Courage to Face Long Loss

By Nicki Weld

Being with a loved one through a degenerative illness or disease takes us on a journey that requires courage. Rather than an immediate singular loss, we experience ‘long loss’ which includes multiple losses and changes over time. Long loss requires us to face, endure, and adapt to what is happening. Written from a personal perspective of supporting older parents with vascular dementia and episodic delirium, this book defines and applies courage to manage this form of loss.

Included is the wisdom of older adults from Christchurch, Aotearoa, New Zealand, who took part in the author’s doctoral study into courage. Their life experiences in managing adversity, from coping with a bombing in World War II to surviving domestic violence, illustrate courage, grit and resilience – and how to put these into action. Through the sharing of personal insights and knowledge, this book supports the application of inner strength and courage to help stay the course when experiencing the long loss of a loved one.

• Language: English
• Publisher: Austin Macauley Publishers
• Release date: Aug 18, 2023
• ISBN: 9781398462731

Nicki Weld

Nicki Weld (PhD) is from Aotearoa, New Zealand, originally living in Christchurch, and now residing in Wellington. She is a social worker, supervisor, and a world renown educator in the field of social services. Nicki is the author and co-author of seven books, and primary creator of the Three Houses tool used internationally.

Book preview

Introduction

In 2014, two years into my doctoral research on the concept of courage, my father was diagnosed with vascular dementia and died on 8 February 2017. Following the death of my father, my mother began to experience serious falls and episodes of severe and distressing delirium resulting in multiple hospitalisations. She lost her home, then her supported living apartment, and finally her world became reduced to one room in a hospital-level care facility where she died on 24 January 2021.

Although we understand intellectually that our parents will likely die before us, there is still tremendous loss in farewelling those who you have known all your life. Our parents have been with us from the beginning of our life journey and are therefore a cornerstone in our world. When they, or anyone we love, develop a degenerative disease or illness such dementia and delirium, we lose them in pieces over time, contributing to a process of ‘long loss’ both for them and ourselves.

For the person, long loss associated with dementia and delirium includes loss firstly of short-term memory, often evidenced by confusion over date and time, and eventually long-term memory. There is also the loss of ability to undertake skills such as reading and writing, impaired concentration, difficulty with personal cares and physical tasks, and inability to remember how to use certain objects or their purpose. These can all eventually contribute to the loss of their known environment as they move into a care situation. For family and loved ones, long loss includes noticing changes to personality, seeing abilities and skills fade, sometimes not being recognised, or remembered, and losing key aspects of relationship with the person. There are so many losses and numerous challenges to be faced on this type of journey, including taking the final steps to say goodbye.

I believe that the decision to face long loss rather than avoid it requires courage. Often courage is held up as a virtue or something reserved for acts of heroism. I define it as a way of responding to adverse situations that generate fear, vulnerability, doubt, and uncertainty. Courage is characterised by a range of traits, attributes, and behaviours, such as logical thinking, calmness, determination, acceptance, endurance, and perseverance (Weld, 2019). It results in a conscious and intentional undertaking of meaningful and important action. The decision to undertake this action is motivated by values, beliefs, morals, duty, and responsibility.

In this book, I will demonstrate and discuss the five components that contribute to the process of courage, namely:

Recognising an adverse life event.

Making a conscious decision to face adversity.

Connecting to sources of motivation.

Manging emotions.

Taking action to respond to adversity.

I will also explore the concepts of grit and resilience, which I believe are essential to support the process of endurance and adaptation on the long journey of loss. We need courage to face adversity, grit to keep on the journey with it, and resilience to adapt along the way.

Each chapter begins with a reflection from my own experiences in being alongside my parents in the last years of their lives. I have also included wisdom gathered from older adults in Christchurch who took part in my doctoral research on courage. I found talking with them to be comforting and grounding as their views and stories offered both spoken and unspoken reassurance about how to manage adversity. I am honoured to draw upon and share their words in this book.

I own a sense of discomfort, as did my research participants, offering and analysing my own experiences in order to demonstrate courage. This discomfort is engendered by being part of a society and culture in Aotearoa, New Zealand, that errs on the side of being humble and modest. There can be a hesitation to say that one was courageous in a specific situation as it is usually an accolade expected to be bestowed by others (Weld, 2019).

This understanding positions courage in its original context as a virtue, a moral good that one should aspire to be, and not something one would claim to be. Yet it is affirming to recognise the presence of courage within our personal experience and this reflection can provide confidence for managing future adverse life events. I joked at the beginning of my doctoral study that by studying courage maybe I would get some! Through participating in and experiencing the long loss of my parents, I believe I did. I encourage you to read this book actively reflecting on your own responses to adversity, and to identify and affirm where you too have shown courage, along with its companions of grit and resiliency.

In situations of the highest risk, greatest loss and potential failure, life provides us with a unique invitation. Accepting this invitation helps us to stand strongly in who we are and provides strength to face the next life challenge when it arises. Understanding and being able to manage the adversity of long loss provides us with the skills and the capacity to fully participate in every life experience. The courage, grit, and resilience we utilise on this journey ultimately supports us to fully experience our lives by discovering and affirming who we are and what we are capable of.

Chapter 1

Understanding Adversity

When Dad was 72 years old, a procedure investigating the persistent reflux he was experiencing revealed a tumour in his pancreas. His doctor told him it was most likely to be cancer and the outcome would not be good. Dad had to wait three weeks for the surgery to remove the tumour and for the biopsy to determine if it was benign or malignant. In the three weeks before the surgery, he and I would go for walks to help manage the stress he was under. He was very anxious as it was a frightening and uncertain time, and after the surgery when the biopsy came back as benign, we all let out a huge sigh of relief. It was like we had been standing on the very edge of a high precipice and the word ‘benign’ meant we could step back and get on with our lives.

Unfortunately, Dad, now also diabetic due to a section of his pancreas that was removed, never took that step back from the edge and we did not realise this. He remained extremely anxious and developed major depression. He was put on medication for this but did not receive any other treatment. A few months later in the bathroom of our family home, he cut his throat, wrists and drank poison that was stored in the garage. When I received the phone call from my distressed sister in Christchurch, she told me about the ambulances in the driveway with paramedics trying to stabilise Dad. She also described our mother standing shaking covered in his blood as she had fought to get the knife off him. When I saw Dad that evening in hospital after he had surgery to repair his throat and wrists, he kept saying, It’s all through me, I’ve had it. It was then we realised his terror of thinking he had pancreatic cancer had never left him. He remained on a psychiatric ward for three months and eventually recovered.

His dementia became apparent some years later on a trip to Aoraki/Mt Cook in 2014 for my oldest sister’s wedding. Although we had noticed some changes in him, we put these down to his anxiety and old age affecting his memory. However, on arriving at the accommodation at Aoraki, Dad became extremely agitated and confused. He wanted to return home and began to act destructively, throwing his suitcase into the elevator, and shouting. It then became apparent he had not packed anything to wear and instead had brought along an empty suitcase. His diabetes medication, suit for the wedding, and even pyjamas had been left behind in Christchurch.

We found him some clothes but could not resolve the issue of him not having his medication in such a remote setting. With the stay at Aoraki only being for two nights, we had to hope for the best, and he managed to get through the wedding but was extremely anxious to get home. He was convinced that a storm was coming and the roads would be closed.

On the drive home, he fell asleep, and when he woke, he was extremely disorientated and tried to get out of the moving car. My partner and mother were with him and they became fearful, pulled to the side of the road, and phoned me. I was driving another car and we turned back and swapped drivers. I got into the backseat with Dad who was panicky, wild eyed, and extremely confused. I spoke gently to him and then moved him into the front passenger seat, and I drove. I talked about things that were safe and known to him and reassured him we would be home soon. Inside, I felt a mounting fear because I now knew that there was something very wrong with him cognitively.

The following months confirmed the diagnosis of vascular dementia, evident through a brain scan, and his short-term memory rapidly failing. He was starting to get up at odd times in the night convinced it was the morning and would make himself breakfast. His beautiful flower and vegetable garden began to slip into disarray. On reflection, it was almost symbolic of what was happening in his brain. The usual order and structure to the garden became confused as Dad struggled to problem solve and carry out tasks. Once clearly marked paths became overgrown and were no longer easy to navigate around. His fading physical strength meant he could no longer do jobs such as pruning, and a reduced ability to get up and stand meant the weeds began to take over.

Dad began to sit uncertainly in the lounge, unsure of what he was doing. He would follow my mother around the house, perhaps seeking comfort or direction. He slept more and more. Always proud of his appearance, he became unwashed, confused about how to manage having a bath and refusing to use the new shower that had been installed. He started to fall frequently as his gross motor skills began to fail, and the phone calls from my mother to myself and my sisters became more frequent and agitated.

My mother wanted to take a trip overseas and we realised Dad could not be left on his own. We found a caring retirement village and Dad agreed to go there for a respite stay. Somewhere in his failing brain, he accepted he was no longer managing on his own. He did well in respite and identified feeling safe there. Once back at home, the falls continued; my mother was struggling to cope, and so they decided to buy an apartment at the retirement village where he had gone for respite. We packed up our family home where my parents had lived for 52 years and helped move them into their new apartment in 2015.

Defining Adversity

If adversity is not present, courage is generally not required. Adverse situations contain an actual or perceived threat to physical and emotional safety, and include events such as disasters, accidents, and life-changing health diagnoses. It is likely the event or situation will be one that we have not experienced before and therefore carries an element of the unknown. There can be a sense of being underprepared for what could occur or for what is happening. The adverse event might be a challenge or an obstacle and is typically characterised by apprehension and fear. It might be a sudden short-term event, or a prolonged ongoing situation.

The most obvious adverse situations are those that involve physical risk or harm. These are situations that put our life in sudden danger, such as an earthquake or being in a burning building. There is often an immediate response required to survive the situation. Physical adverse situations are the most frequently linked to courage, typically with the connotation of heroism if people take action to help others. However, physically adverse situations can also be managing a difficult health diagnosis that causes threat to life. Terminal degenerative conditions are the most obvious of these, as they contain multiple layers of physical loss.

Less obvious are adverse events that result in a loss of psychological stability, which causes helplessness, powerlessness, shame, and embarrassment. Concern about managing these strong emotional responses and what else might come results in apprehension and fear. When my sister rang me to tell me my father had tried to kill himself, I froze. I knew I had to get to Christchurch as he was still critically ill, but I could not think properly. My partner was out for the day and unable to be reached. I remember walking from room to room in our house in a state of shock. I had to speak out loud each step of what I needed to do: Pull yourself together, turn on the computer, book a flight, pack a bag, get a taxi, get on the plane. The fear and shock