Ways to Avoid Carer Burnout
As I write this, there are millions of people all around the world caring for sick and diseased loved ones. If you are fortunate to escape a loved one’s long illness or disease in your life-time, you are going to be a rare human. We don’t often give these carers any thought until we find ourselves needing care or giving care. Then the truth of caring becomes apparent. The physical and mental anguish, the neediness of the patient, the relentless ongoing challenge to care and long unpaid hours.
Human’s only have so much suffering they can stand, before being desensitised and ground down.
When someone’s life is suddenly turned upside down by a Cancer diagnosis of a loved one. We must have empathy. Yes, it’s bad for the Cancer patient. But imagine being catapulted from your steady life to suddenly having to be a carer. This is quite different from caring for ageing parents, we have an expectation of caring for them, as their health declines.
A cancer diagnosis most often comes out of the blue. It rips dreams, plans, and equilibrium to shreds. Because cancer treatment is delivered swiftly, there is hardly a moment to catch your breath. Let alone being a carer and coping with having to work and sometimes raise children, while caring single-handedly. A lot of carers are not cut out for caring, they lack the patience and energy at the end of a hard day’s work. Remember, they didn’t choose to be carers.
Carer burn out is often overlooked, or not respected, as a serious complaint. When it is compared to their loved one’s disease, it often pales into insignificance, especially from distant relatives, colleagues and some medical practitioner’s perspectives. But I think it is crucial that we help the carers of this world and don’t underestimate their load, anguish and fatigue. Otherwise, it could be them who need the caring next.
What is Carer Burn-out?
The signs of carer burn out are a lot like depression. Fatigue, withdrawing from outside world, anxiety, sleep problems, comfort eating or drinking, depression, mood swings etc. If you didn't have Cancer, you probably would be really worried about them and make them seek help. With Cancer, it is too easy to think this is expected of our carers, at a time like this, and not push them to seek help.
As a cancer patient, I ‘get this’. As a fully mobile and active cancer patient, it is vital to not rely on others too much. I get that chemo weeks, radiotherapy and surgery are times that we need a hand. But it is all too easy to fall into victim mode when we want attention.
I have been living abroad, away from all my family and friends, for the last three years. I have a partner who travels nearly every week on business, for a few days at a time, sometimes a week. In the long two years, since my diagnosis, we have both learnt what resilience and grit really is.
I have had to lean on him through the daily three hour round trip to hospital for six weeks of radiotherapy, and the half days travel for my 15 chemo infusions, while he was squeezing in important emails, calls and scheduling meetings, in the rare gaps that came up in his day. The joy of self-employment is a falsehood, in times like these, with no safety net of paid leave to fall back on, we both have to work.
After recovering from brain mets surgery last Christmas. I decided enough was enough, I could see my husband was fatigued and close to burning out, much more than me. We decided to move temporarily to the city centre, within walking distance of the hospital, for my twice a week rehabilitation appointments.
We had everything on our doorstep for five blissful easy months. He took up his business trips again and recovered his energy. I fended for myself. Even though I had to relearn to speak after surgery, and was entirely on my own in a foreign city, I loved every minute. The freedom of not being fussed over, or watched 24/7, was liberating.
My friends and family panic when they know my partner is not with me. They want me to be looked after, like a ‘real’ cancer patient. Often, I don’t tell them he is away, just to get a peaceful moment, otherwise they would call incessantly.
Cancer is so often stigmatised, in the worst possible way. But, there are many stage 4 patients, like me, getting on with their apparently ‘normal’ lives. We must take responsibility and lower the bar for our expectations of care too.
If someone truly needs caring for, fair enough you absolutely need caring for, and believe me, I had to be cared for intensely for some periods over the last two years. But, if you are managing fine, stop the fuss. Push people out of the house. Stop being cared for. There may come a time when you need caring for again, and there may not. Who knows?
What you Can Do if you are an Active and Mobile Cancer Patient
Let your family and friends breathe again by breathing yourself.
Demonstrate that you are fine, and well equipped to get by, without the constant hand holding.
Are there any solutions to helping ease their caring schedule. You might have to think outside the box. If you can slash a long drive to the Oncologist appointments, chemo or rads sessions by a lot, just by temporarily moving somewhere closer to the hospital, it will save time and energy for you both.
Ban conversations about your health when out socialising, or having a catch up call.
Focus on your friends and family’s lives. Embrace their news, challenges, marriages, births, deaths, promotions, illnesses, and don’t compare their lot to yours.
The best gift you can give a carer, if you do need a bit of caring, is free time. And I don’t mean a couple of hours to get to the supermarket for the weekly shop. I am talking about real quality time. Whether a day or weekend away by themselves, or with friends and family by themselves. Even better - a holiday. Let them try and catch up with themselves again. Ask for help.
If you have a partner, don’t assume because they are there with you, that they can take on all the caring. They may have vowed to, but you don’t need to make them fully abide by it. Is there anyone else that can take care of you for a day or two, every now and then, to give them some respite? You might need to encourage your partner, or adult child, to leave you for a day or two in someone else’s hands. Don’t make any jokes about their not caring about you. Wave them off with a smile.
I don’t know what level of care you need right now, but I hope we all look at the carers in our lives and appreciate them a bit more and help them to breathe again.