Caring for a person with ME
It is always distressing when someone you care about is suffering but when that suffering continues for months, and even years, and you can do little to relieve their pain and discomfort, it can be very difficult to cope with.
If you also have to watch your loved one battle with disbelief from the medical profession and struggle to get a diagnosis, treatment, social care or benefits, frustration and exhaustion can add to the stress caused by the additional practical caring responsibilities. Your attitude will play an important part in helping your partner, friend or relative cope with these blows to their self belief. You may find you also face disapproval or censure for encouraging someone in ‘maladaptive illness beliefs’, and will need to be informed and strong to cope with that.
Caring for an ill person can substantially change the nature of your relationship with that person. You might feel a sense of bereavement that you have lost an active partner or friend. You may also have had to give up social activities, work or study in order to care for a family member and feel you are beginning to lose your own identity. It can also change your relationship with family and friends as you are unable to spend as much time with them and some of their needs and concerns can go unnoticed.
Once your ‘patient’ is past the chronic stage they may begin to feel a bit better but find they have good and bad days and your relief at this improvement can be tempered by the frustration and stresses of this unpredictability.
The challenges are many but caring can also bring many rewards and can strengthen relationships, both with the person with ME and within the family. Here are some things you can do that might help you with your caring role:
- Find out about ME and the different ways it can affect people.
- See yourself as part of the ‘management team’ and be prepared to play a part in the decision making process where appropriate and help your friend or relative to understand and make decisions about her/ his care.
- Explain to family and friends and include them in your loved one’s support network
- Look after your own health, register as a carer with your local medical practice.
- Try to take time out for yourself so you can recharge your batteries.
- Contact Social Services and ask for a carers assessment – although you are legally entitled to this assessment the Local Authority do not have to provide you with any services. Depending on funding your LA may offer some practical help such as respite care or they may be able to refer you to other agencies such as Crossroads etc.
- Tell your employer as you are entitled to ‘reasonable adjustment’ which could include part time working, flexible hours, time off to accompany the cared for person to hospital appointments etc.
- Apply for any Benefits you are eligible for and contact the local carers’ group to find out what local support schemes are available transport, buddy schemes, emergency alert schemes.
- Use respite care services, if available.
- Share experiences with other carers through local support groups, online forums etc