This week is Carers Week, and we’re thinking of all the carers who are looking after someone with a life limiting illness. But how could you help them? How many times have you found yourself saying ‘Let me know if there’s anything I can do to help’, without really knowing what that person needs or what you can do? Paula cared for her husband Spencer who died in October 2019. Here she reflects on what you can do to help carers. She writes:
Being thrust into the role of caring for someone who is terminally ill, when often the person who is being cared for is a partner or a parent and we are used to them being able to support and care for us, is a whirlwind of activity and emotion. The NHS and multiple organisations like St Peter’s Hospice recognise how important caring for the carer is, and offer support practically and psychologically to those adjusting to this role. They recognise that keeping the carer well and functioning is a vital part of keeping the patient supported and at home. But what about when you are a friend or family member of the carer and you really want to help, what can you do?
Can you help?
It’s important to remember that not everyone is able to help. No-one is immune to their own troubles and we are all busy. There is also the case that the patient and/or carer are important to you too and the situation is upsetting. That’s ok. Think about whether you can help and whether you want to help and what help you could realistically give and then plan that help in, either directly or together with friends. Here are some ideas of the types of ways you could help.
Keeping in touch
When a person is dealing with not only the physical and emotional side of caring, on top of the normal life of work and perhaps parenting too, the world can seem a very lonely place. To the carer, the whole world is carrying on as normal and their life has turned upside down. Knowing that you are out there and thinking of them can be like a hand reaching out to hold theirs at a very dark time. Send a text, a photo of some flowers you passed on a walk, a photo of you and them together somewhere you enjoyed, a little card in the post, a heart emoji to their phone. Small gestures but they say “I am here and I am thinking of you” and that can be a real ray of light.
It’s natural to want to treat someone who is struggling and send or drop round a gift. Perhaps steer away from the usual chocolate or wine. You will know your friend but often when caring is relentless, remembering to eat healthily is low on the carers agenda. Adding to this is not necessarily the best idea. If you are dropping something round on their doorstep, then something nutritious to eat can be so welcome! A ready meal may not be something the carer would usually turn to but when they haven’t had time to cook for days and their loved ones are no longer eating the same foods, having something they can easily cook and enjoy can be a wonderful treat! Buy them a few for the freezer so they always have something to grab. Make sure they are things that can be cooked straight from the freezer though, some ready meals require 24 hours defrosting prior to cooking and that is a level of planning too far!
Flowers are a lovely gift but choose a pot plant or a bouquet that’s already in water as the arrival of something that needs effort at a difficult time means they become a task rather than a joy to receive. Gifts like hand cream or other luxury toiletries can be a welcome treat to enhance daily self care. And talking of self-care….
We all hear about it on the radio, on TV, in magazines and it’s easy to think you are being a good friend by telling someone, “Don’t forget to look after yourself!”. Self-care is for busy people who are working a bit too hard or have packed a bit much into their busy calendar. To someone who is up to their eyeballs in physical, medical and emotional care for someone they love on top of trying to cope with their own distress at the potential loss of this person, self-care might as well be said in a foreign language for how much they can relate to it. These are the times when we need family-care, friend-care, and community care.
Tell them what you can do
You may want to help but you know there are only certain ways which you can. Start them a list with 3 columns. Column 1 = the help that is offered, column 2 is who can do it and column 3 is how to contact that person. A large number of people saying “If you need me, I’m here, just call, is a wonderful thing but to an exhausted and emotional person, it’s too overwhelming. Make it clear that if you need food shopping call Joan, if the shower stops working call Mike, if you need someone to talk and cry with then it’s Emma. Take away as much of the thinking as you can and make the help as easy to access as possible.
Just do things
Sometimes just doing things is the best way to help. Saying “Is there anything I can do?” means the person has to think and the likelihood is their tired brain doesn’t want to think so they will respond with the easy answer, “No thanks I’m fine”. Give really specific offers of help, “I am going to do a food shop for you on Monday and I will drop it round in the afternoon”, “I will plate up some food for you and pop it round for you to warm up”. “I’m going to the chemist, can I pick up a prescription for you?”, “Can I skype your loved one so you can put your feet up for a while?” There is a definite feeling of not wanting to be pushy and so we are very good at just letting them know we are there but not being specific. Believe me, someone else taking control in whatever way and however short a period of time, is a true luxury.
Be forgiving and patient
The emotional toll on this person you love who is now a carer for a person they love is huge. They may not be sleeping, they may not be eating well, they may cry every time no-one is looking but they have to be strong to care and they will push through this and keep doing, doing, doing. As their friend you want to contact them and give them love and care and it may seem that your attempts are not being accepted or welcomed. Life can change daily and exhaustion may mean that even if they agreed to a plan to be in contact in advance they may not even know what day it is by the time they get there. Try to be flexible, be prepared to have that contact with them at very short notice and don’t give up asking if they can’t make it.
Supporting a carer in these ways will go a long way to helping ensure they feel that they are not alone, that they have one less thing to think about and that they are cared for and loved at a time when the world can seem like a very frightening place. And by caring for the carer you are caring for the patient too as when they are cared for they have more ability to give care. And remember for you, supporting and caring for people is good for your mental health and well-being too. So if you do have a friend or family member who is caring currently for someone who is terminally ill, give these suggestions a try. I know they will be grateful even if right now they don’t have time to show it.
Thank you to Paula for writing this for us.