Ideas for Record Keeping
Sitting in a work meeting the other day, I was reminded how difficult it can be for carers to explain what problems they (or their loved one) are having. I also had personal experience of this when caring for my parents. Carers can find themselves attending lots of appointments with a variety of professionals and for a variety of reasons – weekly therapy appointments, annual medical reviews with specialists, care needs assessments with social services, care home funding reviews to name but a few. It very often falls to the carer to give an accurate picture of how things are currently and, importantly, how things have changed. It is no wonder that after an appointment, many carers think, “now why didn’t I mention that?” I know. I have been in that situation.
Some areas to consider (not exhaustive and may not be applicable in all cases):
Walking, getting in / out of a chair, bath or shower, going out, falls and getting up from a fall.
Making needs known, talking and understanding including using the phone.
Reading and writing including sending and receiving texts or emails, using the internet, reading and responding to letters.
Problems chewing and swallowing or help with eating / drinking including needing reminders to eat or drink or having food cut up.
Forgetting to take or refusing to take medication; having difficulties taking tablets.
Emotions including anxiety or depression, challenging behaviour.
Washing and dressing (including help using the toilet).
Preparing drinks, snacks and meals.
Managing finances, appointments etc.
Household chores including washing and ironing.
Gardening and DIY.
Interests and leisure activities.
Specific problems with thinking skills such as memory, concentration, planning things, getting lost, not recognising people.
Medical diagnoses and conditions.
Vision and hearing
It is often worth thinking about how things have changed since the last appointment or perhaps over a specific time span (the last month, three to six months, a year ago). Sometimes thinking back to events such as birthdays, Christmas, holidays can help you remember what things were like. What could your loved-one do then that they cannot do now? Can they still do things with help, what kind of help or perhaps not at all?
My main piece of advice is to note things down (with the date) as they occur to you rather than rely on memory. Believe me, you probably will not remember! I did not. Perhaps keep a small notebook to hand or use a diary. For those who like using a mobile phone, use your notes app or even make a voice note. It is also helpful to note down how regularly something happens. Is it every day, every week, occasionally? Is it as a reaction to certain circumstances or particular people? Is it unpredictable and unexpected or can you anticipate that it may happen and have a plan in place? That is not to say that it is not still a problem but it is all useful information.
Lastly, the above points can also be used for you, as a carer, to explain and give examples of your own difficulties and the pressures you may be under and how things have changed for you.
Some ideas for How to keep your records
It’s tempting, sometimes, to jot things down on the back of an envelope and, if a call comes when you are not expecting it, this can be the only answer. However, it is worth being organised about your record keeping so that you can refer back to it easily.
At one stage, when I was caring for both my mother and my husband, I kept notes in the same book, Mum at the front and Derek at the back. At this stage, it worked as neither had particularly complicated needs. After my mother passed away and my husband’s condition started to deteriorate, I started a new book which I kept in a folder along with the great stack of paper communications I acquired. I still have it and recorded everything that was discussed at all appointments, home visits and those phone calls, whether medical or to do with social services. The problem was, it was all jumbled up. While everything was dated, the notes about the optician were immediately followed by the visit of the occupational therapist, then the Parkinson’s consultant. I am sure you can see the pattern. If I wanted to recall something quickly and I couldn’t remember when it happened, it took a while to find it. The other problem was that, needing to review what I had written, I couldn’t always read my scrawled notes!
So, looking back, what could I have tried? A ring binder can be easy to organise with dividers but finding small ones can be difficult. It’s helpful to have something you can pop in a bag and carry with you. It’s possible to find notebooks with coloured sections, or divided by tabs which would make it much easier to separate important information. Another solution is to use an ordinary notebook and use sticky index tabs or page markers to separate your sections.
What sections are useful? This will depend a lot on personal circumstances but certainly I would include appointments and communications with or about:
At the end of the day, if you have the energy after visits to the hospital etc, you might find it helpful to make time to look back over your notes and make sure that they are clear and legible and think about whether you have forgotten anything.
Did anyone ever tell you that part of the job description of a carer is being a secretary?