Fatima's husband, Bernie, had a stroke in 2020. She finds the support of LEGS invaluable, not only for the benefits to Bernie's recovery from stroke, but as a means of connection to other carers.
Stroke - I now know that it does not discriminate against race, age or gender. When it strikes, it is an unexpectedly life changing for the survivor and the carer. It turns your way of life upside down.
Prior to 18th April 2020, my husband and I were merrily making plans for our future, both looking forward to the next stage of our life – retirement. Although, the Covid 19 pandemic was raging around the world, we were optimistic it would soon sort itself out. As long as, we obeyed the health professional and government guidelines we would be OK, plus August was some time away, we may still be able to have our dream trip. Flights and the accommodations were booked for a big adventure, a 6-week driving holiday through various parts of the USA and eventually ending our trip in Canada to celebrate our 10th wedding anniversary at Tofino on Vancouver Island where we were married.
However, on Saturday morning 18th April 2020, unknown to me as of this day, life was never going to be the same again and a year on there is no sign of my old life. Stroke has changed everything. Robbed us of our dreams. We are now doing a waiting game, allowing time to heal the body and mind and hoping that the person I married may come back to me.
The event of that morning will forever be imprinted in my memory. My loving and highly intelligent husband of almost 10 years came downstairs, looking dazed and very ashen, saying he needed help with his shoelaces. Glancing at his hand, I noticed the left-hand side was floppy by his side and soon after there were other classic symptoms playing out in front of me. Such as, slurred speech, droopy face. I’ve seen the TV adverts and so I knew what I was looking at. I sought emergency help. I was told due to Covid, there might be a delay.
I remember pleading with the person at the other end of the telephone line to come quickly and I remember saying to the operator that the ad on TV recommends quick action when a stroke happens, time was of an essence. The quicker you act, the more of the person is saved. Of course, she knew that.
The ambulance came within 15 minutes, but it felt like an age. They carried out their assessment and then the time came for my husband to be taken to the hospital and the biggest shock of my life was yet to come. I was not allowed to accompany him or meet him at the hospital, due to Covid. I was left alone at home, pacing the floor, all alone. It was the darkest time of my life. No one was allowed to come to be with me due to the lockdown. I was left alone, wondering if he was going to make it. I sat looking at the phone, willing it to ring to let me know he was ok. That call didn’t come till the next day about 5.30am. I was told he was stable. What does that mean? I asked the nurse in charge. A doctor will be calling to explain further after their rounds. Again, that call didn’t happen till 10 pm. I spoke to a weary doctor who apologised for the delay in calling me and assured me my husband will be ok. He explained some of the medical interventions he underwent but I didn’t understand the implications of them and what the stroke affect may have left him with. But I do remember clinging to those words that he is ok. I thanked him and ended the call.
On day 3, I was asked by the OT to send her photos of the layout of our home as they have to prepare him for discharge due to the risk of catching Covid whilst he is in hospital. They had to assess and make plans of how he will function when he is at home due to his mobility and balance issues. The OT explained that Bernie would need help with personal care i.e. washing, dressing and so on. She also stated the stroke has affected his cognitive function, especially, there were issues with his executive thinking skills and at the time that meant nothing to me. But as time went on it became very obvious what this entailed. He has difficulty in planning, organising and short-term memory recall. This has huge impact on our day to day life. This made worse by his lack of insight in his disability and thus causes so much frustration and strain in our relationship.
The home coming: I was told to make arrangement to pick my husband and I did this, with the help of our friend. He was brought out to the outside steps on a wheelchair. He looked like my husband but different, very frail and very unsteady on his feet. His speech was muffled but could be understood. The hospital discharge pack had much information about his meds and the procedures he went through as well as a number to the Early Support Team within our local authority. Their role would be to offer practical help and therapy. Yes, that would be fine. But in reality, the local authority support team was understaffed and very afraid of catching Covid. There was no hands-on support or offer of equipment for physiotherapy for the risk of contaminations. They came dressed like astronauts, full PPE. They made their assessment, identified some of his need and came back with computer printout of various facts on how to help him with his speech and exercises.
After, week 4 I was physically and mentally drained. I became very emotional and started crying at a drop of a hat and that was never me. The OT noticed the emotional strain taking hold on me and she assigned us an assistant to do a 20 mins session three times a week. That was fine but not good enough.
After six weeks, they announced they were withdrawing their support for we had had our quota and more people in Enfield have had strokes needing their services. I was distraught at the prospect of no professional help. No one to turn to. Even our GP is no longer accessible. When Bernie was discharged from The National, he was sent home with a discharge package, stating the importance of blood pressure monitoring by our GP. I rang to arrange for this to happen, I was told to buy a monitor and do it myself!
Life was bleak during this period and relying on emotional support from family and friends was not possible and I also learnt that some people are generally uncomfortable to be around sick people. The stroke has changed Bernie so much not just physically but mentally and people just can’t deal with this. So, they stay away and continue to do so apart from one set of close friends, man and wife.
Two months after the stoke, I was offered a lifeline, but I didn’t recognise it as that then. I was invited to join the NROL Carers’ café. I was initially very reluctant to join the group as I felt it was another thing to add on to my to do list. Never in a million years did I think or believe that it was an opportunity to do something for ‘Fatima’. I remember that first session when I was asked ‘How are you?’ my response was to break down in floods of tears. I couldn’t speak. I was an emotional wreck. I was not used to anyone asking how I was. If received telephone calls at home, it was always to ask how Bernie was getting on, but none ever asked about me. But now the carers café facilitator was asking, and she was taking an interest in me as a person. For the time it was about me rather than my stroke survivor husband. I was at my lowest emotionally and physically and overwhelmed by worries of caring for Bernie after a stroke.
The Carers’ Café was facilitated by the most sensitive and caring professionals and most importantly they provided medical advice on how to care for ourselves as well as our spouses/ family member who suffered brain injury. The forum was a place where I was encouraged to open up to the group about the challenges and, I was among other participants who were living my life, looking after a spouse, mother, or a father. It felt real, valid and game me a sense of belonging. I was part of a group who were going through the same or similar experiences due to our loved ones having had a stroke.
When I think back, I really believe that carers café offered me a lifeline and without it I shudder to think what would have happened to me and my husband, especially, in time of Covid. If it was not for NROL our isolation and anxiety would have been immense.
Caring for a stroke survivor is endless, thankless and bewildering. It is essential to have the right intervention at the right time in order that the stroke survivor recovers to his or her full potential without damaging the carer in this process.
When the NROL programme including the Carers Café came to an end at the end of the summer, due to the funding constraints, I agreed with the other participants that we should keep going on our own and with Bernie’s help to show me how Zoom worked, we have continued the Carers Café on a weekly basis and it's still going strong. The group have shown total commitment throughout and, if I may boldly claim, we also became good virtual friends. Some of our partners continue a similar forum with LEGS every week. Like NROL, LEGS recognises the need for continued peer support brought on by the challenges of being or caring for a stroke survivor.
During a recent session in the Neuro Café, the discussion was about taking up new interests and knitting or crochet was mentioned. My philosophy in life, especially during these later years, has been to say that if one door shuts another should open. So many doors had been shutting in my life (long distance walking, tennis, skiing) and knitting was one of them. Even hearing the word knitting that evening made me choke with sadness as I gave up knitting when I was diagnosed with my Parkinsonism 2 1/2 years ago and realised I’ve never said goodbye to it properly. The only door I’d opened was dabbing idly on my iPad at Word games, but I longed once more to feel the purposeful pull of the yarn through my fingers and to know that I was making something for someone who would love and appreciate it.
I resolved to re-introduce knitting to my life. This took quite a bit of organisation I can assure you as another thing I seem to have lost is the ability to sequence and organise myself. I had to search out the needles, find a pattern and find some yarn before making a little hat for the newborn son of one of my ex-pupils. It was a great struggle to get it completed as I kept dropping stitches and finding loops of stray wool or even holes appearing out of nowhere! However, I did finish it, wrapped it up and sent it over to the new dad who was absolutely delighted and sent me a photo of his small son wearing it.
Since retirement, knitting had become a central part of my life. My current project would accompany me everywhere and I would whip it out on trains, airports and whenever there was any sort of lull. It was such a pleasure to knit things for my grown-up children and also for grandchildren, and then I discovered the pleasure of sock knitting, and that was something all the family loved as they are all long-distance walkers and particularly enjoyed wearing a pair of granny knitted socks. But the biggest thing I’d been involved in started from spying a tweet in the autumn of 2013 from the producer of a film about a Lincolnshire family in World War I. She was looking for knitters and I thought goodness me this has got my name on it as have done much research World War I and also love knitting. What followed was one of the most absorbing and interesting projects I’d had the privilege and pleasure to be involved with.
Here is a link to the project: https://youtu.be/FAI35q5giJE.
The final event was an exhibition at The National Archive at Kew: