Nursing Memory Notebook Pdf 75
Pamula Harrison
Four days ago, I unwrapped my new 2024 diary. It is a crisp navy blue, unlike my 2023 diary, which is more of a teal colour. Normally I love this moment, the experience of new stationary, the untouched nature of a new diary, the empty pages, the potential. However, this year is different. I only realise this as I pull the thin plastic from the diary. I am entering a time when there will be no elements of Neve in my diary.
I call it my diary, though it is officially called a weekly notebook diary/planner, which is also accurate. My diaries normally swell with our life, with playdates, lessons, plans, planned time of no plans; everything is here. The left side has the week to view, the right side is blank and lined, a notebook, ready for to do lists, meal plans, shopping lists, reminders, recipes, ideas, sketches. This is the sole place where everything in my life ends up.
To be clear, there is also a digital calendar in my life, multiple ones in fact. However, I regularly transfer and transcribe events and appointments to my paper diary. This feels like the heart of my world, even more so since grief has brought memory issues and brain fog. If it is not in my diary, I may not remember it. Digital calendars are brilliant but, for me, there is nothing like writing by hand, crossing out by hand, thinking and planning, by hand.
When the pandemic began, in early 2020, it thrashed through all of the usual timetables and plans; new schedules and to do lists were required. My diary, like so many others, metamorphosed into an attempt at balancing schooling at home, education, entertainment, work and lockdown life.
The last few diary appointments in this phase of life would have been an MRI appointment in mid November 2020, with a followup appointment a week later. My diary did contain many more months of oncology appointments, chemotherapy treatments and MRIs but this followup appointment was destined to be another turning point. I imagine another gap, as our world caved in again. Or possibly it just caved in even more deeply.
Once again, it was time to cross things out and shift our focus. All upcoming cancer treatment appointments were struck through. There was no hope of a cure. Filling a diary with painful, traumatic testing and treatments, which caused Neve to suffer, was no longer the right thing for her.
Another gap as our world shifted, as time stood still, at least initially. Then, before long, a crossing out of the May nurse and carer shifts and visits. The addition of removal of bed hoist, collection of bed, agency visit to collect documents. Neve related activities were gradually replaced with things that had been important yet impossible, while she was alive. Things such as activities with my other children, running, doing the school run regularly.
As 2023 progressed, there were fewer and fewer mentions of Neve in my diary. Some Neve related activities; involvement in palliative care research, a few speaking events (about Neve), bereavement support for me, a visit to the stonemasons. Days go by without her name appearing.
Normally unwrapping my new diary is a time of pure anticipation, of looking ahead with hope, of the smell and feel of a new diary. Yet this year is so much more complex, as I ponder moving ahead into 2024 without Neve.
Neve had asked to put the sticker at the foot of the bed, where she would be able to see it. A carer had reassured me that this bed, lent to us by the NHS, would be thoroughly cleaned when we were done with it, so affixing a sticker was a fine plan. Even then, I understood that we would only be done with this bed when Neve died. The sticker, an image of a typewriter and a Jack Kerouac quote, lived there for many months, if not longer.
However, the sticker reminded me of Neve and the quote seemed apt. From May to December 2023, it resided on the cover of my 2023 diary. Now, it has moved to my 2024 diary. A bit of Neve to bring into 2024.
Throughout her life, Neve was an animated, dynamic and flourishing part of my diaries. Twelve of them, in fact. I save them all; I could go back and look at them. For now though, I will surmise. I suppose the early ones in her life would have included visits to the health visitor and to baby groups. Though really, as a third baby, Neve mostly just came along with us. So it\u2019s more likely that those diaries included toddler groups and school activities for her big sisters. In time, there would have been a shift towards work and childcare, and then onwards to preschool and then school. There were swimming lessons and piano lessons, playdates and park visits. The diaries were full enough, there were always meals to plan and shopping to be done. Life was not without its complexities but Neve was interwoven through it all.
By June, there were new notations in the pages of my 2020 diary. Headaches, fevers, lethargy and more sleep than usual. Then a blood test appointment. Followed swiftly by a GP telephone appointment, during which I jotted down the blood results in my diary. Nothing dramatic but something wasn\u2019t quite right. Did I put the subsequent A&E visit into my diary? Probably not. It was too sudden. Blood results combined with ongoing symptoms. I finished my work meeting, collected Neve from school and off we went. Writing it down would not have been my priority, when it was clear that A&E was where Neve needed to be. Not written down, as I don\u2019t use my diary like this, but I recall the unease and apprehension.
Then there was probably a gap, as our world caved in around us. I wonder whether I initially bothered to cross out everything that was no longer a reality? Did I mark down Neve Major Neurosurgery? This wasn\u2019t really the kind of thing that I had experience of scheduling in.
It wasn\u2019t long before it became clear that I needed a dedicated Neve notebook, that jotting everything into my regular diary was no longer realistic. For the next few years, my diary was joined by a companion, completely dedicated to Neve and her complex needs. Oddly, this Neve notebook feels precious to me; a record of a large fragment of Neve\u2019s life.
And yet, despite this dedicated notebook, Neve also remained a part of my regular diary. It would not have been long before I found my feet again and returned to my diary. Life was not stopping. In fact, it was about to get a lot more complicated; organisation and therefore my diary were necessities. It was time to cross off all work related activities for the foreseeable future. These were replaced by medical appointments, oncology visits, psychology assessments, radiotherapy planning sessions, daily radiotherapy appointments, weekly bloody tests, visits to our hospice, time in hospital and as much time in school as was manageable. Neve, and therefore I, had a full schedule of active cancer treatment. I have no doubt that a sense of clarity and organisation was my brain\u2019s attempt at feeling some element of control, in this devastating new world that we were inhabiting.
In time, my diary would once again have been replenished with new Neve related activities, with a focus on quality of life and the precious time that she had left. Visits from Neve\u2019s teaching assistant and her teachers, from her friends. Carer visits, nursing shifts, initially infrequent, but increasing over time, as Neve\u2019s needs increased. Hospice visits were not always reflected in my diary, as they tended to be last minute, in response to suffering and symptoms that needed palliative care support. Possibly I added them in hindsight; the record of activities is almost as useful as knowing what is coming.
By 2023, the diary would have been feeling fuller, we were lucky that Neve was generally very well supported. Most days there was help; increasingly, the days were filled with multiple visits and shifts. Carer, nurse, carer again, overnight care shift and repeat. Visits from the occupational therapist, from the physiotherapist, from the podiatrist, phone calls with speech language therapists, visits from the NHS community nurses, the hospice doctors and nurses, the play specialist, the hospital school teacher, social worker visits, meetings with Continuing Care, with nursing agencies, visits from Neve\u2019s friends. Life may have felt isolated but it was also busy and full of good people, who brought knowledge, wisdom, funding and joy.
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