Client Perspectives (Palliative Care)
When Timothy Norgate "Tim" – a man in his mid-fifties with terminal brain cancer – was discharged from hospital to receive end-of-life palliative care at home, he was barely conscious of the life he was leaving behind…
Today, six months later, his life is regained. It’s a recovery which he believes is predominantly due to the unwavering loving care of his wife and two sons, combined with the skilled and sensitive team of Health Professionals Homecare nurses who have cared for him at home since he was discharged.
Here, alongside Health Professionals Homecare’s Registered Manager, Michele Jogee, Tim shares some of his journey…
When did Health Professionals Homecare first come to care for you at home?
I’m told that the team of nurses first came to care for me at the end of last November, when I was discharged from hospital.
At the time, I was in no fit state to know much at all. I have since understood that I was predicted to have only 2-3 weeks more to live on this planet. I’m delighted that I’ve so far thwarted that diagnosis…
Michele: Initially, Tim was extremely incapacitated but there was always that glimmer of hope in his eyes and in the way he attempted to smile. As a team, we continually remained strong and positive for him. Alongside Tim’s family, we kept going despite the diagnosis and didn’t let it get in the way of potential longevity. Tim is living proof of that
How quickly did you become comfortable with your Homecare nursing team?
I was extremely vulnerable and desperate to get out of hospital. For some reason I’ve always had a fear of a hospital environment. I don’t have great memories of the early days in hospital, although I’m sure I was treated very well
Once home, I do vaguely remember my nurse Carol’s kind and efficient presence from those early days, but there is much that I don’t remember. As I began to recover, I came to know the rest of my team of nurses, who have all been fantastic
Leo has also been a tremendous help and support and alongside Carol, is still looking after me today. It’s astonishing to consider the progress I’ve made; despite suffering from a major brain tumour, experiencing a subsequent stroke and being given weeks to live. I do feel that it’s probably due – almost entirely – to the continual tender loving care and support from my wife Milena, and two sons, coupled with the skilled, firm and sensitive Homecare nurses who have cajoled and encouraged me to improve.
Michele: One of the very first nurses that we assigned to care for Tim was Carol and a little later, Leo and other nurses including Vivienne, Agnes, Dave, Hilary and Edit. The early stages were when Tim was particularly vulnerable and barely conscious of anything or anyone around him. Today, Carol and Leo and all of the nursing team have the fulfilment of seeing Tim greatly recovered with the greatest difference being his ability to be involved in his own care decisions with his family; rather than these being made for him. It’s a very moving situation when someone you care for medically, makes such a vast improvement. In Tim’s case perhaps the only words to describe his recovery are “miraculous comeback"."
You say that your nursing team encouraged and cajoled you to carry on despite your diagnosis. How did they do this?
Well, it was Leo who first got me up and out of bed. I had understandably spent a vast amount of time there. We started off walking a step or two around my flat when I could manage but it was so hard at first. Then, gradually the steps taken around my home increased and I became a little more confident in my ability to walk, over many months. Then, just a couple of weeks ago, with Leo’s support, I walked just under a mile.
Michele: In close consultation with Tim’s supportive GP and Tim’s wife and sons, we devised an exercise programme to enable Tim to have some mobility and quality of life for as long as possible.
From being in a hospital bed when we first introduced our home care, Tim has not only progressed from bed to the armchair in his own home, but also to walking outside – for nearly a mile. Such strength of character is admirable.
And I’m sure Tim won’t mind me sharing this but once he realised that he was making a considerable recovery, he proposed marriage to his long-term partner Milena and they got married in the summer.
How easy has it been to communicate your needs to your nurses?
At first, I recall that the only two words I could speak were ‘yes’ and ‘no’. Invariably, I said ‘yes’ when I meant ‘no’, and ‘no’ when I meant yes! It was tricky and frustrating at times… In hospital that was particularly difficult. For instance, when choosing food I tended to select the first item on the menu because I just couldn’t get through the process of reading, choosing and then making my choice known.
When I was first cared for at home, my nurses tended to instinctively understand what it was I was trying to say. Gradually, my vocabulary came back and with much encouragement from my nurses – especially Carol and Leo – I actually began to form sentences. I thought that my speaking days were over and yet, here I am speaking to you. I’m so very grateful.
How well did your Homecare nurses understand your medical and emotional needs?
They certainly understand my medical needs and are always very tactful. At one time, I was being monitored 24 hours a day. As I began to recover, my nurses intuitively gave me time to myself. Whilst my nurses are a valued and essential part of my life, having some private time really restores my dignity and confidence.
Michele: What is particularly paramount with a journey such as Tim has had is for us, as nursing care managers, to understand when to be ‘hands on’ and when to be ‘hands off’. Especially, when Tim married, we were extremely conscious of the need to ensure that he and Milena’s life was not impeded by our presence.
What are the personal and professional qualities of your Homecare nurses?
In the main they are nice people to be with, they all have, in their own ways, a different sense of humour which for me, is important. They’re highly compassionate too.
I welcome having a team of nurses rather than just one, because each one brings something different to my day in terms of personality, mannerisms and conversation. But however different they are, they’re all consistent in their quality of care.
Michele: Whether choosing one, or a team of nurses, it is so important to select nurses and carers who will suit a client both from a personality and demeanour perspective. Medical skills and knowledge are a given, but there is so much more to effective nursing – especially in a client’s home environment.
How has being cared for by your Homecare nurses made a difference to your wellbeing?
The fact that I was in bed for several months or so and didn’t have one bedsore or indeed anything that one would expect from being bedridden is testament to their excellent care and nursing skill. To now be at a point where I’m walking three or four times a day, progressing from my initially laboured ‘shuffling’ is just so, so incredible. I even go on special outings – usually accompanied by Leo – my favourite being rugby.
When I am indoors, I’ve rediscovered the joy of reading with the help of my nurses. Alongside the incredible support of my wife, being cared for by my Homecare nurses has been, and continues to be, very uplifting.
Michele: It’s really worth remembering that the team has been diligent in engaging with Tim’s GP – an excellent lady – by keeping her up to date and seeking her approval as Tim got stronger and before we progressed with any new activity.
I’m proud of the way our Homecare nurses met the challenge of gauging how to give Tim due respect and independence to attempt the challenge that talking, then walking presented to him. Equally, Tim’s wife Milena has been stalwart in her communication with us, and understanding of her husband’s care needs. Together, with Tim and Milena, we have all worked as a cohesive care team.
How different is your daily life now, compared to how it was before Homecare nurses cared for you?
Being able to speak and walk again is wonderful. Looking back now to my hospital days when I was bedridden and not in control of my bodily functions, is humbling. With gentle support from my nurses, I’ve got my life back.
Since January of this year, I’ve been taking a course of complementary medicine with the support of a diagnostic clinic, as I decided some time ago to cease chemotherapy.
These are food-based remedies and supplements and of course, I don’t know how big a part these have played in the improvement of my condition. Equally, the radio and chemotherapy could equally have instigated the upturn.
What I can say is that the tumour in my brain, when it was last scanned a couple of months’ ago had shrunk by 90%. I’m pleased to say that this has confounded everyone, but most of all me. My next scan is scheduled for the autumn.
How would you say that being cared for in your own home has made a difference to your recovery?
Being cared for at home here in Hammersmith, rather than hospital, has been a tremendous comfort – another instrumental factor, I’m sure to my recovery.
I’m fortunate to have a flat which is built alongside the River Thames so I look out of my living room and see the river and a full view of Hammersmith Bridge, which is a real treat.
There has been such a culmination of goodness over the past few months. I’ve been surrounded by a happy bunch of caring nurses, and also family and friends running around and caring for me. I now also have a beautiful wife… Here I am today, actually living a life I never thought I’d live again.