Caregiving is stressful. I’ve been a caregiver for more than 18 years and, as time passed, became more aware of stress. My husband (the caregiving recipient) thinks some of my stress is self-induced, but I don’t agree with him. From my perspective, stress is built into the caregiving role. What are some causes of caregiver stress?

Lack of help

By its very nature, caregiving tends to be an expanding role, especially if you’re caring for a loved one who has chronic illness. With help, you can accomplish daily tasks. Without help, you fall behind, and this generates stress. Every morning, holidays included, an agency caregiver comes to our house and gets my husband up. The process takes two hours and enables me to get through the day. Our health insurance doesn’t cover this service and costs us $25,000 a year.   

Endless tasks

My husband’s aorta dissected and he had three emergency operations. During the third one he suffered a spinal cord injury that paralyzed his legs. When he awakened he couldn’t move his legs at all. Today, thanks to physical and occupational therapy, he can move both legs, and walk a few steps. Still, he requires lots of care and I’m always behind on laundry, grocery shopping, and errands. Falling behind stresses me and may stress you.  

Financial worries

Although we have good health insurance, we have prescription co-payments, and high monthly bills for supplies. I worry about money constantly. What will happen to us when our money runs out? Many family caregivers ask themselves this question. About the only thing we can do is monitor the budget, cut back on expenses, and hope things turn out for the best.

Medical tests

Waiting for the results of medical tests can be nerve-wracking. Weeks can pass before the results arrive, and the longer you wait, the more you worry about your loved one. In fact, you may be experiencing anticipatory grief. While I’m waiting for results I try to divert my mind to things I enjoy—cooking, reading, and decorating. This strategy works most of the time, but not all the time.  

Anticipatory grief

Diana B. Denholm, PhD, LMHC, calls these feelings “living grief.” In The Caregiving Wife’s Handbook she writes about the time before a loved one’s death. Denholm thinks it’s best to face grief head-on and cry when necessary. “To me, it almost seems as if people have a certain amount of tears, and the sooner they get them out, the better. Holding them in isn’t going to help.” I’ve experienced anticipatory grief many times and agree with Denholm’s assessment.

Referral and aftercare

After being hospitalized for eight months my husband was released to my care. He was home a year and then referred to physical therapy. When therapists had done all they could, he was referred to a health club and asked to use a special bike there. The health club dues are high. Sometimes we have to wait to use a bike because there are only two of them. Wheelchair van parking is also a problem and this stresses both of us.

“Stress overload causes people to be stupid,” Gail Sheehy writes in Passages in Caregiving. I’ve lived this sentence and done foolish things, such as putting a comb in the refrigerator, and losing electronic car keys, which are costly to replace. I think we have to be kind to ourselves when we’re stressed. A good laugh helps too. So keep your sense of humor handy and take a short breaks from caregiving. Both will help you to feel better.


 

Harriet is the author of numerous books, including Affirmations for Family Caregivers.

Written by Harriet Hodgson
Rochester resident Harriet Hodgson has been a freelance writer for writing for 38 years, is the author of thousands of articles, and 36 books. She is a member of the Association of Health Care Journalists and the Minnesota Coalition for Death Education and Support. She is also a contributing writer for The Caregiver Space website, Open to Hope Foundation website, and The Grief Toolbox website. Harriet has appeared on more than 185 radio talk shows, including CBS Radio, and dozens of television stations, including CNN. A popular speaker, Harriet has given presentations at public health, Alzheimer’s, caregiving, and bereavement conferences. Her work is cited in Who’s Who of American Women, World Who’s Who of Women, Contemporary Authors, and other directories. All of Harriet’s work comes from her life. She is now in her 19th year of caregiving and cares for her disabled husband, John. For more information about this busy author, grandmother, wife, and caregiver please visit www.harriethodgson.com

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68 Comments

  1. The ONLY self-induced aspect of caregiving is that we selflessly give of ourselves and volunteer to care for others. Period, end of story.
    Reality is that caregiving is extremely stressful, each and every day, and depending on the illness it could be CONSTANT as in every single minute.

    Reply
  2. If you have to ask why caregiving is stressful then you obviously have never been a garegiver.

    Reply
  3. Dealing with my husban’s Parkinsons, dementia, diabetes and just had a couple of stunts put has put a lot of stress on me. Then I also work. A couple of weeks ago after him giving me a hard time which is happening a lot more. I woke up in A-Fib pain in chest and in my jaw. The ER had to put me out and hit me with the paddles to get the heart to go back normal beating. Had the valve replaced and some repair because of A- Fib. The doctor has told me that I have to think of me from now on. I did find out did also have a small heart attach. Sorry so long looks like my caregiving days are over

    Reply
  4. … sad thing about all of it is that no one ever thought us how to self-care or how to care for someone – its just like motherhood – self-thought and taken as a ‘must’ or its natural!

    Reply
    • do you still work as a caregiver? we need to get one for my mom. shes in a good state of health and very nice to be around. DM if you are interested. Thank you . We are offering $400.00 per week

      Reply
  5. Another stressor is having to stare into the abyss of meaninglessness each day. I cared for my husband for 20 years at home. He had behavioral variant Frontotemporal Dementia, and he totally lacked empathy, was apathetic, and completely uninterested in anything at all. Prior to his dementia, he was loving, kind, curious, and very empathetic. To see his brain betray him, and by extention our four children and me, was the greatest stressor of all for me. However, I agree with all your points too. I wrote a book about our experience called Dueling With Dementia: Not the Love Story We Planned. Writing is, as you know, very cathartic. Take care. One day, the caregiving will be over (for us, it was last October), and then all the lovely memories that you thought you’d lost to the drudgery of caregiving come flooding back.

    Reply
  6. Probably true but WTF ya gonna do about it. Did it come in the class???

    Reply
  7. I haven’t read what everybody had to say yet but most patients especially sons and husbands have no compassion or gratitude

    Reply
  8. Don’t let anyone tell you different. If you’re a caregiver you know.
    It’s all real.
    From one caregiver to another 😉

    Reply
  9. That was typical of the recipients in my care. Self induced indeed. I was honour bound to care for them, and I did a good job. I’m not sure why it was impossible for either of them to put themselves in my shoes. I’m hoping I learned well from this, to keep my own affairs in order, and put myself in a care home when my own time comes to need one.

    Reply
    • do you still work as a caregiver? we need to get one for my mom. shes in a good state of health and very nice to be around. DM if you are interested. Thank you . We are offering $400.00 per week

      Reply
  10. I care for my husband and he says similar things.

    Reply
    • Sorry about that. do you still work as a caregiver? we need to get one for my mom. shes in a good state of health and very nice to be around. DM if you are interested. Thank you

      Reply
  11. This is not self induced! When you care and provide another human being with constant touch, constant interaction and no time to care for yourself it is a recipe for disaster. A maid may get a day off, but a caregiver is always on duty. It is a hard job to have and to do well.

    Reply
  12. Caregiving for some means taking care of an individual 24/7 with NO relief. Extended family are happy that they don’t have to, will not offer a break, or money to provide a break to the caregiver. It is stressful and depressing to all that have no life but that they share with the elderly disabled.

    Reply
  13. Who holds responsibility for learning to manage and self-regulate emotions as part of a care-giver’s self-care plan?

    Is it the person being cared for? The recipient?

    Or, is it the care-giver’s responsibility to learn to manage stress, to manage self-talk, to balance care-giving with other activities, and to self-regulate emotions?

    If we resent the one we’re caring for, and haven’t made a decision to take responsibility for ourselves?

    Yes, we will self-induce emotional damage upon ourselves, and we will, mark my words, end up with Compassion Fatigue or Burn-Out due to the fact that we did not learn how to put ourselves FIRST in the equation, by learning what we need to learn in order to survive, in a healthy, strategic, and quality way: the very hard work of care-giving.

    Whether that care-giving be delivered to a family member who needs us, or if we are professional care-givers, we hold all responsibility to manage our personal self-care.

    It is what it is.

    When we face ourselves, and the reality of our personal responsibilities to self-care, then care-giving takes less toll over time.

    We can’t escape reality. We are, in fact, often, our own worst enemies.

    Burn Out?

    You’ll start taking that out on the one, or one’s you’re caring for.

    Which is an outcome neither deserve, when self-care can rectify the issues.

    ~ School of Hard Knocks

    Reply
    • Daren Gregory – Your post is logical, but it comes across a judgemental, and as if you may not have been a long term caregiver of a family member. Perhaps this post was intended for those who have chosen care-giving as a profession. A “care-giver self-care plan?” That’s funny.

      Have you been the primary caregiver 24/7 for years on end?
      If so, more power to you to act on your words.

      My experience is that, as strong, logical, knowledgeable as we may be about “self-care”, we are not generally able to put ourselves “first” when we are in 24/7 care giving mode with a family member. Taking a 10 minute shower becomes a luxury. Changing mom’s foul diaper is more important than my need to “self-care” More than a few hours sleep becomes a luxury, when mom wants to get up in the middle of the night to walk to her “old house” and starts screaming because she can’t find the doorway (macular degeneration)

      Self-care (sitting alone with the bathroom door closed) takes a backseat to the one you are responsible for many times, when you have to be on guard for falls, emotional confusion and anger for no apparent reason from the one you are caring for. Respite caregivers help! (Ah, I can go go the store to get groceries!), but the one cared for seldom leaves your mind. Self-care is hard when you are beyond exhaustion…. my mother with Alzheimer’s passed on, now I can rest, knowing I did well with her care for over two years.

      Reply
    • Don’t shoot the messenger. I’m a disabled paramedic with PTSD, Depression, and Substance Use Disorder. Although the traumatic experiences on the job know not a boundary, I did not care for myself across a 16 year career. For a time, I was working both as a paramedic and a social services care provider, supporting persons with intellectual challenges. I was too, during part of this time, a manager of services. I did not understand that self-care was the number one priority required to maintain resiliency in career. So, with all due respect, I know of what I speak. I wish not one care-giver, whether family care-giver, or in profession to end up where I ended up. I’ve lost two families across my illness due to family members not getting on board and learning what they needed to learn to not take my symptoms personally. I survived a suicide attempt in 2015. I could have survived my care-giving careers, had I had someone with lived-experience inform me of the consequences of not putting together a personal, self-care plan. If we’re just winging it? Yes, care-giving will suck us into a 24/7 giving of ourselves to others. I was on pager at the end of my career as a paramedic 300 hours/month. No judgement. Acceptance of reality, and as I shared above? That comes from The School of Hard Knocks.

      Reply
    • Would we rather accept our often go-to emotional self-defense? Demonize the one we care for, who although might be straining, stressful, and difficult, the recipient of care might well not have the skills necessary to self-regulate their own emotions? This is very real with persons with intellectual challenges. Behavioural issues are often violent from the folks I worked with. We either live and learn? Or? We will unravel. I don’t want anyone unravelling myself, simply because they did not know that they too matter enough to construct for herself a self-care plan.

      Reply
    • If anyone’s stuck in a 24/7 cycle of care-giving? Then it’s time to insist that we get help. If that takes a head-on assault on systems? Then? That’s what I now do with my time. I advocate directly against Government and Policy Makers for change in our systems, who are, here in Canada, in regards to keeping care-givers safe (physically and psychologically) in the professional world, across the board: not fulfilling their duties in terms of provision of education to keep us safe in our work. Here? That’s criminal, and myself and others are now preparing a legal challenge, constructed around this piece of Canadian, Criminal Law: http://www.ccohs.ca/oshanswers/legisl/billc45.html

      Reply
    • Very judgmental especially if you have injuries that you can’t completely recover from.

      Reply
    • Youre lucky you live in Canada. Spousal caregivers in the US are treated like trash if we open our mouths.

      Reply
    • I know my intent is non-judgemental. If judgement is heard, then I’m sorry, but we do, as care-givers, have responsibility to ourselves towards learning self-care. Again, I want no-one to end up with their life destroyed, caring for others and not caring for our own needs, creates a perfect storm that, yes, folks often don’t recover from.

      Reply
    • Angela Morrison It’s the same here in Canada. That’s why I advocate for change here.

      Reply
    • I lost two spouses, both encouraged to learn, both encouraged to involve themselves in ways to learn along with me: they both resisted, and both now too pay a heavy price. They were afraid of opening Pandora’s Box by entering into family therapy, and the outcomes, for all of us, my kids too? Now speak for themselves. I know other First Responder Families in which spouses did learn all that was necessary to protect themselves emotionally, and those families are now stronger as a result than they’ve ever been prior to psychological injury and resulting PTSD invaded their family home and life.

      Reply
    • I won’t enter another relationship: School of Hard Knocks struck again.

      Reply
    • My last partner made her life’s work as a seniors care provider, and her skills? Hospice and witnessing repeated death-which she brought unconsciously to the table. The only way to protect ourselves is to develop high-skills in self-awareness.

      Reply
    • You say you don’t mean to come across as judgmental. You might want to work on that.

      Reply
    • We have an issue with perception of others perhaps.

      Reply
    • We can make a choice to learn self-care skills, or the work of care-giving will force us into it. I’m speaking of my own mistakes more than I am anyone else’s.

      Reply
    • I have ptsd and his neurologist mocks me when I mention it.

      Reply
    • I had to leave the marriage. Husband’s so angry he said he’d destroy me.

      Reply
    • That isn’t your doing. You’re trying to be heard. That’s on the neurologist. We’re still swimming up stream against uninformed physicians in Canada too. They hate to have to admit to anyone that they lack the knowledge we need in order for them to treat our issues with respect, maintaining our dignity. That neurologist has an ego-defense running inside of him that could use some adjustment. That’s on the neurologist. Not you. I won’t own my own doctors stuff: and at least my current shrink now knows that. Our relationship shifted, simply because I stood up to him, and now? He’s willing to accept the information I take him, as he sees the value towards assisting other patients.

      Reply
    • Darren, I hear you and in theory I absolutely agree, but I will share something with you about delivery. You are stating the facts clearly and concisely and they’re all good ones, especially since you have experience in this from several differing perspectives which is invaluable. Quite frankly, have you thought of writing a book about your experiences? I think that it would be valuable! But I will give you this one caution which is from my own experience. When expressing these facts it helps to realize that the very people who need to benefit from the wisdom might not be able to ‘hear’ you from the tone in which it comes across. I used to be very involved in spiritual practice that teaches those vary things you speak of. While I was not quite in the place where I am now, I could take it all in and be proactive in my own care, even though my caregiver recipient is my 96 yr old mother who is a narcissist from hell, so to speak, who I have lived with in a 1 bedroom apt (her’s) for over 13 yrs now. Her declline has been gradual and now she is on hospice and bed-ridden for the most part. I have been totally overwhelmed while managing caregivers, the legal system, hospitals, rehab/nursing facilities, working part-time to keep the roof over her head and mine, and various financial disasters for about 5 yrs now. I’m sure that you have experienced that feeling of simply not being able to put one foot in front of the other or thinking one more thought or feeling one more feeling and I think that most caregivers get to this point one way or another. Mom at least has insurance that pays for some in-home care, but there are no other family members and very few friends, most of who haven’t got a clue about what this takes or don’t want to, who can give me a hand to take some of the pressure off. When I’m in that state, I simply can’t hear one more person, well meaning or not, telling me that I need to take care of myself. We’re not clueless; we know about the things we need to do to stay sain and well, we just can’t hear it or excute it when we most need to. Bottom line, it’s necessary, but often times simply out of reach. Every one of us is unique but I think that all of us need to feel that someone who is trying to help us, is also empathetic and understanding in the delivery of their help, whatever that may be. It’s frustrating for the one trying to be of help just as it is for the one who needs it, it’s true, but sometimes a ‘softer’ delivery can open the door where the ‘facts’t simply fell flat. This I have experienced in spades and when I’m approached with ‘I would love to share my experience with you; I think it might help’ instead of ‘these are the facts and you have to do this, or you’ll regret it’, I can hear the message as opposed to wanting to simply slap someone for pushing it in my face. Darren, I’m serious about you writing a book and giving us the huge benefit of your experience, please consider it!

      Reply
    • I’m aware of that, thank you. Some things we can’t be soft with, I’m afraid. Reality might be difficult to look at, but without a reflection on issues from the place that’s real? We won’t grow and more care-givers will suffer, some quite tragically. The truth and facts might be difficult at first, and might push a button. But it isn’t my button. If I worry too much about a reaction? I’d be back to censoring myself entirely, and I simply don’t have the energy to have to worry about responses any more. Thank you for the advice on the book. That world and I can’t shake hands. One must be willing to pretend too much, in order to market the material. I shared the outcome in my own life as a care-giver. Of course folks aren’t clueless. But? I thought I was one of those, until it was too late. I don’t attach to outcomes with my sharing. If it gives folks something to think about? THAT YOU MATTER AS MUCH AS THE PEOPLE YOU CARE FOR (not yelling, by the way): Been there, done that. I choose to advocate for change as a volunteer here at home instead of writing books and ending up on a gerbil wheel with marketing.

      Reply
  14. It’s easy for others to say. Easy for others to diagnose someone else.

    Reply
  15. That could be considered as a manipulating comment- blaming and keeping you off balance. Be aware abuse is not always overt. Even the doctors love to use it against you when you requestva respite.

    Reply
  16. The lady friend sounds like she needs to be “shown the door”! It’s ok to give people a “permission slip” to Go Away!

    Reply
  17. It’s particularly stressful for me because my elderly father’s younger lady friend is causing me a lot of grief and problems that would not otherwise exist!!!!!

    Reply
  18. People who “benefit” from a caregiver, tend to minimize “Caregiver burn out”! If you are feeling and experiencing Burn out…then you’re not imagining it!

    Reply
    • And when the caregiver leaves will even accuse you of abuse

      Reply
  19. Funny. I am in the Urgent Care and on our way here my husband said the same to me. And told me I need to quit stressing.

    Reply
  20. No one will ever understand until they’re in your shoes. Caregiving is a 24/7, no breaks or days off. Besides falling behind on chores/tasks there’s also dietary concerns and most importantly, sleep depravity…

    Reply
    • I agree i take care of my husband who has cancer and Parkinsons

      Reply
    • I couldn’t have said that better myself, I’m no longer a 24/7 caregiver to my quadriplegic daughter, due to age & health. Stress is a killer no doubt about that. We were able to put my daughter in her first home of her very own & between services & private duty aids, I now only fill in or help when needed. I’m so thankful for the blessings that came our way , though many were hard fought for. We can now just enjoy being Mother & Daughter .Of course I’m not foolish enough to think there will be no more hardships but I’ve learned to take each day as it comes and put it in the Lords hands. Would I do it all over again, all the sleepless nights & stressful days? Yes in a heartbeat.

      Reply
    • Agree! My journey ended when my mother passed away in January. Now I sit looking at all the chores I pushed aside while caring for her. I would do it AGAIN in a heart beat! Now I cannot deal with cleaning the house and run away only to return to what needs to be done. I usually take a bath and get into bed rather than deal with house work. It takes a toll on us in more ways than one. BUT I WOULD DO IT AGAIN!

      Reply
    • do you still work as a caregiver? we need to get one for my mom. shes in a good state of health and very nice to be around. DM if you are interested. Thank you

      Reply
    • Would i take care of my husband again YES and still do. But i started doing things different. My husband has a feeding tube don’t know how much longer he will have to use it. But my hands can no longer feed him 6 times a day. So i called VA and got him a feeding bag i hook it up to his feeding tube. That gives my hands a rest… i have arthritis in my hands. I still feed some pills still by the tube but it’s much better feeding him with the feedind bag. Now i am starting to figure how i can make other things easy for myself. Wish i thought of it earlier. 🙂

      Reply
    • Sue Cruse If your husband is a vet he should qualify for Aid and Attendance; or Housebound benefits to help you out.

      Reply
    • Gale, he is a vet. I only ask for help when i need it. It was Va that didn’t tell my husband he had Cancer, my doctor found it 4th strage BUT he is ok now. The radiation burnt his throat will bad. But he is in speech therapy and has his esophagogas done every 6 to 7 weeks. We are bless that the doctor found it. As for the VA it’s on paper they forgot to send him the letter and his doctor did not call him. You know VA slow about somethings. So we just hope and pray it doesn’t come back on him. Because we were told it could.

      Reply
  21. I’m stressed because everything is on me, the entire weight of keeping our lives functioning.

    Reply
    • Sorry about that. do you still work as a caregiver? we need to get one for my mom. shes in a good state of health and very nice to be around. DM if you are interested. Thank you

      Reply
  22. I don’t believe it is ALL self-induced. It is all of these things mentioned in this article. It is dealing with all of this and the patients personality, strong will and stubbornness.
    PLUS… making all the decisions, being forced into the role of a medical professional in regards to some decisions and not having a clue! THAT is stressful and there is no way around it!

    Reply
  23. For me, it is the up and down of my mother’s health. One day, I do not think she will be alive tomorrow and the next day she is better. I go to bed crying and stressed and get to do that all again day after day.

    Reply
    • do you still work as a caregiver? we need to get one for my mom. shes in a good state of health and very nice to be around. DM if you are interested. Thank you

      Reply
    • My Mom is 101 and still going strong so I have all I can handle.

      Reply
  24. for me, some of it is self-induced– being responsible for life and death can do that to a person

    Reply

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