged 72, died in an apparent murder-suicide. The wife reportedly had a stroke a few years ago, and the husband’s health had recently deteriorated as well, according to the story. The article quoted friends of the family who said that while the husband was devoted to his wife, he had become overwhelmed by the demands of caregiving combined with his own health problems.

No matter the circumstances, this is a tragic story. While reading it, I couldn’t help but think about the difficulty faced by so many caregivers with whom I have worked. Each one expressed absolute determination to care for his or her spouse without assistance, believing that no one else could do it as well. The loyalty, patience, and nurturing care demonstrated by these individuals are admirable, perhaps even saintly. But nobody, even the most patient person on earth, is immune from the effects of putting someone else’s needs above one’s own day after day, week after week, month after month.

According to WebMD, caregiver burnout is defined as “a state of physical and emotional exhaustion” resulting from the one-sided nature of caring for someone who is chronically ill. The person who is sick does not intend to burden his or her caregiver, but the nature of being unable to care for oneself creates that one-sided dynamic. The spouse who is caring for the ill person may be happy to take on the responsibility of feeding, bathing, and taking his or her loved one to appointments, knowing that were the situation reversed, the other person would gladly oblige. Even so, constant caregiving for a chronically ill spouse can disrupt one’s life in multiple ways. Many caregivers are reluctant to reach out for help, which puts them at risk of burnout.

Help is out there! Caregivers do not have to feel alone.

According to HelpGuide.org, here are some of the signs and symptoms of caregiver stress leading to burnout:

  • Anxiety, depression, irritability
  • Feeling tired
  • Trouble sleeping
  • Increased health problems of your own
  • Difficulty concentrating
  • Increased feelings of resentment about caring for your ill loved one

If you feel that you may have some of these symptoms, please don’t wait to ask for help!

Fortunately, if a caregiver begins to experience some of these symptoms, it is not too late to make changes. The following self-care tips, from CareGiver.org, can reduce caregiver stress and lessen the risk for burnout:

  • Practice stress-reduction strategies. Examples include taking a yoga class, learning deep-breathing techniques, meditating, praying, or chanting.
  • Get plenty of rest.
  • Maintain a routine including nutritious meals and a regular bedtime.
  • Exercise! Walk, run, swim, stretch, or take a group exercise class at a local gym. Try to get a minimum of 10 minutes of exercise daily.
  • Schedule time off from caregiving. Whether you ask for help from a family member, a friend, a neighbor, someone from your religious community, or hire someone from an agency, it is healthy to take a break.
  • Ask for help. People who care about you and your loved one are likely to be glad to offer support.
  • Reach out for support to help you with your feelings. Talk to your pastor, a trusted friend, or a counselor. Many communities have support groups for caregivers.
  • Remember, you must care for yourself in order to care of someone else. There is nothing selfish about caring for your own health.

Your local department of aging/disabilities can guide you to the resources available in your community. It’s important for your chronically ill loved one that you are taking care of yourself while taking care of him or her. You can also find help here. The National Center on Caregiving has numerous outstanding resources to help you.

To find a therapist for help with caregiver issues/stress, click here.

© Copyright 2014 GoodTherapy.org. All rights reserved. Permission to publish granted by Laura Reagan, LCSW-C, Posttraumatic Stress / Trauma Topic Expert Contributor

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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  • Glen

    March 26th, 2014 at 4:16 PM

    This can be so draining on anyone in this situation, but think about if this is someone that you have been married to for a very long time and all you feel like you can do is sit back and watch helplessly as they deteriorate right before your eyes. You must feel so helpless and at the same time it must be quite stressful living with all of the things that he or she then expects and needs you to do for them. You have to be willing to ask other people for help. It would be great if there were people who were always there willing to jump in at a moment’s notice ready to help but unfortunately I think that a lot of times people are afriad that they are intruding so you have to be willing to step up and ask. Most of the time those who care are going to understand and if you just say the word they will be there willing to do whatever you need.

  • ariel

    March 26th, 2014 at 4:44 PM

    Don’t ignore yourself at the expense of another. If you do then you might find yourself needing just as much care as the one you have been looking after and caring for.

  • Ola

    March 27th, 2014 at 3:37 AM

    There are some couples who don’t want to have to be away from each other and this can make it so hard on both of them.
    The person who is sick can feel very heaitant about letting someone else do anything for them which can make it very hard for the other to go out and do something for him or herself.’They have a ear that what if something happened when they were gone and then there would be all of this guilt that they carried with them that perhaps this would not have happened had they been there with their loved one.

  • harry

    March 27th, 2014 at 4:05 PM

    The bad thing is that even though you tell people in this situation time and time again that thye don’t have to go through this alone they have a hard time believing that there is any support for them out there. You have to almost put it right there in their face for them to really see that there is help for the too, Now whether they will be willing to take it that is a whole other ball game but there is a little work to do on all ens=ds to get the to see that they don’t have to do this as a solo game.

  • grace

    March 28th, 2014 at 3:47 AM

    That is such a sad headline that you started off with and yet it is not uncommon. There are so many times that people just reach their breaking points and after so long they decide to end it all rather than go through another day.

    You would hope that there would be a dtronger support system in place to help couples and families like this who are struggling with issues in caregiving scenarios because it can be difficult for anyone involved and can take away a whole lot of time and energy. And in this case and so many others, it can also take away the will to continue to live in both parties inbolved.

    Please, if you know friends and other family members going through this don’t let them go through this alone. We all need help, even if wear e not willing or able to ask for it.

  • Jeri

    March 29th, 2014 at 4:59 AM

    This can be a very stressful time for anyone, and to find a loved one going downhill so quickly can be very traumatic, whether you are the caregiver or you are witnessing a friend or family member having to devote all of their time caring for another. If they seemed to be burned out on it, they probably are! Don’t charstise them or beat them up about it! They certainly do enough of this to themselves already because you know that they probably carry around a lot of guilt because of it! Instead let them know that you are there for them and offer a hand when you feel like they could use it.

  • hank

    March 29th, 2014 at 12:06 PM

    You have to keep your eyes open to the possibilities of what could happen especially if the couple is older and one of them has had to take on a lot more of the work for the other.

    Think about the role reversal that may have had to occur or the things that one has had to give up to be able to fill this role.

    Many times they may not even realize just how overwhelming and stressful this will be until they are already consumed by it, and often since they are so unfamiliar with the role they don’t ask for help because they are not even sure what they should begin to ask for.

  • TIM

    March 30th, 2014 at 9:13 AM

    How about checking in on these neighbors when they are elderly from time to time? You know that this will make them feel good and it will help you keep a check on them to make sure that they are doing okay and thet they don’t need anything.

  • Laura Reagan

    March 30th, 2014 at 6:48 PM

    Thank you all for your thoughtful comments! I have worked as a hospital social worker and as such I met many loving spouses who were overwhelmed by the demands of caregiving but unwilling to seek help. However, that job also taught me that there are so many resources out there to help families in this situation!

  • Laura Reagan

    March 30th, 2014 at 6:52 PM

    Tim – this is a great suggestion. Neighbors can help by offering respite to the spouse or running errands and doing heavy work around the house. Jeri – that is so true. Family and friends can be immensely helpful by offering a listening ear, cooking a meal, offering to run errands, etc. Grace, Harry & Hank – I agree that often people don’t ask for help because they don’t know what to ask for, who to ask, or what they even need.

  • Laura Reagan

    March 30th, 2014 at 6:55 PM

    Ariel, you are right! It’s all about self care! You can’t care for anyone else if you are unwell.
    Glen & Ola – definitely the dynamic between the couple can make it difficult for the caregiver to put his/her own needs first – and I think the love and loyalty felt by the caregiver, combined with his/her concern about the spouse’s health, leads to the caregiving role consuming all of his/her time and energy before he/she even realizes what has happened.

  • Iris

    March 31st, 2014 at 3:54 AM

    I think that you hit the nail on the head wheny ou point out that this is always about putting someone else ahead of you at all times and this can be a challenege for even the most saintly person! You can’t do this all the time and still be expected to maintain normalcy and balance within your own life. This is why I think that you will see so many articles like this that tell you how much you still need to care for yourself and focus on your own needs from time to time. You can’t lose sight of who you still are, because you are still so much more than just this one role in life.

  • jennifer

    June 8th, 2014 at 6:57 PM

    Caregiver burnout is very real and very serious. Watching a loved one become sicker and not receiving help from family members can make the caregiver feel empty inside and very bitter. Please remember that caregivers matter too.

  • Norton

    November 25th, 2016 at 2:01 AM

    Laura Regan, have you considered trying it yourself 24/7 for at least 5 years and then answering the question again. Nothing pisses off a caregiver who is carrying the entire burden because others are not able to or will not help. Stupidly suggesting people check in on their older neighbors is the moder day equivalent of Marie Antoinetter saying “if they have no bread, then let them eat cake” – out of touch with reality and overly simplistic answers. Yes, I am burned out – FEH to all who would advise without experiecing what it is like

  • Shedeservesbetter

    January 13th, 2020 at 11:14 AM

    All of your suggestions sound good on paper…in the real world, without support they are just empty words and dead end directions. My wife is 60 yo with severe self imposed diabetic complications. She has congestive heart failure, ESRD on dialysis, diabetic retinopathy and neuropathy with only about 35% of her vision left. She can’t feel her legs from the knees down, morbid obesity, and just doesn’t follow her medical advise. I have been doing this in vain for three years now since her heart attack trying to get her on board with something. She won’t check her blood like she should, she doesn’t watch what she eats, tries to blow off medical appts and procedures, I can’t get her to counseling, all her medical providers know of this, but there is no impartial solution coming from any…just lip service to close the conversation so I go away.. I was just I formed I have to return to work in 30 days from when I was off. I took off because she wasn’t taking care of herself, my employer doesn’t care. I’m exhausted. We have 2 grown sons who are in denial and avoid us. We were very prominent in our catholic church, and would often visit those sick for 15 years…her depression has forced her to step away from the church, my depression has no desire for me to attend after reaching out for help and being declined. We seldom now get a phone call from them unless it is information for their benefit on something must now do because we can’t. I have contact two counseling facilities in the last two weeks to get in, left messages, no one has called me back. It is like a bad horror movie at every turn.

    I finally resigned myself today to the fact my wife has 3-6 months the way she is living. When she is gone…I have been shown there is no reason or person for me to stick around. I have set aside a cocktail of 1800mg of Lisinopril, 1500 mg of Losartin I will take when that hour comes. I’ve written my goodbye note. Right now I am just trying to convince myself not to check.out earlier so she could get my life insurance and actually to go somewhere that they could take care of her better. The only reason I haven’t so far…I don’t know if that place exist. I sure didn’t see this ending in such a lonely way. If you have loved ones in a caregiver situation…please!!!) Reach out and listen…all really is not ok

  • Elaine

    January 27th, 2021 at 12:07 PM

    Dear she deserves better. I too believed my 5 children deserved better. My therapists were abusive. I had noone to believe in me. I believed these things with all my heart. I was on lists for low-income therapy that took many months to reply etc. So like your struggle. I often “had” to give in to my emotions that want to forget about/annihilate ME but this is more brainwashing than honesty, isn’t it? Long ago, and very young there was no-one there for you, no soothing voice or touch, no-one caring or strong to stand up for you. So you became their ALL. Smarter than the adults, you discovered, determined, and brilliantly deployed the very most safe, secure and lifesaving decision and process to feel loved, lovable, and worthy of Attention, affection and compassion. You do deserve these, yes, I reacted exactly as you … And was dying inside, more and more. You are doing everything you can do to cope, you do know that, but hopelessness and no return requests, phone calls, sincerity or even a recognized need by your sons to be believed and assisted IS deathly, lonely and utterly helplessness and giving-up material. You prefer to die, even she deserves a good life over you and yours. This makes complete sense. Relief, release, reason, resentment, remembering. But what about that little boy saving you gave you real joy? For a very, very long time it served you well. And just as I adamantly demand from God a “man” to adore and take care and “love” me, I am always having to turn around and SEE ME. Brave and courageous, sad and lonely, emotions run amok, spending money, eating and now isolation in my low-income senior building. My kids aren’t equipped to deal so my inner killer still lies in wait, ready and willing to engage in any abusive relationship (isn’t that the only kind I deserve?), fake smiles, staying walled in and unwilling to adore my tremendous amounts of unauthorized support, cherished co.fitment and determination which I seem to give up on any time. So I started going to 12 step meetings. I am addicted to … I went to sex addicts though it was actually “love”; Money addiction; over eating; narcotics – as self hate is my drug; alcohol, codependents anonymous. look for DBT meetings and look online for a DBT therapist, an abusive relationship therapist. Call mental health facilities and find a way to get in their in patient facility because it is URGENT — you are suicidal and you already have a PLAN. This is about your Warrior Spirit dying alone on his sword because his identity has died. She tries to tell you that she too is brilliant. She knows she can get belp. Can you accept she no longer needs/wants your relationship? She wants YOU, in a way…that USES??? I ask. You know you best, if you choose to know you better than the little boy savior, is it good timing? Oh no, you proclaim. I could not.
    Seriously. She takes care of herself and organizations will do everything for her. This sounds like I’m smarter than you. I’m a 74 year old woman and life has been a struggle and my mind is often wrong when confusing me with an awful, selfish, greedy, mean person. You feel tormented, exhausted, in utter agony, living a lifeless and loveless life. You are hanging by a thin string, ready to transform it into a noose…for whom? As a Warrior, you ARE alone (even when you find your excellent therapist), in the thickets and forests of self doubt, and fearful of decisions that may mean you are now wanting to look in the mirror and say, I have my sword of strength. I own my Courageous nature that kept me caring for one who wants not my care. I can use my Awareness to see the Truth of “what is”. I know my Attentiveness is demonstrated through compassion, care and unending work for others: I AM that Other. And I, the Warrior Spirit, now deserve to experience my own (Radical) Acceptance. (It is Radical because your Acceptance, unless of others, is unacceptable.
    I started with books on co-dependence, or caregivers, or suicide, or depression or a good mystery. Because YOU are the detective who assigns himself the honor of attending to his primary and most integral client: guess who?. You, the Warrior. Do you like Joseph Campbell? He is no one recommended by health professionals but oh, the HEROES JOURNEY is the ultimate understanding of love, of God, and of help. I’m sorry to lecture. Look up meetings for caregivers, often at hospitals. And stop asking those fools who have their own agenda for you. You taught them that idea and doors close when they are not life-giving to you. remember now: FOR YOU. TO YOU. IN YOU. Right now. You wrote this plea and I have never even seen this website. Oh. Alice Miller, Melody Beattie, and the Al-Anon daily prayer book. Oh, yes, there is also SMART RECOVERY, groups not 12 step. And you can buy their workbook and the DBT, Marcia Linehan, DBT workbook. It has saved me. Stay a while longer. Make that Radical statement: ill care this much to see if I can do it: just ENOUGH. ENOUGH is ENOUGH. Plus. I like. And for now, JUST DONT MAKE IT WORSE on yourself. You are a tender, precious, life solving, long loving holy and whole afraid and brave, fearful and aware, sad and desirous of direction, Spirit of all men, of all lost, of all found again. Because you are the Journey. I am a man of integrity and love, of peace and joy, of determined and delightful integration and balance. Because of me, I am here, I help, I care, I admit my Incredible ability, which I am learning, to sense what I need, to walk what I want, to wash away my thoughts of unworthy Warrior, for I have the sword of Goodness and Light of God within me. Amen to you. I honor your journey and your letter today, January 27, 2021. Elaine. I am not a professional in anything except in living. I am working on it.

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