If your partner, friend or family member has Parkinson's, you may find it helpful to keep a diary. It can be a useful way to keep track of how much you're doing for them, how you're coping and whether you need any support. It may help to remind you of things or give a clearer picture of your situation.
Here we've listed some questions to help you think about what to write in your diary. They are just suggestions, so if something isn't relevant to you, ignore it.
- How many hours a week do you look after your loved one? (Remember to include everything that you do, including washing and cleaning)
- Does anyone else help you? What do they help you with?
- Do you have any health problems yourself? Do these affect your ability to do different tasks? In what way?
- Does looking after your loved one affect your health? (Eg back problems, stress, anxiety, depression or lack of sleep)
- What other roles do you have? (Parent? Employee?)
- How does caring affect your relationships, including your relationship with the person you look after?
- Who gives you emotional support? Do you need more help with this?
- Are you in touch with any professionals or carer organisations who provide you with support?
- Have you registered yourself as a carer with your GP? Have you had a carer’s assessment?
About the person you are looking after
- Who are you caring for? What is your relationship to them?
- How long has the person had Parkinson’s?
- How does their Parkinson’s affect them?
- Do they have other health problems that you need to accommodate?
- Include basic information about you and the person you care for such as date of birth, doctor’s name and consultant’s details.
What you write in your diary will depend very much on your own individual situation. You should be as honest as possible and include anything you feel is relevant to you, especially anything you find difficult that you would like help with.
- Are you responsible for the person’s medication? If yes, what does this involve? (For example, reminding them to take it?)
If you provide personal care, how do you help with:
- washing, showering or bathing?
- going to the toilet?
- assistance at night?
- eating and drinking?
- How much housework do you do? (Eg cooking, laundry, cleaning, shopping, managing finances)
- Do you have any help with this?
You may prefer to just record changeable things or when something out of the ordinary happens in your day-to-day routine, such as a fall, or a hospital visit. But think about recording when good things happen too.
- Do you live with the person you look after?
- What is access to and around the home like?
- What condition is the house in?
- Do you have stairs? How easy is it for the person to use the stairs?
- Would a different type of housing be more suitable? If so, do you want to stay in the area you live in, or do you have relatives in another part of the country that you would like to live near?
- If you do not live with the person you care for, are there any difficulties as a result? (For example, do you live a long way from them? Do you have other responsibilities that limit the time you can give them?)
- Do you provide assistance or help with anything else?
- Can the person you care for be left on their own?
- Do you provide emotional support?
- Do you take them to medical and social care appointments?
- Do you have a car? If not, what alternative forms of transport are available to you?
- Does the person you care for have any communication problems? How does this affect you?
- Do you have enough money to live on, or are finances tight?
- How is your mood? Do you feel you need any emotional support?
- Has your caring role had an impact on your own relationships or social life?
Include anything in your diary that you feel is important. You may find it helpful to colour-code your entries so that information on drugs is in one colour, symptoms in another, and so on.
- How do you feel about your role? Do you find it difficult?
- What extra help do you think you need? List the extra help in order of priority. For instance, would regular respite care be helpful? How would you want this to be arranged? (For example, for a weekend, a week, day care at a day centre, someone to come into your home to provide care?)
- Would a community alarm help?
- Would access to welfare benefits help?
- Which parts of your role can you manage without help?
- Do you need more information or advice about Parkinson’s?
- Do you get any time for yourself? How often?
- Do you need breaks to help you deal with other things? How easy is it for you to spend time away from your role doing something you enjoy?
Not everyone will have time to record a detailed diary entry daily – do it when you can, it doesn’t have to be every day.
Employment and education
- If you work, what kind of work do you do? How many days a week?
- What arrangements are made for the person you care for while you are at work? Is this something you need extra help with?
- How easy is it to take time off work in an emergency? Is there anyone who can help in an emergency if you are unavailable?
- If you are a young carer, is your education affected by caring? If so, in what ways? Does your school know your role at home? Would you like your school to know? Is there anything you would like help with? Would you like to meet with other young carers?