How to take care of our caregivers

As we in the Northern Hemisphere sink more deeply into fall and watch nature begin to slow down I wonder…are you also feeling the call to rest more deeply and move more slowly or are you feeling the pressure to keep pushing through?

There are no awards for sacrificing your well-being to complete your to-do list, yet if you’ve ever faced burnout, you know we do this all too often. Depending on the study you look at, burnout rates are hovering somewhere in the high 70s – so if you’re feeling it too, you’re not alone.

Today, I want to talk specifically about caregiver burnout. I have a soft spot for caregivers because I worked as a PSW (personal support worker) for seniors in my 20s. It was a bittersweet job as I valued being able to provide respite for families but it was also heartbreaking to see the toll it was taking on everyone involved. Those who were sick hated feeling like a burden and their caretakers so desperately wanted to be there for their loved ones, but everyone has a limit y’know?! 

I worked in home care for seniors and I LOVED taking care of the elderly, hearing their stories, and learning from them. My favourite couple was Ed and Edna (adorable right?). Ed had severe osteoporosis and Edna’s dementia had left her unable to speak. But every single day after lunch together, Ed would gather a shallow bowl with warm water, a bit of soap, and a handcloth so he could crouch down and wash Edna’s feet. It was the sweetest, most caring gesture…I get teary even writing/thinking about it. Then when the feet had been tended to they’d hold hands for a while at the kitchen table before we’d all go out to walk around the garden. I was so grateful to be able to witness such sweet moments as a caregiver.

I was also able to witness how prevalent burnout is among caregivers like PSWs who are overworked and underpaid. Caregivers (paid and unpaid) are EXHAUSTED (or if there’s a word for beyond exhausted, it’s that). It’s a 24/7 job with little to no support or recognition. It’s just expected that we can take on these roles and thus, caregivers are afraid to admit how burnt out they are. And as our population continues to age, the demand for caregivers will grow so we need to talk about how to better support our caregivers or this is only going to get worse.

Caregiving 101

Caregiving is often necessary as we age and our minds and bodies begin to break down. A terminal diagnosis at any age may require years of caregiving. Diseases like MS and dementia and many others come with increasing responsibilities for caregivers as the disease progresses. And, of course, there is the necessary care for the dying.

Caregivers range from nurses and PSWs in a facility to paid caregivers who come into the home to family members who often shoulder the bulk of the caregiving duties.

It can easily become a full-time job from helping someone to get dressed to coordinating doctor’s appointments, cooking, cleaning, and managing finances to performing medical interventions to simple companionship.

Thus, it’s easy for the needs of the caregiver to fall to the bottom of the to-do list. And many caregivers are also trying to juggle their own lives – called ‘the sandwich generation’ it’s the family members who are caring for aging parents while trying to work full-time and be a parent to their own kids. It’s not hard to imagine them feeling overwhelmed and exhausted as they fall into bed each night.

“Burnout can occur when caregivers don’t get the help they need or if they try to do more than they’re able to either physically or financially.”

~ Alua Arthur

What does caregiver burnout look like?

  • Fatigue/ exhaustion
  • Changes in weight
  • Trouble sleeping
  • Depression or anxiety (or both)
  • Disorganized thinking
  • Feeling overwhelmed

And all of this can be complicated by anticipatory grief – the emotional purgatory that occurs BEFORE a loss. And it comes with its own confusing mix of emotions…

  • Dreading the moment of death
  • Mourning each loss of mobility or cognitive functioning
  • The loss of future dreams
  • The loss of companionship
  • Guilt wishing for an end to the suffering
  • Reliving shared laughter and joy and good memories
  • Relief at the end of suffering

Anticipatory grief is all the little losses that happen along the way and it can feel painful, confusing, and isolating.

Not every caregiver experiences anticipatory grief nor is this kind of grief reserved only for caregivers but it IS a common and completely normal experience.

How can we support caregivers?

Acknowledge them.  It’s an important role that often feels invisible and thankless. It’s easy to ask how the person receiving care is doing first and to focus on their experience and health. Instead, try asking the caregiver how THEY are doing first and heap as much love and appreciation on them as possible.

Give them space to take care of themselves.  Whether that means you offer to do one of their tasks for them like grocery shopping or simply volunteer to spend time with the person receiving care so the caregiver can go for a walk to clear their head, get a haircut, visit the dentist, or go to the movies. Whatever will give them a bit of breathing room, the big ol’ exhale they deserve y’know?

Research and resources.  It’s hard to know what supports are available in your area and helping caregivers (I’m thinking especially family members) figure out how to bring in extra support can give them the break they need to begin to prioritize their own wellness. Whether it’s support groups, hospice, therapy or grief counseling for the caregiver, or bringing in someone like a death doula, or PSW – it takes a village to care for our loved ones. You can find more resources at the National Alliance for Caregiving and the National Respite Network.

Talk to them about anticipatory grief or share this article. It can be incredibly empowering to name this experience and give them space to talk about it without judgment.

Caregivers step up when someone is at their most vulnerable and it’s a position of deep trust and honour. If we can listen, offer resources, give them time to recharge, and hold space for their experiences maybe we can help to prevent some of the burnout they experience.

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