You know, there really aren’t too many certainties in life. We can have ideas about whom we would like as a life partner, what sort of wedding we want, how many children we want, what they will be like, what career path we want to follow, how we want to spend our retirement, etc. The truth is that there is really only one event which is absolutely certain to happen and that’s the ending of our life here on this small blue planet. We know we will die one day.
It makes a great deal of sense to start talking to those we love about our feelings, wishes and values when it comes to our end-of-life journey because it’s quite likely our loved ones will be the people who will be guiding us through this event.
When my beautiful young husband was diagnosed with young onset Alzheimer’s disease, I was aware that this is a terminal illness and that the prognosis for young onset is classically a relatively short period from diagnosis to death. For this reason, even though my husband was in reasonable health at the time, we had the conversation about the sorts of things that we did and didn’t want to happen for either of us in our end-of-life journey, whenever that might happen.
I completed an Advance Care Plan for each of us, where we indicated that we didn’t want invasive or extraordinary treatments which would only prolong life for a short time and which in all likelihood would not contribute to our quality of life. These included intravenous antibiotics (should it be impossible to administer these orally) CPR and tube feeding.
In February 2016, a fall resulted in Graham’s being unable to resume walking; this meant that he was either in bed or in a bean chair for most of his waking hours. At this point he still seemed to be physically “well”, although becoming more frail, so it was time to have a conference with management to set up Graham’s palliative care plan. There were quite a number of areas of his care which needed to be documented, such as skin integrity and fluid consumption. However, with absolutely no indication of how long this palliative stage would be or which organ failure would cause his death, there needed to be the additional questions about what action should be taken in a crisis.
In addition to the no-invasive-treatment instructions, I wanted Graham to be able to die “at home”, so I said I didn’t want him moved to hospital unless there was an emergency situation which could not safely be managed by nursing home staff. I wanted Graham to be in an environment which was familiar; the hospital environment for someone with late stage dementia is a nightmare of noise and light and painful handling or treatment.
The next few months saw Graham resume the ability to walk; however, at the end of August 2016, he again fell and, having broken his kneecap, the resultant confinement to bed was to prove permanent.
On October 19, I received a phone call from a doctor who had been called in out-of-hours to attend to Graham. Her first statement was that she had read his Advance Care Plan; he had contracted asphyxiation pneumonia and she wanted to know whether I wanted her to abide by Graham’s wishes regarding no intravenous antibiotics. Even though the news wasn’t good, I was extremely encouraged that someone had read Graham’s instructions (the first time anyone outside of the nursing home had done this). I told the doctor, yes, that was what Graham wanted and I would honour his wishes. Her comment was that treatment only had an expected 50% success rate anyway; it’s also apparent that the chances of recurrence were very high.
The next few days were very full, with all sorts of emotions filling the room as our family came to be with Graham in this, his final journey. Nursing home staff bent over backwards to care for us all as we surrounded Graham with love and tears and laughter and music. We even had our little 3-month-old granddaughter in the room much of the time – a great delight and a distraction. We constantly monitored Graham’s signs of wellbeing or distress and worked with staff to ensure that whatever comfort and help he could be given was available, even so far as saying “don’t turn him now – he’s seeming to be comfortable and we don’t want to disturb that comfort”.
On different nights, some family members were able to sleep in a downstairs lounge room; I spent alternate nights in the room with Graham, sleeping on the bed beside him. I will never forget the love expressed by a night nurse as she brought a blanket and tucked me in: expressions of love and compassion like this are a healing balm at a time when there is so much emotional pain.
At 3.38am on Wednesday 26 October, just 5 minutes before I arrived back at the nursing home, the beautiful night staff were sponging Graham when they noticed that he simply hadn’t taken that next breath: he had slipped away. My prayer had been that I could be with Graham as he died, but I had asked God that if I couldn’t be there, would He make sure that Graham wasn’t alone – and He did!
I believe I was given a huge gift in that when Graham’s end-of-life journey was completed, I was able to say “we did that well” – and I include in this everyone who had a part to play in those last days.
I can’t put into words how great an emotional healing can begin, if we get the chance to honour our loved one’s wishes as we see them through to the end of their life.
For more information on Advance Care Planning, go to https://www.advancecareplanning.org.au/