Preparing for end of life
Whether you are a person with Parkinson's or a relative, friend or carer, thinking about the future now may help you feel more in control and confident about what lies ahead.
This section looks at the practical and emotional issues relating to Parkinson’s and the later stages of life.
This includes decisions you may need to make and the care you would like to have, and how to put your affairs in order. There is also advice and information for carers, close family and friends, including how to arrange a funeral and finding bereavement support.
Thinking about the future now, and discussing your wishes and preferences with the people in your life, may help you feel more in control and confident about what lies ahead.
It also takes away the burden from family or friends of having to make decisions on your behalf, should you become too ill to make decisions for yourself.
How will my Parkinson's progress?
For the majority of people, Parkinson’s will not significantly affect their life expectancy. However, some of the more advanced symptoms can lead to increased disability and poor health, which can make someone more vulnerable to infection.
Parkinson’s is a progressive condition. This means it will get worse over time. It’s difficult to predict at what speed your Parkinson’s will progress or what symptoms you may get, because the condition is different for everyone.
Most of the current treatments involve managing the main movement symptoms of Parkinson’s, which are tremor, rigidity and slowness of movement. Over time, these can affect everyday activities, such as walking, talking, swallowing and eating.
As well as problems with movement, you may experience symptoms such as tiredness, pain, depression and constipation. These symptoms can also often be managed with treatments and therapies.
Some people also find they experience changes in how their mind works. This may be a side effect of some Parkinson’s medication and can include difficulties with memory, concentration, hallucinations, delusions, anxiety and depression.
Your GP, Parkinson’s nurse or specialist should be able to advise on treatments to help with this, too.
If you feel your condition is changing, or if you have concerns about the future, speak with your Parkinson’s nurse or specialist. Such a conversation can often put your mind at rest.
In the advanced stages of Parkinson’s, your care needs may be more complex and require planning by you, your family and the health and social care professionals involved.
Why should I think about end of life?
Having the opportunity to plan your treatment and care for the later stages of your condition, however far off, can give you, your friends and family peace of mind.
One approach that can be helpful is to think of the end of life in terms of having a ‘good death’.
This can mean:
- you’re physically comfortable and free from pain
- you’re at peace with yourself and loved ones
- you feel you are ready to say goodbye
- you have made your wishes clear and they are respected
- you’re treated with dignity and care
Putting your affairs in order
There are a range of things to think about when you are putting your affairs in order so planning your future now means that potentially difficult decisions can be considered.
Reading through our information and considering your options will mean that everyone is clear about your wishes, giving you peace of mind.
Talking to people close to you
It’s not easy to know when to talk to people close to you about the end of life, and these conversations may take place over a period of time. If you have family in another country, or want to be buried abroad, you will need to plan ahead.
Although discussing your care and affairs can be difficult, it is important and will help everybody cope better with the future.
If you’re a parent of dependent children, making plans for them and knowing they will be cared for will give you some peace of mind. You may need to get agreement from your chosen guardian(s) and write your wishes into your Will.
Talking to children
Talking to children – young and adult – about dying is a sensitive issue. Many people worry that young children will become too upset if they know someone they love is dying.
However, if they are not involved they may just worry alone or feel that somehow they are to blame for what is happening. Children may also feel annoyed or even angry that they have not been told what is going on.
Children also need time to prepare themselves and may have things they want to do or say, or worries they need to express.
"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."
Janet and Aubrey decided to set up a power of attorney document, in case they are not able to make decisions about their care or finances in later life.
Preparing for end of life booklet
This booklet looks at the practical and emotional issues relating to Parkinson’s and the later stages of life.