The Huntington's Scene In  New Zealand

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Graham Taylor

Articles taken from the Dec. 2003 Huntington's News. The Quarterly Newsletter of the Huntington's Disease Associations of New Zealand

Emotional Support for Carers.

by Adam McLean, Counselling Co-ordinator, Carers NSW

The Mindfulness approach is about welcoming and allowing any experience to be open to the difficulties and adopting an attitude of gentleness.

 Stop and Smell the Roses

A carer recently said that she couldn’t change the situation she found herself in. She didn’t want to feel resentful, angry or trapped, but she did want to feel in control. When she spoke of her caring situation, she began to experience herself in a different way. She found that she was resourceful, creative, strong and willing to give most things a go. What she said next was interesting, “I need to learn to stop and smell the roses”. She explained that she needed to stop pouring all her energy into an impossible situation that she knew she couldn’t change and look at the way she was dealing with it. She realised that her garden was her solace, that her roses had flowered and that she hadn’t taken the time to stop and smell their perfume, because she had been so caught up in what she was doing. She had forgotten the pleasure of the garden and the sense of calm and fulfillment she got from tending the roses, helping them reach their full potential. As a result of this exchange, the carer embarked on a new plan for herself and part of it was to live in the moment.

This carer’s story reminded me of a short presentation I recently attended on Mindfulness. Mindfulness means being aware by paying attention in a particular way. This includes being aware of the purpose, being in the present moment and having a non-judgmental approach (Kabat-Zinn 1991). As part of the presentation we were asked to experiment by placing a piece of dried fruit in our mouths. We were to experience the fruit using our senses; slowly taking in the texture, the taste, how we hold the fruit in our mouths, how we chew, use our tongue, teeth and eventually, swallow. It sounds silly, but it was amazing how much I took for granted. It was interesting how difficult it was to allow myself to take the time to absorb all the signals from my senses and to experience the moment. What was also interesting was the amount of head talk and my body language - my level of discomfort, my irritability and my struggle to move at a much faster pace. This whole process was just too slow for me to endure. Try this for yourself and see what you experience. Write down your thoughts, your senses, what happens in your body and your overall level of comfort. Or try it with some friends over coffee for something different.

The analogy of taking time to slow down and experience what is happening is nothing new. I always say that change happens when awareness occurs. If we become caught up in the doing, to the cost of our awareness of what our bodies and minds are saying to us, it’s no wonder that we find resentment, anger or futility creeping into our lives. The Mindfulness approach is about welcoming and allowing any experience, to be open to the difficulties and adopting an attitude of gentleness -if not with others at least with ourselves (Segal, Williams Teasdale 1994) [italics my words.].

One way to experience this is to look at your situation with the mind of a beginner, as if you were seeing everything for the first time. This includes a willingness to be patient, understanding and accepting that things unfold in their own time; to trust in your own self; to accept things as they are now and to let go, by cultivating an attitude of not holding on to things we can’t change, this can be achieved by adopting a stance of impartiality through non-judging thoughts and witnessing the constant stream of criticism and reactions to the inner and outer experience (Kabat-Zinn 1991).

The Carer who did not take time to smell the roses, reminded herself that her life had become so overwhelming she had forgotten to take time to replenish herself. Being mindful of how you are and what your mind and body is saying to you is a simple but effective way of becoming more attuned to your own needs. It will also provide a way of tuning in to what is useful and nourishing in your life and tuning out that which is not. Smell those roses and you never know what you might find.

Reference: Kabat-Zinn J (1991) Full Catastrophe Living: using the wisdom of your body & mind to face stress, pain & illness. Delta Press.

Segal Z, Williams J.M. Teasdale J (1994) Mindfulness Based Cognitive Therapy for Depression. Guildford Press NY.

Acknowledgement: “Carers News”, the newsletter of Carers NSW Inc May 2003.

Finding a balance in the Caring Role.

Feelings of being swamped, overloaded or overburdened can make a person realise that they have lost sight of their dreams, wants, needs and even a sense of who they are. Their health suffers, their interests and ability to meet people is reduced and/or compromised, they have difficulty making decisions, they can’t relax and if they do something different they know that there is no point, because nothing has really changed.

A carer recently rang the Carer Resource Centre and spoke of how her life had become lost in the demands of caring for her mother. She no longer recognised herself; she had lost sight of her .dreams. She didn’t resent looking after her mother with dementia - she just didn’t know what to do now that her mother no longer needed her, since she was placed in residential care. She visited her mother everyday, often leaving late. She tried to do as much as she could for her mother when she visited and even though she sensed that she was doing too much, she didn’t know how to stop. She had difficulty relaxing and didn’t know what to do with all the time she had each day; she couldn’t settle into a routine of her own. She used to work full-time, but the hours gradually dropped away till she took early retirement, as she cared more and more, over the years, for her mother. She spoke of a sense of losing herself and not knowing who she was any more.

This is an extreme story of one carer’s life, but it’s not an unusual one. Caring for someone can take its toll. Carers commonly express a sense of guilt. Guilt can stop you from taking some time out from caring to relax and enjoy yourself. Anger can come from a sense of being trapped in a (caring) situation and guilt follows, as you realise that the person you care for has no choice to be in the condition they are in. You chastise yourself, thinking, you have no right to think this way and that you are being selfish.

Caring can take up a little or a lot of your time. It can be difficult to find the space or the opportunity to have some time for yourself. But you owe it to yourself to find the time to look after yourself. It’s important to strike a balance between what you do for others and what you do for yourself. You may need to review your own expectations of your capabilities and what you can do with the time that you have. If you feel overburdened, tired and/or desperately in need of a break, it’s probably because you are doing too much. This can have a knock-on effect, making you overemotional or emotionally withdrawing from others. It can also mean that you have less time to listen and share and enjoy your time with others and that you begin to stop listening to yourself.

Finding a balance is about making a choice to take time out, because you need to look after yourself as well. If you choose to go on till your life is consumed and driven by what you are doing for someone else, then this can swamp your life and overload it to the point where you lose a sense of yourself. Take time out, use respite, keep an interest in an activity that you enjoy and speak with someone else who can help. Pamper yourself, because then you will be helping yourself. Keep your expectations of yourself realistic. Strike a balance between the needs of the person you care for and your needs, this can help relieve your pressure and the sense that you are no longer in control of your own life. There is joy and fulfillment to be had in the caring role, but there is also a need to balance your sense of self and the possibility of losing yourself in the caring role.

The carer I talked about earlier managed to access her sense of grief and loss by talking over her situation, she began to see that she had put her own life on hold and that her care for her mother had become all-consuming. She felt lonely and alone and needed to regain her confidence in her own abilities. She later rediscovered her interests as she struggled to regain control of her life. If you need to talk to someone, give the Commonwealth Carer Resource Centre a call on 1800 242 636. We would like to hear from you. We have some fact sheets that you might find useful, especially the one on former carers; it’s free too.

Acknowledgement: “Carers News”, the newsletter of Carers NSW Inc April 2003.