When you are on a PhD journey, you can feel like a lone trucker on a long route, where the end seems out of sight, but life still happens around you. At times you can quieten life down and focus on the marathon academic road ahead, in fact sometimes it feels like I have been able to mute my very full but stable family life! I am first and foremost wife and mum to one 20 something plus two late teenagers and an almost full time Nurse Lecturer as well as a year 4 part time Doctorate of Professional Practice (DPP) Student. However, the last while (almost 5 weeks) family life has taken over. I’m certain I will not be alone on this trajectory of personal life interrupting the race to the finish line. However, the most recent curve ball is so intertwined in my doctorate research area, you could not make it up!
The purpose of sharing this blog is to demonstrate how these emotive family times are linked to my doctorate journey. My DPP research topic is the lived experience of Person Centred Care for Older People in Acute Care from the multiple perspectives of the older person, their family, nurses and medical staff. I completed my data collection in the summer of 2018, my analysis over the winter 2018/19 and am currently in my final write up phase.
However, on February 1st 2019 I received news that my 84 year old aunt, who lives in Canada (4000 miles from me in Scotland) with her 91 year old husband had suffered a Cerebral Vascular Accident (CVA – Stroke); the second in her lifetime, the first occurring 12 years ago. My aunt (my Mum’s younger sister) and Uncle never had children, so after each other, I am their next of kin, their healthcare agent. Over the last couple of years my aunt had developed signs and symptoms of early dementia, no major cognitive decline, but a change from her usual very precise self. For example: several Christmas cards arriving instead of just one and a loss in an ability to converse for hours on the telephone and inability to communicate via e mail. However, she had still lived at home with her older husband who remained as sharp as a new pin and who almost covered for her decline. With this stroke came a sharp decline in cognitive and physical function, alongside erratic hyper/ hypotension. After 4 weeks of continuing my usual juggle of work, studying, family life and daily calls to Canada. I decided to go out and support my Uncle.
This was my ninth visit to this city in Canada, as all three of my Mum’s sisters had immigrated there in the 1960’s I spent many a long summer with my Mum’s family there. Particularly with this Aunt and Uncle, as with no children they could accommodate my Mum and I visiting. Their small city feels as comfortable as an old warm cardigan, recognisable immediately and fits around me as soon as in sight. This visit was different though. My aunt ageing, frailty lurking, had suffered a second CVA, deterioration in vascular dementia and was in acute hospital care when I arrived. The clinical area could have been my DPP research area, an acute medical area with most patients over the age of 65. However, I was not a nurse, an educator or a researcher here; I was a family member from another country.
I found myself steeped in my own lived experience of observation of person centred approaches in acute care for older people in a different place from my usual. However, there were so many similarities, but some differences too. Routines of personal care, regular vital sign checks, days punctuated with meal times and shift changes all the same, but infection control, uniforms and nursing role differences. I found myself soul searching and reflecting on my own expectations almost constantly. My research is for older people without cognitive impairment, yet here I was immersed as a family member of an older person with cognitive impairment. The enormity of my aunt’s vulnerability weighed heavy upon me as soon as I arrived. By some miracle, despite not having seen me for ten years, she recognised me, holding my face to hers and repeating my name over and over again. This was the first of many flowing tears evenings.
My once strong forceful very determined aunt had lost so much weight she now appeared withered, she could only manage 5 / 6 words, on a good day; she did however manage to convey many of her needs non verbally, even managing dry wit and sarcasm at times! She relied on 3 x a day visits from her 91 year old husband for any nutrition/ hydration as she did not manage to feed herself more than a couple of spoonful’s of minced food or thickened fluids before forgetting the purpose of the food in front of her. I am certain nursing care would have provided assistance with this but this helped her husband of 65 years feel less guilty about handing her care over. She always recognised him, but at times viewed me with deep suspicion. She could not tell you where she was or why she was there. She required assistance with every activity of daily living and was medically unstable.
Prior to her CVA’s my aunt had a diagnosis of kidney disease which affected her Blood Pressure (BP), for at least 40 years she had received medical treatment for this and coped best with a higher side of normal. Normal BP left her dizzy, disorientated and prone to falls. Her regular hypertension had led to her first CVA, her Vascular Dementia and most recent CVA. Physicians struggled to control this in the weeks before my arrival and during the next 7 – 10 days. I really believed this would lead to her imminent demise when I made the decision to travel so far to support her elderly husband. If I had not been steeped in the acute care world of my aunt, I would have assumed her nurse had made a numerical recording error in reporting her BP. On my 4th day of face to face involvement in her care, she was unrousable except to painful stimuli, her BP was found to be 77/42, her breathing shallow, her pulse weak and thready. I sat with her, stroking her hand gently, preparing myself for angels carrying her away. Topical vasodilating medication was removed, oral anti-hypertensive meds withheld due to reduced consciousness, within 2 hours she was alert but agitated, eating and drinking with a BP of 240/100. Oral anti-hypertensives were administered and temporarily she stabilised.
My professional nursing experience of over 30 years, my personal lived experience of my Mum’s death from Breast Cancer, my brother’s from Bladder Cancer did not prepare me for this journey. The emotional storm of having someone you love dearly to disappear before you due to dementia, alongside medical crisis that rises and falls like the crest of a wave is overwhelming. I guiltily prayed for her demise, as I strongly believed my once proud, dignified articulate aunt would prefer to be dead than live the life she now found herself in. I walked daily to try to reduce my associated stress, the aptly named ‘sugar bowl’ (see photo) slopes linked to my emotional turmoil.
Sixteen years previously my Aunt had spoken to me on the telephone as part of our regular contact, explaining she had prepared an advanced directive for her healthcare wishes should she no longer be able to act on her own. My Uncle was her 1st named agent to act on her behalf, but I was both their 2nd agent. I remembered with clarity the equivalency of my discomfort and her pragmatism in this conversation. I did not want to talk of their demise or deterioration, preferring to consider them to be strong older people with a long self-determining future in front of them. This conversation had been followed up with official lawyer endorsed documentation explaining that if there was no hope of physical or cognitive improvement my aunt did not want to receive active treatment.
On day 8 of my visit, another flat, sleepy hypotensive day, her physician spoke to me about the eight levels of care available in the province. She was around half way through these levels of care, the top three are around full resuscitative active intensive care, she was on the next medical care level where they would not attempt cardio pulmonary resuscitation but would medically investigate and intervene. He believed we should be considering reducing active treatment to comfort care and symptom management, as there appeared to be little hope now 6 weeks post CVA, with no physical or cognitive improvement of regaining her previous quality of life. I was so grateful for my aunt’s pragmatism and foresight sixteen years previously to tell me her wishes, so I could use this to have the difficult conversation with her very astute elderly husband. Moving to this level of care meant no more regular blood work, no more Intra Venous Fluid resuscitation (where 6 hours of planned fluids took 12 due to her repeated removal of her own cannula) and no plans to percutaneously or naso gastrically feed her. I was shocked at how quickly he agreed to reducing the level of care. We had spoken about the possibility of her erratic BP leading to death, but he still appeared hopeful of life prolonging treatment, however did not want any form of artificial feeding. I found myself thinking about Gwande’s perspectives on quality versus quantity of life in acute care of older people and how as a healthcare professional you think you know your perspectives on this, but it really is not until you face these challenges personally you truly understand them (2014). Having the weight of my aunt’s medical decisions between my uncle and I was such a burden, but would have been so much worse if she had not shared her wishes before Vascular Dementia robbed her of her ability to do so.
Alongside the reduction in care intervention came plans to move my aunt from acute care to long term care. This proved to be much more challenging for both my uncle and I. She had by this point spent almost 7 weeks in the same acute medical ward. I had only been around the clinical area around 2 weeks, but I knew most of the nurses by 1st name, they knew me; knew and admired my uncle enormously. We had formed mutually respectful trusting relationships. Dewar (2011, 2013) influenced me on what I teach about this every year in my day job as a Nurse Lecturer, that relational care is highly valued, but now I was experiencing this from the other side. In my DPP I had found how important older people and family viewed informal communication as relationship building (Dewar and Nolan 2013, Dewar 2013). I had also found in my research that nurses who made time to get to know older people and their families were more fulfilled in the roles; that person centred care was as beneficial those providing care as it was for older people and their families. This appeared apparent in the enthusiasm of most of the nurses who cared for my aunt, whilst those who did not appear to know us (very much in the minority), came across as less fulfilled and compassionate.
Another key aspect in my findings was that families prioritised safety of the older person, over quality of life; I remembered feeling despondent as a researcher with this finding, believing I would always prioritise quality of life. Bloomberg and Sahlberg – Bloom (2007) had found that safety was often considered a priority over person centred approaches. Yet, here I found myself as a family member prioritising safety of my aunt and uncle over what their preferred choice would have been; a return home. Berwick (2014) also explored the tensions that can arise between person centredness and safety, both components of quality healthcare, but for some one needs to trump the other; usually for me it was person centredness. My elderly but fit, sharp uncle wanted to bring my completely dependent, medically unstable aunt home. Her Multidisciplinary Team (MDT) believed this was too high a safety risk for both and that my aunt required total nursing care. There was irony that I had become like the family members I had misjudged as selfish for pushing for safety over quality of life, their person centred choice. This showed to me that being immersed in my own lived experience of being a family member of an older adult in acute care caused a shift in my paradigm in this context, my place in my horizon on this topic had moved to a new shade (Gadamer 2004).
My next challenge was a new healthcare system in a different country. I understood the system for this type of transition in Scotland, but I was in a foreign land. I had to learn the system in order to support my aunt and uncle through this transition. I had a cousin, in this area of Canada who was a Nurse Consultant in Palliative Care. She not only supported my rapid system education but invited me to a professionally aimed presentation about these processes, from another’s nurses personal perspective (Freel 2019). I wept at this presentation, as the enormity of moving my aunt into a long term facility was so emotively linked to Freel’s own experience (2019). However, I gained insight, that allowed me to explain enough to my uncle that he agreed on a temporary move to a full care facility, not of his choice, whilst being placed as a priority for the facility of his choice. My understanding of how the system operates is that temporary places are offered in care faciities, this can be up to 60 km from home, you can only refuse twice then the older person is discharged home, which the MDT had already stated was too high a risk to safety. What terrified my Uncle most was an out of town placement, as at age 91 years old, he was still confident to drive in his own small city, but not out with. He was my aunt’s only family (they were estranged from my other aunts and their families) so an out of town temporary placement would have been devastating.
Thankfully my Aunt was placed just five minutes’ drive from their home. However, this still did not prove to make the transition easy. My Uncle was grieving the loss of my aunt to vascular dementia, he was laden with guilt that he was not bringing her home and this had never been their golden years of life plan. He trusted the hospital staff, as he had seen their care and dedication over an 8 week period. This was another challenge. The day we visited the nursing home to view her new home, her room and sign all her paperwork he sobbed in my arms. I had found in my DPP that the burden care lay heavy on family members, but now my insider perspective was that this can feel suffocating.
During the second half of my five weeks in Canada, my aunt moved to this care facility, my uncle and I continued to visit three times every day around meal times, building new routines. Leaving my aunt in the care home on the first night, felt like leaving my toddler with a 29 other vulnerable people and not enough strangers to care for any of them. I kept my sobbing until 12 midnight when the time difference allowed for a videocall to my husband at home to relieve some of this weight. My reprieve the next day that she had survived was palpable.
On day 2, my aunt had her hair cut and set at the nursing home’s own hair salon; she actually started to look like herself! Then my aunt, uncle and I attended animal therapy at the home and we started to believe this move actually might be okay!
However, that evening we received a call to say my aunt was on her way to the emergency room due to a fall and subsequent head injury. On the same day as her husband fell at home! Amazingly, in the Emergency Room she was cognitively aware and humorous about both their bandaged heads.
Despite my aunt stabilising medically (normalised BP) over the subsequent days, her deterioration cognitively was marked, recognising me one day, but not the next, being excited by my husband’s arrival quickly followed by contempt. She began to become angrier about staying in the home, wanting to leave with us; particularly after mealtimes where she immediately forgot that she had eaten. Another source of agitation was my attempts to personalise her new home with things from home, she would eventually after much hand waving and angry looks saying “ take them home.. where they belong.”
Being new in a long term care facility as a family member felt like being a new girl at school. My uncle and I did not know the rules of where to sit, who to talk to, how everything worked. Thankfully the nursing and recreational staff, showed us the ropes. They appeared genuinely eager to care. That helped my Uncle and I build trust in them.
So, I left Canada after nearly 5 weeks. I have not been in any of my normal life roles as a Wife, Mum, Sister, Aunt, Friend, Nurse Educator or DPP student. I managed very limited hours of actual studying during this time. However, the insights I gained as a niece /carer / healthcare advocate have changed my perspectives ways that will mean I will view person centredness of older people and the transition into long term care, completely differently. I really hope I can channel this emotionally exhaustive experience in ways that promotes high quality care of older people and their families in the future – alongside my completed Doctorate of Professional Practice! I realise this is a mix of an emotive and theoretical blog, but I do not apologise for this. My intention is to capture my humanity on this road helping older family and researching care for this client group. I hope that when you read this, it has some influence on your perspectives on the person and family centred needs when an older person is in acute care then moves into long term care.
BERWICK, D. M. 2014. Promising care, how we can rescue health care by improving it. (1st ed.). San Francisco: Jossey-Bass.
BLOOMBERG, K., and SAHLBERG-BLOOM, E. 2007. Closeness and distance: A new way of handling difficult situations in daily care. Journal of Clinical Nursing, 16(2), 775-779.
DEWAR, B. 2011. Caring about Caring: An Appreciative Inquiry about Compassionate Relationship Centred Care Edinburgh [online] available from: tinyurl.com/cm5w2cz. Last accessed: April 20th 2019.
DEWAR. B. and NOLAN, M. 2013. Caring About Caring: Developing A Model to Implement Compassionate Relationship Centred Care in an Older People Care Setting, International Journal of Nursing Studies, 50 (9), pp. 1247-1258.
FREEL V. 2019.Transition from home to care with dementia: a daughter’s Perspectives (Oral Presentation), Weekly Rounds, Chinook General Hospital, Lethbridge, Alberta, Canada, 19th March 2019.
GADAMER, H.G. 2004, Truth and Method,2nd edition, New York, Continuum Impacts.
GWANDE, A. 2014. Being Mortal: Medicine and What Matters in the End, New York, Deckle Edge.