Jean Kittson shares her heartbreak over losing both parents

As many of you will already know, I have been the primary carer of my mother and father for at least fifteen years. The last ten of which have been particularly demanding.

When I say ‘demanding’, it is not because mum and dad were demanding, only that their needs increased as they aged. Many of you will have experience of this.

Losing both parents

Mum and dad recently died. Dad died on the 4th March, and mum, a month later on 4th April. They say longtime couples often die close to each other. The one left dies of a broken heart. In mum’s case I think she died so she could tick dad off as soon as possible for dying before she did. She was so angry when he died. She was 99 and he was 96, her toy boy Roy, and she had always thought she would go first.

Deep down, I think mum expressed her shock at dad’s death with anger, to save us all from her overwhelming grief. She was an incredibly strong woman.

As their daughter I am bereft, and the grief is still raw and sometimes overwhelming.

As their carer I am in a worse state. I feel sick. I feel I let them down at the end of their lives. That I stumbled at the final hurdle.  My efforts had always been to ensure that the end of their lives would be at home in their own bed, surrounded by family, and their deaths would be pain free and in peace.

I had imagined a palliative care expert on hand to help manage any physical or existential distress and to help the family tend to mum and dad in the best way possible. I had made sure the local Pal Care team had met mum and dad so that when the time came, they would know us.

Mum and dad did not want to ‘rage, rage against the dying of light’ as Dylan Thomas extolled, but to pass gently into the night.

With careful planning I always thought that was what would happen.

Instead, both their deaths were chaotic and traumatic.

Unbearable grief

As a carer, not being able to provide the end of life they wanted and deserved is my nightmare and makes grief almost unbearable at times because it has a generous side serving of guilt.

In fact, if I had taken notice of my own book perhaps much of the trauma could have been avoided. Because the problem started with the emergency respite that they were supposed to be in for two weeks. Instead, within 10 days dad was dead and within the next four weeks mum had also died.

In my book, choosing the right residential aged care for your loved one takes time and research, and there are about 160 questions in the back of the book, that you want answered before you decide.

But because we only needed respite for two weeks, I didn’t do that. I did ask about palliative care, but I didn’t ask for details.

Consequently, when they said “yes” they had ‘pal care’ I accepted that. In fact, they don’t.

They have 24 hour Registered Nurses (RN) and I thought ‘good’.

They have a resident doctor, tick.

An unforeseen crisis

But when a crisis happened, I found the RN’s seemingly had no protocols in place to enable them to make independent decisions about timely assistance.

Also the residence had only one doctor to tend to the medical needs of at least 70 residents and that when he was away, for 9 days over the Easter break, the supposed medical back up did not exist.

My father and mother are examples of the devastating inadequacies, inefficiencies and incompetence that still plague our residential aged care and that compassionate and skilled care is often missing at the end of life when we – the dying and their families – need it most.

I won’t go into the details of my parents’ distressing deaths, but both died in hospital, and I do blame the residential aged facility and I am going to make formal complaints.

Hospital for my father at least provided pain relief as he had an acute and catastrophic event.

But a hospital ward for my mother, was not a good place to die. The local hospital has palliative care beds but not enough for the demand.

In the past two months, apart from my parents dying, I did a fundraiser for Katie Rose Cottage in Noosa, which is the best model of palliative care I have ever seen. It is a beautiful home set in wonderful gardens. There are only three beds at the moment. It is run by the community. It has 270 registered volunteers and there are 50 volunteers a week who work on the garden or bake or do whatever families need. There are beds for families to be able to stay with their loved ones. There is a BBQ area and a very comfortable lounge and a well-equipped kitchen (I am sounding like an ad for Airbnb). They have had 21sts there and weddings- all to bring happiness and peace to the people who are dying. The medical care is exemplary. They have 24/7 palliative care specialists and access to three doctors for three beds.

The average stay is 5-10 days, and they provide care for about (150) people a year. Recently they have asked the government to fund two more beds. The government will save money because the extremely high-cost beds in hospital will not be taken by people dying. Like my mother. Hospitals are not set up to help people die.

Not only was the dying not what I expected but neither were the funerals.

Mum and dad had apparently mentioned quite a few different versions of what they wanted depending on who was asking.

Turning off the machine

Mum had often talked about her end of life so that was all clear. She always said, “Jean, in case I don’t die but I just lie there like a vegetable, and I really feel I will, I want you to turn off the machine. Promise me you will just turn it off.” Firstly, this would have more force except that she’s been saying it since she was forty.  I now realise it was probably menopause. And secondly, I am not even sure which machine she had in mind. Possibly the iron.

But with regard to funerals, we realised too late, that we hadn’t ever nailed it down.

I thought my dad wanted to be buried as a catholic in consecrated grounds. But then I remember him saying if mum was being cremated, he wanted to be cremated too.

Mum had said she wanted her ashes scattered at sea followed by a lone piper, who presumably would have to swim back to shore. Luckily, she didn’t have a thing for brass bands.

Their funerals both took place in a serene, green bushland chapel. It is a good place.

Three top tips

So from my recent experiences, I have three top tips.

1. Ask all the questions of residential aged care (see my book) even if it’s just for respite.

• Spend a lovely day planning funerals. It could be fun. You could all plan your funerals together.

• As a carer, don’t forget to share the good times.

At the funeral the grandchildren made beautiful speeches about the wonderful, meaningful conversations and memories and stories they had shared with mum and dad. The love and companionship they had felt being with them.

And I realised that the last ten years for me was about tending to their needs and making sure there was nothing alive in their fridge. Even when we had celebrations, I was busy organizing them, never simply chilling out and enjoying the fun.

I am sorry I didn’t take more time to simply enjoy each other. Sorry I didn’t go through your stamp collection dad, and all the work you did on the family ancestry. Sorry I didn’t read you stories and poems mum.

But I am so grateful you both hung in there for so long that your grandchildren learnt so much from your example of resilience and courage, and had the long and warm embrace of your endless, unconditional love and attention.

About Jean Kittson

Jean Kittson AM is an Australian performer, writer and comedian in theatre and print, on radio and television. Read more of Jean Kittson’s articles for Australian Carers Guide here.