Telling your family

Your partner

It is highly likely that your partner will already have noticed changes in you, whether in your emotions or behaviour or physical symptoms such as shaking, so he or she may well be aware that something is wrong.

It may therefore be wise to tell your partner about your Parkinson’s as soon as possible – often the truth isn’t as bad as the fantasies he or she has been worrying about!

The most powerful emotion will be their desire to help and support you. However, it is also reasonable for partners to be concerned about how the disease will affect themselves and they may worry about how they can cope as a carer, particular if they are elderly. You need to reassure them that there are organisations available to help you both.

As partners, you can work together to achieve a good quality of life. Their understanding of the disease and your needs, combined with your appreciation of them and their efforts to maintain your current lifestyle for as long as possible, will mean that - with a little compromise - your relationship can remain unaffected, or in some cases even strengthened.

If you feel you need a little help, contact a specialist organisation such as Relate¹ who will be able to offer advice. See also: What help is available outside the family? and Where can I find more information?

I have just been diagnosed with Parkinson’s, but I don’t want to tell my wife and family. What do you think I should do?

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Children or grandchildren

What you tell your children and grandchildren and choosing the right moment will depend on their age, their nature as individuals and the relationship you have with them.

Young children

A child’s reaction to a family member becoming ill will vary considerably depending on age. Younger children often adapt more readily. They ask if the illness can cause death and are satisfied when they are told no and can carry on with their childhood games. Their main concern is that their parents (or grandparents) will be there. Children are open and curious and will ask quite naturally ‘why do you tremble?’

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 to those 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.

Teenagers

Teenagers react differently - they may express anger to both you and your partner and towards the disease. Behind this anger is sorrow and a deep felt wish for you to be well again and as a result some can try to help too much. They can become self-conscious and react with embarrassment, particularly with their friends, until they see that people do accept these changes in people.

My husband has had Parkinson’s for nearly 20 years and is now quite disabled. But he does love to have our grandchildren come to visit. However, most of them live some distance away and can be quite daunted by his appearance and his mobility problems. What can we do to make their visits easier and more enjoyable for everyone?

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Important!

Remember that many of your children’s anxieties about you can be relieved if you provide them with good information about Parkinson’s and talk to them openly about their worries and concerns.

Did you know?

There is a Chinese proverb, sometimes attributed to the philosopher Confucius, who lived in the 6th century BC, which says ‘Govern a family as you would cook a small fish: very gently’.

References

Relate http://www.relate.org.uk