Being with a loved one as they die

There are a number of places where you might be with someone dying for example; at home, in hospital, in palliative care, an aged care facility. Try to create an appropriate space and atmosphere. Check in with the person – their sensitivities and needs are paramount. Most hospitals will accommodate things like soft music, photos, meaningful things in the room. Visitors are generally permitted to stay around the clock, and they are often allowed to sleep in the room.

Things to consider when you are with someone who is dying:

• Be as prepared as possible. Death is certain, although the time of death is not
• It can be useful to have a support person for yourself.
• Consider plans for caring, death and the funeral. This may seem intimidating, but the person may want to have input.
• Environmental, psychological, emotional and spiritual needs all need to be considered, while the person can still communicate.
• Consider what you are capable of, and talk to other loved ones about their capabilities.
• There may be personal or emotional things they or you need to talk about.
• There is no certain timeframe, so you may need help with children, pets, and other commitments you may have.

When your loved one dies

If you have been with someone as they are dying, then it may not be a as shocking as you would expect it to be. But it may also be sudden and can catch you buy surprise. It might be when everyone leaves the room, it may be when you take a nap in the chair next to the bed.

You can take notice of the signs of the slowing down of your loved ones body’s functions, a gradual or lesser interest in external things, like the world, politics, religion, community, friends, and even family. They may be with their own thoughts and feelings.

Check in with them. If it is true, assure them that you love them, and that you are ok, that they are ok. If appropriate, you may want to touch them, hold their hands, kiss them gently, say your goodbyes. You may want to be quiet or laugh and be joyful, you may want to stay by their bed or leave and go home.

You can feel anything and everything, it can be confusing or clarifying. I have been with a number of people as they die and for me it feels as though time stops. There are so many emotions, sadness, anxiety, relief, excited, anticipation. Feel your emotions but remember that you are there to accompany your loved one, let their emotions and experience be at their fullest and lead the situation.

The  Victorian cancer council has some good information about being with some one at the end of their life. Whether your loved one is dyig from cancer or something else, the advice here is still relevent.

Providing practical support

You may find providing personal care awkward or embarrassing, especially at first, but most carers say they get used to it. However, your family member or friend may prefer to receive personal care from somebody they don’t know well.  This support can help reduce your stress and free you up to spend quality time with the person you’re caring for.

There are many things that family and friends can do to help support someone at the end of life.

• Do odd jobs and run errands – Friends can offer to step in with walking the dog, mowing the lawn, picking up the kids or doing the shopping – anything that eases the workload of the main carer.
• Prepare meals – Preparing meals for someone who is sick can become complicated as their needs and illness change. Try cooking simple, small meals. You may have to mash food so it’s easier to swallow – the palliative care team will have a dietitian who can advise you on what is needed. As the disease progresses, the person may lose their appetite and not be able to eat or drink. At this time, it’s important not to force eating or drinking. If the person cannot drink, chips of ice can help to moisten the mouth.
• Sort out the paperwork – For many people who are dying, getting their affairs in order can help them feel like they’ve given closure to their life. You can help gather important documents, discuss the person’s choices for their future health care, and arrange legal advice if needed.
• Assist with toileting – You may have to help the person get on and off the toilet or commode, help them use urine bottles or bed pans if they can’t get out of bed, and sometimes help them to wipe themselves. Lifting someone is hard work and you may need help with this, either from another person or mobility aids or equipment. An occupational therapist can help you choose suitable equipment.
• Help with bathing and washing – If the person you are caring for can’t move around easily, you may have to sponge bathe them or wash their hair over a basin.
• Help with getting in and out of bed – It’s common for a dying person to spend more time in bed. You may need to help them get in and out of bed, roll them over regularly so they don’t get bedsores, or lift them to change the sheets. You can use equipment to help with lifting. Many people create space in the living room for the bed, particularly if bedrooms are located upstairs. The palliative care team can help you provide this care and arrange equipment such as a hospital bed.
• Manage medicines – If you need to give medicines and feel overwhelmed, ask your doctor, pharmacist or nurses for suggestions. For tablets and capsules, a blister pack (e.g. Webster-pak) can set out all the doses that need to be taken throughout the week.
• Record social media details – People often have more of a social media presence than they realise. You can help the person work out which social media accounts they have and what they want to happen to these accounts after they die, and then help compile a list of passwords and instructions.

Saying goodbye

A life-limiting illness offers you time to say goodbye. You can encourage the person dying to share their feelings, and you can share your own in return. Sharing how you both feel can start important conversations, which can be memorable. This is also an opportunity for you to tell the person who is dying what they mean to you, and how you might remember them.

The person nearing the end of life may want to make a legacy, such as documenting their life or writing letters to family and friends. They may want to visit a special place or contact someone they’ve lost touch with. These tasks are all things you can help the person do. They are all part of the process of saying goodbye, for all of you.

When you don’t know what to say

People often wonder what they should say to a person who is dying. It’s understandable that you don’t know what to say – what you feel might be so complex that it’s hard to find the right words, or any words at all. It is common to worry about saying the wrong thing.

You may want to say something that would help them cope but don’t know what that is. It’s usually better to say something than pretend that nothing is wrong.

Someone who is dying will probably appreciate knowing that family and friends are thinking of them. Even if you feel you’re not doing anything, your presence sends the message that you care.

In her book The Etiquette of Illness ¹, Sue Halpern suggests asking, “Do you want to talk about how you’re feeling?” rather than “How are you feeling?” This approach is less intrusive and demanding. It also allows the person the choice to respond or to say no.

• Listen to what the person dying tells you. They may want to talk about dying, their fears or plans. Try not to prompt an answer that confirms what you think or your hope that things could be better. If you think they’d find it easier to talk to a spiritual care practitioner, offer to put them in touch with one.
• Try to treat someone who is dying as normally as possible, and chat about what’s happening in your life. This makes it clear that they’re still a part of your life.
• Avoid talking with an overly optimistic attitude, for example, by saying “You’ll be up in no time.” Such comments block the possibility of discussing how they’re really feeling – their anger, fears, faith and so on.
• Apologise if you think you’ve said the wrong thing.
• Let them know if you feel uncomfortable. They might be feeling uncomfortable too. It’s okay to say you don’t know what to say.
• Ask questions. Depending on how comfortable you feel asking direct questions and on their willingness to talk, you may ask, “Are you frightened of dying?” or you may prefer a softer approach, “I wonder whether there’s something you want to talk about?”
• Just be there. You don’t need to talk all the time. Sometimes it’s the companionship that is most appreciated – sit together and watch television or read.
• Encourage them to talk about their life, if they’re able to and interested. Talking about memories can help affirm that their life mattered and that they’ll be remembered.
• Accept that you or the person dying may cry or express anger. These are natural responses to a distressing situation.
• Even if they’ve shown no religious interest in the past, that could change as death approaches. You could offer to pray together, but respect their wishes if this is not something they want.

Keeping vigil

For many people, staying with the dying person is a way to show support and love. This is called keeping a vigil. You can simply sit with the person, perhaps holding hands. Hearing is said to be the last sense to go, so you may want to talk, read aloud, sing or play music. Your cultural or spiritual traditions may require someone to be present, and this may also be the time to perform any rituals.

Some people find keeping vigil exhausting and draining, and it can be hard to estimate how long it will last. Plan to take breaks or organise shifts with other family members and friends. You may worry that leaving the room could mean missing the moment of death. If this happens, it may be reassuring to know that sometimes a person seems to wait to be alone before they die.

How you can help in the final stages

Wherever someone chooses to die, family and friends can provide general care and comfort in the final stages. If you are providing care at home, ask for help from your palliative care team or other organisations. In a palliative care unit, hospital or residential aged care facility, ask the staff how you can be involved.

Atmosphere

• Use soft lighting.
• Have their favourite music playing in the background to create a gentle and peaceful atmosphere.
• Quietly read a favourite poem, passage from a book, or spiritual or religious text.

Comfort

• Apply lip balm to dry lips, and keep the mouth moist with ice cubes.
• Add incontinence sheets under the bed sheets.
• Use a vaporiser in the room.
• Keep the person warm with a blanket and use cushions to make them more comfortable.
• Help the person change positions frequently.

Gentle presence

• Sit with the person and talk or hold their hand. Often just being there is all that is needed so that they don’t feel alone.
• Gently massage their hands or feet with a non-alcohol- based lotion.
• Don’t force-feed even though you may be distressed by their loss of interest in eating.
• Speak gently, and occasionally remind the person of the time, place and who is with them.

Making arrangements

As death approaches, speak to the palliative care team about what to expect. You may want to consider various arrangements.

Rituals

Ask the person  what rituals or ceremonies are important to perform.

Keeping the body at home

Some people want to keep vigil after the person has died – you can have the body at home for up to five days, so let the funeral home know if this is your wish.

Ambulance service

Ask your health professionals who to contact if complications arise at home. Your first reaction might be to call an ambulance, but an ambulance officer’s duty of care may mean they have to resuscitate. If this is something the person you are caring for would prefer didn’t happen, it’s worth thinking about other options. You can also contact the ambulance service in your state or territory to find out if you can arrange a document so they are not compelled to resuscitate.

Contact list

Ask the person who they would like to have visit in the final days and who to call after the death.

Ceremony

Find out what the person would like done with their body after death. Some people have strong views about whether they want to be buried or cremated, what sort of ceremony they want, and what type of memorial they would like.