As you make end-of-life preparations with your partner or the person you’re caring for, there are various things you can do to help with both practical and emotional considerations.

Every adult should plan for the future to some degree to ensure that their wishes are known if they are no longer able to act for themselves.

Planning ahead will give you and the person you care for peace of mind as you’ll be confident what the right way forward is when decisions need to be made.

Some legal matters you might want to consult a solicitor or legal representative about are:

  • Making a will: if you haven’t already done so, make or update your will and encourage the person you care for to do the same.
  • Power of Attorney: you may also both want to appoint a Power of Attorney (someone you trust to act on your behalf and manage your legal and financial affairs) if you are no longer able to do so.
  • Living Will (Advance Directive): this establishes your wishes for what should happen while you are still alive in the event that you are no longer able to make decisions yourself. Examples include whether you wish to be resuscitated or given artificial feeding.

It may also be beneficial to get financial advice from a reputable independent financial adviser (ideally using a personal recommendation) or trained staff at your local social services office or citizens’ advice bureau.

Make sure the person you’re caring for has made a list detailing where to find their key documents, for instance:

  • Banking details, credit cards, pension, tax district and any other financial contacts
  • House deeds, life insurance and other insurance policies, mortgage and hire purchase agreements
  • Computer and phone passwords and login details
  • Personal documents like their passport, and birth and marriage certificates
  • The contact details of friends, family and colleagues
  • House and car keys

Carer support

End of life support is just as important for the partner or carer, and an important part of palliative care is meeting the needs of the carer and family.

Try to embrace any opportunity to discuss your needs with your multidisciplinary team – they will be very familiar with the kinds of support you might need, and can help with things like respite care, knowing when to withdraw treatment, and coming to terms with losing someone you care about.

They can probably also put you in touch with various other end of life support organisations that can help guide you through this challenging time, including practical help in the home and advice on caring, and support groups where you can talk to others in a similar situation.

Find more ways to support yourself as a carer.

Discussing end of life

It is important to be open about end of life issues and plan ahead to do the things you and the person you care for both want to do while you can.

It can be difficult to start conversations about this but the following may help you when having these discussions:

  • Talk about what the person you care for wants both before and after they die.
  • Discuss how you both feel about life prolonging treatments and organ donation.
  • Think about planning and paying for a funeral.
  • Talk about the dying process itself and what it means to you both.

You’ll be able to both provide and receive comfort and reassurance during this time, for instance:

  • Allow time to be together to talk, reminisce, read or watch television. Just being there can be very comforting.
  • Be a good listener.
  • Answer questions and try not to withhold difficult information.
  • Respect a need for privacy.
  • Give reassurance that any wishes expressed, perhaps in a living will, will be honoured.
  • Ask if you can do anything else to help.

Care homes, hospices and respite care

Over time, you may feel that you can no longer manage, and might need to consider alternative care options. This is completely normal, as in the later stages of Parkinson’s daily life becomes increasingly complex, so you should never feel guilty about seeking extra help.

There are several possible options to consider:

  • Respite care: for example, the person you care for may go to a day centre or care home for a short stay, on an occasional or regular basis. Find out more about respite care.
  • Retirement or assisted accommodation: you and the person you care for may be able to live in your own flat but have meals or personal care provided, retaining a certain level of independence.
  • Care homes: these are generally staffed 24 hours a day, 7 days a week, with meals and laundry included. Usually the carer is not a resident but this depends on individual circumstances.
  • Hospice: these provide more specialist care than care homes, usually in the advanced phase of a condition.

Finding help locally

The process for dealing with various aspects of end-of-life care differs from one region to the next, so we recommend contacting your local Parkinson’s organisation for advice about things like:

  • Finding a care home or hospice
  • Getting emotional support and counselling in the later stage of Parkinson’s
  • Funeral planning
  • Coping with bereavement