My loved one isn’t a burden

September 17, 2017

caregiver burden is real, but caregivers feel guilty for experiencing it

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

Written by Cori Carl
As Director, Cori is an active member of the community and regularly creates resources for people providing care.

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  1. Sending you wishes for strength tomorrow and forever. Hugs

  2. Christine Owens thinking of you today ….

    • Thank you. There are some major changes going on, I’ll message you about it.

  3. Today has been a burden. I’m exhausted and sad. Tomorrow’s another day. Maybe I’ll be happy.

  4. It’s hard, and it has both physical and mental stress on each member of the family who is involved. I might not have “made it” if it weren’t for the help of our two daughters. I didn’t feel so alone with their support. Everyone commented on how dedicated they were. Jackie and Kris’ help continues, and I really appreciate them.

  5. I have struggled with this idea for a while. I think it is appropriate to talk about the burden that is caregiving. And yes, that means that there are times my son’s care is a burden. It is a burden I gladly accept, but I don’t want to diminish the hard work that is his care. Doing so diminishes the inordinate contribution and efforts or caregivers. I also worry that because caregivers are not allowed to talk about a loved one as a burden then there is real risk that the often unseen lives of caregivers will continue, with society mobilizing few of the necessary resources for caregivers to survive and thrive – not to mention their loved ones.

  6. My mother cared for me when I was fighting cancer…now, even if my life has become only care giving, I will always look after her. Once she can no longer walk, I will push her and feed her. I owe her my life! Priorities must be family first, I simply cannot understand ppl who never see their parents and never help or just stick them in a home and forget about them.

  7. It never feels like a burden to me until… refusal to bathe, eat, and walk.. and angry about it. Her dementia, copd, and heart aren’t wonderful for her either.. Sometimes it’s so very hard- my mom for seven yearsI feel as if she refuses my care(nutrition, exercise, and daily meds and vitals) then what good am I doing?

  8. I’m blessed to wake up to her, my mom, & put her to bed.

  9. I was caregiver to my Mom for nearly 20 years. I had to put her in a home when my physical strength gave out. It is like burning the candle at both ends. She got sicker and I got older. It got to the point that if I kept her at home she would be gone in a week. Her organs were failing and my house was a germ factory. I could not keep it clean enough no matter how hard I tried. The home brought her back to life and we had her 3 more years. All homes are not terrible and I am not a professional though I did it 20 years. I want to appeal to all the able bodied family members out there to honor the caregivers in your own family and step up now and then, give them a much needed Day Off. Trust me they’ve earned it.

  10. Caring for our loved one is not a burden. However the sadness and uncertainty that comes with it is a tough thing to carry.

  11. I’ve been a caregiver for my mother for six years. She has dementia. She once said to me; “I feel like a burden to you.” My only thought was to tell the truth. I softly and lovingly said to her; “Yes, sometimes you are a burden. Just as I was to you when I was a child and you were a single mother. But that doesn’t mean we give up or walk out because love, loyalty and commitment come first. I will always be here for you because I love you very much. It’s not easy for me losing more and more of my mother every day.” And then I redirected her attention to my dog, Josie. And all was well for one more moment. My goal is for my mother to know when she dies that she was loved. I think I’ve done that. And THAT gives me peace.

  12. That’s the challenge. Caregiving can be a burden – even if the person themselves isn’t. And, it is such a weighted word. So much value is implied. Yet, we can’t ignore the challenges of caregiving – otherwise they’ll never get addressed.

  13. I don’t see my aunt as a burden but in all reality her son should be doing this but he is strung out in another state and I would do it all over again but I am so tired mentally and physically. I wouldn’t dare put her in a home. She wouldn’t last 2 weeks in there.

  14. No matter who you asking the family or how it said it is always turn back to you as a burden. Though it never was a burden!

  15. It is a burden. Doesn’t mean you don’t love them.

  16. Caregiving is not a burden . Agencies refusing to offer any assistance is the burden

  17. Father in law has Alzheimers lives with us. We don’t do anything spontaneous ever bc we have to get a sitter who requires notice. I just take it one hour at a time sometimes. It is very hard.

  18. It is a burden for me but it’s not any body’s fault, I guess. I can’t say I do what I do for love but because it’s the right thing to do.

  19. No my loved one I am caregiver too is never a burden, but I do really get stressed, but when I make a statement about being tired, I am not complaining

  20. Hardest job youll ever love

    • My mom, 2 brothers and dad, I’d do it again without hesitation

    • Rebecca Glesener Davis – Me either. Not one bit.

  21. So relatable… I’ve been my sons caregiver for 18 years. One day at a time… I cherish the littlest moments that end up being the biggest memories.

  22. Constant care
    Never a break
    No down time
    No time off
    We can’t punch out at a time clock
    We are always on call 24/7, 365,366 (some years)
    I’ve been a caregiver my whole life. Taking care of different age groups.
    Now just for family.

  23. I’ve been my moms full time unpaid caregiver for over 23 years. I’ve paid the price from being diagnosed with depression from caregiver stress, extreme loneliness, being home 24/7, losing personal relationships.
    Physically and mentally I’m exhausted and to make things worse the Dr hinted that my mom is entering stage 7 Alzheimers.
    She can’t stand or walk, wearing diapers and is bedridden and sleeps about 22 hours a day . I physically have to lift her to use the Porta potty.
    I’m tired and don’t want to do this anymore. But do i regret it, absolutely not. My mom didn’t do anything to deserve this, the only thing my mom is guilty of is working hard all her life like her brother and sister who were twins. They both passed from Alzheimers.
    Being a full time unpaid caregiver is the worst job I’ve ever hated and the best job I ever loved.
    I only have to answer to my mom and our heavenly if I’ve been taking good care of mom.

    • Your experience is so familiar to me… much love to you, Bob! ❤️

    • Wow…. that was felt so deeply by me.

    • Kellie Evans Miller, due to the dumb ass rules in California I’m not eligible to be paid because my parents own a home.
      I stopped my pre med studies at USC to stay home and care for my mom then only for my dad to become sick with leukemia.
      How many years have you been an unpaid caregiver? Just asking.

  24. It is a burden, and I hate it. For those of you for whom it is a labor of love, I salute you.

    • I hated it too. I didn’t hate my mom though – I hated the Alzheimer’s and I hated the situation and I hated the fact that she was dying and that I was an only child, and that nursing homes near us seemed horrible and scary and I hated the fact that I had to spend so much time at home and not with my friends, and I hated the fact that my kids had to watch this, I hated the fact that they had to help me and I hated the fact that I hardly slept for 2 years and and and… there were so many things I hated. Dying is a burden. Disease is a burden. I love (ed) my mom. I hated the situation the disease put us in. I didn’t find any beauty in it either – people do – or say they do. I am proud I did it, I felt an obligation to do it, I would do it again for anybody in my family, I think my mom and dad would have been proud of the way we handled it all. But I did hate it at the time. Now I feel accomplished that we did it.

    • It is a burden. A burden on time, finances, the body, the mind, and your heart. Yes, out of love and necessity. We need more help here in caring for our loved ones faced with the daunting task of caregiving.

    • Sara Pomakoy Poole My friend, you have a way with words. I understand and agree with you 100 percent. ❤️

    • Sara Sayles Coon we’re all in it together. You completely “get it” now – I wish you didn’t… by all means both all of our folks could still be here but it didn’t work out that way for us. Love ya – ME

    • Sara Pomakoy Poole – Excellent summary. As an only, you speak for me as well. Except I didn’t have kids to help out, and it was seven years in my case.

  25. Although I will only put mum in a home when things are too bad for me to cope, it has been a burden sometimes when the carer can’t do things for themselves that need to be done. Also I will never let any of my children care for me.

    • This was what my birth mom always told me, then she had a heart attack and needed care for almost a year. It was hard for her to accept help at first because she herself was never there to care for her parents. She never raised me, or was there for me, but I was there for her when no one else was. Then she dumped me again shes very toxic. But still i will never regret helping her.

    • So sometimes letting someone help you also blesses them.

    • I will not let my children lose their identity by caring for me

    • I fully understand, believe me, but are you not taking that choice away from your children?

    • We have talked about it and they have seen the effects on me

  26. I just lost my father in law, it was very hard, but so worth it, it was my honor to care for him! And one day hopefully way far away, I will take care of my mom in law, ive also helped take care of my birth mom, my grandma was taken care of by my dad and then by my aunt Vickie, but I got to help her! Now my Aunt Vic, she deserved awards for all her caregiving, and she taught me so much. Right now im not needed as much since losing dad in law, so i feel im lost in limbo without a purpose lol I feel caregiving someone you love is the highest honor!

  27. Honestly, the tasks and more so dealing with insurance, scripts, approvals, etc, etc as well as managing needs are the burden, not my father as a person.

  28. The focus is usually on children caring for parents. There’s very little focus in the elderly spouse caregiver dealing with their own set of physical and financial challenges as well as the responsibility for another. Just another layer.

    • I agree, im on disability with chronic pain among other health issues myself.

    • The statistics are alarming. Anywhere from 30% to 50% of elderly caregivers die before the spouse they’re taking care of. The body and mind of someone 60+ can’t withstand the physical, financial and emotional strain of caring for a loved one.

    • Sylvia Sue Smith
      If this is truth why do we as a nation allow our citizens to sacrifice themselves literally their lives under this unfair strain. Laws should be passed to save the lives of elderly caregivers who are placed in this cruel dilemma through no fault of their own but because of the love they have for their afflicted spouses and the reduced financial circumstances in which they find themselves.

    • Sylvia Sue Smith -True! I did this for ten years my home…for my mother-in-law….

    • Hillary Clinton was the first and will be the last politician to propose a detailed, comprehensive plan for caregiver relief which addressed tax breaks, credits similar to child care, job protections, respite care and income protections. Oh well.

    • I don’t see my aunt as a burden her son should be doing this but he is strung out in another state and I would do it all over again but I am so tired mentally and physically. I wouldn’t dare put her in a home. She wouldn’t last 2 weeks in there.

    • There may come a time when you can’t do it anymore. Mentally or physically. It’s better to investigate your options now, when you’re not in crisis mode than when you can no longer lift her or meet her medical needs.

  29. Cared for my brother for over 25 years and I will admit it took a toll. I always said it was the hardest job you will ever love. Would not take it back even if given the choice. So much joy among the pain of watching him slip away.

  30. Never a burden, always a labor of love!!! My daughter is worth any and all sacrifices made! Would do it all over again if I could!

  31. One has to love the person to commit to 24/7 care. I have been blessed in marriage for 42 years to a wonderful man that is now and has been in advanced stages of Parkinson’s and it is an ugly long term chronic illness. There is very little he can do now and I am so emotionally and physically exhausted that I cannot even explain however I would not abandon him. Prayer is a big part of my day.

  32. Looked after my Mum who had Alzheimers for 6 years…Lost her a year ago now. I must admit it has taken it’s toll on me Physically and mentally but she was never a burden and i would do it all over again if i had the chance.


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