Caring for someone who is at the end of their life is an intense and demanding experience. Not only are you doing your best to make sure the needs of the person you are caring for are met, you may also be maintaining connections with family members, friends and health professionals, keeping them up to date with news of their condition and organising visits.
When managing relationships with family and friends, you may be involved in helping them to come to terms with the realities of the situation, and manage their emotions as they face the death of the person you are caring for. All this can cause added pressure and strain on relationships, and this is in addition to keeping yourself afloat and functioning during a time that can feel overwhelming.
Whilst you will naturally be feeling a complex mix of emotions at this time and may sometimes feel isolated whilst caring for someone near the end of life, it’s important to remember that you are not alone, and that helpful networks are available for you to draw on when you need support.
So, how to feel connected and maintain positive, supportive relationships when you are caring for someone at the end of their life? We’ve put together some practical ideas that might help during this difficult time.
Communicating and sharing with others is key to feeling connected, which in turn can help you to feel more relaxed and supported, soothing your nervous system during a time when emotions and stress may be running high. Talking openly about the diagnosis and what is happening for the person you are caring for, as well as any challenges, fears, and uncertainties can strengthen the bonds between you, and those around you.
If people can’t visit, you might ask them to offer their support in different ways. Texts, emails and messages through social media, phone and video calls are all great ways to connect, and for you and the person you are caring for to stay in touch with family and friends.
This is a time when many difficult emotions may be coming up for you, including anticipatory grief, as you deal with the realities of losing the person you are caring for. Whilst there may be times when you might feel overwhelmed and want to withdraw, having regular meetups and keeping conversations going with the people who are closest to you will be really beneficial. Sharing with a trusted friend, perhaps joining a support group for others going through similar experiences, or asking your palliative care team about what counselling services are available, can help you express your feelings in a place where you will feel understood.
As you navigate the hugely challenging experience of caring for someone at the end of their life, it’s crucial to remember that there is support available. Friends and family may want to help, some wanting to come and give hands-on emotional and physical help, whereas others may feel more comfortable providing friendship and support from a distance.
Friends and family might have lots of questions for you at this time, and you might not always have the answers, or the energy to explain. Asking a relative to be with you during professional visits so they can then share information on your behalf, or signposting friends to the professionals so they can talk directly, are both ways to support yourself through this. You might also find it helpful ask someone else to take responsibility for keeping friends and family informed with regular updates using a WhatsApp group or a closed social media page.
This can also be a great way to coordinate caring duties, as well as preventing you from having to repeat the same information to different people, which can be exhausting. If you do get offers of help, allowing yourself to accept them where you can and being open to suggest how people can best support you will be very valuable.
People do want to help you, and it will be important for you to have regular respite time so you can return to your caring role feeling more recharged. It will also be comforting to the person you are caring for to know that you are being supported too.
Towards the end of the life of the person you are caring for, people around you will be approaching the situation in their own unique way, with their age, their beliefs and their own experiences shaping their behaviour. You may have had some time to get used to the idea that the person you are caring for is at the end of their life, whilst others may be feeling very uncomfortable about the situation.
Once you are comfortable to do so, talking openly with them about the person you are caring for, using clear simple language to describe their condition and symptoms, can bring a certain measure of relief and encourage channels of communication to remain open. If some people have been worried about upsetting you, or not knowing how best to begin a conversation, modelling for them how you would like to talk about what is going on can help them feel a little more confident.
Whilst of course it will still be upsetting to talk about death and dying, bringing difficult topics out into the open can actually make them a little easier to deal with, reducing confusion and alleviating the stress of pretending that everything is normal, or that death is not going to take place. If there are children in your family, they will also need support as they deal with their feelings around losing someone they care about. We have put together an article on Preparing children for the death of a family member or close friend that might be helpful here.
If you are caring for someone who is at the end of their life, this is a journey best undertaken in partnership with others. Encouraging good relationships with the professionals involved and with friends and family, means both you and the person you are caring for will be able to navigate this end of life period feeling connected, supported and cared for.
At Carers First we can also offer you opportunities to connect with others and receive support at this challenging time. For more information on caring for someone who is at the end of their life, you can find our full library of articles here.