Sunday, 2 March 2014

Caring for the carer

This week I am delighted to have the opportunity to write a piece about carers. Firstly I would like to say that this is not a word that I like personally, although I have thought long and hard over many years, to find one better! When I was younger I always visualised a carer being someone who would look after me in my old age. I certainly never imagined I would need one at the age of 51. Neither did I think that person would be my wife.

There are many people who are carers, and wouldn't recognise themselves as such. Without these wonderful people, our society would be a very different place. This is before you include the professional carers, that help our sick and vulnerable people. 

Without these people, many would have a much poorer quality of life.In my own example, if my wife didn't do so many things for me, I would not be able to continue with my support work. I often think, wherever we go, that I, as the patient, get all the attention.My medical team, look after me, as a VIP, and socially our friends always ask how I am, but my wife is rarely considered. In many respects taken for granted.

Most people looking after friends and loved ones do that willingly, selflessly, and with very little thought for themselves. Their roles can be short term or last for a lifetime. They just do what is necessary. Certainly they do not look for any recognition. My worry with this though has always been, that if they don't recognise themselves as carers, they may not realise that they also need help. 

This week I am honoured to include this guest post from Jayne Cox,who amongst her many roles, delivers workshops to both carers and patients at her local hospice. 

Caring for the Carer

As a carer you have a vital role in someone’s life. It can be an ever-changing role and may be driven by your love but also requires your dedication and strength to carry on with what can feel like a difficult full time job.  Your place in someone’s life can feel as if it’s changed and your relationship quite different now that you not only love but also provide care on so many levels.

So how do you remain positive and find inner resilience as a carer? Let me share some practical ideas with you.

1. ‘It’s really not fair’ and it’s ok to feel this and to say it out loud. Allowing your natural feelings to be shared is a step in the right direction. When you’ve acknowledged how you feel it allows you to move forward.

2. Think about who you have in your life. Who will allow you to speak and will really listen to you? This may be people you know well OR people that are almost strangers.

3. Some people benefit from meeting with other carers. This can help with the feelings of being isolated and alone. Ask about local groups.

4. Most of us can find resilience in the most difficult of times and it’s good to develop this habit.  You can accept that life is changing and learn to adapt. It’s good to discover the things that you do have control of in your life.  Notice ways to feel more of a survivor than a victim of a situation. Learn to problem solve and ask for help.

5. Look for ways you can have some normality in your life. For example, socialising, work, hobbies, self care.

6. Are your spiritual needs met? It can help to explore what spirituality means to you. More here

7. Take walks outside and enjoy open spaces and fresh air.

8. Notice good things that happen in a day with your loved one. Write it down and recall the moments.

9. What are you grateful for? This is a lovely way to end the day and again writing it down has more of a positive impact.

10. Allow your natural thoughts to be noticed and see if you can give some distance to any difficult thoughts. Imagine balloons containing your thoughts, which will you hold onto and which ones can you allow to float away. Mindfulness and meditation are good practices and there are apps for your phone that mean you have them close at hand.

11. Find some balance. This can be keeping busy and productive balanced with rest and relaxation.

12. Practice rational optimism. This is accepting of reality, having hope and seeing that life is for living.

13. Make time to be together and focus on what you can do.

14. It’s ok to want your own space. It’s natural to sometimes need silence and quiet. Notice if this becomes unhealthy and you withdraw and reach out for support.

15. There are 2 special P’s that can really help us feel much brighter. Pets and People. Stroking a pet or spending time with animals can change how we view things and relieve stress The right people, supportive and positive listeners, are a great asset too,

16. Remember caring for you allows you to care for another.

Caring isn’t easy and it’s not possible to be positive every minute of every day. It’s often about drawing a line under the bad day and remembering the sun will come out again.

Recommended support:

Carers app called Jointly

10 steps to more resilience

Exploring Spirituality

Carers support

It has been a great pleasure to share this piece, and if you would like to contact Jayne and find out more about her work, you can connect here


  1. dear Chris,

    this is a wonderful post and so much of what both you and Jayne addressed about care givers is often lost in the conversation when it comes to their needs. I was very touched by your words about how much you cherish about your Wife in her role as a care giver.

    I was Hugh's CG for four years as he struggled with so much - multiple myeloma, PTSD, depression, surgeries, and then my own cancer diagnosis after his second stem cell transplant. it was only after his death that I realized that during that entire time I had my own struggle, one that I failed to recognize. grief, grieving - grief for so many losses in our life; dreams we dreamed of so many things - travelling, retirement, the loss of relative carefreeness, loss of normalcy in simple and ordinary pleasurable rituals and routines and the loss of safety and security that comes with the betrayal of a formerly healthy body. pretty ironic, since before Hugh's illness I was a hospice nurse. I have pondered the big "why" of how I did not connect the dots and came to the conclusion that I just was not able to allow grief to live next to the enormous hope I was holding onto, the hope that Hugh would be okay. had I at least recognized I was grieving, I would have reached out for help and would have had the guidance to see that grief was a whole separate issue, that it would not have extinguished my propensity for hope and eternal optimism. I hope that sharing this small, and yet so valid, part of my story will help others. and I thank you and Jayne for all the good suggestions and advice, and for the compassion expressed for care givers.

    much love and light,

    Karen xoxo

  2. Karen I extend a hug to you and thank you for such a lovely comment. I'm fortunate to have only had a short term care experience in my life to date, I am grateful that it was short term and also that it allowed me a glimpse of what life can be like. I've seen carers completely lose sight of themselves and feel guilt ridden as they do more and more to meet the needs of their loved one. Carers deserve our thoughts and support. My thoughts are now with you, Jayne x

  3. Hi Karen

    Thank you so much for your very moving comments. I know that from previous comments you have left on this blog, that we all learned so much from your experiences, and so value your contribution!

    This is another example Karen. The work that my wife does as a carer, is vital to what I am able to do. When I am running around to treatment and meetings, my wife is making sure everything is ok. All my meds and appointments etc, she organises. My concentration levels are now very low, and her work behind the scenes enables me to do what I do.

    I appreciate the role of carers, as I meet so many, in my work. But I do know that they have their own issues, many of which you have described above. Jayne writing her expert piece, gave me the opportunity to write this blog.

    You have been a caregiver both professionally and privately, and your comments are most valued. I was particularly struck by the point you made about grief living next to hope. You have prompted me to write about that in the coming weeks.

    I'm so happy to hear from you again, Karen, and I wish you well, with your own personal journey. Love and light to you, Chris xx

  4. dear Jayne and Chris,

    It means so much to me that you have taken the time to leave such lovely and encouraging words to me in response to my comment. being able to contribute anything of my story that may help others is so gratifying - and being grateful leads me heart and soul to a place of respite from so much that is happening in my life that is difficult. your words have uplifted me. thank you so much to both of you.

    much love and light,

    Karen xxoo