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

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

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
  •  I'm new and my mam has lung and throat cancer. Neither connected to each other. The lung cancer has not been treated as my mam was 88  yrs old when it was diagnosed.The throat cancer was diagnosed 2 weeks later and has had some treatment. She has had the all clear on the throat cancer until last year.

  • Hi DS803,

    It’s Megan here from Macmillan’s Online Community team, I’m sorry to hear about your mam’s situation and that she had the all clear until last year. This must be causing a range of emotions for you and your mam just now so I’m glad you’re reaching out for some support and found the Online Community. We’re here to help for as long as you need some additional support.

    I hope you found the above blog helpful to read and I wondered if you’d thought about introducing yourself in the Carer’s only forum as I saw you’d already joined this group in your profile activity.

    I’m sure once you share what’s brought you to the Online Community, others will be close by to offer some support. You can start a discussion to ask questions and chat to others by clicking the ‘+new’ or ‘+’ button near the group title.

    You’re welcome to take a look around the groups and join in the conversations you feel will provide the best support. If you have any questions about using the Community or finding other types of support, please don’t hesitate to get in touch.

    We’re here to help and you can contact the Online Community team by sending an email to community@macmillan.org.uk or send a private message to the Moderator account.

    Best wishes, 

    Megan
    Macmillan's Online Community team

  • Thank you. That was exactly what I needed to read today. I do try and keep a lid on my sadness (my partner is likely to have only a few more months) especially around my partner (who is incredible and has way more humour about our situation than I can muster) but it's good to be reminded how healthy it is not to bottle this all up. Sending love to all of you caring and supporting, you beautiful people x

  • I am so with you in this Mazda sport!!! Hugging

  • Hi

    Thank you for your comment on the blog. 

    We're glad it was exactly what you needed to read today. I hope it's helping you to be able to share in the Community and find support from people who understand. 

    Take care