Caring for someone nearing end of life
Caring for someone nearing the end of their life will probably be one of the most difficult things you will ever do. However, knowing you've done everything you can to make sure your loved one's wishes are respected and that they pass away with dignity can be very comforting to you and to your loved one.
If you've only recently become a carer or aren’t already getting support, it is important to take advantage of the help on offer to you as a unpaid carer. You can find out more about this in our where to start section.
The Caring for Carers website is full of advice and information for carers who are looking after someone with palliative care needs. It has been created by a partnership of organisations including Marie Curie, Carers Trust and Carers NI.
What do you need to consider?
The NHS website has excellent information about end of life care including:
- Different types of end of life care (i.e. location)
- Information about benefits and coping financially
- Planning ahead (e.g making a will and making an Advance Statement)
- Managing pain
- Making the most of the time the person has left
- Where the person you care for can choose to die.
When does end of life care begin?
End of life care is support for people who are in the last months or years of their life. People in lots of different situations can benefit from end of life care. Some of them may be expected to die within the next few hours or days. Others receive end of life care over many months.
End of life care should help a person to live as well as possible until they die, and to die with dignity. The professionals providing their care should ask them about your wishes and preferences, and take these into account as they work to plan their care. They should also support you as their family member and/or carer.
Knowing what to expect
One of the hardest things about caring for a person who is end of life is knowing what to expect in terms of physical changes in your loved one as they near end of life. One question you'll probably have is 'how long?' and it's sometimes difficult for professionals to give you an answer.
Marie Curie have developed a guide which discusses the physical changes your loved one may go through in the final weeks and days of life so you have a better idea of what to expect. The booklet also covers things including coping with the diagnosis, making choices about care, financial issues and what to expect (physically and emotionally) in the last few weeks and days of life. The guide also includes a list of organisations who can give support on a range of matters.
Respecting the person’s wishes
Many terminal illnesses can affect people's ability to express their wishes. That's why it's important to make plans for end of life care early on even if it’s difficult to talk about. Would the person prefer to stay at home or be cared for in a hospice setting? Do they have any wishes about medication and pain relief?
The person managing their care should talk to them about this but as their carer it is important you know what their wishes are so you can help make sure they are followed. You may wish to find out about Advanced Statement and Decisions.
As well as looking after the physical needs of the person nearing end of life, hospices look after their emotional and social needs. They also support carers, family members and friends both before and after your loved one has passed away.
Hospice care is provided in a wide range of settings, not just hospice buildings. This could include the person’s own home, day centres and care homes.
For family members and carers hospices can provide services such as:
- Bereavement support
- Practical legal and financial advice
- Support groups and social activities for people who are recently bereaved
- Sitting services so carers can get a short break from their role.
Many have patient and family support teams whose role it is to give emotional support to you, your loved one and other family members.
In Derbyshire there are four main providers of hospice care that receive some funding from Derbyshire County Council and the NHS:
- Ashgate Hospice, Chesterfield, who provide a carers support service and groups
- Blythe House, Chapel-en-le-Frith, who provide a carers support group, a live well service and a drop-in information service
- Treetops Hospice, Risley, who provide a carers support group and a drop-in information service
The hospices also provide support services for children and young people, including young carers.
Helen's Trust based in Bakewell also provide hospices services. Their services are offered in people's own homes for those who would prefer to pass away at home.
Who will help deliver end of life care?
Who will be responsible for your loved one’s care will depend on where they have expressed they would prefer to die. The palliative care team will organise for them to be cared for according to their wishes.
You can find out more about the options on the NHS Choices website. The main options are:
Wherever the person you care for chooses to receive their care, you should be offered support as their carer/family member.
NHS continuing healthcare
If a person chooses to receive care at home, in a care home, or in a hospice, they should be assessed for NHS continuing healthcare.
Continuing healthcare is care given over an extended period to meet the physical or mental health needs of adults with a illness, disability or injury. It involves a package of care and support that is arranged and funded by the NHS and is free of charge to the person receiving the care. This is sometimes called "fully funded NHS care".
Support available if you are providing care at home to someone nearing end of life
If your loved one has chosen to stay at home and you are providing the majority of care, support is available for both of you. The care will likely be managed by your loved one's GP and the community nursing team.
The community nursing team should be able to help arrange support for you such as:
- Sitting services so you can take a break from your caring role
- Paid home carers to help you carry out tasks such as personal care and moving and handling
- Putting you in touch with local services for carers such as support groups and counselling services.
Caring for someone with terminal cancer
Macmillan has an excellent guide on caring for someone suffering cancer which covers both practical and emotional issues and also has a section for young people. They also have a telephone helpline which is open Monday to Friday, 9am till 8pm on tel: 0808 808 0000.
If the person you support has memory problems and cancer you may be interested in Macmillan's Cancer and Dementia Guide for Carers. The also have a guide which is aimed for the person with dementia and cancer.
Macmillan also have an online community where you can get support from other carers and people suffering from cancer. We also have details of other online communities/forums and helplines that help support carers.
The Marie Curie website has similar information and advice as well as a directory of services and blog posts where carers share their story of caring for someone nearing end of life. Marie Curie can be contacted on tel: 0800 090 2309
Caring for someone nearing the end of their life can have a big impact on both your finances and those of the person you care for. Our benefits for carers section will give you further information about the financial help you can claim as a carer.
The Derbyshire Welfare Rights Service will be able to check you and the person you care for are claiming all the benefits you are entitled to. You can contact their helpline between 11am and 4.30pm, Mon, Tue, Thur and Fri on tel: 01629 531535. You can also contact them by email: firstname.lastname@example.org
Other helpful websites and pages
- Bereavement support
- Marie Curie
- Help Guide - late stage and end-of-life care
- Dying Matters
- Alzheimer's Society
- Macmillan - carers guide for those supporting someone with dementia and cancer
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