The most common term for discussing the difficulties that come with supporting a loved one through a health crisis, long-term illness, or disability is “caregiver burden.” While it’s a succinct way to sum up the challenges of caregiving, of which there are many, it also sounds a little bit like the person you’re caring for is a burden.
Here’s what our community members had to say:
A burden is defined as a heavy load… care giving IS a heavy load especially when doing it alone. That does not mean that you do not love the person or choose the role, but no matter The role of caregiver IS heavy and a tough one to carry alone. – Janie
It’s a burden. It’s a gift. It’s an education. It’s growing as a person. It’s love. It’s like many things in life – complicated. It’s all the harder because these are my children. They are healthy other than their disabilities. They will most likely outlive me. I will never be free of this responsibility. – Naomi
It is love, responsibility, and heartbreaking sometimes but it has to be done and for my husband I am the one doing it. So many different emotions wrapped up in care giving, no day is the same. – Jeannie
Its a sacrifice…without doubt. You simply cant do the things you used to. Loss of career, hobbies and social life is hard. Its also an adventure. A journey into unknown territory. What makes it a burden is bureaucratic systems that are meant to support but cause additional and unnecessary stress. – Leslee
No there’s not another better word for it. Burden is authentic and a natural description. It won’t help anything to employ euphemisms.
It is also NECESSARY to call it what it is for legislation sake. You cannot solve a problem if you don’t state the problem accurately in the first place. I refuse to minimize and pretty up what this lifestyle is all about. Its the best word because it’s the truth. – Kim
It’s a no win situation. Even when you can barely muster your last ounce of willpower and energy to keep going, complaining is not an option. Even the word games in this post–can we say burden without sounding like ogres?–no. It carries a stigma.
Honestly expressing how difficult it is implies we’re not loving enough, not understanding enough, not sensitive to the plight of the loved one, who’s really suffering. So there’s no outlet.
While the rest of the world has the luxury of indulging each and every inconvenience from a splinter to a missed hair appointment we have to keep quiet about cleaning up feces, not sleeping for days on end, giving up our hopes and dreams, exhausting our financial, physical and emotional resources so it doesn’t sound like we see our loved one as a “burden.”
Caregivers are the least understood and most taken advantage of group there is. And yet we persevere. – Sylvia
Not a burden…just exhausting! I keep in mind I hope to be as blessed to have someone care for me if needed in the future. – Kimberly
I think it is the frustration of trying so hard to make sure that our LO has what they need & want and then that’s still not good enough. That is when it starts to become s burden to me. – Gabrielle
What if you are a caregiver to someone who was always difficult and mean AND abusive? To me it IS a burden but I have accepted it and am doing my best. – Patricia
This is what I think makes caregiving so hard. We are often forced by circumstances into becoming caregivers to parents who were (and are) emotionally or physically abusive. Most people don’t understand the moral dilemma of this and simply say that taking care of parents is our job. – Jessica
We need to get back to a better understanding of the definition of burden as something that is carried. It also means the capacity of something (or someone) for carrying a load. Yes, it’s a burden, and should be brought out of the realm of shame, or the expected duty of a family, and into supervised, standardized, legislated, concrete support of caregivers. – Jean
My mom refuses to allow a “stranger” to care for her, so it’s solely been me… she’s 100% a burden to me. – Tammy
I would never say, “it’s a burden” when it’s something you feel deeply in your heart to do. It’s a loving choice! But what I think is over looked is caregiver burnout. The no human can do it all by themselves and go 24/7 and not burnout. You try to the best of your ability to take care of yourself as best you can, but sometimes the demands become overwhelming and relief and respite is desperately needed. The physical, Mental, and emotional toll can lead to death in a caregiver even before those that they are caring for, None of wants to be a burden on others, it’s not in our nature, but support is desperately needed. – Johnna
Yes. It’s a burden. That’s just a fact. Lean into it and accept it all the way around. Burden does not equate to resentment and negativity. Carrying a baby to term is a burden and a joy. This is a burden and life. Just live it best you can. – Kim
I have been a long-term caregiver and it is a burden, but one I was able and glad to bear. There were better days than others, humorous times, sweet times, very difficult times, but the total of the experiences made me a better person. It also made me a very tired person emotionally and physically…that’s the “is” of caregivers. I am glad I had the opportunity to care for my mom at home til she passed. – Penny
Was it a burden for my mother when I was a sickly child in early childhood and she took care of me? No it wasn’t. Therefore, the four years that I dedicated to caring for her through her struggle with dementia were not a burden for me. Those four years “broke” me emotionally, mentally and physically but I wish to God she was still with me. – Cary
Yes. It truly can be a burden and challenging, regardless of how we re-frame it. There isn’t anything wrong with admitting it either – sometimes doing so can make it easier to cope. – Kapok
I wouldn’t not do it and I’ve never regretted any of it, but the toll it took — emotionally, physically, and financially — I may never recover from. – Jessica
It’s hard. The hardest thing I’ve ever lived through in my 62 years. I wouldn’t have had it any other way but I look back and have no idea how I got through it. – Valarie
It was a privilege to be a caregiver for my late husband. He had early onset Alzheimer’s disease. I feel fortunate in that I was able to honor my wedding vows in ways that a lot of people never have the chance to do. In sickness and in health. We lost everything. Was it stressful? Was I exhausted? Would I do it again? In a heartbeat! – Lauren
It is an extremely complicated, very difficult, and most exhausting task for me. I care for my dad alone. I love him very much, he has been a fantastic dad, my best friend. I feel it is the least I can do because he has done it for me, sacrificed so much. It is not a burden for me, but I understand depending on situations and relationships, it is a burden for others – I can respect that. – Eleni
It wasn’t a burden. It was however EXTREMELY difficult not only to take care of two of my parents for so long but to watch them suffer. I did everything I could to give them quality of life for as long as I could, at the suffering of my own health. But you know eventually the end comes and watching them suffer was more than I could bare. I’m glad they are both at peace now, even though I miss them so much sometimes I can’t stand it. But never a burden. I chose it. – Lacey
Having been a caregiver in one capacity or another for family members most of my life, yes, I think it’s a burden AND it’s also an incredible privilege.
As a single woman, it’s significantly negatively impacted my career and earning power, and thus my ability to save money for retirement. That terrifies me because I don’t have anyone I can turn to care for me for free. I’ll have to pay for caregivers. I don’t have children who can help support me or let me live with them. I’ll have to pay for it. Because as a society we don’t value caregiving for family members.
And then there’s the physical and emotional toll. No one likes to talk about it or hear about it, but it exists. – Jessica
I’ve always thought of it as like being the Chosen Hero. I had a duty, not a privilege, but not a burden. I was the chosen one, the hero that would be there for my brother when the world no longer wanted him.
I thought it was a good, optimistic thing. But sometimes the journey becomes really long, and the battles become really difficult. You realize that stepping up and agreeing to a prophecy can weigh heavy on you, even when you know you may just be the only one who can do it. That trying to fill the expectations of you, expectations that everyone, including yourself, have placed on you, can sometimes be impossible. And sometimes, you will want to quit, and not even know what it is that you want to quit from.
Am I tired of school? Tired of being bullied? Tired of stress at home? Tired of being responsible? Tired of being lonely? You don’t know. You just know that you’re tired. And that you’re tired a lot more than you thought you would be. – Dominique
You are not and don’t let anyone make you feel [that you’re a terrible person for being overwhelmed by caregiving]. Caregiver fatality and, worse yet, suicide is the taboo topic never covered. We live in a shaming society and that is so wrong.
I know all about being made to feel I’m a horrible person, but I have a choice, victim or advocate. I choose advocate because there are more people feeling like this who are afraid to admit it. – Jaqueline
If you’re terrible than I’m terrible too. Burdens are things we shoulder. It’s not whether you think something is a burden or not a burden, what counts is how you handle the burden. It’s really not about what we think or feel, but what we Do. – Karena
As Director, Cori develops our comprehensive global communications and development strategy. She’s constantly tweaking our services based on data-driven marketing metrics and feedback from caregivers. She works to grow our community and build the reputation of The Caregiver Space by amplifying the message on social media, cultivating relationships with experts, creating organizational partnerships, and earning media coverage. She’s an active member of the community and regularly creates resources for Caregivers.
Cori joined The Caregiver Space after a decade of serving as a communications consultant for a number of nonprofit organizations and corporations furthering sustainable energy and urban planning solutions.
Cori has an MA in Corporate Communications from Baruch College at CUNY and a BA in Media Studies from Eugene Lang College at the New School University. She divides her time between Brooklyn and Toronto.