Definition of Caregiver Burnout
Our topic is caregiver burnout. Giving the description seems obvious.
As it could happen to you – if it hasn’t already – we need to know you would recognise it.
Let’s look at the symptoms, causes and some ways to prevent it. Also resources for more support.
Causes of Caregiver Burnout
What causes caregiver burnout?
Some in-depth research shows many factors.
- Feeling completely out of control. Trapped.
- Like you have no input or say and there is nothing you can do about what is happening to you. Or around you.
When Matthew was around 12 months old I was astonished that I was expected to just take a very sick little boy home.
One who needed constant monitoring, least he chokes on his saliva and gets pneumonia…again.
I felt the lack of nurse support or nursing experience of my own, made me totally out of my depth.
It seemed unreasonable that all these therapists, doctors and specialists expected me to be all of them rolled into one at home.
When did I get to be just mum?
Other contributing factors are things like;
- You are so busy with caregiver duties you neglect your own health – physically, mentally, emotionally & spiritually.
- Leading to fatigue which can cause a change in perspective. From a normally positive outlook on life to a negative one, that you just can’t turn around.
Though our circumstances vary, these questions, thoughts and struggles, are common causes of caregiver burnout.
Symptoms of Caregiver Burnout
What does it feel like? It’s unlikely you need me to tell you but:
There are many faces, people may experience all or some of these things.
- Isolation and withdrawal from friends and family.
- Loss of love and excitement of the things you used to get a lot out of. “Can’t be bothered,” “Not worth the effort,” “Just too tired.”
All things that you might hear yourself saying.
- Sleeping more or less. Some (like me) that means insomnia like symptoms. For others, oversleeping (I do this too) or never be able to get ‘enough’ no matter how much you sleep.
- Differences in over or under eating. Often seeking out comfort eating instead of your normal choices. Or just never feeling like eating at all.
- Feeling run down, or getting sick more often.
I have spoken to carers diagnosed with autoimmune or other more serious conditions. Their doctors can only it explain to them by saying, ‘Constant stress and anxiety eventually has to take a toll on your health.’
- or feeling emotionally run down. A roller coaster of changing emotions. Feeling not yourself, being irritable, blue, hopeless, or feeling helpless.
Prevention Tips for Caregiver Burnout
Find the Silver Lining
Firstly, the feeling of powerlessness is a contributor to burnout and stress.
So concentrating on finding the silver lining, on what we CAN control is paramount.
For me, as Matthew grew, I could still hold him. Run my fingers through his hair, and kiss him all over his face. He never objected. He never got too old.
Those tiny moments, were a silver lining in each day.
Develop New Tools
Chances are you’ve never lived this life before.
A new life with new challenged requires different tools. Expecting old coping mechanisms or comforts to make it okay isn’t always realistic.
Own your Emotions
You must own what you are feeling, and what you are experiencing to truly be able to choose a different way.
Denial of those feelings, only makes symptoms of anxiety worse.
Learn about the condition
Learning all about the condition your child has. In the case of rare diagnosis, you may be the expert.
For me stepping into that role, owning being the expert on my child was the change from powerlessness. To focus on what I could change.
If your child’s diagnosis is scary, long term or even getting worse, take time to process that.
Ignoring the facts won’t make them go away.
There is some evidence that anticipatory grief sometimes shortens or eases the grief process after they pass away. (Anticipatory grief- the grieving process that happens before the loss of a loved one.)
I am not saying it will. But it might help to embrace it, and if you don’t face those things, it will make it worse.
Encourage your child’s independence and identity apart from you.
We can easily say, “he can’t do that.” Or plan our every move assuming they will be there.
But take a second, if my child had a choice, would he enjoy doing this another way?
My Matthew wasn’t verbal or mobile. We could have easily forced all the things we like on him. Not intentionally.
Because he couldn’t say ‘no’ we had to learn what it looked like when he meant it.
It takes time to learn. But it only takes a moment once you have to know he was entirely his person.
He liked his music, he didn’t like mine.
He liked the weather just so, etc.
What does this have to do with encouraging independence, or managing burnout?
They need to have their own lives if you’re going to have yours.
To prevent caregiver burnout, you need to have your own life. To relinquish some of the control.
Know your limits
Not to all the things you love to enjoy.
But perhaps it’s time to say no to the new therapy the doctor is suggesting you could do at home. Or the exercise the therapist is recommending.
Yes, you can’t do it all the time. However there are other ways and other times, that can be considered. It doesn’t always have to mean you giving more of yourself.
Know when you are reaching your limits.
Ask for help
This will mean another element of letting go control.
Accept that things won’t always be done the way you would do it.
This goes for when someone offers to help.
Your child may or may not grow out of what is going on now. This is a marathon, not a sprint.
The earlier you bring people in, to help you the sooner you will find the right fit. They can hang out, have their own relationship.
Avoid Isolating yourself
It seems like the easier option.
You don’t have to reach out, you don’t have to try and make your schedule work with anyone else’s.
But isolation only lets the symptoms grow unchecked.
Reach out to someone you trust, make a regular time to check-in. So when that time passes they know to follow you up.
They can be the go between. If you really can’t everyone, they can relay the updates.
Share the hard bits with them. Then when the wins come, they will be able to appreciate them and celebrate with you.
If you don’t have someone like this, is it because you’re already isolated?
It’s time to start looking?
If a friend isn’t up for the task, try a professional.
Parents who are also carers often have PTSD, depression, anxiety and many other symptoms from everything else. Let alone getting to caregiver burnout.
Find a professional
A professional is trained for the task. You’ll never find it making its way back to you in the rumour mill.
Professional help processing can be invaluable.
However, just like if the specialist wasn’t a good fit for your child, if you’re not comfortable, shop around. Try someone else.
Maintain a good relationship with the other parent
I can feel myself cringing as I type.
I know for some this is impossible. The time has passed.
But some are hanging on in tough relationships. Other’s are working hard on their co-parenting relationships.
A good relationship with the other parent is shown in studies as a ‘protective factor‘ to burnout.
It’s something Luke and I have invested heavily in making a priority.
All I offer is my encouragement that it is worth it to give it your best.
Join a carer or peer support group
Just like mother’s groups, some people will find this difficult, others will love it.
For me, it took a couple of tries. I didn’t even like going to the local paediatrician. I didn’t think he could support my complex rare little guy, he was just too unique.
Your situation is unique. You are unique.
However out there are hundreds of other families that feel just the way you do. They are facing lots of the same fears as you, even if they have different symptoms to manage.
You can be to someone else, just what you need.
Someone who gets it.
Or you can just sit back and absorb everything that is going on, everything that they offer.
That’s okay too.
They get it.
There’s a good possibility that was them once too.
All of this to say;
DO NOT FORGET YOURSELF.
Prioritise things you enjoy, get out of the house.
To that 60 % of carers who work outside of the home.
It doesn’t count!
I could say pamper yourself, but it just makes light of what is tough work.
Caring for yourself isn’t eating chocolate cake in the bath. As nice as that is.
It takes more to reverse the effects of stress and burnout.
Set yourself some goals.
- Eat well
- Get proper sleep
- Take a great supplement.
So it can cover the gaps and reinforce when you need extra support.
Avoidable health issues happen to people not under the stress you are. Caregiver burnout only increases your chances of it happening to you.
Having taken a moment, what do you think you stress will be like if that happens?
You don’t have time for any of this?
Take a moment.
Think about the worst thing that could happen to someone with any one of the symptoms of caregiver burnout.
How well cared for would the person you’re caring for be, if that happened to you?
We make time for the things that are a priority.
Resources for Support
- My personal development coach: Danijohnson.com
- My friend & mindset coach: Flexiblefreedom.com.au
- Support for families in Victoria with a life-limiting illness: Very Special Kids
- Support Network for Rare & un-diagnosed conditions: Syndromes Without A Name (This is just the Australian arm of the global community.)
- My supplements, supporting resources like my work & the above associations: The Triangle of Health