End of life at home and your choices

Your choices

• When you know that someone you live with is dying you may want to think, together with your loved one, where they would choose to be cared for when they eventually die.
• Marie Curie and Macmillan are two of the main cancer charities that produce excellent resources on supporting someone who is dying. Much of the content is relevant to any person’s death, even if they do not have cancer.
• Macmillan offers information on supporting someone who is dying so that you can know what to expect at the end of life and know where you can get support from.
• Marie Curie offers a free-to-download booklet on caring for a loved one while they are dying at home. It is supported by online videos for all the practical steps involved in caring. It also contains helpful information from benefits advice, as well as what to look out for as you care for your loved one.
• Tips on what you can do to practically care for someone in the last days and hours of life are available here.
• Perhaps by reading these resources with your loved one you may be able to talk together about what is in each of your best interests. You will also be able to discuss it in a more informed way with your GP and with the professional carers you are linked with at each stage of the dying process. This information may help you both to feel more in control of what is happening. You may also be better able to seek emotional and practical support from others to support you.

Members of your loved one’s healthcare team will also have left you with telephone numbers to contact them if you need to.

Doula

If you would like to speak to someone outside of your healthcare team for additional support you could speak to an end-of-life doula. These are trained people who sit with the dying and support those who are caring for them.

Caring for someone at the end of their life can be a time that creates precious memories, but it can also be demanding, both physically and emotionally. When your loved one does die it’s good to reach out to others for help to get through the grief that follows.

Learning disability

If you are caring for someone with a learning disability support to access appropriate palliative care, the PCPLD network has more information. Mary Stevens Hospice also offers information and tailored resources to help with palliative care. You can also speak to your community nurse (if you have one) or speak to your GP to discuss if a referral to Community Learning Disability Specialist Health Services at The Ridge Hill Centre would be beneficial.

Dementia

If your loved one is dying and has dementia the Alzheimer’s Society has information on end of life care for someone in the later stages of dementia.