Being a MH Carer is a life of trial and error. Life may settle down when the initial crisis has passed, things may be back to ‘normal’ – or radically changed. It may feel like adapting to a completely new person.
The first part is usually the hardest, with the need to get help for the person taking precedence. When some stability returns it is time to take stock, recognising that ignoring your own wellbeing is likely to result in problems for both of you at some point. Taking care of yourself is not selfish behaviour – it is role modelling what the cared-for person also needs to do, which is to take as much responsibility as they can for their own wellbeing.
A Carer will often be pushed to their limits. They will be frightened for (and sometimes of) their cared-for person. They will be angry that help seems so hard to find at times and that their crisis is not always seen as that by professionals. They will be exhausted. They may be frustrated by the lack of progress, or the need to keep trying new medications with withdrawal and side effects.
They will probably alternate between caring deeply for
this difficult and changed person, and just wanting them to go away. The journey is a roller coaster of despair and hope.
Monitoring how they are at any moment becomes second nature. Carers come to recognise good days and bad days. You look at them and just know how things are that day, maybe through their clothing, a change in their routine, or ‘their eyes’. Being aware of reliable clues becomes vital because on a good day you can do less and have more time to yourself, and when things are tough you can lower expectations and be more supportive.
Establishing this takes time and a degree of professional detachment. Recognising any situations that increase distress and what helps at these times is useful to the service user and to you. If they learn their own triggers and coping strategies, then they take back control of their own lives as much as they can.
Strategies to help you cope
Problem solving is useful as a structured approach to dealing with an issue that can reassure you that you are doing everything that you can. Useful to do with friends or family.
The steps are:
1. Define the issue exactly and clearly (for example he won’t leave his room).
2. List every possible solution you (and anyone else you ask) can think of without ‘censoring’ them. Include silly or impractical suggestions, (they may start new thought processes).
3. Only when you have exhausted all possible ideas, go through and score the suggestions on how likely they are to work. Then try the highest scoring one first, if it doesn’t work try the next one.
This approach also helps to increase the chances of coming up with a new idea.
“To be able to cope as a Carer make contact with local Carer groups and make sure you find time for you. This is so important otherwise you will not be able to cope.”
It’s easy to skip this bit about your wellbeing, as it can be upsetting to realise how your life may be at the moment. You may be struggling to accept that all the effort, time and worrying in the world cannot turn the clock back.
Coming to terms with the reality of the situation and taking extra care of yourself is a long term investment. Can you make things happen that will keep you going so you can keep them going? Perhaps this may mean putting yourself first sometimes, but that needs to be acknowledged by both of you – that you have needs too and sometimes they come first. Service users can be remarkably helpful if you are unwell or taking time out. They can be the Carer for a while and that helps their view of themselves.
Talking to experienced Carers it is clear that things do change; people become better at managing their problems and the crises are less overwhelming. Often the extreme symptoms found in young people mellow as time passes. Medication is constantly being improved and other treatments made more effective. Although life is likely to stay a bit stormy occasionally, it is certain that you and your relative, partner or friend will adapt and reach ‘calmer waters’ in time.
Vital questions for Carers to ask themselves
- Am I doing more than I need to? Could I do less on their good days?
- Am I helping to make them as independent as possible, even though it feels a bit risky sometimes?
- If some basic boundaries are needed, am I clearly setting them and keeping them consistently in order to help me (and them) in the long term?
- Am I acknowledging that this is emotionally draining for me? The trauma of the past, accepting the present and the future all needs some grieving time. Am I being patient with myself?
- Am I creating (and holding onto) a sense of hope even though it may seem unrealistic on some days?
- Am I looking after myself – food, sleep, exercise, interests, friends, other Carers, creativity, relaxation and not being too proud to ask for help?
- Am I taking breaks? Is there someone out there who may be more supportive when it’s calmer? Will they walk, swim, paint or shop alone while I have ‘time out’? Can I go out safely while they sleep?
- Am I working to build a relationship with professionals, being clear, honest and assertive, but also aware of their job and time limitations?
- Am I having a Carers Assessment so that services are aware of my needs and I am aware of the options available?
When the situation is less volatile and more predictable you may find you have more time. With the experience you have gained you could be very helpful. You could get involved in developing and planning local MH or adult social care services by offering the Carer’s perspective. Or you could you help other Carers?
If you would be prepared to help in any way, please contact your local Carers Centre and find out what is involved. If you feel there is a need for change, then be part of that process!