Saturday, 1 February 2020

Caregiver Burnout: Fact & Fiction

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This morning a caregiver posted this in a Facebook group: "Well, today I crashed. That is all." 

Responses from other well-meaning caregivers were varied. One wrote, "No you didn't! You can pick yourself up and keep going. You can do it!"  Another wrote, "Maybe if you wrote what happened, get it off your chest, you would feel better." Still another offered, "Crashes happen. Tell others and hope for the best." 

All this got me thinking about our beliefs and values around caregiver burnout. Is it real? What causes it? Is burnout just another word for weakness or worse, selfishness? Here's my take on the facts and fiction of crashing out as a caregiver (some of this taken from my own experience and some from other caregivers): 

The Facts:

  • Burnout is real and it can immobilise even the strongest caregiver with an overwhelming sense of hopelessness and exhaustion. Burnout builds over time when a combination of factors such as these come into play:
  • When the physical and emotional needs of a loved one increase in spite of effort and love of a caregiver. Suffering increases and all efforts of a caregiver cannot soothe it. 
  • When constant distractions of care duties do not allow for personal reflection, rest or pleasant distraction. 
  • When friends or family members do not understand the lived reality of suffering at home.
  • When there is no support (paid or unpaid) and the caregiver feels alone and totally responsible.
  • When the caregiver thinks, "Anyone could do this job better than me" and "Nothing I do makes any difference."
  • Friends and family members may not want to hear about caregiver burnout because it makes them feel worried and uncomfortable. 
The Fiction:
  • Burnout is just temporary and a caregiver can just 'snap out of it'. Caregivers who report burnout just aren't trying hard enough.
  • Doing everything single-handedly is best, either because it seems easiest, or no one else has stepped up, or because paid alternatives are unaffordable. That's what strong, loving people do.
  • If you love someone, you should be available to meet their needs without 'clocking in and clocking out'. Sometimes this translates to working hours that would be illegal in any other profession in which vulnerable peoples' lives are stake, but that doesn't matter because it's a private, family matter. 
  • If we ask social services or extended family members for help or a break, they will automatically say yes because they know how hard you work and how much courage it took to ask for help.
So, what is the answer to avoiding burnout? Knowing that it is a real risk is one giant step toward planning to avoid it. In our book, The Unexpected Journey of Caring, Dr. Zachary White and I suggest that learning to describe the caring experience in simple language, combined with choosing three small ways that family, friends or neighbors can help forms the scaffolding a more complicated plan to replace the caregiver for breaks or emergencies. 

But if you are already experiencing burnout, you must tell people in ways they'll understand. This requires clear statements such as, "I am burnt out. I cannot function and I am very worried about what will happen if I do not get a break. I am completely exhausted. This is an emergency. Arrangements to replace me for a break MUST be found." Who is in a position to answer this call for help in ways that meet your and loved one's needs? Perhaps it is a GP, a family member, a local disease association representative, a leader in your faith group, or it is the entire family deciding to pool resources in order to access paid home care or a hospital respite stay for your loved one.

If you live in the USA, here's a comprehensive list of helpful resources. Ontario (Canada) caregivers now have a hotline to call for help and there's one in Quebec too. Caregivers Nova Scotia has a novel peer support program and more support programs are popping up across the country. If you are experiencing caregiver burnout, google 'caregiver crisis support' and add the name of your city or region. 


There are two people in a care relationship and both require care. In the case of caregiver burnout, it is a bona fide emergency for both, so it is time to sound the alarm. If your first efforts to secure help aren't successful, don't give up. Keep telling and keep asking. Good luck! 

2 comments:

Bobby's mom said...

Thank you for this post Donna! I think that those around us are clueless about the symptoms of burnout. Many of us (who have been providing care long-term) have learned to keep our problems to ourselves. We have been told (once too many times) that we are negative and/or complainers and people seem to avoid asking us how we are doing (for fear of hearing how we are REALLY doing). So we bottle it up, cover it up with smiles and hugs for others and cry alone. Your post is "right on" but that is because you have been there---it takes a caregiver to recognize the struggle of another caregiver. Thank you!

The Caregivers' Living Room said...

Hi Bobby's Mom!
Thank you so much for sharing your reflections and for your kind words to me. It still surprises me (even after 31 years of intensive caring) how some others just don't have compassion or any understand at all of the pressures that lead us to burnout. I have an email friend (another Mom longterm caregiver) called Diane who is a wonderful writer. She wrote a short piece that I included in my book (co-authored with Dr. Zachary White), The Unexpected Journey of Caring. Diane writes about her caring as if she's in a boat with her son. At first it's lovely and calm, but then a storm comes. Then the worst happens - the boat begins to take on water but bailing isn't working. "Does anyone know we are here?" she asks. We have all felt this desperate fear and loneliness at times. This is the beginning of real burnout. :(