If someone close to you is at the end of their life, going into a home or hospice may be the best decision for them. But it can be a difficult change to deal with, especially if you wanted to care for them at home. Here are some tips on coping with this change and what support is available for you when someone is dying away from home.
Visiting someone at the end of their life
It can be physically and emotionally draining if you’re travelling back and forth to visit someone at the end of their life. It’s common to feel a mix of emotions, including:
- anxious that they might die when you’re not there
- panic every time the phone rings
- stress if you have other responsibilities like work and childcare
- exhaustion, especially if you cannot sleep
- a lack of control, guilt or helplessness.
To help you deal with this and have some control over the situation, it may help to:
- keep practical things you might need in a bag, like snacks, drinks, a phone charger or battery pack, a book and headphones
- keep a list of things you need to do and delegate what you can to friends and family
- have some ready meals in the fridge or freezer
- check public transport or parking if you need to travel to visit.
Keeping in touch if you can’t be there in person
There are things you can do to keep in touch if you’re unable to visit them in person. It may be possible to:
- organise a phone or video call
- send messages and photos through texts, emails, letters or cards
- send or make a gift.
If they can talk, it can help to find out when they have the most energy during the day, or if there are any times when they feel lonely.
Even if they’re unable to communicate, they may still be able to hear your voice on the phone. You could try organising a call by asking the staff or someone who is able to visit.
Speaking with someone by phone or video is not the same as seeing them face to face. It can be a distressing experience, especially if the person isn't well enough to talk to you. It's OK if you decide not to do this. You may find there are other ways you can feel close to them, such as:
- asking staff or someone who can visit to read messages or letters for you
- sending messages and photos through texts, emails, letters or cards
- sending or making a gift
- asking staff or someone who can visit to let the person know that you’ve called to check how they are.
Managing your work commitments
Caring can feel like a fulltime job. It can help to let your manager know what’s happening if you work as you may need to ask for time off.
You could ask them about their policies for flexible working to see if there’s an option for you to:
- work from home
- job-share with a colleague to split your work load
- work compressed hours or reduce your hours.
You also have a right to take off a ‘reasonable amount’ of time for emergencies.
Managing other care responsibilities
You may have other care responsibilities, like childcare, caring for other adults like parents or in-laws, and looking after pets.
Think about whether your friends and family can help you. For example, with lifts, cooking dinner, or feeding and walking pets.
Keeping others updated
Other people may be concerned and want to keep in touch with you and visit the person. It can be hard to keep them updated and answer their questions, especially when they offer to help.
To make it easier, you could try:
- creating a private group on a messenger service like WhatsApp or Facebook to keep everyone updated at the same time
- asking family or friends to keep others updated for you
- letting them know when they can call you.
When it comes to visiting, how the person feels may change day by day. It’s best to check with them if they want visitors before arranging. If they decide they don’t want to see anyone, it doesn’t mean they don’t care – people respond to situations in different ways.
Emotional support for you
This is likely to be an emotionally draining time for you. If you’re finding it hard to cope, speak to the team at the hospice, hospital or care home. It’s part of their role to support both the dying person and those close to them.
There may be a quiet room, prayer room or garden you can use if you need some time out for quiet reflection. They may also have a chaplaincy team, which includes members of different faiths. This service is available to everyone, whether you have a faith or not.