You may want to use a diary for different reasons. Keeping details of what you do day to day in relation to your caring role can be a helpful way to find out and keep track of how much you’re doing, how you’re coping and whether you need any support.
Recording what you do in your caring role can be helpful when speaking to a health professional, such as a Parkinson’s nurse. It may help to remind you of things or give a clearer picture of your situation to the person you’re talking to.
A diary may also be useful when applying for welfare benefits, as it can demonstrate how Parkinson’s affects daily life for you and the person you care for.
Some people find it helpful to keep a diary if they are preparing for a carer’s assessment. For information about arranging a carer’s assessment, call our helpline on 0808 800 0303.
You can use any kind of diary or notebook to write down what you do and how you feel over the course of each day.
If you have a computer, smart phone or tablet device, you may prefer to keep an electronic diary or use an app.
There are some pieces of general information which you can include on a cover page. These will be things that never or rarely change. Examples of this might be:
- How many hours a week do you care for your loved one? (Remember to include everything that you do, including washing and cleaning)
- Does anyone else help you with caring? What do they help you with?
- Do you have any health problems yourself? Do these affect your ability to do caring tasks? In what way?
- Does caring affect your health? (Eg back problems, stress, anxiety, depression or lack of sleep)
- What other roles do you have apart from being a carer? (Parent? Employee?)
- How does caring affect your relationships, including your relationship with the person you care for?
- 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 caring for
- Who are you caring for? What is your relationship to them?
- How long has the person you care for 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.
We have listed some questions below as a guide to help you think about your circumstances. These may not be relevant to you and you may prefer to just record changeable things or when something out of the ordinary happens in your day-to-day routine, such as:
- sleeping patterns
- details of hospital visits
- unexpected problems
- 'on'/'off' episodes and effects
- mobility, including freezing episodes
Think about recording when good things happen too – this may help motivate you during bad periods.
Include anything else 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.
Not everyone in a caring role will have time to record a detailed diary entry every day – do it when you can, it doesn’t have to be every day.
Are you responsible for the person’s medication? If yes, what does this involve? (For example, reminding them to take it?)
What personal care do you provide the person with? Describe what you do to help. 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?
- Do you live with the person you care for?
- What is access to and around the home like?
- What condition is the house in?
- Is it a bungalow or do you have stairs? How easy is it for the person you care for 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?
Your needs as a carer
- How do you feel about being a carer? 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 caring role can you manage without help?
- Do you need more information or training related to Parkinson’s?
- 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 the person you care for in an emergency if you
- 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?
- Do you get any time for yourself? How often?
- Do you need breaks to help you deal with other things? Have you considered a respite break? How easy is it for you to spend time away from your caring role doing something you enjoy?