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. Thinking about the decisions in the future and planning ahead will give you, the person you care for and your family peace of mind as you will all be clear about the way forward when decisions need to be made. You may also feel more confident about what lies ahead if you have prepared in advance.
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) – You may both want to consider making a Living Will or Advance Directive to establish your wishes for what should happen while you are still alive in the event that you are no longer able to make decisions yourself. This would set out explicit guidelines relating to treatments designed to extend life, such as whether you would wish to be resuscitated or given artificial feeding.
Many people are reluctant to talk about money but caring may affect your financial position. If you don’t feel financially secure, you are more likely to worry and this may affect the quality of life and relationship you have with the person you care for.
You may find that your financial resources are limited because your income has been reduced. You will therefore need to make sure that you get the most from the money you have and take advantage of any benefits that might be available to you. Prudent long-term planning is important when caring for someone with a condition such as Parkinson’s, and remember to review your finances at least once a year, or whenever your circumstances change.
It is generally a good idea to take advice on various financial options and their merits from an impartial adviser who can help explain what can often be a complex matter – this may be a reputable independent financial adviser (personal recommendation is useful) or trained staff at your local social services office or citizens’ advice bureau.
In many countries legislation is in place to support carers, so find out what financial benefits you are legally entitled to. This may involve a formal assessment (see Finding support). Pursuing benefits may be time-consuming and frustrating, or even intrusive at times, but in the long run any benefits you receive can really help you to manage on a day-to-day basis.
Your doctor’s surgery or trained staff at your local social services office or citizens’ advice bureau should be able to provide information and further contacts to help with financial and benefit queries. The Parkinson's organisation in your country may be able to provide information based on members' experiences - see Our members and Other Parkinson's organisations.
Articles from Parkinson's Life online magazine
- "Unemployment, debt, poverty & depression… the life of a carer"