Becoming a Carer

Being a Carer for someone in your family who has become seriously ill suddenly and unexpectedly is demanding. There is often a flurry of activity dealing with the crisis. At this stage, you are usually focussing on day to day care in hospital, finding out about TM, diagnostics and practicalities of getting kids to school or whatever. Shortly after, the daily uncertainty of how
long recovery will take and to what extent recovery will occur unfolds. The whole family is affected in a variety of ways.

From the moment that the crisis of TM is starting to
settle, a transition of emotions begins when the person with TM starts to focus on their internal world ‘before TM’ and the uncertainty of their future and often  the person with TM will be angry, bewildered and possibly depressed or despairing.

The Carer is in unique and difficult position. The person they love is going through a life-changing experience. They want to provide all the help and encouragement that they possibly can, but the relationship between the TM person and the Carer has changed. Jointly, the Carer and the TMer are on a new path in their lives with an evolving relationship that will be different than it was before.

Looking after yourself

At first, it may feel selfish to put effort into looking after yourself when the person who you are caring for is so obviously the one that is affected. You will need to remind yourself often that your effectiveness as a Carer depends on your ability to cope with the dramatic changes in your life too.

Some tips and ideas.....

It sounds boring, but the basics of physical well-being are important over time: make sure you get some exercise, get enough ‘good’ sleep, refrain from drinking too much, and eat healthily.

Make a plan for your well-being. Figure out what you need to do in order to stay at your best. Without support, social and emotional isolation can set in - this can be one of the  most debilitating aspects of caring. You may have to consider new outlets. Whether it’s going to a Carers group, joining a choir or just making sure you are keeping up with a few close friends, decide what you need to do to look after yourself and do it.

You may have to ask for support. It might seem hard at first, but often other friends and family members are looking for you to give the lead on this and tell them what you need.

Acknowledge how you are feeling - the good moments and the bad. Your life has been seriously impacted too. This is normal. Some people find that taking up drawing, music or writing are good emotional outlets. Others find that talking works best.

Think about participating in your local TM support group. Offer a listening ear to other carers and use your skills to benefit others. 

Probably the most important tip .... talk to the person you care for. Work together to identify what you both want for yourselves as individuals and for your relationship and then develop a plan to achieve it jointly. 

Facebook group for Carers

Transverse Myelitis Family Friends and Carers Facebook Group