The current state of our healthcare system is not just lacking or in need of a boost, it is outrageously and unforgivably dangerous and cruel. While I recognise that many services are stretched (why is that exactly?), the lack of support my family has received over the past 9 months of caring for my Dad is shocking.
Dad died on 16th February 2024, surrounded by his family at home, being loved and prayed for and missed before he took his last breath. This was only possible because of our sheer determination to honour his request not to return to hospital and mine and my husband's knowledge of the system having been in healthcare for 25 years. Even with our knowledge and experience, advocating for Dad's and our needs and trying to get support was an uphill battle that none of us should have had to navigate at an already very challenging time.
While I may write in more detail about our experiences even these few highlights should be a wake up call to any person relying on healthcare to meet even the most basic of their needs.
In May 2023 Dad was taken to hospital by ambulance unable to breathe and found to have a CO2 level of more than 120, life threateningly high. The ten days he spent in hospital were so traumatic for him and for us that I can barely comprehend the total lack of regard displayed by so many. At one point I was trying to explain to one of the nurses charged with Dad's care that his anxiety was not just breathing related but also due to his long history of PTSD and his inability to understand anything the staff were saying through their masks. As she began to talk over me, I said that what I had to tell her was important and she said 'whatever'...
I could barely believe it. I asked her what she said and she refused to repeat it saying 'look, just move on and say what you want to say'. I did this, then later asked for her name and listened to her 'it's very stressful here you know.. we all worked through Covid'.
Well you know what young nurse? My Dad fought in a war. I also worked through Covid. The entire country lived through it and you think that's an excuse to 'whatever' me? We were then handed over as 'the family who refuse to mask'.
Sadly this was not the worst experience we had. Mum and I spent as much time as we could at the hospital with Dad and every visit except one I had to chase up his medications and we waited 2 hours for the buzzer to be responded to at one point. (I medicated Dad while waiting)
One single time, one nurse listened to me tell her that Dad needed his medication on time or his anxiety would escalate and that made his breathing worse. She listened. She empathised. She got the medication.. on time.
One evening we arrived to see Dad and from 30 metres down the corridor I could see him in a room sitting in a chair with only a hospital gown on, barely covering him. I ran up that corridor. He was shivering and upset. He had no buzzer. He didn't know how long he'd been out of bed. He couldn't call out. We pushed the buzzer and got him back into bed only to have the nurse berate us for doing so as we might not have been safe.
We might not have been safe! My Dad could have died in that chair and been there for hours before any of them noticed.
It was a relief to bring him home even though we were told he likely had weeks to live and his next 'event' would be his last as he had end stage COPD. We linked into palliative care and it still took a week to get even some of the basic things we needed. Dad had major continence issues and we were up several times every night. He was out of breath every time he moved and it really was a nightmare time.
A week after getting home we were provided supportive services in the form of assistance with showering 3 times a week. This was a service provided through Dad's entitlement as a Vietnam Vet. Over the course of the first few weeks we rarely saw the same person twice. Dad had freezing cold water sprayed over him in the shower several times. He almost fell twice because the support person failed to support him. Staff would ask us what to do and how to do it as though they had never showered a person before. It was awful. He began requiring a sedative when he knew it was shower day because it was so stressful for him. We kept the service because there was only so much we could do as a family and we had the very occasional person who actually cared. Only very recently were we advised that Dad was in fact unwell enough that we could access professional nursing care through a private agency to come and shower him. This service was much more caring and proficient.
As the weeks went on and he didn't deteriorate, palliative care decided that he was no longer suitable for their system. This was pretty stressful for me as I knew that when Dad deteriorated it would be very quick and I wasn't sure how we would manage. This was also surprising given that palliative care market themselves as providing supportive symptom management not just 'end of life' care.
When Dad had his first event, it was pretty confronting. Fortunately my husband teaches life support and is required to have oxygen for this purpose and we were able to use that otherwise not only would Dad have absolutely died that night, but he would have done so in a terrible way.
I tried again to get us onto the palliative care books and they refused as they didn't deem him sick enough. After that event we liaised with the GP to ensure we had appropriate drugs to support Dad through another event and we and he endured several of these over the ensuing months. Every time I believed it could be his last and every time he rallied.
While my husband and I had made sure there was always one of us here with my parents, after this first event I only left the house for necessities and even then constantly watched my phone as when Dad deteriorated it was always very sudden.
During these months Mum and Dad celebrated their 60th wedding anniversary surrounded by grandchildren and great grandchildren, then Christmas and finally my mum's birthday before his final event beginning the next morning. By this time we had managed to find a GP we could liase with for prescription medication however the trouble didn't end there as we found ourselves urgently needing an additional medication for a sudden exacerbation of fluid in Dad's lungs.
Getting past reception was not possible by phone so my husband did what only a very good and bold man would do and walked straight into the GPs consulting room and said 'Jim is dying today. We need X, it's an emergency.'
We got the script and the medication and the GP said they will review their procedures to ensure such an emergency was passed on in future, however I'm left wondering how awful things would have become if not for my husband's actions.
My Dad died peacefully, in the way he wanted to, with people who loved him. On reflection we really had very little support and I've been very surprised that we've also had NO follow up. I advised District Nurses who had phoned us once a week that he died and was barely acknowledged. I received a lovely email from the private nursing agency. We navigated who to notify and how to do it on our own.
What do other people do? The only option would be to leave a loved one to inadequate and sometimes incompetent care in a hospital. If we had left Dad in a hospital he would have died months earlier, alone in a bed struggling to breath and either unable to push a buzzer or with nobody responding. The thought is terrifying.
There is nothing okay about any of this. It shouldn't happen. I've nursed other family members and navigating healthcare systems has always had its challenges but this was by far the worst. Would I do it again? That's easy. I would NEVER allow a person I loved to die alone, uncared for, with cries for help ignored in a hospital bed. I recognise that many may feel they have no option and for that reason we must do something to change the system.
It's been hard, and cruel and a privilege and an honour and terrifying and fulfilling and gut wrenchingly sad and full of blessings. It has been very single thing.
It should never have been made so much more difficult by a cruelly failed healthcare system.