You’ve heard the term “caregiver burden”, right? It’s the stress and strain that comes with caring for someone who is ill, elderly, or disabled. Lots of people don’t really like it, since it can easily seem like the person you’re caring for is a burden.
I was thinking about this while reading the story of The Perfect Servant. She’s really honest about what a burden caregiving can be, but it’s also clear that the love her and her husband share is incredible. We don’t want the person we’re caring for to feel like they’re a burden or to further stigmatize their condition.
Is there a better term? How can we talk about the stress of caregiving without placing blame on the person we care for?
I am reaching a new level of care for Deb as she is incontinent of bowel and bladder to the point that she has lost all control. Her MS is putting her body thru some new changes. Her fatigue is such that a lift may now be getting close. My own ability to care for her as a 66 year old man is being called into question. I bring this up to address the word “burden”. Is it now a burden to care for a woman I have been married to for over 32 years, who has always given more to me than me to her and has been in a w/c for over 7 years and I am her nearly full time caregiver. To say it is not burdensome physically and emotionally is naïve and dishonest. However, this burden is filled with that intangible gift of love we have been given and I want to share and honor that with her.
Jerry
It’s like I have been trying to instill in my son, there can’t be blame. It’s an awful word to start with, when you consider the meaning. Things happen, it’s called life. It’s called what God and Jesus hand to you and expect you to do right by. I firmly believe in both God and Jesus. God picks who we are, boy or girl, short or tall, autistic or not. Jesus gives us our heart and soul, and expects us to love unconditionally always.
My son didn’t ask to be autistic any more than my dad asked to suddenly grow weak and unable to take care of himself 100% of the time. I certainly did not ask to deal with chronic pain, PTSD, have my neck fused, and more. Blaming or saying someone is a burden disrespects God, Jesus, and the person who has become dependent on others in daily life.
I would encourage someone to seek counseling because it really helps. If not counseling, find that someone who would not mind being a sounding board. Not to give advice as much as there to listen to the struggles, the
fears, the joys and the frustrations of being a caregiver.
Most important of all, find that time for yourself. 15 minutes here, 15 minutes there. Read, listen to music, watch a favorite tv show, it doesn’t matter as long as you are giving yourself time to focus on something other than the person you are caring for. Balance is key to not feeling the need to use the word blame.
Mimi
How about “moral responsibility”? Caregiving applies to the circumstance but the heavy feeling of a burden comes from outside the role of a caregiver. These emotions stem from a desire to believe in hope for humanity. That no matter who or what we are, when faced with a need, at the stake of human condition, we will take action… We care cause we relate to the fact that might easily be the one in need and I hope the same moral conflict in others will still exist and someone will be kind enough to help me!
As a caregiver to a loved one, there are different levels of emotion before the sense of burden comes along. And once it does, then there’s guilt for feeling burdened. That comes from not getting those much needed breaks for ourselves.
Teresa
There is a wide range of emotions that come long before one falls into the ‘burden-guilt’ trap…but something we don’t talk about often for caregivers is the need for self-care. I was fortunate enough to hear an interview with a caregiver (on CBC – Sunday Edition) just a few months before my caregiving journey started in earnest. I learned a few things: the importance of accepting help and the importance of taking time for myself. I’ve only faltered when I didn’t do one or the other (or both!)
Honestly – I don’t feel burden or ‘why me’ … I feel blessed that I have so much support in my life. For my husband, I only feel love. As much as I’ve been his caregiver, he is my rock in so many other things.
I know I am so very fortunate. and for that I’m grateful. For me, there is no burden, just love and gratitude.
Sylvia
I am a nurse practitioner. In the field of nursing we call it “burnout” when the burdens of caring and providing for others fatigues you to the point of exhaustion and inability to often meet your and/or your family’s needs.
Donna
It is a challenge.
It is a burden.
Above all of that it is a responsibility.
Caregiver Responsibilities.
We are the capeless heroes that never get a casserole.
Kim
I have given care for years to various ones. First as an RN and then as a mom who had a terminally ill child, then, my parents. Still in the midst of caring for my mom. I liken the fatigue I felt with my son, as PTSD. I didn’t realize it at the time. Burnout is another term I’ve used. Fatigue is yet another term. I don’t think I’ve ever placed blame on the person I’m caring for, but more on myself for not being able to meet all the challenges.
I love what I do, I would not want it any other way. What we, as caregivers extraordinaire, need is the ability to find time away to regroup and recharge. We need the ability to not go broke in caring for our loved ones. That alone, would remove stress from our lives. Tax laws should be changed to give us a break on this. We are keeping our loved ones from becoming a burden on society on the tax payers dime. I try to remember that I am serving my Lord and Savior as I care for my mom. I am honoring my parents, as is commanded. May God bless each of you, as you care for your loved ones.
Sherelyn
It does seem like any concern is a complaint when it is not. It is just a plea for how something can be done better or easier for both. This is definitely a learning process but one that has no room for error on either side.
Diane
I place all the blame on myself, why not everyone else does. I’ve been taking care of my parents for 20 plus years, I even bought the house next door to them for convenience.
My dad passed away last March on my mom’s birthday so now it’s just mom. She has COPD and its very bad. She only goes on 3 rooms of her house and has anxiety issues that prevent her from leaving her house, period. This is a constant battle with her because she does not allow me to be gone because she will panic. My family is headed out the door at the moment to go on a much needed fishing trip and I get left behind. I do not resent my mother for this.
I am sitting here waiting for her to ring the wireless door bell I have for her letting me know she up so I can do our daily care routine, I do not resent her for this. I love my mother and would never leave her in a million years, but it’s exhausting at times because she has no zest for life, all she wants to do is smoke (she’s been quit for a while now ) she asks and I say no, she resents me for this, I feel guilty because I am not giving her what she wants, it’s my fault she’s not happy and she lets me know about it to, this is where I resent her attitude towards me.
If I give on, she will end up in the hospital just like every time before and its my fault, my family says so, and so do I. Its not burn out exactly, it’s not knowing what to do when she gets like this and no matter what choice I make it comes down to her health or her happiness.
Genie
My burnout and frustrations came from family not working with me as a team to help take care of Mom … And accusing, ridiculing and blaming me for the dysfunction.
Linda
I’ve been a caregiver for six years for my,now, 91 year old mom. Once she said to me; “I feel like I’m a burden to you.” I knew that denying that would be a lie so I said in a soft and loving way; “yes, sometimes caring for you is a burden just like I was to you when I was young and you were raising me as a single mother. But that doesn’t mean we give up just because something is challenging. Our love, commitment and loyalty means we stay and we persevere. My dog got me up three times last night and that was a burden but that doesn’t mean I give her away or that I don’t love her.”
My mom nodded and replied; “I’m so grateful to you.” And my response was; “I love you and I’ll always be here for you.” Something my two older sisters know nothing about.
Kellie
Caregiver stress syndrome is a much better term. There are degrees of it just like any other syndrome. Burden allows the greater society to continue to ‘blame the victim’. We blame the person who took on the role of caring for another person instead of providing adequate services and supports.
And for those who don’t want to be called caregiver: this is why we do it: in order to access services and supports we have to call the person giving of their love, time and effort something. The political will to support ‘grand daughter’ or ‘husband’ or ‘wife’ doesn’t exist in the US.
Those of us in caregiving research often wore the same shoes and walked the path. We use the term caregiving or care partner or dyadic care in order to try to get the local, state and federal funding to assist those who provide care. We don’t do it without thought.
Jeananne
It is what it is. And it’s not the patients fault, but we have to acknowledge the true weight of what caregivers go through.
Michaela
You can come up with something a little more tactful, yes, but there’s no positive spin on what it really is.
Penny
The biggest burden when caring for my mother was dealing with hired caregivers who thought they knew more about my mother than I did and who didn’t take care of her properly.
I have been a caregiver in one way or another for the last 63 years since I was 10 years old and have experienced every situation and every emotion one can feel as a caregiver both positive and negative. When I began taking care of my partners what I found was that all of my expertise as a caregiver even though I was learning by the seat of my pants was going to be not enough. In many of the situations that I had been involved in I found that there was a team involved. It might be the family, neighbors, community, the church, or many other situations that would come together to make the quote unquote burden less of a burden. What I found when I started and I was alone doing it, I had to leave all of my baggage outside the door before I went in to deal with whoever I was taking care of. I recall one time I came in to the room of a client that I was working with and complained about my day and of course him having cerebral palsy and I knew him for 27 years, he looked at me and said you think you’ve had a bad day? Why don’t you lay here for 24 hours a day and looked at this freaking ceiling and see what a great day you have been. That’s when I realized it was my duty if not my purpose to make his life a little easier rather than putting my baggage on his chest. Most of the team I found were basically taking care of me, cleaning the house, making sure the car was taken care of, sometimes doing laundry or groceries but most of all making sure that my job of taking care of the house and life itself was easier so that I could concentrate fully on the caregiving part of my life. What I found about the teamwork was that they did it willingly and without a question. It also made me realize that my caregiving skills were right at the top at this point because I didn’t bring my baggage in and that made my partner’s life worth living again and we could share more experiences rather than complain and argue whether it be about money or exhaustion or anything else. Because of my experiences I wrote a book. It is my journey for the last 63 years right up to covid that I had to share basically because when I was caring for somebody in the 80s I found out that there were no books or instructions about how to be a caregiver for a loved one. Most of the books out there were for nurses doctors and medical issues. I have always been one to look at a problem like the burden I had as a caregiver and finding the solution which turned out to be the team. When you look at the fact that we have over 50 million caregivers of loved ones in this country who don’t get paid if you had a team for each person of even five people that would increase the population of people taking care of others to at least 250 million. I have been on a mission to get the government and actually the whole population of the United States to understand the burden that we undertake as caregivers and to find ways or solutions that will make it palatable to become a caregiver and not drag everyone down including the family, the one being cared for and especially the caregiver. The joy I have had since I have found this Awakening as a caregiver is so far beyond what I had expected that I wanted to share this with you guys. Having that team and at times it fluctuates and also people leave in new people come in, is the one thing that saved me from my sanity and my health going downhill and I really believe it prolonged the life of the people I was taking care of. But I have to tell the joy was overwhelming and not just for me and the person I was taking care of but the people involved we would almost have weekend parties or get togethers which built up the social life of the person we were caregiving for. So if you see it as a burden look for your team and build it, it can be neighbors, family although family is usually the hardest, friends, Church which is one of the best sources I found and even people who are you meet in the hospitals. I also spoke to the doctors to see if they had solutions.
Very true. My Mom was not a burden at all !!!
Caring for my wife at home didn’t last long enough for it to become a burden.
Because our business was home-based, I was used to being around the house a lot, and only going out to see customers on specific days.
Most of our clients had been with us for ten to twenty years or more, and readily understood if I couldn’t come see them at that time.
Since my wife was only home bound for the last seven weeks, it gave us more time together than most non-retired couples would have had. When she passed away suddenly, the night after her Oncologist stated his goal of sending her home for the weekend, my long-term plans to be her caregiver ended almost before it started.
The real burden began when I had to transition from being married for forty+ years to living alone, adding all of what Sandy took care of to my responsibilities.
I wouldn’t wish her back, as I know she’s in a much better place, but I was planning to be her primary care-giver through Chemo, surgery, or whatever came her way.
exhaustion
I am my husband’s caregiver! I vowed to love and honour in sickness and in health forsaking all others keeping only unto him 45 years ago!
There’s a reason caregivers have been known to die before the people they are taking care of. Bottom line is, it’s not a one person job. Though this is so very often what it becomes.
I was always torn using the word burden and having it used for me. I didn’t want my parents to think they were a burden. Even today one of my sisters starts to say that it was work taking care of my parent, when in the grand scheme of things they did very little before we stuck my parents in a nursing home. Then she said that it was tiring work. I told her that doesn’t she think my parents got tired raising us, and I said that on purpose because my parents chose to raise two of my sisters. So that was work they took upon themselves. No my sisters didn’t ask for, the same my parents didn’t ask to get sick and need us so much. But, just as they did for all 3 of us, we needed to have done for them. Instead we stuck them in a home. When my parents conceded, I did too. I couldn’t do it alone.
A burden? No.We learnt humility,faith,patience and found out how powerful Love was.
Why look for a euphemism for ‘burden’.? So others can say, ‘Oh, it’s not that bad. After all, you’re doing it for a loved one.’ ?
No there is not. It’s a burden. That’s just exactly what it is. No plus or minus here. Just good old fashioned neutral burden.
My Parents were never the burden – if the roles were reversed, they would have done the same. Stress with the system, doctors and family members that argued with me when I asked for their help was the burden. But I survived, grew and learned what real love is.
You hit the nail on the head.
I will never regret anything I have done for either of my parents! My siblings were the burden along with everything Patti said!
Agree 100%. Its a horrible feeling when you need a little help and you receive nothing from the other 2 adults living in the home….Karma is a bitch!!
Now my 86 yr old dad says he isnt going in any home. Well he put the wrong kid as his POA….My brother will put him in a home!! I need ti just point blank the man!!! If he doesnt listen. I tried and offered myself!!! Ugg
I look at it as a blessing instead of a burden , that God felt that I was the right person for the job …. my mother couldn’t help having a stroke , but I can certainly help her , she would have done the same for me. It’s all about perspective and most importantly LOVE !
we’re doing it for two 90 year olds so understand
Yes, it honestly is a burden. I didn’t ask for this, but my husband didn’t ask for a stroke, either. But…there are many days I’m sleep-deprived, tired, grouchy, and feel totally put-upon, like a over-burdened servant, with an unappreciative master. Other days, not so much tired, if I have had more than five hours of sleep.
Truth…even when I’m sleeping I’m on call, so I know it isn’t GOOD sleep…I wonder some days if she will outlive me….
I just moved in my moms bedroom…When she moved about I knew she was safe and I didnt have to get up at that moment!!
Using a baby monitor…invest in something better for visual watching from another room!!
My mother passed in 2010 and I helped care for her at home until we got her into assisted living. In the meantime, my husband was gradually getting worse with the MS. Now I care for him all day, every day. This isn’t what we hoped for after he retired! I lo v e him, but am not sure how much longer I can go on. I’m 69 and getting more tired by the day.
I cared for my Dad until he passed in 2000. I helped care for my mother-in-law until she passed in 2003. I helped care for my brother until he passed in 2004.
Caregiver exhaustion
24/7 365/366
No there is not a better term. It’s a burden.
I often think of caregiving as “the most meaningful job I never wanted”. Not because of physical and emotional challenges, or the inevitable toll. But because it means that your loved one is in need of care. No one wants to be in that position. If life were perfect, everyone would be well. But life is imperfect. We are handed roadblocks and obstacles, and the paths we forge around them are some of our greatest learning experiences. I mean that for both the caregiver and the person receiving care. We rejoice in the triumphs, however small, because that means we’re not being taken down by this life. Not today, anyway. So perhaps I’d re-brand caregiver burden, which places an unfair onus on the care recipient, as ‘caregiver strain’. To deny that it is difficult at times (for all involved) is to be untrue to the circumstance.
It’s not just the stress and strain mentally and physically. It can ruin you financially. Why do we keep trying to come up with other terms for this? But I would call this situation: caregiver conundrum.
In some ways, they are completely separate. My feelings for my dad are polar opposite of my feelings for the tasks and chores (burdens) that I experience. However, reality and the role mix the two which is why I feel family “caregivers” feel a roller coaster of emotions. To answer the question, I think the term can change from day to day.
Well said
Jennifer Berumen Zaragoza thank you!!! I have many sleepless nights to try to find the words for how I feel sometimes.
It is dishonest to look for a sugar coated euphemism. Call a spade a spade. Yes, it is a burden, and sometimes an intolerable one.
It can KILL you or damage your health. It is a horrible burden and no use dancing around that word.
I try not to look at my mom as a burden I’m sure growing up I could of been a burden but yet she took care of me. ♈
I love her this will not last forever & one day I would wish mama & her total care was here. I love you mother unconditionally.
+ ✨
I truly understand. Just lost my husband tonight…such a difficult job..it’s called love
Just to interject my opinion here, caregiver burden is too complex to be reduced to just a generalized term. That’s what irritates me the most about caregiving from outsiders and your inner circle. I used to hear all the time, “put them in a nursing home”, ” you need to take time for yourself “, “why can’t you bring them out”, etc. Unsolicited opinions and advice infuriates me
It’s NOT a burden taking care of my son!!! It’s my honor.
How about , (Love tired)..that’s what I say..
Compassion fatigue
The burden is the condition not the person.
Mental and physical load
Please don’t call what we,so many are doing or have done..a burden.Yes it’s a heart wrenching journey and after two years after our Mum’s passing I still am tired emotionally and physically but I would gladly do it again for her.Love you ❤️
And I would ask that you please don’t lump all of us into your own experience of this! No two caregivers will ever feel the same about what we do as our life experiences of it are vastly different even if it doesn’t appear so on the surface. Mine IS a burden!
Truly sorry you think I am lumping you in what I experienced.I hope at the end it will get better for you.
I feel that we need to stop stereotyping any caregiver who can’t go it alone. I see many posts that make those who need placement care as uncaring or selfish. Judgment needs to stop and advocacy needs to begin. Less articles more voices lobbying our leaders. Over the course of the past 2+ years I’ve known six sole caregivers all at midlife that died of sudden fatal heart attacks two others committed suicide. One life lost in anyway is too many. Caregiver fatality is real and it is the elephant in the room . It is my responsibility as a person of midlife to work and plan for my elder care. I would never put it on my child. I never want my child to endure this journey. I will forever advocate for those Who need help
Burn out!!
Not really. I just call it being a daughter.
I am a daughter. But I am also a mother. I never want to put my son in this position ever. I will work as hard as I can for as long as I can to plan for my future.
Terminal Nightmare
Atlasing
Unshared Responsibilities
Torching the Candle at Both Ends
Herding Cats into a Swimming Pool
Playing Musical Chairs with Wheelchairs and Deaf Ears
I’ll add Executive Domestic Slave
Life as it encompasses everything we do and the decisions we make
Imprisonment…. im just being honest. But I absolutely agree with its not like they chose this for their lives, im thankful that i have been chosen to caregive for my grandma! It absolutely is horrific & horrible, but i WILL NOT by no means let her go! Yes i to agree with also, committed… i will say though this: people should in their younger years take better care of themselves to prevent such things if necessary. I know not every elderly situation is a life led by them not taking care of themselves, but i assure you there are a lot out there that are a direct repercussions of them not taking care of themselves! ❤️☝
Everyday we are challenged to figure things out on our own because we all have different issues and needs pertaining to who we our caring for ..
Definitely not one size fits all..
We steal a moment here and there to gather our thoughts and focus or just close our eyes for a moment or two and breathe in and out.. maybe filter some music through our minds ..
and just as quick we are jarred out of our silence to carry out what is needed at the moment ..
Sometimes life and death issues with no warning ..
Bless you all
Again, I like the nice answers but its euphemistic and serves no accurate perception of our role in society and actually self deprecates the real work that we do. We are natural givers and for some reason we revolve around making this very nurturing job as a positive loving thing that yes, it is.
It’s not a responsibility because all of us have the choice to not do this. We have family members who have no problem turning their backs.
It is a commitment.
But euphemisms diminish our true situation. And it doesn’t help us on the broad stroke of painting an accurate day in the life of a caregiver.
All of us don’t have a choice to do it or not. Spouse caregivers often must. They are legally and financially responsible. Children may be morally responsible but they can walk away. Spouses cannot.
Sylvia Sue Smith I’m not sure I’m familiar with the legal responsibility. As a mother I technically didn’t have to step in as guardian. I’m a bit surprised.
A day in the life
I have no issue with the word burden. It’s accurate and not necessarily negative. It’s really the honest truth. And you can’t fix something unless you call it what it really is.
Let’s face it. Money solves a lot of the burden issue. And that’s what we should remember when we present our challenges on a political level. I’d say keep it.
Best post I’ve seen. I’m learning to stop feeling guilty. As an only child in my 50’s I can’t do it alone. At some point placement care is what I will need. I would do if I didn’t work is put my child in the same position and that solves nothing. Instead of all these articles we need lobbying groups to tell it like it is to our leaders
You’re so right. Its a crisis and a burden. There will never be supportive legislation, sufficient safe facilities, respite options, financial, emotional, physical support if it’s sugar coated. Yes we do it. And with love. But caregiving can still be a killer.
I wouldn’t call it a ‘burden’, but prefer responsibility or commitment.
Then you’re one of the lucky ones. Just sayin’
Ryoko Chan I totally understand what you’re saying. I was my mom’s caregiver for 20 years, and after that, my mother-in-law’s caregiver for almost 10 years, as well as my uncle and stepfather-in-law’s caregiver simultaneously. And yes, it was a burden at times, but I also tried to put myself in THEIR shoes. So I really do understand.
Natural feeling/ caring
I do not look at it as a burden, they are not trying to be, it is what it is, a need and there is a huge amount of stress, I know I live it 24/7. All jobs have stress, granted most pay and have days off but it is life. So how about a day in a caregivers life!!??
I like this answer except that it’s a definite burden and I know my days as many others do, are 24/7/365 Life and death situations. That’s a burden. It affects our health in a major way and that’s an added burden.
It rips through your finances, that creates another burden. I could go on.
I’m 24/7/365 as well! It began 12/20/14!
It’s a burden when you end up homeless at the end of it because you’ve given up your own life to care for someone else and everything about you is shot!!!!!!!!!
Ryoko Chan I am SO sorry that happened to you! I hope things get better for you soon!