Keeping a Diary: For Carers If you are a carer, it can be very useful to keep a weekly or monthly diary to record how you cope with caring, the tasks that you do and anything that you find particularly difficult. This can be a helpful preparation for when you visit the doctor or another health or social care professional, or for a carer s assessment, when applying for financial benefits and so on. It can also help you to demonstrate how variable Parkinson s disease can be for the person you care for and, consequently, how your role as a carer can vary from day to day and, indeed, during each day. What kind of diary should I use? We have included a sample diary and a blank diary sheet that you can photocopy and use. However, we suggest that you use whatever kind of diary suits you, or you may prefer simply to write an account of each day in a notebook. If you have a computer, you may prefer to keep an electronic diary. What should I put in the diary? The contents 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. This will be valuable to the doctor or other professional that you give the diary to. We have provided some questions as a guide to assist you when completing the diary. You will probably find that some are more applicable to your circumstances than others, so ignore any that aren t appropriate. Remember, too, to include anything important to you that the questions here do not cover. You may find it helpful to colour-code your entries so that information on drugs is in one colour, caring tasks in another, and so on. You may also find it helpful to read the following publications for more information: The Carer s Guide, and Carer s Allowance rights and benefits information sheet. About you How long have you been caring? Why did you become a carer? How many hours a week do you care? (Remember to include everything that you do, including washing and cleaning.) Who else lives with you? Do any of these people help you with caring? 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? (Back problems? Stress? Anxiety or depression? Lack of sleep?) What other roles do you have apart from being a carer? (Parent? Employee? Child?) How does caring affect these relationships and your relationship with the person you care for? Who gives you emotional support? Do you need more help with this? Include basic information about you and the person you care for date of birth, National Insurance number, doctor, consultant etc. Who are you caring for? What is your relationship to them? Contact the Parkinson s Disease Society freephone helpline for advice and information on 0808 800 0303 1
How long have they had Parkinson s? What particular problems do they have with their Parkinson s? Do they have other health problems that you need to accommodate? Think about how they were before they had Parkinson s and how they are now. What has changed? Do you feel you understand Parkinson s? Would you like more information? Medication Do you have to be responsible for the person s medication? If yes, what does this involve? (For example, reminding them to take it? Giving it to them and making sure they swallow it?) Personal care What personal care do you have to provide the person with? Describe what you do to help. Do you help with: washing, showering or bathing? dressing? toileting? lifting? assistance at night? eating and drinking? Housework Think about the housework you have to do (such as cooking, laundry, cleaning, shopping, managing finances) and make sure you include these. Do you have any help with these? Housing Do you live with the person you care for? What is access to and in the home like? What condition is the house in? Does it need work? Is it a bungalow or do you have stairs? How easy is it for the person to manage the stairs? Is there anything about the house you find difficult? What would make the house easier to manage? Would alternative accommodation be easier to manage? 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?) General wellbeing What other tasks do you do for the person you care for? Can the person you care for be left on their own or do you have to be there to keep an eye on them? Do you have to provide emotional support? Are they forgetful? Do you have to take them to medical and social care appointments? Do you have a car? If not, what alternative forms of transport are available to you? Contact the Parkinson s Disease Society freephone helpline for advice and information on 0808 800 0303 2
Does the person you care for have any communication problems? Does this affect your social life? Do you have to be an advocate for them? Do you have enough money to live on, or are finances tight? Your needs as a carer How is caring for you? Do you find it difficult and feel it will be difficult to continue? Do you think extra help would help you to cope? What extra help do you think you need? What would help you with caring? 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 financial benefits help? What parts of the caring role do you want to do (if any)? What parts can you manage without help? What do you find particularly difficult? What do you definitely not want to do? Do you need more information or training related to Parkinson s? What arrangements are made to care 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 are unavailable? If you are a young carer, is your education affected by caring? If so, in what ways? Leisure Do you get any time for yourself? How often? Is there something you would like to do that you cannot do because of your caring responsibilities? Do you need breaks to help you deal with wider responsibilities, such as attending a school sports day? Carer s assessment For further information about arranging a carer s assessment see the information available on our website www.parkinsons.org.uk or Sharward Services Ltd, the appointed Distribution House Tel: 01473 212115 Email: parkinsons@sharward.co.uk Alternatively, contact the Carers UK Carers Line on 0808 808 7777 or visit the website at www.carersuk.org You can also call Age UK s Advice Line on 0800 169 6565 or visit their website at www.ageuk.org.uk Employment/education If you work, what kind of work do you do? Part-time or full-time? Contact the Parkinson s Disease Society freephone helpline for advice and information on 0808 800 0303 3
Parkinson s Disease Society 215 Vauxhall Bridge Road, London SW1V 1EJ, UK Tel: 020 7931 8080 Fax: 020 7233 9908 Helpline: 0808 800 0303 Text Relay: 18001 0808 800 0303 (for textphone users only) (The Helpline is a confidential service. Calls are free from UK landlines and some mobile networks) Email: enquiries@parkinsons.org.uk Website: www.parkinsons.org.uk Parkinson s Disease Society of the United Kingdom (2008) Charity registered in England and Wales No. 258197 and in Scotland No. SC037554. A company limited by guarantee. Registered No. 948776 (London) Registered office: 215 Vauxhall Bridge Road, London SW1V 1EJ Revised March 2008 To obtain any PDS resource, please go online to www.parkinsons.org.uk or contact Sharward Services Ltd, the appointed PDS Distribution House, at Westerfield Business Centre, Main Road, Westerfield, Ipswich, Suffolk IP6 9AB Tel: 01473 212115 Fax: 01473 212114 Email: parkinsons@sharward.co.uk Contact the Parkinson s Disease Society freephone helpline for advice and information on 0808 800 0303 4 Code FS70
Example of a diary page Day: Wednesday 25 June Time 6am 7am 8am 9am 10am 11am 12noon 1pm 2pm 3pm 4pm 5pm 6pm 7pm 8pm 10pm Night Woke up helped John to get out of bed. Reminded John to take his pills co-careldopa (Sinemet Plus), selegiline (Eldepryl), ropinirole (Requip), put rest of pills for the day in pillbox and set timer. Made breakfast, ate breakfast, washed up. John had shower helped him in and out of the shower. He got dressed, can manage some of the clothes himself but I have to do his buttons and help him with his underwear because of the tremor. I also help him with shaving and brushing his hair. John read paper while I put washing on, hoovered, made beds. Took John for tests at the hospital. I drove, had to walk the full length of the car park as no spaces. John went off while waiting for the blood test so had to act as an advocate for him during tests. Levodopa (Sinemet Plus), ropinirole (Requip). Lunch helped to cut food up as tremor very bad because he was off. John started to go on. I took clothes out of machine and hung them on the line. John slept one hour. I did finances and tidied the lounge. We walked in the garden for half an hour I have to accompany John because he is apt to fall. Freezing episode, I had to put my foot in front of his to get him going again. Cup of tea and watched TV. John took his levodopa (Sinemet Plus), ropinirole (Requip). I cooked supper, fed the dog. John fell in lounge. Cuts and bruises. Helped him up cleaned him up. John s mobility poor so had to help him get to the toilet. John took levodopa (Sinemet CR). Went to bed at 10.30pm helped John to undress. Woke three times during night as John had restless legs and needed help turning over in bed. Contact the Parkinson s Disease Society freephone helpline for advice and information on 0808 800 0303 5
Diary sheet Day: Time 6am 7am 8am 9am 10am 11am 12noon 1pm 2pm 3pm 4pm 6pm 7pm 8pm 10pm Night Contact the Parkinson s Disease Society freephone helpline for advice and information on 0808 800 0303 6