Taking care: How and why ‘carers’ also need support

A few years ago, the partners of a couple of Shine members approached us about starting a ‘Plus Ones’ group. Having cancer is tough, they noted – but so is supporting someone with cancer. We started our Plus Ones group online and it’s continued to grow over the years. As we’ve worked more on supporting the supporters, we’ve also learned more about the issues that they can face.

In this blog, Dr. Jason Spendelow (one of Shine’s original Plus Ones) outlines some of the issues that ‘carers’ often face when supporting someone with a life-limiting illness. We know a lot of Plus Ones don’t consider themselves carers (78%, according to a recent survey that Shine carried out!) but we hope this gives you some insight into the support that someone looking after a young adult with cancer might need.


 

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Those who provide significant levels of care to another person are more than twice as likely to suffer from poor health than non-carers.

While carers do report many positive experiences, the physical and psychological wellbeing of this group is often compromised due to the stress associated with the support they provide. Those who provide significant levels of care to another person are more than twice as likely to suffer from poor health than non-carers (Carers UK, 2004). When asked directly, the vast majority (84%) of carers said that caring had a negative impact on their health (Carers UK 2013). Carer wellbeing, then, is a particularly important topic in cancer and other chronic illnesses. Carers provide a huge amount of support to loved ones affected by these illnesses. This means it is even more crucial that we take care of the carers.

Mental & Physical Health

We have an increasingly large pile of research available on carer wellbeing. From this, we know that psychological issues are among the most commonly reported difficulties amongst carers (Stenberg et al 2010). An important concept here is ‘carer burden’, which refers to negative emotional experiences that occur from providing care. The level of carer burden varies from person to person, with higher levels of burden being linked to female carers, living with the care receiver, spending large amounts of time caring, being socially isolated, under financial stress, and having no choice in becoming a carer (Adelman et al 2014).

Carers can experience a range of psychological difficulties. Some of the most common issues tend to be low mood and depressive symptoms, elevated levels of stress and anxiety, and lower quality of life (see for example, Braun et al 2007; Pinquart 2017, and Easter, Sharpe and Hunt 2015). Rates of depressive and/or anxiety disorders are higher amongst adult carers when compared to the general population. These figures do not mean that you are destined to develop such psychological issues, but carers are clearly more vulnerable. In late 2016, Shine carried out a survey of Plus Ones and found that 58% had experienced stress, and 77% had experienced anxiety.

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Shine’s first Plus One workshop covered how to cope with anxiety.

In addition to psychological difficulties, carers can experience decline in their overall physical health. Physical health problems vary and range from fatigue to insomnia, headache and gastrointestinal issues (Jassem et al 2015).

Positive Experiences

Despite the physical and psychological challenges discussed above, many carers can also identify positive aspects of their experience. Some of the reported positive experiences included being able to give back to someone, knowing the person is being well cared for, improved relationships, personal growth, and an enhanced sense of meaning or purpose (American Psychological Association 2018). Finding meaning and purpose is an experience reported across several groups of carers (Carers UK 2004). Being able to help is a source of satisfaction for many carers, while ‘giving back’ to someone and having an equal or reciprocal relationship are other positive outcomes (Spendelow, Adam and Fairhurst 2017; Buchanan et al 2009), Ribeiro and Paul 2008). The relevance to wellbeing is that experiencing positives from caring help people to cope better with the stress that comes their way.

Taking care of yourself

Your wellbeing is influenced by many factors. Believing that just one ‘thing’ is the cause of any experienced psychological difficulties is usually inaccurate and unhelpful. Attempts to improve your wellbeing, therefore, usually involves taking several factors into consideration. Look, I could bang on here about all the things you know you should be doing already: getting plenty of sleep, exercising, and eating vegetables. Yes, this is all true and fundamental to your health. But I won’t repeat the same advice given millions of times already.

Perhaps a more useful strategy is to ask ‘What barriers stop you from taking better care of yourself?’ and, more importantly, ‘What can you do about these barriers?’. Some barriers are physical: for instance, you don’t think you have time to look after yourself. Other barriers are psychological. For example, some carers feel that it is selfish to prioritise themselves over the loved one they support. Asking what barriers exist (and why) helps work out what might have gone wrong with previous failed attempts to take better care of yourself. These barriers need to be directly addressed, otherwise it doesn’t matter how many times you are told to go for a walk and eat some broccoli.

It may be that you need to discuss this issue with a sensible person that you trust in order to make progress with your wellbeing. Having said this, here are a few questions you can ponder to get you thinking more about barriers to better self-care:

  • What emotions might you experience if you put more time into self-care?
  • Why do you think you would experience those particular emotions?
  • What do these emotions say about your attitude to self-care?
  • What would have to change in your life to result in more time given to your wellbeing?
  • How might the wellbeing of the person you support be negatively affected if you spent more time looking after yourself?
  • What would be the worse thing someone could say about you as a carer? How does that influence your self-care?

 The Bottom Line

Carer wellbeing matters, both to the quality of life of the carer, and the wellbeing of the loved one that the carer supports. To cope with the huge challenges brought about by cancer, you need to be thinking of self-care strategies that are positive and sustainable over the long-term. If you fall over, both you and the person you care for will find things even tougher. Thinking about barriers to self-care can be a useful way to better understand your current approach to your health, and how you can improve it.

Jason is a clinical psychologist with a special interest working with people and their carers affected by chronic illness and disability. He also supported his wife through cancer. He runs his practice in Surrey. See more at www.jasonspendelow.com

To join our Shine Plus One Facebook group, click here. To join the mailing list for Shine Plus One events, please email plusone@shinecancersupport.org.

 

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Life, but not as you knew it: Being a “Plus One”

Most of the blogs we feature are written by young adults who are living with cancer – but who cares for those who care for us? And what does it feel like? In our latest blog, Caroline writes about coping with her husband’s diagnosis and the ways she found to look after herself when everyone was relying on her. Shine has a small but growing “Plus Ones’ network. If you’re a partner, friend, parent or sibling of a young adult with cancer, why not join our growing Shine Plus Ones network? We run it via Facebook – just click on the link and request to join.

As always, we’d love to know what you think about this blog – and please share it with anyone you know who might be interested!


Cancer barged into our lives uninvited, ruthless and arrogant, and rapidly took the reins. Even before my husband was diagnosed, we knew something wasn’t right and our lives had already changed significantly – mostly in terms of anxiety. I would lay awake in the still of the night, hugging my nursing daughter close, terrified that I might soon be a single mum. Our life full of promise – in a new home, a new job, new friends and a new baby – was stopped in its tracks. The foundations of my life were suddenly very unstable and a new role as “carer” had been thrust upon me.

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Blogger Caroline Puschendorf

Cancer became our dictator

From the day we received the diagnosis – germ cell carcinoma, intermediate stage – the loss of control of our daily lives seemed to escalate. My life was no longer about running the home, toddler groups, changing nappies and days out as a family. It became about appointments, test results, clinics and chemo. As much as I tried to keep things “normal” for the kids, the inability to plan was overwhelming. Even mundane decisions that I previously took for granted were no longer within my control. I didn’t know from one day to the next where our family would need to be or who would look after the kids and for how long. The unpredictability of my husband’s symptoms challenged family life even on the days that weren’t disrupted by unscheduled or delayed hospital appointments.

Then, just as we were settled into a rhythm with chemo and had a “treat to cure” plan, my husband got very ill with a virus while he was neutropenic. We were back on high alert. This was a stark reminder of the fragility of our situation, the uncertainty of the future and my perceived powerlessness.

I was exhausted, emotionally drained, and my own health was beginning to unravel

Caught up in the adrenalin and anxiety of my husband’s health crisis, I neglected my own health, both physical and emotional, by repeatedly prioritising my family. I slowly realised that my health was just as important – after all, everyone was relying on me, plus it was one thing I could control. I chose to invest in myself and to proactively nourish and nurture my family. I researched and developed a “no-fad” cancer-patient friendly eating plan and set about caring for my family’s health.

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Caroline’s husband, Rob, and one of their children

As a biologist I am well aware that our bodies need a plethora of resources to function at their best. We need nourishment, rest and movement in unique and varying amounts, especially in sickness. Only when balance is achieved do we build the reserves we need to invest into others and/or support our body in recovering from illness.

Having been a carer with two young kids, I know how important my health is, but also how easy it is to put it at the bottom of the list, but once I adopted some simple strategies, my emotional and physical health – and that of my family -massively improved.

Staying in the moment

  1. Being still for 5 minutes each day. Simply breathe and be there. Accept all thoughts and feelings that come, embrace and experience them,–especially the hard, gut-wrenching ones, then release them. This is difficult, as we get so used to suppressing emotions and putting on a brave face, but this strategy stopped me misdirecting my anger, anxiety and frustration at unsuspecting and innocent parties. For example, I realised that when my son’s behaviour was uncharacteristically awful, it was actually a reflection of my anxiety, fear or stress. Acknowledging these emotions allowed us to enjoy each other and have fun.
  2. Connecting with my husband. It’s easy to slip into the role of carer and loose touch with your old relationship. Make time to love each other in the way that you used to; a partner, sister, brother, son or daughter. Love without pity, sympathy, anger or fear. Just be there with love and laughter. Remind yourselves of what you mean to one another.
  3. Being grateful every day. I used to get annoyed when people said this to me, were they expecting me to be grateful we had cancer? That’s not what I am saying. I am saying find the positives, even the little ones, each day. Is the sun shining? Did you find a parking space? Did you get good results? Were you able to share time together? Getting into the habit of thinking through the positives, event while you brush your teeth, can be a powerful thing!

Taking control of my health

In addition to the above, I also made a few changes to my diet and routine:

  1. I took Epsom salt baths 1-2 times a week. This was amazing for alleviating tension and encouraging a peaceful sleep – something that was very elusive!
  2. I cut back on caffeine and sugar. These are easy to over-dose on, especially during times of stress, but they ended up making me feel irritable and tired, which was less than ideal. I also stayed away from hospital vending machines and made sure to take healthy snacks – like fruit and raw nuts – to our appointments.
  3. I implemented a “no-fad” cancer-patient friendly diet. Taking charge of family health through food was really empowering. I found a way of eating that suited the whole family and was based largely around a mineral broth.  It was easy to eat and highly nutritious food that worked well for a chemo-weary tummy!

After three rounds of BEP chemo and major abdominal surgery, my husband is now in remission. Life is slowly returning to a new kind of normal, and that’s ok.  Cancer slowed us down and changed us, but it hasn’t broken us. There’s a lot of life to live and we are bouncing back!

Caroline Puschendorf is a nutrition and health coach who blogs regularly here.  For some of her recipes, including her Super Mineral Broth, look here.