Me ~ “I can’t get in to see Mum unless she is actively dying.”

Phil ~ (housemate), wryly – “Aren’t we all actively dying?”

Two weeks ago, I visited Mum for the first time in eight long weeks. Most of my absence was due to lockdown and all visitors being shut out, except family of a resident considered to be ‘actively dying’. Mum whilst in palliative care, as yet does not meet the criteria of 48 hours out from dying. Omicron marched through the whole facility (rest home, dementia unit and hospital wing), catching the vast majority of staff and residents, leaving them mostly no worse for wear. Mum barely had a runny nose. The facility re-opened but by that stage, I had covid, and while relatively quickly free of symptoms, I needed to wait for a negative RAT. Last week, the rest home dropped the requirement for RAT tests, closed the MASH like tent outside the front door, and opening hours have returned to normal.

Seeing Mum after two months, it is clear she is now approaching the end, and consequently I’m getting my ducks in a row for the end of her life. She would approve of the metaphor. She loved ducks. One year, two ducks waddled up from a nearby creek, everyday, and poked their heads through the cat door of our family home, quacking for bread.               

Recently, our family doctor came to dinner, explicitly to have a conversation about death and dying. Pam, Adam’s Mum, was successfully treated for cancer last year. Brett, Adam’s Dad, had an aortic aneurysm op the week after Pam finished treatment. The dominant culture of the West avoids talking about dying and death, we have a heavily medicalised healthcare system that seeks to prevent it at all cost. My father, who as a general surgeon worked at the coal face in A&E, once said that he believed the great failing of Western medicine was its non-acceptance of death.

None of us get a pass out on this one. Death is a rite for us all, wherever we believe that passage ends.

Paradoxically, the more we’ve talked about dying and death as a family, the more life affirming it seems to be. Brett all but skipped up to the cottage after our ‘death & dying dinner’, saying afterwards that he was on a high. Removing the matter from such taboo territory is enormously reassuring. Having an emerging sense of the questions we can ask, the answers we need, and the rights we have and are almost completely unaware of, provides both clarity and comfort.

Pam and Brett are now in the process of writing their advanced care plans. I didn’t ever have that conversation with Mum, although more often than not, we drove away from the rest home after visiting her mother who had advanced Alzheimers but a remarkably strong heart, and Mum would turn to me and say “For the love of god, don’t let me end up like that.” But she didn’t put her wish in writing, and we never talked discussed specifics. Which means I need to make decisions. Being an only child with full Power of Attorney continues to be generally lonely, but the bright silvery lining is that I don’t have to negotiate the hard stuff with any siblings or other family.

This has been a long and winding road, and I’ve learned…A. Lot. Mum was officially diagnosed with vascular (alcohol induced) dementia in 2009, although in retrospect she was showing signs well before that. I had her cared for at home for six years, firstly by two wonderful women who shared the role as Mum’s ‘companion’ (phrased that way for Mum’s acceptance), then additional women as the role transitioned from companion, cook & driver to a more intensive caregiver role. In April 2015 I moved Mum into dementia care, and from there, five years later, when she could no longer walk without the support of two people holding her up, into the hospital wing. 

Over the last two years, it has been a steady and often heartbreakingly slow decline. Mainly, it would seem – ironically – because she has a strong heart and has continued to eat like a trooper. Not because she really wants the food or needs it, but as an automatic response. You put a spoonful of food up to her mouth, and like a baby bird, she takes it in. When her doctor and I realised, about a year ago, that Mum was being fed breakfast, morning tea, lunch + pudding, afternoon tea, dinner + pudding and nutritionally complete milkshakes in between, we were both horrified. 

The degree of honesty with which the rest home GP and I have talked, his kindness and his willingness to not prolong her life at odds with her wishes, has been a huge relief.  This same doctor gently said to me, as covid took off in the rest home, that it would be a blessing if the virus took her. They would ensure she was kept comfortable but we would let her go. However she was so mildly symptomatic, this obviously didn’t unfold.

Now, regardless of covid, Mum appears to be winding down into her final weeks, possibly a few months, maybe days, it’s hard to tell. She has two small meals a day and is now sometimes declining to eat. Her teeth are fairly grim, she was going to a dentist at the hospital regularly but covid disrupted that, and her gums are very inflamed. Constant clunking of her teeth suggests she’s in pain, and so the doctor prescribed her Pamol last week, but it had little effect and she’s now on half a fentanyl patch. This seems quite a dramatic upping of the ante in terms of pain relief, but the panadol wasn’t touching it and when I drove across to see her yesterday, I was greatly relieved to see that she was in deep sleep, her face devoid of any tension. When I relayed this update to my godmother, a dear friend of Mum’s for 65 years, her response was “Free of tension sounds like everything we would wish for everyone we love.”

Ritual is important to me, and after speaking with several people, including our family doctor, a registered nurse at the rest home, the funeral director and a friend who teaches about end of life care, I am clear that taking things slowly, and using ritual to create a sense of the sacred, will support my grieving process. I’ve begun to light a candle when I’m with Mum. I’ve created a spray with essential oils of lavender, chamomile, sweet orange and eucalyptus which I mist into the room when I arrive. These actions, and other pieces of tiny ceremony, help me land, move more slowly and hold space for my mother.

Not that long ago, before healthcare was this heavily medicalised and funerals were commercialised, the local midwife midwifed the dying. A local carpenter would be asked to make a coffin. Funerals and the wake would be held at home. Over the course of the last several days, I’ve met with a lovely funeral director and she is helping me think through a number of decisions I need to make, about the end and celebration of Mum’s life. 

As I move through these days, I feel as if I have a foot in two worlds – one in the human, very material world full of logistics and practicalities, with respect both to Mum and ordinary day to day life, and another in the sacred and spiritual. This seems to take a considerable amount of my energy. My osteopath told me last week that my heart needs support. It does. I can feel stretching, expansion. Like a vast old theatre, I’m discovering a wing I didn’t know about, full of songs and new stories.

In spite of resembling both Eddie and Patsy from Ab Fab too often for comfort, Mum was at heart a romantic and one of her favourite pieces of poetry was from Dylan Thomas…

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Along with the caring but clearly overstretched staff in the rest home, I am endeavouring to create a space in which Mum isn’t burning or raving. Somewhere neither of us rages against the dying of her light. Instead, I am trying to build a place where the deep comfort of darkness is held in equal measure with both the light that still glows softly in her, and one big and brilliant that maybe illuminates worlds beyond the veil.

I keep asking questions. I keep listening for the answers. 

From experts and elders, from my own heart.

I’ve been sitting with these thoughts, with this piece of writing for the last few days. I hadn’t set out to write a blog post, just some thoughts for a facebook post to share with friends. I’ve been wondering how to conclude. I’m tired, and inspiration for eloquence and good editing is a bit thin on the ground at the moment. Should I inject a bit of black humour? No shortage of it at this end, and Mum more than anyone would be encouraging that. Do I need to, in some sense, apologise for the morbid subject matter? Do I fall back on a much loved piece of poetry? But I think I’m just going to leave it at this and simply say that many of you make up my community…Some I see every day, others every week, most of you more irregularly. But there is a thread of connection with each of you and I’d be very grateful if you’d give it a gentle tug.