Looking after a loved one with a terminal illness, such as cancer, is tough. But with the right information at your fingertips, a sensitive approach and a fair dose of support from family and friends, it can also be a rewarding experience.
Remember that someone who’s terminally ill is still the same person and wants to be treated as such. Many sick people find it hard having to manage other people’s grief, so make sure it’s not all about you.
Invite them to talk
Be willing to listen if your relative wants to talk about their illness, their fears or their life, but remember you’re not their counsellor. Night can be a frightening time, so, if you’re not on the spot, you could let them know they can call you at any time. Above all, just being there for them is what’s important.
Say the right thing
Never give false hope (‘we’re going to beat this’), ignore the illness or tell them they’ve had a good life. Concentrate instead on small goals such as the imminent birth of a grandchild or Christmas. Or simply shut up and give them space, if that’s what they prefer.
Your relative will have a lot to think about. You can help by keeping track of appointments and medication. The charity Carers UK, has a handy mobile and online app, Jointly, that allows you to keep all the important information in one place (carersuk.org/help-and-advice/equipment-and-technology/our-products-for-carers/jointly).
Find out about their rights
You can ease the administrative burden by dealing with matters such as state benefits, care assessments, accessing help at home and installing special equipment. Carers UK (carersuk.org) and the charity Marie Curie (mariecurie.org.uk) are useful resources.
Help tie up loose ends
Does your loved one want to sort out their will, organise their funeral, work out an advance-care plan, including what treatment they might want to refuse, or even be reconciled with someone? You can help them fulfill those wishes.
Offer a taxi service
Taking someone shopping, to appointments, to church or to visit friends can be a tremendous help if their mobility or energy are reduced. They may want to go on day trips, or even have a ‘bucket list’ of things to experience before they die. You can play a vital role by being their chauffeur or travelling companion.
Give physical support
A very sick relative may need help with washing, cleaning their teeth, eating, dressing, shaving, brushing their hair and going to the toilet. A woman may appreciate having make-up put on. And make sure the things they need are within reach of their bed or chair, including a glass of water.
Help them relax
Holding or stroking your loved one’s hand and gently massaging hands and feet can be soothing and reassuring. Soft lighting and music – keep a CD or MP3 player within their reach – can also be calming. And many sick people enjoy being read to, especially if reading becomes an effort.
Think about yourself, too. Try to get other relatives and friends on board, perhaps to organise transport, make meals for the freezer or liaise with other people. Consider respite care. Look for a support group for yourself – Carers UK may be able to help. Try to stay in touch with friends, if only via Facebook or email.