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The view from our accomodation |
Unsurprisingly the topic of conversation for the last couple of months has been death. Well, death and dying and the admin around these things...such as wills etc. I've been asking all my friends and work mates if they have a will yet. So many people don't, because it's either confusing and they don't know what to do, or they just don't like thinking/talking about death. It's kinda funny as, to paraphrase Benjamin Franklin, the only two certainties in life are 'death and taxes'.
One of the main reasons we've been talking about death was the increasing decline in Peter's dads health. He's been on dialysis for over five years. But his health became a real concern three years ago. He collapsed at home and was taken to the local hospital. They then organised to fly him to a Melbourne hospital where they determined he had the beginnings of sepsis due to gall stones. He needed an emergency operation and the doctors were straight up with Peter. His dad's health was poor and there was a high chance he wouldn't survive the operation. We braced ourselves, but he made it through the procedure and was then driven home by patient transport. Peter went to help him recover, but soon realised he'd been discharged too early and he was taken back to the local hospital for a while.
Each time we visited there was a marked decline in his health, but his worst fear was going into care and leaving his home. Peter tried to put a lot of home care package support around his dad, but one day two years ago the decision was taken out of our hands. Another collapse in the middle of the night. This time, his legs had stopped supporting his own weight, and even after two months in hospital it was determined he couldn't go home.Thus began the aged care journey. Honestly, this stuff is nightmarish in it's complexity and juggling Centrelink paperwork on top of this is what Dante based the nine circles of hell on. Thank goodness for the kindness of a good financial advisor who specialises in this area.
Peter's dad stablised for a while. We presume it was because he was being made to take his medication at the right time of day and being fed three square meals. As unhappy as he was with his loss of autonomy, and the meals, friends continued to visit him. But again, over time Peter noticed his dad's cognition was changing. He seemed more confused and unable to retain information. This meant being asked the same questions repeatedly. We noticed the difference on the days between dialysis that his speech was slurred. This, with the increasing confusion had Peter describing talking to his dad as something akin to chatting to a drunk dimentia patient. Then in December last year we noticed it getting worse. Delerium and hallucination was now in the mix. With this came comments about money missing from his accounts, asking Peter why he'd bought a new car and broken up with me. Apparently Peter had also moved back to regional Victoria but wasn't visiting his dad. None of this was true, but on lucid days he justified his acusations by saying he heard the nurses talking about someone called Peter or heard someone with Peter's voice outside his room. When I spoke to Peter's dad on the phone, trying to explain the impact this was having on Peter, his dad swung it around so it felt like a perfectly normal reaction, and I felt gaslit! It really is hard to reason with someone when they're in this headspace. The sad thing was that although we've put ourselves in Peter's dads shoes since he was widowed, we never truly felt like he understood the impact this had on Peter. He'd essentially given up two years of his life to support his dad by navigating both the admin and emotional complexity this situation presented.
Over the last few years the main topic we pondered was agency in dying. Peter's mum died over eight years ago, and while sick in hospital she determined the treatment gave her little quality of life. The medication made her drowsy and confused. She decided to stop and lived for three months but was able to feel more like herself during that time. Similarly, Peter's dad has always had agency. If he stops dialysis he would die, and although he threatened this many times, he never followed through. This continued threat was another layer of stress for Peter, wondering if this was the moment he'd need to drop and run to regional Victoria. His dad seemed stuck in his unhappiness of not being able to walk or do things he liked doing (driving in the country, fishing, having a beer with friends). But on he struggled, declining in health. I once said to Peter, 'it's like he doesn't know how to die'.
I guess I wondered how I would be in his dad's situation. Would I reconcile how my life had turned out with how I'd hoped it would. Would I face the weird and scary unknown next step calmly or would I fight it? I'm not religious. I don't really believe in an after life. I like the thought that we 'live on' through memory and in the hearts of people we love. I've also jokingly said that life is tiring and can at times feel relentless. So perhaps my Gen X idea of heaven is that we get to stop. We step off the hampster wheel of life and get to have a long, long rest. But what do I know? I guess we'll all find out one day. But I do feel lucky, as I've got a rock solid loving relationship, dear friends and wonderful people around me. If I was to die I'd be bummed that I didn't get to travel more, but I'd be greatful for the relatioships I have...and my cats.
But this brings us back to Peter's dad. A couple of weeks ago he was hit hard by a virus. He went to hospital and then to another hosptial for emergency dialysis. He'd missed a couple of sessions due to the virus. He spent time in ICU. Doctor's spoke to Peter about the likelihood of recovery from the missed sessions. And his dad spoke to Peter on the phone simultanioulsy saying he was tired and had had enough, but also that he'd need money to get his teeth fixed and new hearing aids (he never wore the old ones!). Peter jumped on a train and went to visit him. Back at the local hospital there were discussions with doctors, kidney specialists and his dad. It was time for palliative care.
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A patchwork quilt and heart made by volunteers for palliative care patients. We were gifted both of these. |
Chatting to a work friend, she spoke of her grand dad. Being widowed for many years he had a health scare with made him fearful of living on his own. He moved into aged care, being a keen gardener he created and cared for extensive vegie gardens which in turn supplied produce to the kitchen! He went on activities and trips organised by the home, made friends and remained active. The one day he died peacefully in his sleep. Bam. A good dealth, right there.
Last week Peter and I sat for hours each day in a room watching his dad. He could no longer speak and was on pain medication which made him sleep. We played music he liked and chatted and reminisced between ourselves. He seemed a little worse each day. The nursing staff at his aged care home were incredible, and checked on us as much as they did on Peter's dad. On Wednesday things seemed different. His breathing worse with what we later figured out was the 'death rattle'. The nursing staff looked more worried and after visiting for somewhere between 4-5 hours that day we went back to our accomodation. We sat stressed and waited for the call. It came at 9.55pm. His dad had died.
Driving home two days later, I said to Peter how the immediate pressure of the stress has gone, but I can now feel the weight of the worry we've been carrying for years. Peter looked at me, saying it described exactly how he felt. While Peter plans the funeral the main struggle is dealing with the overwhelming exhaustion. We're finally sleeping a little better, but have no energy. We're still going one foot in front of the other, and Peter still has a funeral to plan and more admin to do.
But after the last few years being focussed on someone else's life and health, I look forward to a time when Peter can make himself the priority and enjoy things he loves. In essence his dad's death finally releases him to focus on his own life.
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Sunset and starlight. Views from our accomodation. |
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