What Do Caregivers Fear the Most?

It’s not what you think. Caregivers don’t dread the work, giving up aspects of their lives, or even the inevitable moment of death that’s to come.

I recently spoke at a caregiving event (sponsored by my friends at Community Hospice of North Florida) and I asked caregivers what they feared…and a quiet, thoughtful gentleman shared:

“I fear that something will happen to me and I won’t be able to continue to care for my wife.”

That’s one of the biggest fears–that our loved ones won’t be cared for.

I’m sure it’s different for each person, but there are a few fears that most caregivers have in common.

What’s your biggest caregiving fear?

By asking yourself this question, you can then face it and then begin to explore solutions.

I knew the second this gentleman said it, that it’s a big fear, especially for those caring for spouses. 

And yet, most caregivers don’t take proper care of themselves. They put off their own doctor appointments, forget their own medications, and go dangerously  low on sleep and rest. Most caregivers are generous, kind-hearted, and conscientious–with others, but forget to give themselves the same respect and attention.

Spouses worry about their ability to care for their husband or wife more than any other group. They’re typically close to the same age, which means they probably have health issues of their own. They want to keep their partner at home, with them, and make sure that every need, every inkling of a desire is met–but they can’t if they’re not here.

Adult children, sons, daughters, and other family caregivers fear burning out, giving up, or the onset of some disability/illness that will cause them to be unable to stand up to the unrelenting workload and emotional load that comes with caring for others.

Caregiver stress is a real problem in the care community and that concern takes on a physical manifestation in the form of heart disease, cancer, depression, or arthritis.

Caregiver Fears:

• What if I die before my loved one? Who will care for them?
• What if my back goes out?
• What if I have a stroke or my cancer comes back?
• What if I can no longer lift or move my loved one?
• What if I lose my temperand do something I’ll regret? 
• What if my depression gets worse?  
•  What if I start forgetting important things like medication or if I left the stove on? 

The bad thing about fear is that it’s paralyzing.

We don’t run or yell or scream like we should (Ever watch a horror movie? The girl just cowers in fear). That’s our first reaction, but then we need to realize we’re in the grips of fear and make a plan–face the fear and decide our course of action.

My gentleman was still reeling from admitting his deepest fear, so it was important to give him the time and space to process his revelation. I asked him, and other audience members if they had a plan–a back up plan, and then I led him to some community resources who could help him figure out what would be “Plan B.”

Ask yourself: What can I do to give myself a sense of peace that my loved one will continue to be cared for?

Do you need to change your will? Ask someone to be his/her guardian and care advocate? Check into care facilities or purchase long-term care insurance? There are no easy answers, but doing something is better than doing nothing. Start small. Make a call. Ask someone.

My gentleman friend needed to know he had choices–agencies such as the Council on Aging, Urban Jax (in our area) and the Alzheimer’s Association who could help now, offer respite, home health care assitance–and later, he needed to consider small care home, memory disorder care home nearby (his wife had Alzeimer’s), information on Medicare.

By the end of the day, he said he felt better. He needed to face it, to say it out loud. He went home with the beginnings of a plan.

We tend to fear the unknown, and in the ”caregiving world,” there are lots of unknowns. We turn our fears into monsters and we hide, deny, and ignore in order not to look at them. Their shadows loom above us, but when we turn on the light, admit our deepest fears and take a look around, we realize  we’re not alone.

The best way to defeat a monster is with the help of a few friends.

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