End Of Life & Palliative Care Northamptonshire Carers offers help and support to those who are caring for someone who has been given the diagnosis of a life limiting condition. End of Life can be a confusing term and is defined differently by various areas of health and social care. It is sometimes referred to as a terminal illness, an incurable disease or as a condition needing palliative care. This could apply to cancer patients, those living with heart failure, degenerative neurological conditions and many others: COPD Chronic Obstructive Pulmonary Disease Huntingtons Sickle Cell MND (Motor Neurone Disease) MS (Multiple Sclerosis) Dementia Health services tend to describe end of life as the last year of expected life. Ideally, End of Life care should offer help to manage symptoms; emotional, spiritual and psychological support; practical support, such as planning for the future or supplying equipment. All with the aim of giving as a good a quality of life as is possible. Support for you as a Carer Caring for someone at End of Life can be difficult in many ways. There are all sorts of emotions involved: shock, depression and anger for the Carer and the person they are looking after. Watching the person you care for struggle with day to day tasks, being in constant pain, undergoing distressing treatment and managing their own moods is all demanding and can leave people feeling confused, distressed and exhausted. You, or your loved one, may just have received a diagnosis of life limiting illness or be approaching the end of that journey. Northamptonshire Carers can offer someone to listen to and talk to you - one to one over the phone, or at a group with other Carers. To access this support get in touch with us on 01933 677907. We also run or support two dedicated carers groups for those caring for someone with a life limiting diagnosis. These groups are: The Cynthia Spencer Wellbeing Hub for Carers which happens twice a month at Cynthia Spencer Hospice a drop-in and peer support session for carers supporting someone with a cancer diagnosis, which is held at the new Maggie’s Cancer Centre Northampton. Maggie's Cancer Centre, Northampton Practical things that you need to consider Planning Bucket List what do you want to see? is there somewhere you would like to go? a part of the world you would like to see? someone/some people you want to speak to What is important to you with regard to your loved ones culture, spiritual and religious beliefs Would you like to see a priest, minister, Imam, or other religious leader now or at the time of death Is there a ritual/process cultural or religious practices require at any stage Is there a specific request about how you would prefer to be treated and addressed Where does the person dying want to die? Do they want to die at home or in a hospice? Is it possible to remain at home – what support is available?, who is available? What about medication, equipment etc. Is it available? Have you been in touch with the local hospice. Support is available from them at every stage Where does the person dying want to die? Do they want to die at home or in a hospice? Is it possible to remain at home – what support is available?, who is available? What about medication, equipment etc. Is it available? Have you been in touch with the local hospice. Support is available from them at every stage https://cynthiaspencer.org.uk https://cransleyhospice.org.uk https://www.lakelandshospice.org.uk Hospice at Home *Cynthia Spencer House and Cransley Hospice also provide Hospice at Home services. Financial planning Check entitlement to benefits e.g. some end of life conditions lead to a SR1 form which entitles you to Attendance Allowance or PIP What are your rights at work as a carer? Does your family member wish to carry on working whilst receiving palliative care? DWP Financial Support Dcoument https://www.acas.org.uk/reasonable-adjustments https://www.mariecurie.org.uk/help/support/benefits-entitlements/living-with-terminal-illness/personal-independence-payment If you need more information or support, you can call the Macmillan Support Line free on 0808 808 00 00. Bereavement and Death benefits This link gives information about what you could be entitled to including a benefits calculator. Benefits and financial support when someone dies - GOV.UK (www.gov.uk) This can be a really difficult thing to do, there are many barriers to taking this forward. How do you start this conversation? Has the person come to terms with the diagnosis, it may need to be brought up sensitively and cautiously. Do you have a good relationship with them? Are they determined not to “be a burden”, affecting the way they express their wishes. Do they know what they want? Do you need to start with discussing options? Dementia and End of Life Planning end of life with a person with dementia can be complex. Care planning and power of attorney might need to be considered at a relatively early stage when loved one still has mental capacity. Considering end of life may conflict with a positive decision to live well with dementia. When someone is approaching end of life with dementia it is important to: Provide a calm and familiar environment. Stimulate the senses, for example with music and aromas the person likes. The focus should be on making sure the person is as comfortable as possible. Take your time and take cues from the person. Use what you know about the person to engage them. This could include hobbies and interests from their past. It can help to make use of a range of resources such as photos, objects and memorabilia. Guides and support available: https://www.nhs.uk/conditions/dementia/palliative-care https://www.alzheimers.org.uk/get-support/help-dementia-care/end-of-life-care-dementia Checklist Places to see People to catch up with Is staying at home possible? Talk to GP and hospice Will we need special equipment? Who can help? What professional care is available? Who can help look after me? Speak to family and friends? Can they cope? Is there support for them? Money Benefits Work Tax/allowances LPA Funeral plans How? Where? Religious/humanist? Community Specialist Palliative Care - Information for Patients, Relatives and Carers Manage Cookie Preferences