Royal District Nursing Service of SA Inc (RDNS)
2009 Christmas Appeal

Charlie's Story

My husband, Brendan was referred to RDNS by his oncologist about 18 months ago when we were told that the tumour in his brain had returned yet again after surgery. Within a few months the tumour had regrown to the size it was when it was removed, but this time there was another one as well. We were told there was nothing more that could be done. I remember the oncologist saying she was sorry, but it was time to start preparing to die, to think about what things we really wanted to do in the time left, and to spend time with the people who were important to us.

I remember Brendan asking how long he had, and what he could expect to happen. She said that she didn't know but it could be 3-18 months, but given the rate of the growth it was more likely to be closer to 3 months. In the time left, she told us, he could expect to suffer the loss of his vision, his mobility, his speech and even his personality. And on top of that of course, he had to face the reality of his death and we had to face the reality we were soon to lose him. It was unbearable.

So we came into contact with RDNS SA at a time in our lives that was the saddest and scariest of times.

We really wanted to make the most of the time we had and ideally, if possible, for Brendan to be cared for at home and to die at home. We had no experience of anyone who had planned to die at home, and we knew hospital could be an option if Brendan was no longer comfortable with being at home, or if I was no longer able to cope. Our home felt like the right place to be as it was a place where we had lived and loved together for 28 years, where our daughter was born and where we had so many enjoyable years together, years of fun, food, drink, and conversation with family and friends. I took leave from work and became a carer.

I remember the first visit from RDNS when we were registered. From this first visit we felt at ease, that we were not going to be alone, and that we were very lucky to have such experienced nurses coming into our lives. Over the next year or so they worked with us so sensitively, so professionally and so compassionately. They provided us with outstanding care and support.

They taught me many things I needed to know as a carer, and they did this just at the right stages in such a supportive and encouraging manner. In the early days this included dressings for his feet when they were so badly blistered from chemotherapy. Then techniques for assisting him to roll over in bed, and to transfer to and from bed to wheelchair, then how to use urodomes and how to modify colostomy bags so they didn't cause problems. Also about the different drugs, their side effects and how to manage them, and towards the end how to use a hydraulic lifter, and to administer drugs they had drawn up. I got to learn about some of the amazing things that can come out of an RDNS boot!

Probably the most impressive part of their care though, was in the unchartered waters of the emotions. They respected how we were feeling each day. Some days there was a lot of sadness, and other days there was a lot of fun and laughter, and many a mix of both. They were able to adapt to whatever the household was doing on the day, no matter who was there and what was going on.

They were attuned to my exhaustion, even when I wasn't and they knew when I needed help.

They supported us through the many transitions where Brendan's condition began to require more support, and through his frustrations at becoming less independent and more reliant on others. These moments often happened after seizures. The first few seizures happened when we were on our own and they were pretty frightening for me. Being able to talk with the nurses about this I found very reassuring. He had no recollection of the seizures and at times he thought I was making them up, so they were good to have on side at these times too!

I really appreciated the way they helped him to feel good about himself. As his world had shrunk from being a highly active and respected school principal, and co-convenor of a men's group at the Cancer Care Centre, and a great socialiser who was often the life of the party, to one where the highlight of the day was his shower and his shave. On reflection, this was the only outing of the day from his bed at one point. He really appreciated the care they took with this and the intellectually stimulating conversations that went with it. This was very important to him as someone with brain tumours. There were also many laughs, which are very important at times like this. The evening nurses too went to great care to ensure he was as comfortable as he could be. It was quite moving to see the efforts they went to with various cushions from around the house to prop him in ways to make him most comfortable.

There were stimulating conversations about life, death, family, friends and in the midst of it, talking through what was happening, what it meant and what it felt like. At all times they were positive and empathetic with a kind of understated wisdom. It felt like we were partners in care, where our experience and opinions were mutually valued and that we were all learning as we worked together.

It was really important to me to do my best as a carer, and with their help, I feel I was able to give him the best care I possibly could. I can't describe how important this was, and still is to me.

Brendan was a beautiful and inspiring man who was deeply loved, not just by me but by many friends, family and work colleagues. And being at home meant that many of these people were able to be directly involved in supporting us and play an active part in the care partnership too. Like me I think their involvement helped make a difference to their sense of despair and powerlessness about losing him. Being able to do something was a way of showing their love. They all thought the nurses were fabulous too! Like us, nearly all of our friends and family had no experience of anyone choosing to die at home. Some of them initially were very concerned about this choice, but once they met the nurses and saw the quality of people involved, their calmness, experience and their confidence in me as a carer, they were reassured. They even became advocates.

 

Another important part of this partnership, it is important to acknowledge, was Western Palliative Care, and how well they and RDNS worked together. As clients it was good to know they respected each other so much and communicated with each other so well.

All of this helped to create a loving and supportive, stimulating and social environment at home and the RDNS nurses were an integral and essential part of this. Being at home meant we could have people over for dinners, for sleepovers, just like we used to. The hospital bed had pride of place in the living area, the hub of the house, where cooking and living was happening as usual. It was as if he was hosting guests in his own home, in other words business as usual. This meant he was as happy as he could be, given the circumstances and therefore so were the rest of us.

In summary while this has been without a doubt the saddest and scariest of part of my life, it has also been a very enriching experience where we felt surrounded by so much love and support. In the end Brendan's death was very peaceful, even beautiful in a way. The last thing he said to me was “Charlie, can you please kiss me on the eyes?” He closed his eyes and I kissed him on his eyelids. He smiled and went to sleep. He died a couple of nights later on St Patricks Day at home.

The care we were all able to provide, I believe, was a major contributor to Brendan's death being such a peaceful departure. It enabled us to share the grief and loss in our own environment.

I know that for me this has been very reassuring to reflect on over the last 6 months, while I try to adjust to life without him. Without the sensitive, professional and compassionate support of the RDNS nurses, this would not have been possible. It has been very helpful in my own grief, to know that while I miss him enormously, and I feel sad he is gone and that he did not want to leave, I am reassured to know that he had the best care in the best environment, with the best people.

And for that I will be forever grateful.

Charlie
Sept 2009

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