Your Parkinson’s will affect the daily lives of family and friends too. How much you decide to tell those close to you, and how much you want to involve them in the early stages is a personal decision based on your individual relationships and how you think they will react.
It is important to remember that you will have had Parkinson’s for some time before your diagnosis and the condition is likely to progress gradually, so day-to-day life with your partner and family will not change overnight. Good communication will make it much easier to adapt to your new situation so it often helpful to sit down as a couple or family from time to time to chat about your evolving roles. Finding the right words can be difficult but it may help if you try to put yourself in the position of the person you are telling – what would you want to be told and how?
Telling your partner
It is likely that your partner will already have noticed changes in your emotions or behaviour, or physical symptoms such as shaking, so he or she may well be aware that something is wrong. Sharing your diagnosis as soon as possible may make sense of this and alleviate his or her worries.
Your partner will of course want to help and support you but they will also be concerned about how the disease will affect them. They may worry about how they might cope as a carer, particular if they are elderly. You need to reassure them that there are organisations and support groups to help you both.
As a couple, you can work together to achieve a good quality of life. Your partner will need to understand your condition and the support you require, and you should appreciate them and all that they do for you. With a little compromise your relationship can continue as it is, or in some cases it may even grow stronger.
If you feel you need a little help your doctor, or Parkinson’s nurse if you have one, will be able to give you details of specialist organisations who can offer advice.
Telling children or grandchildren
What you tell your children and grandchildren and choosing the right moment to do so will depend on their age, their nature as individuals and the relationship you have with them. It’s natural to want to protect children from knowing about serious health issues in case it scares, upsets or worries them, but it is usually better to be open and tell them because:
- Even if you try to hide your condition, children are very aware and are likely to pick up that something is ‘wrong’.
- Not knowing what is wrong may mean that children develop their own theories about what is happening, and these may be worse than the reality.
- As Parkinson’s progresses it will be difficult to hide your symptoms and your children may find out from someone else – and it’s much better that they hear about it from you (and your partner if you have one). They may otherwise feel resentful or worried about why you didn’t tell them.
- Trying to keep Parkinson’s hidden from your children may be difficult and exhausting for you.
- You may feel relieved to tell your children. Talking with your family may help to ‘normalise’ your situation and make it less frightening for everyone.
If you are a grandparent with Parkinson’s, you may want to tell your grandchildren yourself or tell them with their parents around too. Alternatively, you may think it’s best for the children’s parents to break the news, and you speak to them afterwards.
Younger children often adapt quickly. They will probably ask if this means you’re going to die and are satisfied when they are told no and can carry on with their childhood games. Their main concern is usually that their parents (or grandparents) will be there.
Be aware that it can be tricky for children to accept the fluctuations you may experience – one moment you may be able to join in an activity with them, and then you may be ‘off’ and unable to participate. This can be frustrating for them so it is important to explain your symptoms if they are old enough to understand.
Some children are extremely keen to help but do remember that they are children, not carers, so try to do as much as you can for yourself and don’t give them too much responsibility or depend on them too much. And remember to show them how grateful you are for all that they do for you.
When to tell children
It’s a good idea to think ahead about when and where could be a good opportunity. You don’t have to make it a big occasion, but make sure it’s in a calm environment, free from distractions and give yourself and your children the time and the space you need. You may worry about how to do it, but often the thought is worse than the actual event.
Try not to think of talking to your children about your Parkinson’s as a ‘one-off’ event. Think about it as an on-going conversation – there is no rush to tell them everything at once. And as your Parkinson’s progresses and your child gets older, you’ll need to talk about different aspects. Starting the conversation as openly as possible will help children feel that it’s OK to talk about your condition as time goes on.
What should I tell them?
What you tell children will depend on what they are able to understand. The younger your child, the simpler the information needs to be. But even for older children, it will be helpful to keep the information simple to start with. Try to avoid medical terms. Use the same kind of language as your child uses when they ask questions or talk about their feelings about your condition.
Take the lead from your children about how much to say – they may not be able to take everything in at once. Older children may want more information – and may even have questions you don’t know the answers to. Afterwards, check with them what they have heard so that you can make sure they’ve not misunderstood anything.
Be specific and clear in describing your condition. Be honest in what you tell them – children may feel mistrustful if they discover later on that you haven’t told them the truth. Also, don’t assume anything. You may know that Parkinson’s is not contagious, but do they?
Encourage your child to ask questions – not just when you speak to them, but at any time. This way they can really join in the conversation and feel listened to. They’ll also feel more involved and able to share their worries.
Whatever the age of the children in your family, don’t forget to remind them that although you may not be able to do everything you used to do, you still love them just the same.
Teenagers often react differently - they may feel angry but this is usually driven by sadness and a deep felt wish for you to be well again. They may become self-conscious or seem embarrassed, particularly with their friends, until they notice that people accept you as still the same person. Sometimes they may try to help too much which can cause tension.
They will probably just need a bit longer to understand their emotions and accept the news.
As a family, how can we help ourselves?
For your family and close friends to support you effectively they will need to understand the changes that come with living with Parkinson’s. You, in turn, should show an appreciation of them and their support so that you can maintain your current lifestyle for as long as possible.
Over time, you’ll all need to change and adapt your routines and activities so that everyone can enjoy a good quality of life. Therefore, discussing concerns together is usually beneficial. Below are some suggestions that may help you all manage Parkinson’s better:
- Find out more about Parkinson’s, particularly symptoms, medications and quality of life issues.
- Find out about local support groups or organisations that may be able to help.
- Be realistic about what you and they can do and remember that limitations may change.
- Make sure to take your time and don’t try to do things in a hurry as this may lead to tension when things go wrong or don’t happen when you expect them to.
- Plan ahead and develop a routine that works around the times of day when you are at your best.
- Make use of labour-saving devices, such as food processors and microwave ovens.
- Try to stay calm; anxiety and stress can aggravate symptoms.
- Take regular exercise to maintain mobility and muscle strength.
- Eat a healthy diet.
- Continue the social activities you enjoy. Going out and socialising will keep your spirits up and improve your quality of life.
- Keep doing the things you have always enjoyed as a family so that Parkinson's doesn't dominate everything.
- Make sure you and your partner pursue enjoyable activities independently of each other. This may result in being more relaxed when you are together.
- Try not to bottle up emotions. Discussing concerns will stop the build-up of anxiety and help you to explore solutions together.
- Check up on any help or benefits you may be entitled to.
- Investigate complementary therapies to see what might be of help to you.
- Adapt your home to make it easier to maintain independence and mobility, e.g. install hoists or grab rails.
- Accept help when it is offered.
What help is available outside the family?
If you are unsure whether to tell family and friends that you have Parkinson’s or you are not sure quite what to say and when, you may find it helpful to speak with others who have had the same experience. Sharing your concerns and discussing them with others might help you decide what is best for you and your family.
Your local or national Parkinson’s association will be able to put you in contact with other people in a similar situation, or you could contact a national counselling organisation who can listen to any worries and help you work through them. You may also find it helpful to take your partner or close family with you for your next doctor’s appointment so that they can ask any questions they might have.
If you feel that family relationships are becoming difficult, or that children are not coping well, ask your doctor if they can arrange counselling with a trained therapist or counsellor. This can be done individually or as a family group, tailoring the advice to the age of any children involved. Although some people feel uncertain about therapy, it can be very helpful and in some countries it may be state funded. Your doctor will be able to advise and put you in contact with suitable professionals.
Definition: ‘A single or repeated act or lack of appropriate action, occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person’. This definition was established by Action on Elder Abuse (UK) in 1993 and adopted by the World Health Organisation.
Such abuse occurs only when there is an expectation of trust between two or more people, sometimes within a family. It may not be intentional and could arise because a person does not fully understand a situation, finds it hard to manage stressful problems, or lacks the skills required and needs support from external agencies. Elder abuse can take many forms, for example denying access to the right treatment at the right time.
In many countries, laws exist which presume that every adult has the right to make their own decisions and have the capacity to do so. If, for any reason, it is felt that a person is not being allowed this right, this concern can be raised with family members or with the national authority responsible for social welfare.
Our thanks to Parkinson's UK for permission to use the following source(s) in compiling this information:
- Talking to children and teenagers about Parkinson's.
- VIDEO: Expert Briefing Webinar: Parkinson’s and Parenting: The Impact on Children and Young Adults by the Parkinson's Foundation
- VIDEO: Advice for people with Parkinson's who have teenage children by Parkinson's New Zealand
- Hartman L, Jenkinson C, Morley D, Young People’s Response to Parental Neurological Disorder: A Structured Review. Adolescent Health, Medicine and Therapeutics 2020 Mar 26. Vol. 11; 39–51 – read article
- Morley D, Selai C, Schrag A, Jahanshahi M, Thompson A,Adolescent and Adult Children of Parents with Parkinson's Disease: Incorporating Their Needs in Clinical Guidelines. Parkinson's Disease 2011 Jun 12. Volume 2011; article ID 951874 – read article
- 'My Dad: his Parkinson's through my 13yr old eyes.' – a video by Jonny Acheson
- 'My Dad: his Parkinson's through my 9 year old eyes.' – a video by Jonny Acheson
- The JuPsons – a video by Jung und Parkinson in English, French and German
Articles from Parkinson's Life online magazine
- John Stapleton: “More Parkinson’s research is needed, full stop”
- Watch: an animated story of Parkinson’s
- Meet the family members who #UniteForParkinsons in support of their loved ones
- VIDEO: Children shouldn’t feel isolated or hopeless because a parent has Parkinson’s
- 5 free books to help explain Parkinson’s to children and teens