Anyone who has ever cared for a loved one will know that it can often feel as if things are holding on by a thread. Moreover you know that there may come a time when that thread snaps and your family situation breaks down. On that eventuality, nothing is ever the same again.
This was the experience of my family. We were a happy household of three – my mother and I sharing responsibility for the care of my grandmother and that’s how it was for 30 years. We had our upsets and tiffs – who doesn’t? But it was a contented existence with supportive, loving relationships – something which my grandmother alluded to just before her passing. Even then, her sense of perspective and wisdom shone through.
I did not notice when her mental health began to deteriorate; it was very gradual. However members of the extended family, who saw her less often, began to comment. To me, it only seemed to make her all the more lovable and she was still a tower of strength whenever adversity struck. Looking back, these were merely milestones and I was not prepared for the dire events and circumstances which were about to unfold.
I worked full-time but on a weekend she would accompany me everywhere – cinema, restaurants, a ride to the sea. We were like two best pals. I am glad that she did not have what could be termed as a mundane elderly person’s life. She was still vibrant, interested and physically active. But her short term memory was starting to fail her.
Though I hadn’t noticed my grandmother’s mental state, I was markedly aware of my mother’s growing frailty. Though we didn’t know it at the time, I too, had a serious physical illness – more about that later. At this moment in time, I felt invincible.
Things came to a head when my mother collapsed one evening. She was rushed in to hospital as an emergency. I called Social Services, in a panic, not knowing what to do. I will never forget what it was like when a car arrived to take my grandmother in to care. While the Social Worker told her that it was temporary until my mother recovered, I knew deep-down, that it had to be permanent. My mother’s health would now be my priority.
We got used to it, eventually. A weekly outing on a Sunday afternoon, once my mother recovered, was a treat and still something we could do as a family. My cousin came along for support. My heart feels heavy at that memory, for I am the only one left now – my cousin died last year, only 62.
Two years passed – they were difficult but we made the best of them. This really was living in the moment – in my heart, I knew this would be short-lived. I began preparing myself for the prospect of losing them.
But in my grandmother’s case, it was not a traumatic passing. Even this, like most events throughout her life, she took in her stride. It was peaceful, in a calm setting, supported by caring professionals and surrounded by love.
A year passed and my mother and I settled in to a new life. She remained frail, suffering from hypertension, diabetes and arthritis. Very suddenly, I started having problems – seemingly unrelated but noticeable – a cough, severe skin lesions and feeling poorly. The medics were baffled, as were family and friends. From somewhere deep within her, my mother found the strength to look after me. We didn’t know it at the time, but she herself had terminal Non Hodgkins Lymphoma. Preoccupied with my own health and still grieving over the loss of my grandmother, I missed all the warning signs.
My illness progressed and peaked. Symptoms were more dramatic – breathlessness, nose bleeds, rigor, profuse sweating, nausea. A locum GP promised referral in a fortnight and that promise was kept. Several invasive investigations lay ahead but confidence in the specialist allayed my fears. As I took the journey through biopsies and scans, this confidence grew. But on diagnosis of Wegener’s Granulomotosis, a rare autoimmune illness, three months after presentation, I reacted strangely, asking if I only had 6 months to live. In reality I was suffering from anxiety over life expectancy and this stirred up emotions which I had not experienced in quite the same way before – frustration, anger, fear, uselessness, vulnerability and an element of grieving for myself, the healthy person I used to be. Feelings of shame and guilt because I could no longer care for my mother, contributed to depression, often accompanied by anxiety attacks. I had some counselling and this helped.
The specialist prescribed some very effective treatment for my physical illness and I tolerated and responded to it. But as I recovered and symptoms remitted, my mother’s health deteriorated badly. It was her back pain which suddenly worsened and resulted in the GP prescribing painkillers. She started to lose her appetite, lost weight and looked generally poorly. She lost all interest in her hobbies and interests and no longer wanted visitors. Looking back, I should have known something serious was wrong – she had always been such a positive person, never complained and always put others first. She had been a nurse in her younger years. At this point I wish I had asked for help as I was unable to fulfil my role as a carer. Help from Social Care may have been forthcoming. But we struggled on.
A locum GP suggested an X-Ray but nothing sinister was revealed. Hindsight is a wonderful thing and I now wish we had pressed for a scan. Naively I believed that a clear X-Ray indicated a clean bill of health. I now know that this may not always be the case. I have tried to forgive myself. In the case of my illness, both tests showed abnormalities; the X-Ray mirrored the scan results – both showed inflammation on the lungs. I believe this may have given me a false sense of security when it came to my mother’s illness – I put too much faith in the results of the X-Ray.
On 23 November 2002 my mother suddenly lost the use of her legs. It was terrifying. Another GP visited the house to examine her and thought it might be a stroke. However, when she was admitted to hospital, events moved very rapidly. A scan quickly revealed a tumour on the spinal cord. The Surgeon was sure this was cancer, particularly in view of the weight loss. We were both shocked and shattered by this news.
After a referral to a more specialised hospital, where several biopsies were taken, the diagnosis was Non Hodgkins Lymphoma. A third referral was to an oncology department in yet another hospital for a combination of radiotherapy, chemotherapy and steroids. My mother did not respond to the treatment and deteriorated. At times she seemed to be grieving for herself – all I could do was try to give her whatever reassurance I could. But I believe this was an element of care which was missing and asked myself whether there should have been some kind of counselling available.
She was then referred to a fourth location – our local community hospital for palliative care. This had a homely feel, indeed we knew many of the members of staff and our own GP welcomed us there. But overnight she deteriorated further and the Sister recommended she return to General Hospital – they did not have the capacity or level of nursing appropriate for her care. She really was moved from pillar to post at a time when she was ever so poorly. It was Boxing Day. Once she returned to hospital, I attempted to seek answers from doctors. This was to no avail, there was never anyone available. On 1 January she fell in to a coma – a junior doctor – someone of no specialism or status and one whom I had not met before – imparted to me the worst news I could possibly hear – it would be a matter of weeks or even days. She said my mother was likely to continue sleeping – she really did not prepare me for what lay ahead. Added to that, the nurse who was present at this meeting, suggested that I could be a real help in monitoring the degree of pain and distress my mother was suffering from. I believe that this placed quite a burden on me and led to feelings of panic and anxiety. If things could not get any worse, they did just that. Our experience of palliative care was not a positive one. My mother was in great pain but worse than that was the distress. I had no yardstick to measure this by, no previous experience, just a gut feeling that more could be done. I never saw a doctor during the 9 days my mother lay dying. My overall impression was that the process of dying was all about nursing – doctors were needed for the living. How much more confident I would have felt if a doctor had been at hand. Even the Macmillan nurse was not readily available – the ward was so busy – it seemed under resourced. My own Macmillan nurse stepped in and arranged for me to see my mother’s Macmillan nurse but I felt she did not really listen or understand the seriousness of our situation. This may have been due to lack of contact – she did not know the background to my mother’s case or how I had reacted to the prognosis. I was relieved and grateful that I had my own Macmillan nurse for support.
One incident stands out in my memory as particularly abhorrent. Just before my mother lost consciousness, she had needed extra support. There was some incontinence and she would often call for assistance. As I passed the nurses station, I overheard a member of staff say – Oh that’ll be Sylvia Ogden yet again. To hear such a remark, at such a time, I was horrified. A careless throwaway remark but one that can have devastating consequences for a patient and their family. At the time we were already under such physical and emotional stress. It felt like the final straw. I also felt that the very same nurse took a judgemental stance – on one occasion commenting on the length of time I was spending at my mother’s side. He clearly did not think it was enough and did not conceal his feelings. I had hoped everyone would understand – I was chronically ill myself. Now, a whole lot more experienced and wiser, I know this to be about essence of care – the importance of respect, compassion,dignity and sensitivity during end of life. What an end of life experience it had been. This was a million miles away from the care my grandmother received, two years previously. I was too physically frail myself – at the end of my chemotherapy – to take any action. I regret that now – it may have helped others. I felt that the system had let us down at every turn.
After my mother died, I visited our GP surgery, seeking answers about the misdiagnosis. This was far from reassuring. I had understood that my mother’s health was complex. The GP advised that there had been some masking of symptoms – the pain from the arthritis had masked the real underlying problem which was the cancer. Perhaps I had been naïve but I had mistakenly thought there would be mechanisms in place to avoid this sort of eventuality – perhaps a more senior doctor giving a second opinion. Or an immediate referral to secondary care if a patient was in unbearable pain. But I was merely told that she had been unlucky, it was rare to contract this particular cancer at her age. He even suggested that this might be something that could be presented at a future surgery team meeting. While the GP practice might have had an interesting debate on my mother’s case, I was left with no answers, only the feeling that I could have done more, I had let my mother down.
But I have channelled my energies in to patient and public involvement with a great interest in palliative care which has become a specialism. One of my first committees was the NCRI Clinical Studies Group on Palliative Care and Sub Group on pain. This was followed by a carer representative position at Cicely Saunders, a position I still hold. I also volunteer in mental health particularly dementia, in memory of my grandmother. Fundraising activities have also added to what is now a productive, exciting life.
Before my mother died, she asked me to enjoy myself but also to lead a good life. I promised her that and have tried to keep my word.