MY LOVED ONE HAS A TERMINAL ILLNESS

Monday 27th April 2020

Living with a terminal illness or caring for someone with a terminal illness is a painfully difficult time in ‘normal’ circumstances. Yet, under the unprecedented stresses we are currently living under, this can be an even more distressing situation. We are all now living with uncertainty and the associated anxieties. And so, these feelings are only like to be emphasised for those affected by a terminal illness. With the country currently in lockdown, we may feel we are unable to support our loved ones in their time of need or able to receive the support for ourselves. We are all feeling scared and alone, and these feelings are likely to be exacerbated for those living with a terminal illness or for those caring for someone with one.

We are sure there are many unanswered questions for those affected by a terminal illness at this time and we will try to answer these below. If you have any other questions, please do get in touch at  covid19@cthesigns.co.uk and we will try to answer them for you. If you have the questions, many others will too.

Visiting someone who may be approaching the end of their life

Firstly, it is important to note that it may not be an option for many of us to visit loved ones who are approaching the end of their life during the pandemic, and this would be a devastating position to be in for anyone. The advice below applies to those who may have the option to visit, for example if they are living at home:

  • There will be people approaching the end of their life in the coming weeks, leading to extremely difficult decisions for themselves and their families in these unprecedented times.
  • This is, as always, a very personal decision for a person with a terminal diagnosis and their loved ones to make together and with added uncertainties in the current climate.
  • When making this decision, although emotions will be strong and high, it is important to try to think about the risks to the individual, as well as the risk of spreading coronavirus to other family members or carers providing support. 
  • Some people may understandably decide that they still want to see their friends and family having considered the risks surrounding coronavirus. No decision is the wrong one. These are unprecedented times and until you are in this devastating position yourself it is impossible to know what will be best for you and your family. Each situation is unique. All we can recommend is that you consider the risks that exist.
  • It is important to keep in mind that if you do however develop symptoms of coronavirus to ensure you follow NHS self-isolation advice and stay at home.

For many it will not be an easy decision and many will remain unsure of whether to have visitors or visit someone with a terminal illness.

It may help to try and think about the decision pragmatically. Consider the different options, likely to be either to visit in person or have contact through video call, phone call or even through a window. Of course, the overwhelming desire will be to visit in person, as would have been the ‘norm’ just a few months ago. However, try to weigh up the pros and cons of each option considering risk as well as emotion. It is important to think about how the person affected by the illness feels about the different options as well as what family and friends feel. 

If the decision is made to visit your family member with a terminal illness then it is important to consider how the risk of spreading coronavirus can be reduced whilst visiting. 

Making this decision will not be easy at an already difficult time. You may want to discuss your decision with a healthcare professional. Another option would be to contact support services that are there to support you at this time (please see a list of contacts at the end of this article).

Visiting a care home, hospital or hospice

If your loved one is staying in a care home, hospital or hospice, there are likely to be restrictions on visitors. Most care homes, hospices and hospitals are only allowing limited visitors currently (and only when it is safe to do so). However, rules surrounding visitors can change quickly so it is best to check directly with the care home, hospital or hospice, before trying to visit.

What if I am unable to visit my family member or friend who is dying? 

This is a very difficult situation to be in and you will likely be having lots of different feelings about not being able to see your loved one at this time. Try to remember this is not your fault and the decision is out of your control. It is likely to be the best way to reduce the risk to yourself and others. 

Although it may not feel comparable, you will still be able to be in touch with your loved one and involved with their care. Where possible, try to get consent from the person to speak with their health and social care team about the care they are receiving or ask family and friends to keep you up to date. Staff caring for your loved one are likely to be able to help you spend time with the person you care about remotely by phone or video call. When someone nears the end of their life they may not be able to communicate but they may still be able to hear your voice over the phone and this could be a huge comfort for them, and for you. Also, consider sending a card to brighten their room or a letter to share your feelings.

Remember to look after your own mental wellbeing at this distressing time. It might help to talk to someone like another family member or friend about how you are feeling. Some people find it easier to talk to someone they do not know. For information regarding support services for people suffering from a terminal illness and their families, see the list below. Just by putting your feelings into words may help you to process the uncertainty you are experiencing and regain some sense of control.

Support for people with a terminal illness and their families

Marie Curie

https://www.mariecurie.org.uk/ 

Care and support through terminal illness.

Free Support Line: 0800 090 2309. Email Support: support@mariecurie.org.uk. Web Chat: https://www.mariecurie.org.uk/help/support/marie-curie-support-line/using-online-chat

Dying Matters

http://www.dyingmatters.org/

Support information for anyone approaching the end of their life, as well as relatives, friends and carers.

Together For Short Lives 

http://www.togetherforshortlives.org.uk/

Supporting children with life-threatening and life-limiting conditions and their families.

Helpline: 0808 8088 100 (lines open Monday – Friday 10am- 4pm)

Resource

This article was accurate as of the 27th April 2020.