The effects of living with Tremor reach beyond the patient, and 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 relationships and how you think these people will react.
It is important to remember that you will have had Tremor for some time before the moment of diagnosis and the rate at which it will progress is likely to be gradual, so day-to-day life with your partner and family will not change overnight. Good ongoing communication will be an important part of adapting to your new situation and it may be helpful if as a family you sometimes sit down together 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?
This section will hopefully give you some ideas on how to involve your loved-ones and highlight some of the ongoing issues you may need to address as a family.
Telling your family
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 Tremor 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.
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.
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 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.
Remember that many of your children’s anxieties about you can be relieved if you provide them with good information about Tremor and talk to them openly about their worries and concerns.
How can we, as a family, help ourselves?
Over time, you will all need to make some changes and adaptations to your daily routines so that the whole family can enjoy a good quality of life. Discussing any concerns will enable you, your family and friends to work effectively together. Below are some suggestions that may help you:
- educate yourselves about Tremor, particularly about symptoms, medication and quality of life issues
- find out about local support groups or organisations that may be able to help you
- be realistic about what you and they can do and remember that limitations may alter
- plan ahead and develop a routine that works around the times of day when you are at your best
- adapt your home to make it easier to maintain independence and mobility, e.g. install hoists, grab rails
- make use of labour saving devices, e.g. food processors, microwaves
- try to stay calm; anxiety and stress can aggravate symptoms
- eat a healthy diet
- take regular exercise to maintain mobility and muscle strength
- continue social activities you enjoy. Going out and socialising will keep your spirits up and improve quality of life
- investigate complementary therapies to see what might be of help to you
- try not to bottle up emotions. Discussing concerns will stop anxiety building up and you can explore solutions together
- check up on any help or benefits you may be entitled to
- 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 Tremor 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 with others may help you in deciding what is best for you and your family.
The NTF are able to put you in touch 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 you may be able to get some state funding. Your doctor will be able to advise and put you in contact with those involved.