My name is Joy – and I very am proud to have been an ART Butterfly Volunteer since May 2016!
In my day-to-day life, I work as an holistic practitioner. I support people as they approach the end of their life. I also very much enjoy working with young adults who are living with a learning disability and volunteer as part of the bereavement team for Isabel Hospice.
I am drawn to being an ART Butterfly Volunteer because I can see the very great need for support within the hospital environment. Many more people die in hospital than anywhere else. We all have family and friends, and we want the best for them. It is so wonderful to know that even when we cannot be there for people close to us, for whatever reason, there are others than can provide comfort and support. Of course there are some patients who do not have any support at this time so it is even more important for them to have an ART Butterfly Volunteer to visit them.
I had worked with both Jo and Liz at the Lister Hospital as a Butterfly Volunteer for over a year, before getting involved with the Anne Robson Trust scheme at Princess Alexandra Hospital in late 2017, and was therefore confident that this would be another good experience for me. Jo and Liz are very different as individuals, so they make a great team! I have never felt anything other than totally supported throughout training and beyond.
The ART Butterfly Volunteer training is amazing – bonding with other volunteers that have the same drive to make a change is empowering. I love the fact that each Butterfly is unique, bringing different qualities to the role.
Jo and Liz are super approachable, and available to discuss any questions or worries.
After the training I felt empowered to approach staff with my observations of a patient, to speak on their behalf. My experience has been that ART Butterfly Volunteers are respected by Doctors and Nurses, who often look relieved when they find us sitting with a patient. They sometimes ask us how the patient has been doing. Nurses have said several times to me that they are happier when they know we are providing comfort and support. It must be difficult for them to watch and not be able to spend more time with their patients.
I have been told many times by family and friends of patients that it is such a wonderful idea, that they are so grateful and relieved that this support is available.
ART Butterfly Volunteers make a huge difference. We have the luxury of taking time to ‘be’ with the patient. A gentle touch, eye contact, sitting quietly reassuring someone that they are not alone, sometimes just one of these things is enough to relax and calm someone and to alleviate anxiety. Every single shift is different, and I always feel I have made a difference to a person in their life or death.
Family and friends also have the opportunity to be supported by our team. If a family member can talk openly, ask a question, maybe let out some tears without worrying, they may be better able to support their loved one and to deal with the coming days and months.
I have had some very beautiful experiences with patients and families. I would love to share one experience that I believe portrays clearly the impact of having an ART Butterfly supporting a family in hospital at this time.
As an ART Butterfly Volunteer, I went into a hospital room, where I found a lady on the edge of her chair, which was a little distance away from the bed, from where her Mother lay. I introduced myself and explained our role.
This lady looked very uncomfortable, not giving me eye contact. She told me that she would not stay long, she would go home. It was obvious that she was very frightened and unsure.
I made us both a hot drink. I assured her that I was there to support both her and her Mother.
I asked if she was happy for me to sit the other side of the bed, so that I could make contact with her Mother, telling her my name and who I was, gently holding her hand and stroking her arm, barely touching her, but just so she knew someone was with her. With both of us either side of her Mother’s bed, she spoke of her Mother, her family, how she was feeling. Her wanting to stay and support her Mother and really feeling that she couldn’t. She was feeling very, very overwhelmed. She was grateful for some company and re-assurance.
After a short while she began to relax. I reassured her that whatever she decided, the ART Butterfly Volunteers would continue to come in. Not everyone can sit with a loved one as they die. We talked a little about how music can help change the energy in the room, relaxing everyone, and that Mum would know that she was there.
The Daughter admitted to me that she was just about to leave when I arrived in the room. She felt that there was nothing that she could do for her Mother, and that she could not face the horror of her death.
I suggested that I would leave her for a few minutes whilst I checked on another patient, but assured her I would be back very soon.
I returned to the room. Although Mother’s breathing had changed, the room felt calm, light and loving. The Daughter had found some gentle music on her i-phone, which she had placed close to her Mother. She had drawn her chair close up to the bed, her head close to her Mum’s, holding her hand and stroking her arm, speaking gently and lovingly to her Mum. The daughter was calm, relaxed.
The Daughter and I hugged and she told me that she felt more settled after our talk, and that she would like to try to stay, as long as she had someone with her. We had a feeling that her Mother would pass soon.
We remained either side of her Mother’s bed, each of us holding a hand. The Daughter looked to me for reassurance, I gently made her aware that Mother’s passing was close. As if she had done this before, she spoke to her Mother telling her that everything would be ok, and that it was fine for her Mother to go to where she needed to be. The Daughter fully embraced the moment, remaining calm, composed and loving.
Mum passed away gently and peacefully. The Daughter took a few minutes to kiss her and to say a final good bye. She kept saying I can’t believe how gentle, peaceful and beautiful her death was. She continued to talk to her Mother for a few minutes after she died.
This lady was so happy and relieved that her Mother had died in such a wonderful and peaceful way. She told me that she will be telling family and friends that sitting with someone who is dying it is not to be feared and avoided, that it can be ok and actually helpful to someone to be part of.
This lovely lady could have easily gone home, feeling wretched about not staying, thinking that her Mother had a terrible death. She new she would still grieve, but that she could rest knowing that she did her best.
This was the perfect example of how just ‘being’ with someone, can change the outcome not only of the person who is dying, but whoever is with them, and in turn that very person spreading their story and encouraging others to embrace death.
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