Talk Through The Diagnosis
Supporting a loved one usually starts at the point of diagnosis, so knowing what to say and how to react is incredibly important, explains counsellor and psychotherapist Neil Wilkie: “If you can, be present during the diagnosis then go somewhere private where you can talk about how they are feeling. Cry, hug and hold each other to feel connected and, most importantly, really listen to what they say. You should also be ready to help with informed decisions they might need to make quickly, particularly if dealing with a terminal illness.” However, depending on the diagnosis, the news can be just as devastating for you as it is for a loved one, so feeling shocked is inevitable, explains mental health specialist Zoe Clews. “Shock will be your first emotion, even if the diagnosis was expected, because an adjustment to a new way of life is required. As the individual adjusts to a new way of life, whether temporary or permanent, a grieving process is likely to follow – because you might both be dealing with a sense of loss,” says Zoe.
To process these emotions, you need to talk through your feelings, says life coach Michelle Elman: “Provide them with a space to talk about it if they are comfortable doing so but, if they are not ready, remind them that you are there for them and will always be there for a conversation if they change their mind. The goal of these conversations is to reassure them and, whilst you can't know the outcome of their diagnosis or what the future holds, you can support them by validating their emotions whether their fear.”
Make Their Treatment Journey As Easy As Possible
A fear of the unknown can be difficult for both parties to face, particularly if the diagnosis is completely unexpected and you’re given a complex treatment plan. “To make their treatment journey as easy as possible, be there as a supporter at appointments where you can, listen to the doctors and ask important questions, especially when your loved one might not have the capacity to ask them or might be feeling overwhelmed,” says Neil. “Allow them to feel in control rather than having treatment imposed on them. You should also make notes, when appropriate, so you have clarity on their care plan and schedule.” Be specific with the support you can offer, explains mental health and wellness expert Alejandra Sarmiento. “The obvious thing you can do is ask them how to help, but it’s important to be specific – for example ‘do you want a lift to the hospital?’ or ‘what would you like from the shops?’ – as opposed to ‘let me know if you need anything?’. Keep in mind that some people aren’t used to asking for help or might be trying hard to maintain a ‘business as usual’ attitude, so don’t be downhearted if they turn down your offers; just make sure they know you’re there if needed.”
Do Your Research, But Don’t Overwhelm Them
Knowledge is power, so it’s a good idea to have an understanding of your loved one’s illness, without overwhelming them or yourself with information, explains Zoe. “It’s obviously helpful that you understand their illness in depth, as it can be comforting to know exactly what is going on and what you can expect. However, be careful on what you research and keep in mind that a lot of information on the internet is not medically correct. The first port of call should always be their medical team, not Google. Also, try to focus on researching people's recovery stories, which can provide hope and experiences they can relate to,” she told us. Michelle agrees: “When someone you love is ill, you can feel helpless and you might want to search for solutions. However, that's not what the person needs. They have a set of professionals to provide medical advice, so be sure to process your own feelings and research separately.”
Be A Good Listener
Learning to be a good listener and creating the right environment for sensitive conversation is key in offering emotional support, says Alejandra. “It’s important to create the right environment to make your loved one feel like they’re being heard. Find a spot away from things that normally distract you, put away your mobile phone, and show them that they have your undivided attention through your body language. Aim to listen with your heart as well as your ears.” Also, learn how to be an ‘active listener’, adds Zoe: “Active listening means making a conscious effort to hear not only the words that another person is saying but, more importantly, the complete message being communicated. This is about paying attention to the other person very carefully. It’s not a time to allow yourself to become distracted by anything else going on – either internally or externally, or with counter arguments. If you become bored or lose focus, quietly but firmly bring your attention back to what they are saying. The more you listen to someone, the more likely they are to listen to you, which ultimately results in a stronger relationship.” Having moments of silence can also be a good thing, suggests Neil. “Allow the silences to speak – a brief pause shows that you are engaged with what they are saying. After a pause, validate what they have told you, so they know that they have been heard and ask questions so you can further understand their perspective,” he advises.
Keep in mind that listening is just that – you don’t have to advise them, explains psychotherapist Audrey Stephenson. “You're not a therapist or their counsellor – you're just there for support. You don't always have to reassure someone that everything will be fine, because we cannot guarantee that. That might sound harsh or scary, but it’s an important point to remember. Frankly, when someone's dealing with a serious illness, they know that there are no guarantees. Therefore, it can be affirming just to have someone say, ‘Yes, that sounds awful and scary, I'd be scared too.’ Try to focus on the things you can do within your control, and stay positive and hopeful where possible. We know how powerful our mind is here, but there's a difference between denial and false promises.”
“One of the best ways to help a loved one through illness is to offer practical support, particularly with things they might not be able to do themselves or feel unable to cope with,” says Zoe. “Make a list, noting where they need support and any necessary adjustments that need to take place, for example changes in their living space, assistance with diet, sleeping or exercise, and ensuring things like prescriptions are collected on time. It’s also important to do all you can to ensure that they have adequate sleep and rest before any appointments. Be aware that they might feel anxious, irritable or agitated that they cannot do certain things themselves and remind yourself not to take anything personally.” If they’re reluctant to receive help, reaffirm that you want to help them, adds Neil. “They might say ‘I don’t want to be a burden’ or ‘I can manage on my own’, so it’s important to reassure them and make it clear you want to help them, as opposed to feeling like you have to.”
Enlist The Support Of Family And Friends
Don’t be afraid to ask family and friends for help, says Neil. “You should separate them into groups who have different roles within a support system. This includes those who can provide unconditional love (usually partners or close relatives) and those who can offer practical support. It’s also important to separate friends and family who won’t be able to support your loved one during this time – for example, those who might be an emotional drain on them, or those you can’t always rely on. However, find out what your loved one would like first – they may feel embarrassed or reluctant but, particularly if it is a terminal condition, friends and family should have the opportunity to give love and support throughout.” If you’re the main caregiver or are closely involved with the illness, ask your loved ones to support you, too, says Zoe. “Through difficult times, make the most of the people around you and ask them to help relieve you of the little things, like making dinner, picking the grandchildren up from school, or even distracting you with a coffee date. These acts of service will help you feel more supported, so don’t be afraid to ask for help,” she told us.
Try To Separate Your Feelings From Theirs
“Often, when we have good intentions to be compassionate, we can absorb and project someone else’s fears without realising,” explains Alejandra. Therefore, it is important to separate your emotions, so you can support your loved one without overwhelming them or making them feel worse. She continues: “At times, it can become very difficult to separate your own fears and emotions, so it’s important to speak with others you know and trust who will be able to give you the perspective that perhaps you have started to lose along the way. If you’re feeling really overwhelmed, talk to loved ones and consider professional help in the form of therapy.” You should also take time to process your emotions separately and when you are alone or not in their presence, explains Michelle. “People who are ill often have a reduced emotional capacity and are dealing with their own emotions, so don't take it personally if they don't have space for yours as well. Go to them and share if you’re scared or worried but do it with sensitivity and in a way that they won't feel like they need to caretake how you feel.”
Work Through Any Feelings Of Guilt
Guilt is a common emotion for caregivers and those supporting a loved one through illness. But it’s important to control those feelings so they don’t become overwhelming, explains Alejandra. “Feelings of guilt that are outside of your control are known as ‘unhealthy guilt’, as opposed to ‘healthy guilt’ which is an internal signal that tells you to behave better in future. Unhealthy guilt is irrational and makes you feel at fault about a situation over which you have no control. Feeling this way can be very damaging, leading to shame, a gradual erosion of your self-confidence and, sometimes, depression. Ask for support from loved ones who can offer a different perspective and reassure you that what you’re doing isn’t worthy of blame, shame or guilt.”
You might even feel a sense of betrayal at being healthy, compared to your loved one who is not, says Audrey. “You might think ‘why am I so fortunate?’ or ‘how can I possibly go to that party without them?’ or feel guilty for everyday pleasures like laughing or enjoying food. These are natural responses to the fear of someone being very ill and potentially dying. But it’s important for you to live your own life without feeling like you can’t enjoy it anymore, and catch up with friends, too. The more you live your life, the more you will be able to support your loved one. Remember how precious life is, and not just in perfect moments or special occasions, but on a day-to-day basis. Living and experiencing those day-to-day things is essential. It can also serve as encouragement and a reminder for someone who is really struggling that they're still here and, no matter what they’re going through, there will still be moments in each day that can help them to feel connected to life or other people.”
You should also open up the conservation with them and ask them about aspects of their life they might miss, suggests Michelle. “Ask how they feel when loved ones go to social events without them and what helps them more – not knowing anything, or being sent photos and videos to make them feel included. If it's the latter, then include them in the getting ready process or FaceTime them while you are there, but if they prefer to not know, respect that decision and ask them about their evening instead. Your guilt won't make their illness any less painful so contextualise the guilt as inappropriate.”
Take Care Of Your Own Health
Taking care of your own health, particularly your mental health, is just as important as looking after your loved one. “Make time for yourself,” says Alejandra, “ and don’t abandon the things that brought you joy; instead, try to compartmentalise the illness on occasions when you have the opportunity to concentrate on your own wellbeing.” Zoe agrees: “When spending time with family and friends, try to talk about other things that are not related to the illness. Engage in activities that distract you and talk about other things going on to shift your attention from what is causing you a lot of distress.” To do so, create a space for your own feelings and take time out to process your thoughts and emotions. Psychotherapist Andre Radmall adds: “Get as much support as possible. Support groups, faith-based groups, friends and family can all help. Find someone you can offload on, without overwhelming them, and maintain good habits such as exercise, good diet, getting enough sleep and taking regular breaks.”
Plan For The Future
Talking about the future when your loved one is living with a long-term illness, or might not be around to see your plans through, can be devastating. Nevertheless, talking about the future with your loved one is a good idea, explains Neil: “Plan things openly if their death is likely and create a bucket list of things they want to do or achieve, it doesn’t have to be anything elaborate.” There can be some comfort in planning ahead, adds Michelle, but ultimately, we cannot prepare for how we feel when the worst happens. She says: “Planning can be a positive thing, but playing out worst-case scenarios in our head doesn’t actually doesn't prepare us in any way. We tell ourselves that the more we think about it, the less it will hurt, but this is rarely true. Often, practical preparations are best, particularly in terms of end-of-life care.” Seeking professional help is a good idea too, suggests Alejandra: “Bereavement therapy is a great starting point. There are several stages of grief and generally people aren’t spared from many of them, so setting yourself up with a source of support is sensible. You can start bereavement therapy at any time, and many find it useful before their loved one has passed away.”
Need more information? Here, the experts share the resources available to carers and those in need of support…
The NHS offers support and benefits for carers or those looking after loved ones.
Carers UK runs a helpline for carers, available on 0808 808 7777 from Monday to Friday, 9am-6pm. You can also contact them via email at firstname.lastname@example.org
Dorothy House supports and works with people at the end of their life, as well as their loved ones who are pre-grieving. They operate nationwide, and most of their services are free.
Carers Trust is a charity for and about carers. They work to improve support, services and recognition for anyone living with the challenges of looking after ill loved ones.
Local support groups
Search Facebook or your local council’s website for support groups for carers and people experiencing grief.