They met at a seven-year meditation/philosophy course, which required participants to travel to India each year for the 1st week in April for instruction. It was taught by H E Tai Situ Rinpoche one of the great Meditation Masters.
The seating was cushioning on the floor, he sat in front of her. He was from Germany with limited English and she was from New Zealand (NZ) with limited German but they were able to communicate. They formed a group with the Spanish man that sat next to him and the Taiwanese woman that sat next to her. The group exchanged email addresses and from time to time corresponded. When in India they would all have breakfast together.
After year three of the course, he wrote to say he had to drop out of the course as his 88-year-old mother was sick and he needed to care for her. He wrote about his newly acquired knowledge in gynaecology, breast cancer, podiatry, and dentistry gained from having accompanied his mother to all of her appointments.
She wrote back and gave him some moral support. She also sent a gift from the NZ sheep, woollen socks for both his mother and him.
Advance Care Planning (ACP) is recommended for everyone. It allows people to convey what is important to them. It can guide loved ones and health professionals as to what your wishes are in the case of you becoming incapable of expressing yourself. Such a situation is possible for anyone and thus it is recommended to be completed whilst you are well. Although it can be hard to imagine how you would feel or act in the event of severe illness or disability. ACP allows people to take some control of the end of their lives. This is what I want, this is want I don’t want. This is who I want around me. This is how I define what is quality of life for me. This is where I draw the line. It can be a confronting and difficult exercise to complete with your loved ones but it maybe a crucial method to communicate what you really want.
My patient had been diagnosed with MND (Motor Neurone Disease) over a year ago, and after attending the second clinic appointment they had introduced him to ACP. He read through the booklet with his wife, and it appealed to his organised nature. He always had a monthly, yearly and five-yearly plan in action. The doctor had said that most people would die of MND 18 months after diagnosis. This can mean time is running out, and this is not aided by diagnostic delay. All other illness have to be excluded before the diagnosis of MND is confirmed, for most people it is still a death sentence.
When we are born we come with nothing and we go with nothing. In between we try to make a contribution to our family, community and the world around us.
The transition to becoming a caregiver is difficult, the biggest challenge is going from having lots of time for yourself and an ability to make plans, to having no time. Much like a mother I guess. I was given a ringside seat into old age and death. Watching the decline, you are forced to confront the mortality of your loved one as well as your own.
High dependency needs mean that no matter how much you love the one you are caring for you get very tired. The forced isolation can be lonely for a lot of people. My experience wasn’t so much the loneliness but more the loss of “me” time. Early in the caregiving role when I was able to go out for a couple of hours I would joke with my friends that my visa was up and I had to get home before my visa was cancelled.
This program has been developed specifically for those who are supporting a person receiving palliative care.
You’re invited to take some time out for a mindful journey through the Matisse Alive exhibition, where you can explore guided slow-looking techniques and discuss observations and insights in a paced experience.
It’s an opportunity to engage with art and with your own feelings in a supported environment; share experiences with like-minded people; acknowledge your identity apart from your caring role; and enjoy ‘in-the-moment’ pleasure. You’ll also discover how mindful activities can support self-care, and learn skills and strategies that can be transferred to the care environment.
The experience is facilitated by artist and researcher Dr Gail Kenning and Danielle Gullotta, senior access programs producer at the Art Gallery of New South Wales.
The program is a partnership between the Art Gallery, Palliative Care NSW and the University of the University of Technology Sydney.
Saturday 12 March 2022, 9.30am – 11:00am
Art Gallery of NSW, Art Gallery Road, Sydney NSW 2000
It had been one week since her husband passed away when she went to the cemetery to visit him. She wanted to go earlier but she had been too unwell. She was tired from the effort of walking and was grateful she could rest on the seat of her walker. She made her way slowly to her husband’s grave. In the distance, she could hear the sound of someone sobbing.
She sat looking at the headstone and replayed in her mind memories of when they were together. It was not her first experience of death, having lost her two year old daughter many years ago.
She recalled many weeks spent at the cemetery mourning her loss. But then one night she had a dream of angels in a line descending from the sky, each one bearing a candle in their hand. Then she saw her daughter but her candle was not alight. She rushed towards her daughter when she heard a voice telling her that it was her tears that kept her daughter’s candle from burning.
When the hospice nurse had suggested an admission into hospice she really had to think about it. Did this mean that she was about to die? Was that why she had suggested I go in, because they thought that I was about to die? They denied it, and said that they wanted me to go in to help control my breathing and distress. I asked my family and they were scared as well, but knew that I needed help. We decided to give them a go, but man we were still nervous about it.
Turns out we didn’t have to worry, the people were friendly and nothing seemed too difficult. The doctors and nurses started working on my breathlessness, and by the next morning I started to feel better. I met a number of the team members before I headed home a few days later. We had been worried that when you’re admitted into hospice that there is only one way out, being wheeled out by the undertaker. When it was time for me to go home, I walked out the front door.
She was 80 years old, terminally ill and had loved gardening all her life. She filled her yard with beautiful flowers and an abundance of vegetables. She enjoyed the peace and satisfaction it gave her. Only using what was needed, she usually gave away the vegetables to family members or visitors.
When I told her I had a job as a part-time Backyard Garden Coordinator, she suggested that it might be nice to have a vegetable garden. When I reminded her of the promise I made to myself when I was 10, about never being a gardener when I grew up, she said to me, “darling things change, that was then and this is now.”
Hi, my name is Naomi Lees, I work at Edmund Hillary School in Papakura. I met Dr James Jap a few years ago when he came to a meeting at school. I have really enjoyed Palliverse posts. When James asked recently who would help I said I would and did nothing about it for six weeks except for the occasional pang of guilt for not doing what I said I would do.
I looked after my parents in the last two years before they died. These posts will contain some of what I learned.
So here is the first of my contributions:
Looking for Kindness
When I was at school I was out on duty in the playground making sure the kids were safe in the playground. Then two little girls came up to me and one of the girls was new to the school and she was 5. The new girl was crying loudly. So I gave her a cuddle and asked her what was wrong and she said to me.
“Oooh I’ve lost my friend.”
“Don’t worry,” I said, “I’ll help you to find her.”
“What is her name?”
More tears then she said, “I don’t know.”
Then I said, “what does she look like?”
More tears then she said ………”She looks KIND.”
Bianca the other little girl who is 8, looked at me and we both smiled then I said very gently to her that Bianca knew all the kind girls so if she held Bianca’s hand and walked with her I am sure they would find her friend. Off they went in search of Kindness!
This discussion with Stacey Panozzo, Joanne Britto, Christine Hofmeyer and Avi Paluch reflect on opportunities for consumer and community involvement (CCI) in palliative care and share a new program of work that seeks to explore, develop and implement a program to enhance CCI in palliative care in Australia.
The purpose of the Palliative Care Research Network (PCRN) is to foster the evolution of collaborative scholarly inquiry in #palliativecare in Australia. The PCRN is leading a program of research that focuses on consumer engagement, which seeks to enhance consumer and community involvement in palliative care. Learn more about the PCRN here: https://pcrnv.com.au/
He was well respected and had many visitors. He had sponsored most of his family to come over to New Zealand. He had enabled his brothers and parents to come over in order for them to have a better life. He was the reason that the children’s generation grew up speaking English and Chinese. He ran his businesses successfully with the help of his siblings.
It was unfortunate that he became unwell with cancer, but he was well-supported by his family. He had always been there for them so when he was unwell they were there for him. He was able to purchase the best care that money could buy, and his Private Oncologist tried everything that was available, but it did not work.
He went back to China in order to access other treatments but they did not work either and meant that he had to spend time away form his family which he did not like. Family was the most important thing to him in the world. That was the whole reason that he had worked so hard in order to make things better for his family, so that they could enjoy their time together.
He started to deteriorate more quickly and he was admitted for symptom control but ended up requiring end of life care. There was always a family member present. When he started having trouble swallowing, the family asked about tube feeding. We knew that back in China if you could afford to pay for it you could access almost any treatment you wanted. It was explained that we did not think that artificial feeding and hydration would be beneficial. He became sleepier and less clear in his thinking. Eventually he became comatose.
His family continued their vigil, even though he was unresponsive. They asked how long he had left, and we couldn’t give them a adequate answer. They rightfully pointed out to us that he had not had anything to eat or drink food about two weeks. How could he keep on staying alive? I had trouble explaining it with all of my medical training, our science could not explain what was going on.