It started with a call from a woman, whose sister was “stuck in palliative care”. We met over coffee at her sister’s husband’s place, in front of the fireplace, to talk about how to get “our beautiful sister home”.
The stress was palpable. Husband exhausted. Sister and extended family desperate to have contact with Mrs F before she died.
You see, Mrs F did not have any children, so she considered all the nieces and nephews to be her children. So much respect spoken about the rules of hospitals to keep everyone safe through COVID, but the overpowering emotion to not have contact was too much.
We hatched a plan to facilitate Mrs F’s discharge home. It took 6 days of convincing the Occupational Therapist and arranging equipment hire needed, but we got there. I can only appreciate how in demand home aid equipment must be right now.
Mr F set about arranging the large sun filled living room to accommodate the hospital bed. Rugs pulled up from the age old floorboards once trod on by orphans of the early 1900’s, for a user friendly equipment surface. There was favorite hand cream and linen spray amongst the personal hygiene bibs and bobs set up on the sideboard, and all things clinical carefully woven into place so as not to depersonalize the space.
Mrs F arrived home late on the Thursday via friendly, non-urgent transport, with assistants taking their time to ensure all went smoothly and without stress. She settled into her air mattress atop hospital bed and new big bedroom space in front of the wood fire, but most importantly, next to Mr F’s recliner chair.
She was all smiles and thank you’s, and with a quick wit, smiled at her husband and quipped “what took you so long!”.
I arrived the next morning, greeted by beaming smiles from Mrs F. It was quickly followed by a cooked egg on toast “just as I like it”, served with warm sourdough and hot tea. Morning routines were quickly established and all along, the unique opportunities to ask Mrs. F “this is your home, your space, how would you like to do this?” were ingrained in all the decision making. Relaxation music created the ‘spa’ experience during the side to side rolling, bed washing, dressing, teeth brushing and relaxed chatter before Mrs F was hoisted out into the big comfy ‘Princess chair’ in readiness for visitors and the like.
Such a sacred time. The privilege to listen while unfiltered fears, questions, ponderings, feelings and memories surfaced. THIS is the magic. To hold the space. For me as a nurse this is ‘WHY’ I get out of bed every day. Every nurse is different. But what underpins it all is the feeling that you make a difference. It feels purposeful. No matter how much time we have in that interaction, it is immeasurable magic.
Masks and hand sanitizer the norm, and COVID negative reassurance amongst all those that visit, Mrs F’s days pass by with family and friends popping in to say hello, but in their hearts, preparing to say goodbye. The multiple nurse visits throughout the day and evening, assessing subtle changes, having conversations with family in anticipation of what’s to come, grounding the space and gamut of emotions, an all important task to harness the focus of the present moment and what is truly important. I feel it is in these moments, the vulnerability and trust in sharing of emotions is deeply respected.
Mr F is looking more and more rested, fully trusting of the expert care in place for the love of his life. There’s many a cuppa chat in the kitchen, gauging where his mind and acceptance is at to judge what conversation follows at times, preparing him for the hoops ahead that will require jumping. The very same conversations are had with close siblings, ensuring facts and honest clinical opinions are shared.
Mrs F’s birthday is fast approaching, only days away now. During our morning ‘spa time’ we discuss outfits, more deep conversation about death and dying, and ongoing talk of experiences of travel, personal interest groups, even the anecdotal memories and husband eye rolling moments!
The day before her Birthday she was as bright as a candle. The spirit and acceptance of what is imminent is apparent. I know that look. I recognize this energy. Call it intuition. She is on a high. She is heading ‘home’, and it’s soon. I message family with photos saying “bright as a button and busting for visitors”. Birthday outfit picked, we even requested lipstick today!
The following day, intuition is confirmed. No longer conscious. Its Mrs F’s Birthday. Her sister arrives with a gourmet birthday breakfast. But she too knows it. This is the beginning of her end of life journey.
And it is spectacular. The day ensued with family visiting, nephew arriving with homemade scones, nips of scotch, gourmet sandwich fingers thoughtfully organised by a niece, helium balloons, laughter, and togetherness. I am in the background, gently overseeing the entire dynamic, having supportive conversations with those that are asking and needing answers and guidance. As late afternoon approaches, Mrs F’s family surrounds her bed, filling this great space in the living room and musters up enough voice projection to join in the chorus of “Happy Birthday”. Some, arms around family, others sniffling through bittersweet tears, while others standing in the presence of the moment.
Not long after, Mrs F’s breathing changed course, slowing down, becoming irregular, family recognizing from earlier conversations with me that it is almost time. Pain free and with a look of utter peace, Mrs F died. Hand held by family and surrounded by all those she loved in the comfort and happiness of her home, with her beloved husband at her side.
So much love present in that room on that auspicious day. I often think about the emotional hurdles and trauma of grief and loss had they not been afforded the time with their beautiful family member. In a time of Pandemic, and palpable stress in the world that day I felt the positive outcome of the dignity and honour that private in-home nursing care offers, especially for those wearing a palliative hat.
While we cannot find our loved ones a cure, reassuringly, we can offer nothing but love, care and dignity in the comfort of home … the way it should be for end of life care.
