“I’m fine”: how do you really cope as a carer?

A picture of a lake and a tree on the shore, with a rainbow in the background on a sunny day.

Community member and Macmillan volunteer  has been through a lot since her husband was diagnosed with a brain tumour in August 2020. Along the way, she has learned a lot about her own resilience and looking after her wellbeing. You might have read Wee Me’s story in her recent guest blog, “Caring for a partner with a brain tumour.” Today,  Wee Me is talking about the coping strategies that work for her and how it’s ok to cope in a way that feels right for you.

One of the frequently asked questions or themes running through the ‘Carers only’ group and many other groups within the Macmillan Online Community is “How do you cope?”

How many times have you been asked that and replied along the lines of “I just get on with it. I’m fine.”

Now I can’t begin to imagine the emotional journey that the person with the diagnosis is going through. However, a group of people who can be easily overlooked are the immediate family of that person and their close friends. The focus rightly is on the person who has sadly received the diagnosis, but that diagnosis impacts everyone connected to them. Those people are going through their own emotional journey here in parallel.

And what a journey it can be!

This is the journey I found myself starting on 26 August 2020 when my husband was diagnosed with a brain tumour (glioblastoma). Within three short weeks, as a family, we went from everything being ok (well, as ok as anyone was five months into the first Covid-19 lockdown) to a family facing the stark reality that my husband needed a craniotomy to debulk his tumour and had been given a terminal prognosis, suggesting he had 12-15 months to live.

Nothing prepares you for that on any level. Absolutely nothing and equally as hard to accept is that, in our situation, there was nothing we could do about it.

I can honestly say I’ve never felt so useless in my entire life.

So, having had the diagnosis bombshell dropped, how do you cope?

This is where your natural resilience kicks in (hopefully).

Let’s dispel a myth here – there is no right or wrong way to feel or react in this situation. We are all humans who run on emotions. This is our loved one and we simply feel and react… and that’s ok.

The dictionary definition of resilience is “the capacity to recover quickly from difficulties.” Psychologists at the American Psychological Association define it as “the process of adapting well in the face of adversity, trauma, tragedy, threats or significant sources of stress.”

We’re all unique human beings and, as such, can all cope naturally with different levels of stress. When we’re faced with an adverse situation, I’ve found we generally react in one of three ways:

  • Erupt with anger
  • Implode with overwhelming, negative emotions, go numb and become unable to react
  • Simply become upset and emotional about the situation. We cry.

Only one of these three options is good for our wellbeing. It’s also actually a sign of resilience. The one that is good for you is option 3…and trust me, I’ve cried oceans of tears over the past year and a half!

Too many people beat themselves up for getting upset and emotional at times of crisis.

Don’t! It’s good for you as it shows you’re not bottling up the feelings and emotions nor are you festering and blaming someone else. In short, by crying and showing your emotions, you are dealing with the situation and by default are subconsciously coping. Honestly, you are. And you’re coping so much better than you give yourself credit for.

There are various strategies that you can try to support you here. No one said this was going to be easy. There’s no one size fits all answer to this either, but a simple place to start is to take some “me time” each day.

No, it’s not selfish to take time out to do the things you love doing, the things that make you feel like you. It’s essential for your wellbeing. It’s a breathing space away from it all. Time to recharge your batteries a bit.

A sunny outdoor table with a glass of water, notepad and a pen.For me, taking “me time” means going for a walk along the beach, listening to music (rock chick here), taking photos and writing (indie author). These are my escapes from reality, especially the writing. They always have been.

When I broke the news of my husband’s illness to one of my close friends, they replied “keep writing, take lots of photos, lie on the beach, stare at the sky for longer than you normally would…this is about you as well… you need to heal before it gets worse.”

They were spot on. You do need that time. Lets not kid ourselves on here. This can be a tough gig and a test of endurance.

Another coping strategy I use regularly is journaling. It’s a great outlet for your fears and emotions. All those things you don’t want to say out loud. No one need ever see what you write other than you but seeing those fears in black and white (or whatever colour of ink you use) takes a lot of the power out of them. Written down, they can seem less scary and intimidating. Reading them back can help you to believe that you can and will cope with the situation. Try it if you don’t believe me.

On a day-to-day basis, coping can be a challenge. I’ll not lie. If you feel you’re struggling…and lets face it, we all have rough days…break it down into bitesize chunks. Take it one task at a time, take it an hour at a time if you have to but try to view it in small manageable pieces and one-by-one you’ll work your way through it and emerge all the stronger out the other side. As the same close friend repeatedly reminds me, “It’ll pass.

One final thing that I did to help myself cope with this journey through hell was to not mention the situation with my husband’s health on social media. This was an entirely personal choice on my behalf, but I do feel that it’s helped me from becoming overwhelmed, especially in those first few traumatic weeks. We love our friends and family dearly but the “friends” we have gathered on social media may really be more acquaintances than best pals. Do we really need them knowing everything? I was scared that if I mentioned the situation that it would turn into a bit of a circus.

Now I’m perhaps being unkind here but, by keeping it to myself and only telling those friends and relatives who need to know, it’s allowed my social media accounts to also be an escape from reality.

This Online Community has however been one of my greatest sources of support over the past year and a half. The various groups within the community are filled with folk who “get it”. They will understand all too well where your head and your heart are at and are best placed to empathise with you. These are the people who really know how much you’re not revealing when you say, “I’m fine.”

If you’re supporting a loved one with cancer, you’re not alone. As Wee Me has written, it can be essential for your wellbeing to take time out for yourself. Whether to relax, to do something you love or just to take a breather. What do you do to help yourself cope with what you’re going through? Let other members know in the comments below.

Remember you can find lots of support and talk to other people who understand how you feel here on the Online Community:

Read more blogs like this:

Thank you Wee Me for taking the time to write this blog post for us, and for sharing the above images with us. 

Anonymous
  • Time for yourself as a Carer is so important.I looked after my mother for over 15 years.She didn’t have cancer but was disabled following a brain haemorrhage.I made a small secluded area at the bottom of the garden and would spend a few minutes enjoying the solitude and the birds.If things were especially tough I’d have a little weep before going back indoors.Mum died in January and I miss her so much.It was a privilege to look after her before I got cancer.It was so hard at times and sometimes I felt incredibly lonely.Unless you have been a Carer I don’t think you can fully understand just what a hard job it is. being a Carer was much more stressful.Somehow you muddle on through and find your own way to cope.

  • Hi , thank you for your comment, I hope you found Wee Me's blog helpful to read through. Thank you for taking the time to share your experience with your mum. I'm so sorry to hear that your mum has passed away and to hear about everything you've been through. I hope the Online Community has been a helpful source of support during this time.

    To help you find more specialist bereavement support if this would be helpful, I'd just like to highlight At A Loss, who are a national bereavement charity. They provide a directory service to help you find local support. They have a webpage on looking after yourself when you have been bereaved. This webpage includes details about Griefchat, which is their free online chat with a trained grief counsellor. It’s available Monday – Friday, 9am – 9pm, and may be helpful during this time. 

    If there's anything further we can do to help you feel supported or if you have any questions, please feel welcome to reach out to us over email to community@macmillan.org.ukIf you would like to access further support today, please remember you can also reach our Support Line specialists 7 days a week, 8am-8pm on freephone 0808 808 00 00live webchat or email

    Take care,

    Eliza

    Macmillan Community team

  • Hi Eliza,Thank you so much for the information.I’ve found it so helpful being on the Macmillan boards,especially since mum has died.I’m very grateful for your help.Love and best wishes Jane 

  • The time for me, is what I find the hardest, I just want to spend every minute of everyday with my beautiful man, 

  • Hi , thank you for commenting. I'm sure lots of members here on the Community might really understand how you feel. I wondered if you might find it helpful to talk about this feeling in the 'Carers only' group?

    If there's anything else we can do here in the Community team to help you feel supported, please remember you can reach out to us over email at community@macmillan.org.uk.

    Take care,

    Eliza

    Macmillan Community team