When we have a loved one who is being cared for at the end of life, the choices and decisions we make matter. A key part of palliative care is about helping people make informed decisions in advance if they can; for example about where they want to die and how much medical intervention they might want when they become more unwell. This all forms the picture of what is known as a ‘good death’.
Where possible palliative care teams like to involve and support family members and other people close to the patient when making these decisions. Unfortunately however due to COVID-19, situations are arising where family are self-isolating and not able to be with their loved one at critical times including sadly when they are dying. Services are restricting visitors and others may stop visiting altogether.
This can be distressing for people for many reasons:
- They may be used to seeing their loved one daily, particularly if they are a spouse, partner or someone they have been caring for at home.
- They may have to stay away from their loved one for longer periods of time. Self-isolation is often at least 7 days, or 14 if you live with others. This can feel like a long time for someone if they know their loved one maybe in the last few weeks of life.
- Choosing to be there and saying ‘goodbye’ towards the end and at the moment of death is an important part of the grieving process. Physical connection can be as important in death as it is in life, and people may wish they could hold their hand or offer comfort.
- People may no longer have access to their usual ways of coping. Whether this is attending church, going to the gym, seeing a friend for coffee or going to see family, these things are no longer accessible.
When you are in self-isolation, these choices are taken away from you and can leave you feeling a whole host of feelings, from helplessness and frustration to numbness and distress.
Here are some suggestions to help you and your family cope with this:
- Try and think about this situation ahead of time, and plan to put things in place to support you, your family and your loved one. Don’t be afraid to have difficult conversations a bit earlier than you’d thought.
- Talk about what you can do for one another- if someone is able to visit, can they take gifts or help facilitate phone calls while they are there?
- Use digital communication where you can. Video calls can be valuable.
- Work with healthcare staff. This is an ongoing situation and will change. Nominate one member of the family to contact the unit regularly to get updates and then share with the rest of the family.
- When speaking to healthcare staff, think about questions you have ahead of time and what you want to know.
- Write letters, ask children to draw pictures, print photos and send them to your loved one for them to look at and read.
- Record audio or video messages from family via a messaging app. These can be replayed and kept if needed.
- Try and keep a rough routine for when you are self-isolating in order to maintain some normality within life at home.
- Allow yourself some time to sit with your feelings. Don’t be afraid to cry, this is an understandable reaction to a difficult situation.
- Choose an item of your loved one’s clothing, a cushion or something meaningful, and hold it close to you. This will offer some physical comfort.
- Focus on looking after yourself. It may be the last thing on your mind, but spending some time focussing on your own wellbeing is important.
- Think about self-care that you can do. Can you alter your usual coping methods? For example, rather than meeting a friend for coffee, arrange a phone call with a friend at 11am and have a chat while you have your coffee at home.
- Get outside. Try and get some time outside in the fresh air if you can. This can help clear your mind and calm you down.
- Reach out to others in your family. Many will be at home and most likely able to take a phone call.
- Ask for help if you are becoming very distressed. Phoning a support line can help.
A list of helpful resources are available on our website:
What is a ‘good death’? https://www.mariecurie.org.uk/blog/what-is-a-good-death/48655
Self Isolation advice- https://www.nhs.uk/conditions/coronavirus-covid-19/self-isolation-advice/
Emotional Wellbeing links- https://www.nhs.uk/conditions/stress-anxiety-depression/
Useful support contact list- https://www.oakhavenhospice.co.uk/wp-content/uploads/2020/03/Helplines.pdf