I've been thinking lately about what helps me as a carer. It's a subject I revisit with my counsellor frequently. What can I do to help me survive? Because it is a battle for survival. What strategies can we come up with to get me through this, to keep up my physical and emotional strength - because believe me, there are times when I seriously question my ability to carry this thing through.
Well, for me the first clue to survival is in the second sentence above. I talk to my counsellor about it. This is a subject that came up in conversation at the last Branch meeting. I was talking to the wife of a person with MND, who explained that their GP was quite willing to refer her husband to a counsellor but told her that until she reached some kind of crisis point, this service would not be available to her. Back in August 2009, my GP helpfully referred me to a counsellor at my request (I broke down in her office so that probably helped) and I did get an appointment for an assessment about a month later. I attended this and was told they would get back to me within a few weeks. About six weeks later, I called them and a very rude woman told me to wait my turn "We haven't allocated a counsellor yet". At which point, I thanked her politely and immediately decided never to darken their doorstep again. (I can be pretty determined). I was lucky. A few weeks later, a colleague recommended a private counsellor and I have been seeing her ever since. I appreciate that not everyone could do this. At present I have the means to continue my sessions. I don't go every week but I go fairly regularly and I know she's there if I need her. I am tremendously grateful because I believe for someone in my position, it is essential.
It's not good enough that people are told 'Come back when you are in crisis'. From the moment of the diagnosis I believe that the grieving process begins. You grieve for the life you thought you had together, for the loss of all the plans you had made. From that moment you live in the shadow of the loss to come, and you carry a burden of sadness everywhere. I went to my counsellor full of fear and sadness and I am still afraid, and I am still sad but she helps me to deal with my feelings so that I can continue to care for Roch and deal with the changes, and make sure Kate and Tom are okay and still go to work and take on more and more of the household tasks and responsibilities - and not explode.
But we also talk about strategies for coping - ways to stay strong and I find this immensely helpful.
She would really like me to meditate more, and I have been trying - I think if I could commit to this, it would really help. I don't know about other carers, but my mind never stops. I operate at a constant level of anxiety (my anxiety levels have always been high, even as a child) and my head buzzes with thoughts, worries, 'to-do' lists, 'not done' lists. Twenty minutes of meditation, quieting the constant inner voice would be the perfect antidote. I find it difficult, but I am convinced it would help and I will persist. It's not a habit learned easily.
As a person forever on the go, I have learned to stop. I love to lie on our old tatty green sofa in the kitchen, facing the open doorway, where I can see and smell our lovely garden, now badly in need of cutting back (see, there I go - 'to-do' list starting already). I give myself twenty minutes there sometimes - occasionally I doze, which is not a bad thing. Often the cat joins me and I find his presence oddly comforting. I am learning to take my ease when I can. I have to. This is hard for me. I have had to learn to give myself permission to be good to myself.
My counsellor has given me a mantra - 'Loving Kindness'. Don't be hard on yourself, she says. Be good to yourself. Believe that you deserve it. Accept help when it is offered. I am getting better at this. Help from neighbours, support from friends - I have never been good at it. I want to be able to do it all by myself but I just can't. I won't be able to survive if I do. So now I must learn to ask for help and accept help that is offered.
I've mentioned recent contact with Richmond Carers. I can see that this will become more useful as time goes on. I mean to make use of them! I think at the start I couldn't see myself wanting contact with other carers, but I was surprised at how much it helped me when I met with other carers recently.
It helps enormously to have some kind of interest, something just for me. I have rediscovered my writing. I have created a space of my own in our old bedroom and here I can scribble and muse and ponder and try to create. It doesn't matter what I write or whether it's any good or not. But it's just for me. When I'm involved in writing something, I get a little bit obsessed with it - so I'm cooking or washing or pegging the clothes on the line, but in my head I've got some character acting out a part. Would she do that? I ask myself or I must do a bit of research about that, I think and I dash to a notebook and jot something down. Then I go back to my task. I really don't think about anything else until I think it's done - it's never done to my satisfaction, but I reach a point where further fiddling just ruins it. To have something for yourself makes a big difference, I find. I joined a creative writing class and try to cycle there once a week. It's fun and for those two hours I really don't think about anything else.
That's another thing - cycling. Exercise. I've never been very good at it but if I'm going to get through this I've got to make some attempt to keep fit. Hence my beautiful bicycle, Betsy.
I recently decided to take my health in hand, and went to my doctor, to register as a Carer and to talk about how tired I felt and to get some checks done. She was really sympathetic and helpful and we agreed that I seem to be doing all the right things. The results of the blood tests are back (lipids are up - low fat diet recommended) but everything else is normal. I have to stay healthy, otherwise I won't be able to look after anyone.
I have good days and bad days. Sometimes I think I'm doing okay and feel I can cope. Other times I feel lost. This morning I felt a bit like that - I wrote in my private journal about feeling sad and panicky - I wrote that I felt grief-stricken. Then I reminded myself that 'the worst hasn't happened yet', and I dried my eyes and made one of my lists. It always helps me to get something done. The first item on my list was 'Blog' and so I did.