Info for Carers.
Information for Carers
Caring for someone who is seriously ill with M.E. can be a daunting experience. Sadly, the challenges that people face may be magnified due to the lack of medical care and difficulties in claiming benefits for people with M.E.
Acceptance of the illness by both the sufferer and the carer is essential. This will allow both parties to learn about the illness and eventually judge the sufferer's capabilities and limits. Just as important is belief in the illness. This will allow the carer to listen to the sufferer and offer the right level of care. A positive and encouraging attitude toward the person and their illness is also important.
Being a carer can, at first, be very confusing as it is difficult to gauge how much help should be offered and how much the M.E. sufferer should be encouraged to do themselves. The most important rule to remember is 'help but don't smother'.
It is crucial for their long-term health that the person with M.E. should try to undertake some tasks, but only within their capabilities. Pushing them to achieve will probably make them worse, so it is important to be patient and not rush them. Be guided by them and let them tell you what they need. The level of help they require may vary day-to-day due to the fluctuating nature of M.E.
Physical aids such as a wheelchair, shower stool or commode might make it easier to care for the M.E. sufferer and give them a better quality of life. These aids may be available on the NHS by means of an assessment by an occupational therapist. Otherwise, there are many shops that sell such aids, as do many websites.
Information for Those Caring for a Loved One
Caring for a very ill person can be draining, so it is important to remember that the carer should take time out for themselves. The maintenance of some sort of work or social life is crucial and if possible respite should be sought such as a holiday. Try to enlist the help of other people; whether this is a friend, neighbour, another family member or a professional carer. After all, it is only possible to provide care if the carer is healthy themselves!
In many ways, the carer is in the same state of limbo as the person who has M.E. It is not known when an improvement in their condition may be seen, and so frustration is understandable; however, be wary of expecting improvement in the sufferer's health as this may make them feel guilty. Feelings of guilt are common due to being seemingly 'stuck' in an undesirable situation. Organisations such as the Sheffield Carers Centre offer emotional and practical support.
Caring for a loved one with severe M.E. can change the dynamics of the relationship. Talking to one another is the key to alleviating some of the emotional pressure associated with this. By supporting one another, it is still possible to find joy and happiness amidst stressful and distressing times.
There are welfare benefits available to carers; however, it is advisable to get expert advice before applying. Claiming carer's benefits may affect any benefits received by the person being cared for. Action for M.E. run a welfare rights helpline (01749 330136) which is a service available to members of the charity.
Tel: 020 7922 8000 (London); 0141 221 9141 (Glasgow); 029 2081 1370 (Cardiff); 028 9043 9843 (Northern Ireland)
Young Carers Initiative
Caring with Confidence
Tel: 0113 385 4491
Sheffield Carers Centre
Tel: 0114 272 8362
Adult Services Access Team - Tel: 0114 273 4908
Children and Families Access Team - Tel: 0114 273 4855 (24 hours)