A guide to caring for loved ones living with ill health
In our experience, when someone we love is diagnosed with ill-health, especially a chronic illness, we desperately want to help them: to doo something to try and make those we care so much for suffer less. And, at the same time we are afraid of accidentally making things worse: of saying or doing the wrong thing. Added to which is the unknown: new ‘territory’ which each of us must navigate for the first time.
At INGA Wellbeing patient clothing, we know all this because we have been there. We have learned a lot. Too much, arguably. We want to share our experiences, contacts and information with you and learn from your yours’. Together we can find the best way to care for those we love. Make life a little better, easier, as well as find the support we need to be effective carers by their side.
Whilst almost two thirds of Britons today have somebody in their close network of friends or family diagnosed with a chronic illness such as cancer, kidney disease, crohn’s or colitis our research shows that a quarter (25%) of all people feel powerless to know how to provide any real, practical help for their loved ones. One in five (21%) also feel such an awkwardness that they might do or say something wrong that they feel ill-equipped to even ask.
The net result of this fear of foot-in-mouth is that thousands of people are struggling unnecessarily through the most challenging time of their lives, in spite of the most immense amount of good will – whilst the only thing preventing thoughtfulness turning to helpfulness is awkwardness.
We weren’t surprised by this. In our own experiences of caring for loved ones through cancer, cardiac disease and ulcerative colitis we regularly came across people who clearly felt awkward where they never had before. Unsure of what to say, not wanting to start a conversation with ‘how are you’, as came so naturally, in case it was the wrong thing to say.
There were four main areas that the 2,000 people we asked in the research said they wanted to provide support, but were often too embarrassed to offer: Providing emotional support (73%); helping with transport to and from the hospital (64%); being part of a rota to help with errands such as dog walking, food shopping or cooking (58%); and buying them clothes that are adapted for the realities of their medical treatments whilst still allowing them to look ‘normal’ (30%). Each an extraordinary and much appreciated gesture that must not be left undone because they were unsure of how to go about it or felt too awkward to offer.
In response, the team at INGA Wellbeing created a Carers support guide, we call ‘With Love & Best Wishes’, to address each of these four areas on our website, providing information about tools, resources and products that allow loved ones to provide practical help that will make all the difference to those undergoing treatment.
Frustratingly, information about resources such as these aren’t always shared with patients or their supporters and so many are left struggling with not knowing how best to ask for, or provide help.
Don’t avoid the topic: many people are scared to say the wrong thing. Whilst my illness doesn’t define me, it is a part of me and I always feel grateful when people are mindful of that.
Nobody expects you to be an expert! Part of the issue is people don’t know a lot about other’s conditions. That’s ok! Don’t feel as if you should know it all-we’re only experts because we’re living it! One of the most helpful things you can do is ask questions and try to learn.
Don’t worry about ‘taboo’ phrases’ I see lots of articles saying ’10 things NOT to say to a chronically ill patient’, but I personally think it’s far better to talk about it and risk offending than say nothing at all. Most patients understand that phrases like ‘are you better now?’ and ‘you look well’ come from the right place.
INGA Wellbeing’s range of attractive, adapted patient clothing was inspired by our own experiences of ill health. Our collection of men’s and women’s wear, created alongside doctors, patients and nurses, has won international awards for both innovation in healthcare and for design. As highlighted most recently by NHS Chief Nursing Officer Professor Jane Cummings, what we wear during treatment is not about fashion it is about empowering people to get up, dressed and active with confidence and comfort in order to significantly improve patients’ mental and physical health.
#EndPJparalysis campaign founder Professor Brian Dolan agrees and said, ‘Being stuck in PJs or a gown leads to patients adopting the sick role more readily which we know is not good for their psychological wellbeing. Having clothing that is comfortable, addresses clinical requirements of drains, drips etc is what INGA Wellbeing offers and is a great solution that stops patients being a mosaic of detachable clinical conditions and humanises them again’.
The resources identified by INGA Wellbeing to address how best to support loved ones through treatment can be found at www.ingawellbeing.com/withloveandbestwishes. We would SO love to hear of any additional products or services that you have found helpful. Please do leave a comment on the post, or alternatively drop us an email here and we will share your suggestions.
With love and best wishes,
Nikla, Claire, Fiona & Christine