An Inspiring Conclusion

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This is Colin’s story about his mother Agnes.  Agnes died at home and Colin shares with us his reflections on death, dying and loss. Many thanks for sharing your story Colin.

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Last September I took a trip to the Hawkes Bay in New Zealand to see my mum, Agnes McMutrie Jamieson Hunter Weir, (nee Hanna). Born in 1933 in Glasgow, Scotland at the end of the great depression she was a WWII child. No longer having started kindergarten, she was in the war zone; Glasgow’s war machine targeted by the Luftwaffe. From the moment she was born she learnt to fight yet amidst all that, a beautiful woman came to adorn our lives. Out of the air raids and routine trips to the shelters came a woman who cared deeply for children, oozed spirituality from her bones though was not overtly religious and seemed to relish being at the back of the queue watching others served first.

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She’d been living on her own since my Dad passed away of cancer in 2005. It had been 18 months since she’d popped over to share Xmas with us in Sydney and long overdue some mum and son time. We visited vineyards, ate well, told stories and hung out. She’d been finding it harder to do the day to day things, so we took the time to visit a few retirement villages to see if any of them might be worth a try. We set up some time with the GP to kick off the assessment to determine the level of care mum would need and could be entitled to. After a lovely couple of days we’d made some good progress and it was time to head back to Sydney, promising to check back in when I got back from an upcoming trip.

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Whilst away, the assessment in October revealed a mass on mum’s liver and in her inimitable and stoic way, she simply declared “it’s not good Colin”. They were the same words she used when she told me of Dad’s cancer, that had him gone 6 weeks later, the interpretation clear. Family holiday to Noosa, a 2 week tour of the US with work, life’s busyness and I was back in “The Bay” in the middle of November to spend a week with mum, initially alone and then joined by my brother. It felt surreal, or maybe that was just my hopes kicking in, separating me from reality. We made great use of the time, visiting more wonderful vineyards, talking about the past and the future and being. My fiancé, Kirsty and I had watched the wonderful movie Wind River before getting on the plane and a scene stuck with me.  "I got good news and bad news. Bad news is you'll never be the same. You'll never be whole. Ever. What was taken from you can't be replaced. (sic) She’s gone. Now the good news, as soon as you accept that, as soon as you let yourself suffer, allow yourself to grieve, You'll be able to visit her in your mind, and remember all the joy she gave you. All the love she knew. Right now, you don't even have that, do you? that's what not accepting this will rob from you. If you shy from the pain of it, then you rob yourself of every memory of her, my friend. Everyone. From her first step to her last smile. You'll kill 'em all. Take the pain, Take the pain, Martin. It's the only way to keep her with you. It was time to take the pain.

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In a few short weeks the cancer had begin its awful work and with significant organ failure mum had become very jaundice and the glow was beginning to go. 6 to 8 weeks, maybe. Its truly awful to watch someone you love so much go through death. It’s so awful, the easiest thing to do is to stay away, get busy, avoid the pain. But as the insight from Wind River tells us, avoiding that pain robs us of their memory, our soul connection and whilst they are still alive it robs them of the people they need most as they go through it and us of the opportunity to lean in and be very present in one of life’s great paradoxes – a fact and a mystery all wrapped up in the same ball of wax.

It was during this time that mum talked about her death. She had made the decision that she didn’t want to fight the cancer. Hers was a rare form of “C” and as such there was little experience in dealing with it. The only forms of treatment were brute force chemo and radio therapy as the profession were still struggling to isolate a selective and effective protocol. If the patient was young or strong they might cope with it, even win. But that wasn’t my mum. Brute force radiotherapy and surgery would surely kill her and if it didn’t it would make her last days unbearable. “I’m ready” were my mum’s simple words. She told her GP that she was not going to fight this. She would accept it, just as she had done with so much in life. That acceptance was a gift, she had and shared with all that came to her.

As the days began running into each other, inevitable feelings of death and my beliefs popped in and out of my consciousness. With my sister and Dad already taken by the C I’d had plenty of time to consider and reconsider. Again my mum’s views helped: “At least I’m not being taken by a violent finish Colin. That would be awful” I was reminded of the daily news stories of those taken suddenly and badly and agreed with her razor-sharp analysis. Unhappy with her dying I realised I was very happy that I was being given the chance to share it in real time with her, a strange upside from slow deaths. My own spirituality, born of hers, also made me fear less, not fearless but to fear less. Sure I was going to miss her. But to the Wind River point, I was not going to rob myself of her memory by trying to escape from the pain of her death. There is no means of escaping death that we know of. The only thing we can do is make sure we take full advantage of life now so that we can face that moment with accomplishment and comfort.

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Our previous jaunt around several retirement homes and hospitals also led mum to another conclusion. “I want to do this at home. Can I do that? ” Almost to a one, the institutions were drab, cold and smelt of the end. Thus, a plan was born. “Let’s make mum’s end as fabulous as we can and do it at home” That was inspiring. I was certainly in but where to start?

I thought of my good friend Danny Hui, CEO of Sameview who suffered a similar bewilderment when his child was born with Cerebral Palsy in the middle of a shakeup of the National Disability Scheme to decentralise care authority to parents and families. On the surface it is a great idea but leaves thousands unprepared and under skilled for the daunting task ahead.  I had also begun reading Jim Collin’s “Good to Great” analysis of the greatest versus the best companies. Both Danny and Jim had come to the same conclusion; start with a great team and go from there. Don’t worry about the answers just yet. Get the right people on the bus and let them figure out where the bus should go and how to get there.

First up I called my brother in law Bruce, my sister’s husband. Bruce is one of the smartest people I know, leading a group of scientists helping New Zealand farmers get the most from their land. He had lived near my mum since he and my sister had got together and had come to know my mum as his. He also has a deep spiritual centre. In the interim Bruce had arranged for the nurses at Miranda Smith to give us some night cover whilst I was travelling and have this covered by the local health department. He had scored a couple of free nights and they had done a good job. I did a quick internet search for alternatives, spoke to whoever turned up on the phone to get a sense of ethos, compared prices and asked Miranda to keep going for as long as we wanted. They could provide sleep over nurses from 9PM till 0700.

Next up I called mum’s GP. I couldn’t get through to her directly but was able to secure an appointment for as soon as I got back into town. Nicola had been sent from the gods to be smart, compassionate and serve. We hit it off straight away. She was incredibly supportive of mum’s wishes and committed to daily check ins. She was astutely non-committal and non-judgmental when it came to our choices but very supportive. I’d been brought up in a medical family. Between Bruce and I there was no shortage of science and experience with death and cancer. I’d like to think that helped but perhaps only in so far as it gave us both courage, some experience and a good set of questions. Either way Nicola was a fabulous addition to our team and we were glad we had her.

We asked Nicola if she thought we could keep mum at home through to the conclusion and if so what were the parameters under which that could happen. Her answer was that in her conversations as with mine, mum had confirmed that she didn’t want to go through with any treatment, that she was ready to go and that she wanted to do that at home. Nicola confirmed that there was no reason that couldn’t happen so long as we as a family wanted it and were prepared to be a very active part of the team. This later part is important and comes without judgement. Death is a very confronting thing for many and encroaches on many emotional, spiritual and cultural boundaries. If we were going to have mum at home, we most certainly had to be “in”  Having people wandering in and out of the house unmanaged and unknowing of what was happening would not work. We had to own it.

We were in and on consultation with Nicola, enlisted the local hospice, Cranford, who had a mobile service and were able to set mum up with the right meds and delivery protocol at home as well as a hospital bed to assist with the nursing and mums comfort. A normal bed is not made for being in 24*7 and the new beds are particularly well set up to deal with pressure points extremely well.

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The last point we needed to cover was 24*7. As a family we were happy to be in during the day but after trying a couple of night shifts, soon came to the conclusion that this was very soon going to exhaust us. Fortunately, this was easily fixed, having already found Miranda Smith to do just that. Miranda specialize in in personalised flexible homecare so that those who prefer to stay in the familiar and private surroundings of their own home can have maximum independence yet have access to help as it is needed. Staffed by registered nurses who care about the elderly I can’t praise the girls highly enough. Steph and Di were just astonishing in their expertise and compassion and very quickly became a part of our family for the 2 weeks until mum passed.

With this team in place we were set. We set mum up, decluttered the house, filled it with aromatherapy oils, music, orchids and flowers, made it calm and as beautiful for her and us and invited everyone to drop in anytime, asking just that they check in a couple of hours in advance so that there weren’t too many people in the house at one time and mum wasn’t being over whelmed.

With the systems in place we moved into our routine, as mum slowly but surely passed away. We cried, laughed, hugged her and each other, read poetry and lived very presently. On December 14th 2017 mum passed away: Cholangicarcinoma.

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Getting a vision and the plan in place was the hardest. Building a vision for death – how do you do that? Face up to it - Why? Esoterics aside, none of us knew that we could have mum die at home and that it was an option. What do you need? Who do you need? What do we need? We took Danny and Jim’s advice and just started recruiting the team and finding the right people to have around us. Look for that blend of compassion and science that suits you.

That Dad had passed away in a hospital 12 years and my sister 10 years earlier helped. We knew cancer. We also knew that having our loved ones in a hospital whilst being safe was not perfect. We didn’t feel as if we could come and go as we pleased and we certainly didn’t feel as if we could be ourselves. I think it also helped that we had grown up around doctors and nurses in the family; comfortable with the science and practice of medicine and an open dialogue around death and dying.

I found it tough to juggle busy and being. There is always busyness. So many things to do. We knew mum was dying and that very soon she would not be with us. The most obvious thing to do is to ignore everything and just be with her. At the same time, we were not going to be in her village for long and we were all due to be flying back to our home towns and countries in a very short order. There was so much to be done: estates to be prepared and what seemed like a large decluttering job to be done. All that busy work was also perfectly distracting; distracting from the very real notion that mum was dying. I’m not sure I got the balance right, but I think I got the awareness of the conundrum right, checking in on myself every time I got caught up in busy, asking myself was the busy important to be done now? was I using as a distraction or a break from the emotions filling my blood? Was I ok with that? I inevitably went back and sat with mum.

We have certainly gone back to the future on palliative care. Over the tail end of the last century we institutionalised a lot of care. I’m not sure this has helped us, but we are finding a return, not only to community-based care but to family-based care. Rising house prices will have a great and positive impact on this, with granny flats being built not just for Air BnB but for Granny and generations of families living together again.  The internet gives us access to resources, knowledge, help, and stories and will further this. We are empowered to look after our families from young to old. We owe it to our mums, dads, grannies and grand dads to receive all the love and care they gave to us. Whilst many conditions will necessitate intensive care, we should certainly challenge where to draw the line on institutional versus family care and do that regularly through the cycle

I wish I knew 5 years ago that mum was going to die this summer. Life’s imperfect and we make decisions on imperfect knowledge. We know we should live every day as if it’s our last, spend less time working, or perhaps working more on things we care about more, things more than money, more time loving. I wish I knew that mum’s Xmas in Sydney in 2015 was to be her last trip over. We will never. We do just have to book in the holidays and time with the people we care about regularly while we can.

Talk openly about death and dying, our fears of it, our plans for our death and the bucket list we are going to start working on. When it does turn up, turn up. Be the family that is there for the dying, wrapping your love and time and heart around them so that they are not scared and not alone as they die. Death may scare you, but its unlikely to be as scaring as it is for the one that’s dying. If you get a chance to be with someone who is dying close to you, share the options, be brave and spend all the money and time you can get your hands on to make that great. The clock will be ticking and those that turn up will be rewarded. “ If you shy from the pain of it, then you rob yourself of every memory of her, my friend. Every one. Take the pain, Take the pain. It's the only way to keep her with you”

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This blog is part of the ‘Did You Know?’ blog series where D2KDay is bringing to life conversations and information around death, dying and bereavement.