Debbie Garratt

Writer-Counselor-Wellbeing Coach

Page 2 of 65

So good, I’m dangerous

"So good, I'm dangerous"

These were my dad's last words on 16 February, 2024, the day he died. He'd been laying in bed unresponsive for almost 24 hours by this time. We had all gathered around him, myself, mum, my husband, his grandchildren and even great grandchildren. Wandering in and out, sharing memories, talking to him, laughing and holding back tears as we knew the end was finally coming after a long illness.

At this point I was kneeling on the bed and trying to straighten Dad up a little when he opened his eyes and looked at me. I asked 'Are you okay Dad, are you good?"

"So good I'm dangerous" he said with a twinkle in his eye, then he fell back to sleep.

Only a few hours later surrounded by people who loved him, both in the room and via FaceTime, he took his final breaths and left us. I'd had the privilege of he and mum moving into my home 9 months prior so that I could help them navigate what we thought would be his final weeks.

Instead of only weeks, Dad lived long enough to celebrate he and mum's 60th Wedding Anniversary, Christmas with all the grandchildren and great grandchildren, and then Mum's birthday only 2 days before he died.

He was 79, and had been in love with my mum since he was 17. They married when they were just 16 and 18 and I was born when they were 17 and 19. They had two children and Dad went to war in Vietnam when I was 6 years old. He suffered serious mental health battles and finally overcame them in his 70's. He and Mum have amazing, connected and loving relationships with all of their grandchildren, most of whom described him as tough but funny. It has been interesting to get to know more of who he was as a man through other people's eyes over these months. In many ways it adds to my sense of loss.

This photo of him at only 37, holding my 6 week old daughter, is how I best remember him.

For various reasons he had no funeral but we gathered a few weeks later to spread his ashes. I held the remnants of his body in my hands and felt the greatest loss. It comes in waves now as I think about so much of the hardship of his life as he battled mental illness and how that illness caused an abyss between us for so very long. The grief is also for how wonderfully healing and loving those last months were as my Dad gave me many healing words and reassured me.. convinced me.. of his love for me.

It was an honour to care for him. I still wonder if I did enough. Today Mum was sorting some of his clothing and as I held a shirt, I thought about how this is a shirt a person was wearing. A person. A person whose body isn't even in this world anymore and I can't comprehend it. What is left when the person leaves but the rest of us... to remember them and to live on with a renewed sense of what is important. That's certainly the case for me.

While acknowledging I am still in a time of grieving, I also believe my priorities have shifted hugely over these months. When all is said and done, you take nothing with you when you die. You leave memories. You leave people. The only thing that matters anymore are those people and how you impacted or influenced them. How you loved them and how they loved you.

We can only ever hope it is enough.

Outrageously dangerous

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'...

Yes.. '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.

Stuck in the Well

Many years ago I suffered what at the time was labelled a severe depression. I'd been a single mum for a long time and was juggling work and study and feeling a failure everywhere I turned. I accepted that my brain chemistry was simply 'wrong' or 'unbalanced' and spent some years on an anti-depressant that gave me what I thought of as stability for a while until I realised it was mainly a feeling of numbness. A feeling of no feeling.. not sad any longer, which suited those around me but also not happy. I achieved lots, ticked all the boxes but I didn't feel anything.

When I asked questions about this I was told that this is how 'normal' people do feel.. that being really sad or really happy isn't normal or necessary and that clearly my medication was working because look how well I was just getting on with things.

More medications were suggested as clearly my dissatisfaction was just another facet of abnormality. I could have chosen that path I suppose. I'm glad I didn't.

What I did learn over the ensuing decades is that I'm prone to sadness for no particular reason. I feel most things very deeply and I likely spend way too much time trying to analyse and steep myself in it all in order to understand it and that is okay. The world needs people to do this just as much as it needs people to be innately cheerful and bring constant sparks of joy. The latter seem more acceptable in many ways as they don't make us confront the challenges or difficulties or sadder things we may not want to face or feel.

What I've discovered over years of working with clients and with professionals who work with clients is that the sense of having something wrong with them is often more damaging than the feelings they experience. The look in someone's eye when they hear you say 'that seems perfectly normal to me' is unmistakable. A sense of hope, of acceptance and a different possibility for the future all rolled into one.

For those still struggling at the bottom of the well it can seem insurmountable and with no way out. The way in which our society views this experience as 'wrong', 'abnormal' 'in need of fixing' doesn't help.

It is normal to have deep and ongoing feelings in many situations, especially when grieving or even just facing a changed and uncertain world. We expect people to respond differently, to 'get over' things when this can feel impossible.

Many cultures do this much better than others.. allowing time for grief, nurturing and maintaining connections to those grieving.

I strongly believe that if we can work on 3 strategies for people who are struggling we can move people closer to where they want to be:

  1. Name it... grief, melancholy, sadness, confusion, loneliness etc

2. Normalise.. who says we should only feel certain things in certain ways for set times? The more we tell people their feelings are abnormal, the more people go inward, and hide them and feel ashamed of them and find no way back.

3. Nurture... gather around those who are in the Well of sadness... don't abandon them. Let them have their journey in the grief or sadness without forcing them through or back too soon. Stay connected, keep loving, let them know you are here and they can find their way back and you will care for them in the meantime.

This latter one takes time and commitment and compassion... our medicalised approach to emotional health is quicker.. give them a pill. It is a temporary numbing.. not a fixer.

Our greatest strengths come from embracing the vulnerability and being willing to sit in it. However in order to truly experience it, we need to know we are safe, that there are others in our world taking care of the essentials and of us. This is a new kind of connection we have an opportunity to build into our relationships and communities: one which honours our humanity in all its parts.

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