The first week of becoming and transitioning into being a palliative carer for a dying parent was a little bit like being blindfolded on a mine-fielded beach at Dunkirk during a pandemic. I am utterly amazed that there are absolutely zero options for any kind of carer focussed services that assist and support in the transitioning of a carer going from regular based caring into dying at home palliative caring. Nothing. The DWP however have made their bureaucratic presence felt with the Carers Allowance team in Wolverhampton sending me a questionnaire asking me of the exact timings of my mother’s leave from home into hospital admission and for exactly how long which I duly returned in the second class brown envelope that was supplied.
The Bristol Royal Infirmary used to have a carer liaison so that carers and the people that they care for could be assisted during what is essentially a traumatic and difficult time. I emailed the carer liaison email address on the 3rd of June only to get an automated reply; “Due to temporary staff changes within the hospital carers liaison team please refer all carers for support through our Carers Line service.” Being redirected to a website and a form filling exercise is somewhat depressing and completely soul destroying. Fortunately however I am a force of nature and as tenacious as a heat seeking missile, so these vacuous attempts at being helpful were superseded by my own bloodymindedness and highly disciplined prioritisation skills. I organised myself and managed to stay in touch with all of the various disparate entities responsible for my mother’s care and discharge though one particular nurse writing down the wrong date of discharge on a form that was sent to the discharge unit did actually cause a delay of exactly one day in my mother being able to come home. My words to the nurse underlined my quiet rage that someone had not done their due diligence and carefully checked the calendar; “Time is precious when someone is dying. Every minute, every hour, every day, every week, every month.”
Silicone straws have become one of the outstanding pieces of technology that have enabled me to successfully allow my mother to drink fluids and have some freshly brewed tea. Since the advent of all plastic straws being withdrawn because of environmental issues it is the silicone straw that has saved the day for most carers. I support the careful safeguarding of our environment though some acts of protection have in fact thrown back the ability of carers in the discharge of their duties. I love silicone straws and have become a big fan of these extremely useful items. When someone is dying anything that helps the patient to take in nourishment is always to be welcomed. I do what I can to make my mother’s world as comfortable and as supported as possible. The recent inclusion of a new small 24 inch TV with a Fire Stick for internet access has revolutionised my mother’s days. She is now able to watch her favourite shows while still being connected to the world and enjoying all of the beautiful visions that the natural world has to offer. There was no TV at the hospital whatsoever. Each bed had a TV screen on an arm. None of the TV screens in the hospital worked. No real reason was given as to why they did not work. Only an intermittently active internet service was available for those who were able or physically capable of accessing smartphones and tablets. The cuts that the NHS have suffered over the last 13 years have gutted much that has had life sustaining and enhancing qualities let alone the pay for the very people that run it. Asking my mother how it was for her now she was back in bed at her own home she said; “It’s like a luxury hotel.” The NHS does not need a fifteen year plan. It needs unwavering, committed, unconditional, and wholehearted support that is supported in law and aggressively protected from government, private individuals, and private corporations in perpetuity.
While caring for my mother I have acutely become aware that I am actually watching her slowly die. In Buddhism Maraṇasati (mindfulness of death, death awareness) is a Buddhist meditation practice of remembering and keeping in mind that death can arrive at any time. Buddha extolled the virtues of being diligent for each and every moment. Allegedly an American Buddhist monk had a photo scrapbook he dubbed “The Buddhist Playboy” which was filled with photos of decaying corpses so that he could meditate upon it. Corpse meditation is an integrated part of Buddhism and has its foundations in the Aṅguttara Nikāya, Satipatthana Sutta, and the Kayagata-sati Sutta which has sections on the cemetery contemplations which focus on nine stages of corpse decomposition which are as follows; A corpse that is “swollen, blue and festering.” A corpse that is “being eaten by crows, hawks, vultures, dogs, jackals or by different kinds of worms.” A corpse that is “reduced to a skeleton together with (some) flesh and blood held in by the tendons.” A corpse that is “reduced to a blood-besmeared skeleton without flesh but held in by the tendons.” A corpse that is “reduced to a skeleton held in by the tendons but without flesh and not besmeared with blood.” A corpse that is “reduced to bones gone loose, scattered in all directions.” A corpse that is “reduced to bones, white in colour like a conch.” A corpse that is “reduced to bones more than a year old, heaped together.” A corpse that is “reduced to bones gone rotten and become dust.” Corpse meditation has a purpose. When you see someone you are only beholding the external aspects of that physical person. In fact our insane and torrid obsession with the outer body and all that it entails simply fails to notice that we are indeed made up of organs, bones, liquids and fluids. Being reminded of the true nature of life, the impermanent and transitory nature of our existence is something that we could all take the time to dwell upon and meditate on. Caring for my dying mother has certainly given me a crash course in this philosophic idea. I sincerely hope to be able to continue to supply complete and total care and support while I am also mindful of her slow and gradual disintegration into divine emptiness. Alleviating any pain or discomfort is now the best that I can hope to offer her. Every day I will continue to bring her medication, liquids. sustenance, kindness and many large dollops of good humour. May Buddha protect me while I continue to undertake this considerable responsibility and may my dying mother’s suffering be eased.
Sheer Zed ~ Author • Buddhist Shaman • Musician 