As you prepare for end of life there are various practical things you can do. Some that you may want to consider are outlined below. Always remember to ask in advance about costs if you approach a solicitor or other legal representative for advice and assistance.
Making a will
In most countries anyone aged 18 or over can - and should - make a will to ensure that when they die their property, money and personal belongings are distributed exactly as they would wish. A solicitor’s help is advisable and may be essential, depending on where you live. A do-it-yourself document bought from a stationery shop or downloaded from the Internet may be adequate in straight forward situations.
If a will has not been made this may cause problems for surviving relatives and may mean that your assets are not shared as you would have wished.
Putting your affairs in order
You can greatly help friends, family and next-of-kin by making sure they know where to find key documents. It will probably help to write a list detailing:
- your bank, credit cards, pension, tax district and any other financial contacts
- the telephone number and address of friends, family and colleagues
- the location of documents such as your passport, house deeds, insurance, life and other policies, mortgage and hire purchase agreements, birth and marriage certificates, as well as items such as house and car keys.
Power of attorney
You may 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. This may be a relative, friend or a solicitor. A written, legal document will set out the responsibilities of any person you appoint.
Living wills (Advance Directives)
Just as a will sets out your wishes for after death, a living will (also known as an Advance Directive) 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.
A living will provides explicit guidelines relating to interventions designed to extend life, for example you may choose not to be resuscitated, given artificial feeding or antibiotics and to refuse any further treatment. This is sometimes called an ‘advance decision to refuse treatment’ (ADRT). However, it is worth remembering that new treatments may become available that you may wish to take advantage of, so it is sensible to review an ADRT regularly to ensure it is still an accurate reflection of your wishes.
It is wise to inform your family or next-of-kin if you decide to make a living will to ensure that any potentially controversial choices are understood and accepted. If such a discussion is too difficult, a member of your care team may be able to talk with family or next-of-kin on your behalf.
You and a witness must generally sign a living will, particularly if it involves refusing life-prolonging treatment. A copy may be given to your carer and care team and in some cases, your wishes may be documented in your care plan and medical notes.
Of course, it is possible to make changes at any time – just ensure that all amendments are documented either through your legal representative or your doctor. Within the living will, it is possible to give power of attorney to a close friend or relative. Again, ask a solicitor or other legal representative for advice.
Living wills are not common practice in some countries and are not always legally binding. A solicitor or legal representative will be able to advise.
Finding emotional support
Whether you are the person with Parkinson’s, a carer, family or close friend, you may need support to help you think through and manage end of life issues.
Counsellors are trained to help people in difficult situations. They can listen to your concerns and help you find a way through them. Sometimes it helps to talk to someone other than your family as you can perhaps be more open and share thoughts in confidence.
Your care team will be able to advise how you can access counselling. This may be in a clinical setting or through a support or welfare centre. Depending on where you live this may be state-funded or you may need to pay for this service. Some hospices and charities offer counselling and your national Parkinson’s organisation may also be able to signpost you. You may also find further information at your local library or on the Internet.
Religious and spiritual support
Some people find strength and comfort from their religious or spiritual beliefs. Irrespective of your faith, talking to a religious or spiritual leader may help you to manage worries and fears as they are used to talking to people in a similar situation. Your local hospice may also have a chaplain you can talk to even if you are not being cared for at the hospice.
Preparing to say goodbye
For many people, it is comforting to talk about the future and to be able to say goodbye to loved ones. Just as it is important to put practical affairs in order, so it is important that emotions are expressed, reassurance provided and disagreements set aside. It is an opportunity to reaffirm feelings of love and a chance to say things that might otherwise be left unsaid. Taking time to share emotions can provide a sense of closure and a means to cope with future grief.
Goodbyes will probably involve a subtle 'letting go' of a loved one over a period of time. It is natural to feel many emotions such as feeling lost, upset and angry. You may find it hard to verbalise your thoughts or know what to say; at such times physical closeness and touch can be extremely comforting and help to emphasise the bonds and trust you share.
Children, in particular, need to prepare themselves for the loss of someone close. For more information on talking to your children about Parkinson’s, see Family and friends.
Planning a funeral
Today funerals tend to be viewed as a celebration of a person’s life.
Of course, arranging a funeral will be hard but this can be made easier by discussing wishes in advance. Each of us, regardless of the state of our health, should consider our own funeral, for example if we prefer a burial or cremation, where the grave should be, whether we want a religious, non-religious, or humanist service, and what readings or music should be included. Whilst it may feel strange telling family and next-of-kin what you would like as a final send-off, it will help them enormously.
For help in organising a funeral, contact your local funeral director. They will be able to offer advice and guide you through the process. They, and your local government office, may also be able to advise on the availability of funding to help towards funeral costs.
Articles from Parkinson's Life online magazine
- Why we need to talk about death and Parkinson’s
- Parkinson’s and end-of-life: “I’m not afraid of dying”