What we have to say Opinion and analysis The emotional rollercoaster of being a carer Ruby Bhatti says caring for someone with disease-related malnutrition can be challenging, it can be an emotional rollercoaster, for both patient and carer. Caring for someone who has malnutrition made me appreciate just how hard it is for someone to accept they have a problem. My role I care for Mr Z*, a relative who is in his 80s. He is a very reserved person and does not want anyone, besides his wife, to know he’s ill. He doesn’t really want me involved but I’m close to him and he doesn’t have anyone else to support them. Unlike the common perception of Asian families, Mr Z doesn’t have children or an extended to family to take on a caring role, and it is quite lonely for him and his wife. So he takes my help but can become irritated and upset when you try to get him to eat. Sometimes he becomes very emotional and that really worries me because his weight loss makes him extremely weak and unable to do the things he enjoys. Also, it can be hard for someone who’s ill to find the energy to explain to others what’s wrong or what they can do to help. When he gets upset that’s hard for me as it brings back sad memories of when my father was at the end of his life, quite frail and reliant on sip feeds. But I try to stay positive and smile for his sake and his wife as she is also poorly and old. Professional support I think health professionals could have picked up Mr Z’s malnutrition sooner than they did but he wasn’t seen because of COVID-19. I knew he wasn’t eating and was getting weaker and weaker. In the end, I insisted his GP visit him. The GP put him in touch with a dietician who phoned him and then prescribed nutrition drinks. He has professional support now but most contact is on the telephone. Mr Z finds this difficult because he does not feel the professional can see how he’s improved or feel what he is feeling as she cannot see him. It is fortunate Mr Z speaks English, but his wife speaks little English and cannot read English, and it would have been difficult for her to tackle this alone - she would have been unable to communicate with any professionals. I read the support information they share but it is difficult as food we have refrained from eating because it was on a red list of foods to avoid, are now on the so-called green list and Mr Z is so scared eating them may cause complications. Sometimes I find professionals become annoyed having to repeat to carers what has been said and then my relative becomes upset as he does not want to upset anyone. New resources I became involved in developing these new resources because something like this would have helped me guide my relative and also support the professional. These resources will be a support for anyone caring for someone with malnutrition. They are easy to follow and not complicated. The pictures also help those where English is not their first language. I can see how the resources will be able to help our relatives before the appointments. We can identify quicker what the symptoms are and what we can give them to support them. We can work hand in hand with the professionals instead of in silo. The impact is that the information makes it more inclusive for carers, family, and the patient. We can refer to it at any time and it is focused. Googling over the internet can be quite frightening and it can go totally off the subject matter. *Name changed to protect privacy. Ruby was a member of the focus group that helped developed our disease-related malnutrition resources.