Stonebird

  SOME WAYS THE CARER CAN CARE FOR THEMSELVES 1. Take a few moments at least, at the beginning of the day, to centre yourself and be still, to prepare for the day ahead. 2.Do not overload yourself nor rush things; that is when mistakes get made and you can end up feeling bad about yourself and hassled generally. 3. Do not over extend yourself, trying to please too many people and not looking after yourself as a consequence. 4. Learn to be assertive in a gentle, kind way. 5.Find things that you can enjoy in appropriate ways that do not cause problems for the person you are helping. 6.Be creative in how you can do things in new ways, don’t be too rigid or expect more than is possible of yourself or the other person. 7.Look for the small things that bring happiness. 8.Appreciate yourself. 9. Appreciate other people. 10. Acknowledge what is going on inside, do not just shut down or not deal with feelings that are uncomfortable to deal with. 11. Become more aware of the simple things in li

  Getting through the impossible moments when you are faced with life-altering severe illness, demands a high degree of self-reflection, honesty and understanding. For the last thirty years my wife and I have had to live within a context of unimaginable, endless physical torment and multiple hypersensitivities with no cure, no standard treatment pathway, no way to physically alleviate her intense, ongoing suffering. Learning how to care and learning how to live, then, has had to be our focus. Much more than just seeking to survive or cope, we want to grow together and live our marriage to the fullest possible extent. Individually different, the challenges we face are jointly the same. How can we stay connected, loving, flowing in this agonising, intolerable situation that we find ourselves in, not just for a minute, not just for a day, week, month or even a year, but instead, for ever? That is overwhelming unless you take it a moment at a time. The challenges I face as a husband,

WHAT DOES YOUR APPROACH TO CARE SAY ABOUT YOUR DEEPEST BELIEFS, THOUGHTS AND FEELINGS? Perhaps you are not that aware of how your thoughts, feelings and beliefs influence how you provide care to someone else. Or perhaps you have never articulated them clearly? Yet if you want to offer the best care possible, they are important to understand. Your values are what you hold dear, your beliefs are what you think is true and your attitude is how your values and beliefs influence your feelings and actions. For example if you are feeling distracted by wrong thoughts or if you are finding it difficult to be compassionate, you are almost certain to be less aware of the needs of the other, so you may not provide help in the most sensitive way. I cannot emphasise enough how much, over and over again, it helps to take the time to really understand what the other person is going through and how their illness affects them, particularly if they struggle with interaction themselves. Always

  It is intricately complicated, learning how to live and communicate with someone whose communication pathways are broken on every level. The one who cannot think, move, remember, speak, write, tolerate sound or movement, easily or at all, is drawn into a potentially fraught and delicate relationship with the other: If the person has to wait in agony, so you too need to learn to wait, patiently and peacefully, hopefully, despite any personal frustration or need. If the person cries out, you feel it deep in your guts. If the person is suddenly confused, you too experience the uncertainty of confusion, not knowing exactly what is required. If the person is cross or distressed, it breaks your heart. A fragile relationship is born over time, one that wends a path between silence, stillness, movement and sound.That path is not easy to navigate, it can only be entered upon when guided by a true heart and the most sincere commitment of love and compassion. (Adapted from "More Notes For

  Unfortunately many of us do not know who we are. We spend our lives seeking success, social validation, status, affirmation, too terrified to let go. Caring for another, however, challenges all of that. What if today : You knew that you are unique, beautiful, precious? You saw yourself and others with soft eyes, especially if and when you feel like withdrawing? You could let go of guilt? You let go of shame? (Adapted from "Caring For ME" https://stonebird.co.uk/CARE/ )

  This is the story of Stonebird, the many, many years of campaigning, fighting and now the struggle to move on, to reclaim our life. https://youtu.be/fYfk800_kbA