Preparing for end of life

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.

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

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.

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.