Introducing Carer’s Voice
This is the first of a regular series of articles written by Laura Graham, who will be sharing her first-hand experience of being a carer – learning the ropes, and finding her way around the NHS, social services and the third sector.
Laura Graham is an independent researcher, writer and consultant, working on strategy and policy development in the fields of addiction recovery, mental health and carer’s issues. She is the founder of Cure the NHS-Lambeth and is passionate about improving patients’ experiences of NHS care.
February 2016 marked my third anniversary of becoming a carer to my lovely Mum Doreen, following a life-changing hemorrhagic stroke in December 2012, aged 81.
I will never forget this event. It was the last Saturday before Christmas and we had spent the day together getting ready for her ‘baby’ brother’s 80th birthday party. She had cooked us both breakfast and we went shopping before going to the hairdressers for an afternoon of pampering. It was warm enough to walk the half mile back home to get ready for the evening’s festivities and we were both excited, looking forward to the evening and to Christmas.
We were ready for our taxi to collect us at 6pm. My Mum walked down the stairs outside my flat and got into the back of the car. Her left leg was still out of the car and I waited for her to move it so that I could shut the door. She eventually, with a bit of help from me, lifted her leg into the car and we took the short journey to the party venue in Fulham. My Mum needed a bit of help to get out the cab, but I assumed she was just tired as we’d had a busy day, and she had been so excited about the party. She was able to walk the length of the pub without help and we found a comfortable sofa to sit on.
Increasingly odd behaviour
Over the next hour, her behaviour became odd. She was talking to everyone, but not moving her head in their direction. There were many photographs being taken, but she could not move her head in the direction of the camera without prompting. At about 8 pm, she whispered to me that she had a headache and felt exhausted. I ordered a taxi and we started to gather our things together ready to go home. However, as she tried to stand up, she could not move her left side. My cousins lifted her and tried to help her to walk. We could see that she was not moving but she truly thought that she was walking. Immediately, I rang for an ambulance. Instinctively, I knew that she had a stroke.
A&E – delays and dire news
A paramedic arrived after an hour, (due to the time of year!), followed by an ambulance. Both confirmed a stroke. The ambulance took us to the nearest hospital with a stroke pathway, (where there are links to specialist stroke services and expertise not accessible in non-stroke pathway hospitals), where we waited for four hours to be seen (due to my Mum’s paperwork being lost). The stroke was confirmed and my Mum was moved to a stroke unit. She was tired, but still lucid. She was scared, as was I, but once settled on the unit, she drifted off to sleep. It was about 7 am and despite every inch of me wanting to stay holding her hand, I knew that I had to go home to get some sleep. Plus, I was suddenly conscious of how ridiculous my sequinned party outfit looked in the environment of the stroke unit.
[Tweet “As suddenly as my Mum had become disabled, I had suddenly become a carer.”]
As I left the hospital, I bumped into the doctor who had seen my Mum in A&E. I will never forget his words, “From the scan, I can tell you that your Mum will need far more help than you will be able to provide on your own”. My knees gave way, and I crumpled into the nearest chair, completely stunned. Then I just cried. I cannot remember getting home, and the next few hours were a blur of telephone calls to family and friends, which were particularly difficult so close to Christmas. Eventually, I fell asleep on the sofa for a few hours before heading back to the hospital.
Early days; slow progress
My Mum was asleep when I arrived and stayed that way for the day and night, and for much of the next few days. Christmas came and went pretty much unnoticed as I spent every waking hour at the hospital with her, willing her to get better. Then she got a urinary tract infection. Information about her prophylactic antibiotic, which she had been taking for years, had not been properly noted and in the absence of any infection on admission to hospital, had been stopped. The infection made her very confused, loud and agitated which also delayed physiotherapy intervention, so vital to stroke recovery. However, I arrived one day to be greeted by two physiotherapists who had just put my Mum back into bed from “sitting out” (physio parlance for sitting out of bed in a chair by the bed), for a few hours – which was a good thing.
Without any prior knowledge of physiotherapy or strokes, I did not quite understand the importance of what appeared to me to be a minor event of sitting in a chair. With hindsight, I understand how huge this actually was as a first step to regaining mobility in her left side.
The next day, I walked into the unit to see my Mum sitting in a wheelchair with a neck support, which was a complete shock to me. Though terribly sad, seeing her lying in a hospital bed had been less of a shock, as I had seen her during a less serious previous hospital stay, but seeing her in the wheelchair, and additionally requiring equipment to support her neck while she was in the wheelchair, was initially overwhelming for me. She was tired and said that her neck hurt, so the physiotherapists helped her back onto her bed.
Strokes don’t always follow the rules
They drew the curtains around the bed but I asked if I could be with her when shock number two arrived in the form of a hoist. I understand now that this was the safest and most dignified way to move my Mum at that time, but it was still a shock to see just how disabled she was. The actual stroke itself had been so undramatic. It had been unnoticed as the bleed slowly wreaked havoc in her brain. The first sign had been at 6pm, when she had been unable to lift her foot into the taxi, but it was so insignificant at the time. There had been no screaming pain, no falling to the ground unconscious, and none of the advertised indicators such a crooked smile. Yet here she was days later, being hoisted from a wheelchair into a hospital bed.
As suddenly as my Mum had become disabled, I had suddenly become a carer.
My Mum is pretty amazing!
Three years on, we’re in a much better place. My Mum lives at home with me, where I care for her with help from three wonderful Personal Assistants who are paid via Direct Payments and I now work from home so that I can be her. Her recovery from the stroke has been described as “remarkable”, and as a “miracle” by medical professionals. My Mum is pretty amazing!
In future Carer’s Voice articles, I will share some more of our journey in the hope that we can use our experience to help others. Our lives are unrecognisable to our lives pre-stroke, and we have had many bumps along the way which have been huge learning curves for us both. We have lost a lot, including friends, family, and some freedoms along the way, but we have gained so much too. I look forward to sharing some of what we’ve experienced and continue to experience, including the good, the bad and the ugly… to be continued!
You can get in touch with Laura Graham by email lgrahamresearch@gmail.com.
The Cure the NHS – Lambeth meeting place is a closed Facebook group – it’s a safe place for people to share their experiences or to come for support. The link will open in a new browser window.
If you would like to share your experiences of caring, or comment on Laura’s, you can add a comment at the bottom of the page.
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