LIVE BY DESIGN | How would you like to be supported at the time of your dying?

Think of deaths you’ve been close to – what were your takeaways?

In Crossing the Creek, a short booklet (free PDF available online), Michael Holmes shares observations he accrued over three decades of working at hospice with end-of-life patients. He notices that when death is in the air (that can be several weeks), people often dream of and/or talk with people from their past who have already died – “I met your father last night in my dream.”

Holmes also noticed that people nearing their end also often “time-travel”. They roam the decades of their lives and re-enact events as though they are happening in real-time.

My mother called me: “Helena, I have such sad news to share with you. Your father just died. He had a heart attack. The doctor came, but it was too late for CPR.”

My father had indeed died in this manner – 23 years earlier. Another significant Holmes’ observation is that when people are dying, they are more comfortable NOT eating and NOT drinking. It is part of the natural process that the body has for shutting down its organs. A side effect of dehydration in these circumstances is known to sometimes cause a sense of “mild euphoria”.

What kind of death do you hope for?

Many of us wish for the fairytale ending to our lives: “passed away peacefully in his/her/their sleep.” Some of us fear that our last days might be in a hospital bed, where no matter how caring the nursing staff are, it’s a place of busyness, lights, voices, the trundling wheels of gurneys, the beep of medical equipment and regular disturbance.

Some of us, on the contrary, hope that we will be hospitalised. We fear that dying at home will place too much of a burden of caregiving on the family, as well as being nervous of handling any medical crisis. Others hope for their last days at home, keenly aware of energy fading and death nearing, with still some windows of time for goodbyes and closure.

Let’s consider the scenario that I call “the slow fade”. What help might you welcome from others at this once-in-a-lifetime experience? These are my thoughts.

Acceptance would be very high on my list. I would need my nearest and dearest to make peace with my imminent departure. And for this acceptance to be shared by any medical staff and caregivers who may be involved. Please do not argue about what further medical interventions might be possible to prolong life – please keep to discussions about comfort care.

Please try to be as calm as possible around me. If there’s a robust discussion to be had – please have it without me. If I time-travel, say things that don’t make sense to you, please don’t criticise – just join in as though you are part of improv theatre.

Please do not insist that I eat and drink things that you think will be “good” for me. It is with some embarrassment that I remember trying to coax my dying husband to eat a poached egg daily, because “You must keep your strength up”. I am sorry that my younger self did not know any better. I think there’s more awareness now that when someone’s dying, their body is shutting down organs, and not wanting to eat or drink are part of nature taking its course.

Please humour me. If I happen to have a sparkly moment and ask for a portion of raspberry pavlova with whipped cream and a glass of bubbles. Please indulge me.

Please treat visitors with care, especially if my energy is low. My Purple File (www.lovelegacydignity.com) has four lists of contact details: Beloved, Friends, Acquaintances/Professional connections, and service providers. The closer I am to dying, it is my beloveds that will matter most.

Please take care of yourselves. It can be physically and emotionally exhausting sitting for days and nights when someone is dying. Create a roster. Take turns. Bring a book. Sleep in the armchair.

Please play my music with tolerance. There’s probably quite a bit of my playlist that’s not to your taste. Silence can also be golden.

Please “decorate”. If I’m spending a lot of time in bed, drifting in and out of sleep, then please “decorate” the space – bring photos, plants, flowers and, if possible, let me see sky.

Please try to make sure the room smells nice. Sometimes the rooms of dying people smell horrible. I hope a diffuser or scented candles won’t make me feel nauseous. Cream my body, moisten my lips – give me ice chips to suck on when my mouth is dry.

Please accept my spiritual preferences.

Please know that I love you, that I hope we have no unresolved issues between us, and if indeed we do, then can we be generous with one another and offer each other forgiveness? This is a time for unconditional love, and sometimes the less said is soonest mended.

Once my last breath has become air, I hope you will feel comfortable enough to sit with me and prepare my body for cremation – it would be wonderful if you’d do that for me.

These are my requests – quite self-centred. I’ve known of dying people who have been magnanimously generous, hugging their children and grandchildren, saying goodbye with a special word for each one. But often, dying people draw inwards, sleep a lot, and don’t talk much.

I’ve taken a first shot at answering the question Mapi asked me: “How would I like to be supported in my dying?” What would you write down as your response to that question?

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