Putting your affairs in order
It’s a good idea to plan ahead for when your Parkinson's becomes more advanced or in case you become unable to make decisions for yourself. This is particularly important if communication becomes a problem.
Janet and Aubrey's story
"I think about how vulnerable I might become. I'd want somebody to make really good decisions that kept me comfortable and were in line with my own choices."
Why do I need to plan for the future?
Many of us find it difficult to think about issues around death and dying and what will happen as we near the end of our lives.
But there are advantages to early discussion and planning. And you may find it gives you peace of mind to be prepared emotionally and practically.
Some of this may not relate to your current circumstances. But it's important to know what arrangements and choices you may want to make in the future.
Planning your future now with the people in your life may help you, your friends and family feel more confident and reassured about what lies ahead.
It also takes away the burden from family and friends of having to make decisions on your behalf.
Remember that any decisions you make now can be updated whenever you want.
Personal issues to think about
- Where you would like to be cared for (at home, in a hospital, nursing home, or hospice)
- Whether you would want to know about the effects of any treatment you may be offered
- Who should talk to children or close family about your end of life if you are unable to
- What you want your final days to be like
- Whether you want family members living abroad to be present in your final days
- Whether you have any specific cultural or religious wishes
- Whether you want your brain or organs donated
- Who should look after your pets
Looking after your affairs
On the more practical side of things, keeping important documents in a safe place and letting your loved ones know where to find them can make things easier.
Make sure your family know where to find:
- details of your bank, building society, credit cards, pension, tax, savings and investments, and any other financial contacts, including telephone numbers and addresses
- your passport, house deeds, life insurance and other policies, mortgage and hire purchase agreements
- birth and marriage certificates
- car and house keys
- usernames and passwords for any online accounts
- how to access important financial and other records on your computer
- divorce papers
- make a list of regular payments that will need to be cancelled, for example subscriptions you may have to societies or clubs, magazines, mobile phones or donations to charities
Making a Will or a Power of Attorney
Making a Will means that you can decide what happens to your property and possessions after your death. If you don’t make one, it may cause problems for relatives in the future.
Making a Will is important because otherwise your assets – savings, investments or property – will be divided according to legal rules rather than your wishes. This is particularly important in the case of step-children, who would be left out if there was no Will.
It is also a good idea to consider signing a Power of Attorney at the same time as making a Will.
A Power of Attorney is a written legal document giving someone else authority to take actions and decisions on your behalf. This is in case you are unable to make decisions at any time in the future.
Making an Advance Decision
Medical treatments require consent (this means a person needs to agree with them). But in case you’re unable to make decisions about your healthcare in the future, it is possible to make an Advance Decision.
An Advance Decision is used to specify which medical treatments you would accept or refuse under certain circumstances - either because you're unconscious, can't communicate or have lost the capacity to make decisions.
Brain donation for Parkinson’s research
The Parkinson’s UK Brain Bank provides human brain tissue to researchers around the world who are working towards a cure for Parkinson’s.
Research using donated tissue has already led to important medical breakthroughs in treating Parkinson’s.
Anyone can become a potential donor – including people without Parkinson’s. This enables researchers to compare what happens in a brain affected by Parkinson’s, with one that is not.
If this is a decision you are considering, it is important to discuss it with those closest to you to make sure they are aware of your plans.