In the later stages of Parkinson’s your care needs are likely to be more complex. Even if your symptoms are well controlled at present, thinking about the decisions you will face in the future and planning ahead will give you, your carer, family and friends peace of mind. You may also feel more confident about what lies ahead if you have prepared in advance. By planning with your carer, family and healthcare team, you can help to ensure that your physical and emotional needs are met in the best way, in the future. This can be particularly important if you become unable to make decisions for yourself.
Talking to people close to you can sometimes be difficult but doing so will help you to cope better with the future. You may find that you have a series of conversations over time regarding different aspects of end of life as you each adjust to what to expect.
Talking with children can be particularly sensitive. It’s natural to want to protect them as you don’t want to upset them, but it is often much better to be as open as possible so they know what your wishes are. They may feel angry or upset if they have not been involved and it can place extra strain on you if you try to hide the truth from them. Of course, what you tell them and when is an individual decision based on their nature and age.
Some people find it helpful to think of end of life as having a ‘good death’, one which is dignified, comfortable and free from pain, allowing you to find inner peace and to say goodbye to loved ones.
Some of the things you may like to think about are:
- where you would like to be cared for (in a hospice, hospital, care home or at home)
- whether you wish to refuse certain treatments or want to be told about the possible effects of treatments you may be offered
- what you would like your final days to be like
- who will talk with any children or close family towards the end if you are unable to
- whether you want to donate your organs, including your brain
- any religious or cultural wishes you would like observed
- who will take care of any pets.
If you are caring for someone who is reaching the end of life or are close family, it is also important to think about life without them. Thinking about this in advance will help you to adjust better when that time comes.