Entitlements, funding, financial aid
Care services and entitlements will vary from country-to-country, even region-to-region depending on local and national health care systems. Some services may be state-funded but others may need to be paid for or will be means tested, so always check first. Contact the relevant government department that deals with state benefits. Also, the national Parkinson’s associations will be able to provide useful information and further details could be found by visiting a local library or using an internet search engine such as ‘Google’.
In some countries, funding limitations have meant that the spread of palliative care to illnesses like Parkinson’s, where the progression and duration can be uncertain, has been slow or limited. Discussions with the family doctor, medical team or local government office dealing with health matters may be required to determine which appropriate services and financial aid are available. Remember that sometimes the services and professionals who can help may not necessarily be labeled ‘palliative’.
Making a will
In most countries those aged 18 or over can - and should - make a will to ensure that when they die their property, including a house or flat, money and personal belongings, is distributed exactly as they would wish. A solicitor’s help is advisable and may be essential, depending on the country in which the person lives. A do-it-yourself document bought from a stationery shop or downloaded from the internet can be adequate in straight forward situations.
Do remember, dying without having made a will may cause problems for surviving relatives.
Putting affairs in order
Those with final stage Parkinson’s can greatly help friends, family and next-of-kin by preparing instructions detailing:
-
bank, credit cards, pension, tax district and any other financial contacts
-
telephone numbers and address of friends, family and colleagues
-
the location of documents such as 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.
Also discuss ethically controversial decisions, particularly in regard to treatment choices, in advance. For more information on this, see information sheet 4: Ethical Concerns.
Power of attorney
If a person is unable to manage his or her legal and financial affairs, they may need to appoint someone they trust to act of their behalf, such as a relative, friend or solicitor. This is known as ‘power of attorney’.
Those with life-limiting conditions, such as Parkinson’s, could consider taking out ‘lasting power of attorney’. This is appropriate for those who are currently able to manage their own affairs, but wish to appoint someone to look after specific aspects if they become incapable in the future.
Living wills (also known as Advance directives)
Just as a will sets out your wishes for after death, a living will (also known as an advance directive) establishes a person's wishes for what should happen whilst they are still alive, incapacitated by illness, unable to make medical decisions, or permanently unconscious.
It provides explicit guidelines relating to procedures and equipment designed to extend life. The author of the living will dictates what treatments should be given – if any – prior to the situation arising. In the case of a severe illness, for example, some may choose not to be resuscitated, not to be given artificial feeding or antibiotics and to refuse any treatment. This is sometimes called an ‘advance decision to refuse treatment’ (ADRT). However, it is worth noting that new treatments may be introduced in future that could affect choices, so it is sensible to review the ADRT regularly to ensure it is still an accurate reflection of your wishes.
Living wills are not common practice in some countries and are not always legally binding, so advice should be sought where possible from a solicitor or legal representative. It is also advisable that anyone contemplating a living will should inform their family or next-of-kin of their decisions to ensure that any potentially controversial choices are understood and accepted. If such a discussion is too difficult, it may be helpful to talk to a member of the multidisciplinary team or other support organisations who can liaise with family or next-of-kin on your behalf.
A living will must generally be signed by the person and a witness, and a copy may be given to the carer and doctor. In some cases, wishes can be discussed with the doctor, who will document them in the 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 the solicitor or legal representative or the doctor.
Within the living will, it is possible to give power of attorney (see above) to a close friend or relative. A solicitor or other legal representative will be able to advise on this.
For more information, contact your national Parkinson’s association.
Preparing to say goodbye
For many people, it is comforting to talk about the future and
to be able to say goodbye to their loved ones. Just as it is important to put
practical affairs in order, so it is important that emotions are expressed,
reassurance is provided and disagreements be set aside. Such developments also
provide opportunities to reaffirm feelings of love and help ensure things are
not left unsaid. Taking time to share emotions can provide people with a sense
of closure and the ability to cope with future grief.
Goodbyes will probably involve a subtle 'letting go' of a loved one over a
period of time. They are also likely to be repeated with different people in
different ways as it is impossible to know exactly when a person will die. It
is natural that many emotions will be felt such as feeling lost, upset and
angry. You may even find it hard to verbalise your thoughts or know what to
say; however, it should be remembered that 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 to them. The sharing of feelings is important to everyone involved –
adults and children alike – and communication lines should always be kept open. For more information on talking to your children about Parkinson’s, see Talking to your children about Parkinson’s.
Planning a funeral
Today, people view funerals as a celebration of a person’s life, and they can be therapeutic in helping to accept the death of a loved one.
Of course arranging a funeral will be hard. But it is possible to make the process easier for everyone involved by discussing what kind of funeral they would like. Each of us, regardless of the state of our health, should consider our own funeral. It will help those making the arrangements to know if a burial or cremation is preferred; where the grave is to be placed; whether a religious, non-religious, or humanist service is more desirable; and what readings or music should be included. There are relatively few restrictions surrounding funerals and many options. So, whilst it may feel strange initially, telling family and next-of-kin what you would like as a final send-off will help them enormously. And some find planning their funeral when they are able to research the subject brings a feeling of relief and a freedom to get on with their life.
For help in organising the logistics of a funeral, contact your local funeral director. They will be able to offer advice and guide you through the process. Details of directors can be obtained online or in the telephone directory. They may also be able to advise on the availability and eligibility of funding to help towards funeral costs. The local government office should also be able to assist regarding funding.
