This past week I have had a couple of conversations which though significantly unconnected have in my mind touched and influenced one another. One had to do with reaction to a television advert from the Alzheimer Society, the second a conversation with a Filippino care worker who is preparing to celebrate Black Saturday today.

The Long Goodbye is a very emotional television advert with a voice over by the actor Colin Firth which shows a son delivering a eulogy at his mother’s funeral and recalling the many moments in his mother’s dementia experience where a part of her ‘died’ ‘again and again’.

The advert created by the Alzheimer Society has resulted in a wide debate on social media and amongst dementia organisations about its merit and what it says about the lives of those who live with dementia. Many have stated that it diminishes the lives of those with dementia by presenting it as a series of deaths and losses.

The CEO of the Alzheimer Society, Kate Lee in response to the ‘backlash’ commented:

“This campaign seeks to tell the unvarnished truth about the devastation caused by dementia and it is very much informed by people affected by the condition.

The loved ones of people with dementia often describe it as a ‘living grief’ as, bit by bit, the disease’s relentless progression causes part of the person to die…again and again and again.

“But there is hope. Alzheimer’s Society, through its support services, is there for people affected again and again as they face the grim reality of the long goodbye.”

The Alzheimer Society has gone on to argue that the advert was created and made with people who have dementia and their families, that it is seeking to raise awareness of the fact that 900,000 people have dementia and that nearly 80% of respondents to a recent survey weren’t aware that one in three people born in the UK today will get dementia. It argues that ‘Many may find the advert upsetting. But the reality is that dementia is devastating.’ They argue that this campaign is not about fundraising but raising the awareness of wider society that current approaches to dementia cannot go on as they are as we move to a situation where by 2040 1.4 million people will be living with the condition.

This past week I have had several conversations with both individuals who are living with dementia but also their family members and allies and everyone has mentioned the TV campaign. It has led many to feel despair and hurt and indeed shock about the way in which it portrays living with dementia.

Having watched the clip myself part of me can absolutely see what the creators were trying to do and achieve, but a huge part of me cannot but feel this is a massive and damaging misstep by a charity which should be focussed on the affirmation of life regardless of diagnosis.

I know just how upset and hurt people have been and how staff in care homes and in the community have had to speak about these issues with residents and clients.

At the centre of the debate about the advert is the issue of anticipatory grief something I have spoken and written about a great deal. What does it mean and how does it feel to live your life in the knowledge that the disease within you will kill you? How do you as an individual and those who are around you in a company of love and compassion deal with the changes which are happening because of the disease? How do you better support yourself for the act of dying and the work of grieving?

For me there are no easy answers to any of those questions and the way in which I have worked through the loss of a loved one has been and will be different to anyone else. But what has been important for me is that every moment mattered, every conversation counted, and that the preciousness of time became an invaluable gift. Far from my losing a loved becoming a series of long goodbyes I tried (and admittedly didn’t always achieve) to have a sense of every encounter being a new beginning or a hello, an introduction to a new part of the person; a realisation that even in barrenness and hurt there was growth and newness, possibility and promise even in pain and emptiness. That the person I loved was still the person before me, just different, still wanting and reaching out for love and touch, for a renewed sense of being held by my humanity.

I mentioned another conversation I had this week.

This was one I held with a nurse who was working in a care home and who comes from the Philippines. We were chatting about the upcoming holiday weekend, and I asked her what she was planning. She told me that she would be celebrating Easter Sunday but that first she would be recognising Black Saturday which was so important to her, her culture and to many other people from the Philippines.

I discovered from her that Black Saturday was a day of fasting for Catholics in the Philippines and that it commemorated the day that the crucified Jesus lay in his tomb after he had died on Good Friday. It was the day in between deep sadness and celebratory joy. I was told that Black Saturday is a significant day for people in the Philippines. It is recognised in diverse ways including the famous healing rituals in Siquijor where traditional medicines using herbs and roots are created. It is a day of quietness, limited noise, peace and solemnity.

But importantly my partner in conversation said that it is a day when you are meant to spend time thinking about how you are living your life in the face of your own death; how you are healing the relationships which might be fractured or broken; how you are using your voice to speak peace and healing; how you are using your hands to bring solace and purpose. It is an active day of contemplative preparation. It is a central requirement between loss and hope to be open to listening, active in preparation, and instinctive in being with others.

It struck me as she spoke to me and as I reflected later on the real upset caused by the Alzheimer advert that Black Saturday was all about anticipatory grief.

So I will spend some part of this Saturday thinking about how I can better support those who wait upon death. I will do so not thinking that every moment has to be strained of joy and purpose but in honesty being prepared to accept that the tears of living are made with joy and sadness. I will remember those moments when my heart panged with a sense of loss caused by the changes of a look that did not remember me or a memory lost into time, and I will reflect on my truth that despite all the absence that there was an astonishing presence of love and touch, of togetherness and being.

And yes, I will in the days and weeks ahead try to convince others of the importance of being more aware, more committed, more energetic in righting the wrongs of a society that displaces dementia and those who live with the disease, that treats them with financial and care discrimination, one that is so unequal.

I do not and cannot believe that a life facing a dementia death is calculated by a series of losses, but rather I have to and will continue to believe in the immeasurable arithmetic of presence and positivity.

I am reading a lot of Rupi Kaur these days, and this poem ‘funeral’ spoke to me this week, a week of anticipatory grieving for so many.

when i go from this place
dress the porch with garlands
as you would for a wedding my dear
pull the people from their homes
and dance in the streets
when death arrives
like a bride at the aisle
send me off in my brightest clothing
serve ice cream with rose petals to our guests
there’s no reason to cry my dear
i have waited my whole life
for such a beauty to take
my breath away
when i go let it be a celebration
for i have been here
i have lived
i have won at this game called life

[POEM] Funeral by Rupi Kaur : r/Poetry (reddit.com)

Donald Macaskill

Photo by Rebecca Matthews on Unsplash