Now I found out that it was time for palliative care. What did I do?
We knew that our carriage had left the final station on our crazy, cancer roller coaster ride. We knew that we were spoilt because my wife had lived over thirteen years longer than expected. We still wanted more time with her.
My wife was working in public health right up until six months before she died. As she said to me, "What am I going to do at home? Wait and die?" (You have to laugh) 😂
We had already organised all of our Difficult Discussion Topics so it was time to enact them. We were at End of Life stage. Urrgh. I wanted to emotionally vomit, if I knew how to do that. Instead I ate a lot of chocolate and consumed many coffees.
What helped me at this stage was to understand what End of Life meant. Much easier if you read about it before you need to do it. You are at a loss as to what you are going to do as a carer.
We organised a 'trigger word' or a 'trigger event' for my wife and our oncologist to start End of Life process. My wife was obsessed with numbers and data which is what she did for a living. I knew the day she did not want to know the cancer data, was the day that she would stop treatment.
A report came in with how many tumours were in her brain. The oncologist asked my wife if she wanted to know how much cancer was there.
For the first time in all of the twenty six years that I knew my wife, she said to the oncologist, "Do I want to know the actual number of tumours?
The oncologist replied, "No, I don't think so."
"OK. Can I have more chemotherapy?"
"Yes, you can waft a little bit over you however it will only be a small drop in the ocean on these tumours. Is that what you want in this short time?"
I jumped in and said to my wife, "That's enough. You can't do any more. Can we stop?" My wife nodded.
The kind oncologist offered to organise palliative care in the home with the local hospice. It was that easy, that sudden and that heartbreaking all at the same time. We had talked about when to stop treatment and it was today.
Then I resigned from my job. I do not regret it at all. Unfortunately my Mum was dying at the same time, so it ended up being the best thing I could do for my mental health as a carer.
Then my Mum died. My Mum had been ill for over twenty five years and had struggled on. My emotions were overwhelming. The support of our friends was what got me through this time. Their kind texts, messages and offers to catch up and give me timeout from death and palliative care was appreciated.
I stayed at home and organised for my wife's friends to visit her regularly. Palliative care nurses visited my wife and discretely worked around her afternoon teas with her girlfriends, organising her pain medication.
As the cancer spread, my wife ended up having thirty five seizures (from the tumours in her spine) and seven times I needed to call for an ambulance to assist in getting her off the ground and back into bed. The paramedics were awesome and so reassuring. Yes, they made us laugh too.
One day, a kind palliative care nurse, informed me that it was time for some respite for me as a carer. I was physically and emotionally exhausted. She suggested that my wife could spend ten days in the hospice while I looked after my son and got some sleep. Her thoughtful words were, "It's time for you and your son to get ready and prepare for what's next. Let us look after your wife now."
I gently told my wife on Monday that she was going to the hospice on Friday. She was not happy. I reminded her on Tuesday that she was going to the hospice on Friday. She did not remember that i had told her the day before. The same thing happened on Wednesday. That's when I knew dementia had set in for my wife.
So I made the health and treatment decisions for my wife and arranged palliative care in the hospital. On the first day my wife was admitted into the hospice, I instructed the palliative care doctors and nurses not to prolong my wife's life with any machinery. Just relieve her pain I told them.
I then consulted a counsellor about dementia and how our friends and family could assist me to alleviate the distress and confusion my wife was experiencing. The counsellor's wonderful advice was to not mention dates or times of day and agree with anything that my wife said. Seriously, it did alleviate the confusion. My child was instrumental in assisting me with the plan and helping keep Mum calm and happy.
We bought all of her favourite drinks, strawberries, blueberries and yoghurt because that was all she could consume. My late Mum taught me that hospices unfortunately smell like death, so every day we put essential lavender oil drops on all of her clothing and wiped the benches with some oil as well. Lavender oil was my wife's favourite fragrance. It was an uplifting fragrance in the room. We sparsely decorated her room with her child's gifts.
My wife had made beautiful quilts so we bought her favourite one into the hospice so that she would always be extra warm.
I communicated to everyone via text messages and email how we were dealing with it and how they can help us. We scheduled visits so that my wife always had small groups in the morning and small groups in the afternoon.
On a very ordinary day, my child and I had headed out of the hospice for some lunch. A call from the palliative care doctor came through advising me that today was the day my wife would probably die. Could I return to the hospice as soon as possible?
My child and I returned to the hospice. My child had one last visit with Mum and said good- bye. I rang my father and asked him to collect my child and take them home just in case my wife's actual death might give my child haunting memories of Mum. No need for that.
I quickly texted all of the close friends and family members and let them know that they could visit my wife for one last time if they wanted to visit. They all came to be there with her on her last day on earth.
It was quite special in a sad way to see your wife surrounded by all of her friends. There was a lot of love in the room. These were the courageous people who had helped us right up to the end.
My wife was always a prankster and she still managed to play a joke on me right up to her last breath. She made me a couple of friends laugh.
Her death was quite unexpectedly undramatic and very calm, thanks to the palliative care nurses and doctors.