Leave No-One Behind

A moving account given by ‘Margaret’ a carer during lockdown.

Leave No-one Behind is a recent report highlighting the affect the pandemic has had on older people in Wales. Irene Mortimer, Dementia Co-ordinator shared the views of older carers with Helena Herklots – Commissioner for Older People

One carer ‘Margaret’ has shared an honest account of her time looking after her husband during lockdown. It is heartwarming, brutally honest and sometimes laugh out loud at the same time.

‘Good things also happened against expectation’

I am writing this on my 88th birthday. I have shared lockdown with my husband who has dementia. I am his sole carer, have a neurodegenerative disease and use a walking aid, but between us we make one good one. Sometimes!

Lockdown pulled the rug from under us overnight, taking away the secure network of support I have cobbled together to keep us safe in our own home. It so happened that as lockdown approached, our wills had just been redrawn, with the appointment for signing in the diary. My solicitor rang and informed me that he was obliged to close the office, but would get me the paperwork if I could find suitable witnesses. While the rest of the country was queuing for toilet rolls, I asked my Chapel Secretary and the youngest deacon to step in, set up the hall and porch as a temporary office, turned a dinner wagon into a desk which could be rolled forward for 6ft distancing, and just hoped everything would come to time. Strangely it was a very solemn occasion, and our youngest deacon took the finished documents by hand back to the office. Next day I received a call to say everything was finished securely. Only then did either party express the fear of not having our affairs in order as we faced the increasing pandemic.

Such innovation set the scene as we two set about housekeeping on our own. Neither of us can use the Hoover safely, or hang clothes on the rotary line without falling over, so our working days got longer and longer. Lunch moved to 3pm (we found Escape to the Country), supper at 8pm, to fit in with medication. Our lovely Girl Friday was happy to be employed as our shopper and gopher. She supplied washable carrier bags which I boil washed, drilled us on the latest safety measures, and was our only contact with the live world, except for the Well delivery drivers, (who we call our drug runners). I stopped watching any news programme featuring Coronavirus news, the distress my husband was suffering trying to understand the situation was too pitiful. So we plodded on until the end of April when two awful things happened in my life.

My husband began to lose his toenails for no apparent reason, with dramatic blood loss because of prolonged aspirin treatment. He has lost 7 to date, has bled anywhere and everywhere at each occurrence. Into bedding, on carpets, tiles, towels, through slippers, in the shower and all over my hands and clothing. I am fortunate in that I taught First Aid so that I could stop the bleeding given time and strength to apply strong pressure. But I am not qualified to diagnose the cause of the problem, nor spot infection, and It was then I saw the unseen side of the NHS, because it was only on nail 3 that any doctor was willing to call in a district nurse to support me, and even now at nail 7 no doctor will see him for a diagnosis. What saddens me is that none of the doctors I have spoken to has asked how I am coping, confirming my long-held opinion that Carers are just another tool to be used by the doctor until the patient’s problem resolves itself. The nurses are a joy and delight, however, and I bless each one. We all agree that salt solution is best for bloodstains, my expertise has been hard earned. I live with the dread of 3 more toes.

The other awful thing was that, despite having been in remission, my very dear friend of many years suddenly suffered a resurgence of lung cancer and over a period of 6 weeks faced the end of her life isolating, eventually with care support and end of life nurses, she spent her final days in hospital. We, her circle of friends, will regret the manner of her death for the rest of our lives, and each one of us is finding it difficult to come to terms with the manner of her passing. Her family asked me to write part of the eulogy and choose a hymn for her funeral, which was so difficult and emotional for me. I couldn’t understand my reaction because I am such a tough old bird. The gathering to see her to her final rest took place in the pouring rain, with so many friends standing lining the route that her nieces were completely taken aback. On that day, Monday 13th July, I was taken in my wheelchair, my husband at my side, four houses along to the hearse. I came out of lockdown to see one of the saddest sights of my life to date, and realised my world had changed forever. Everyone looked older, their hair had grown, they were masked and gloved, weary and subdued. Unrecognisable….no zest left, all of their passion for life had ebbed away.

But good things also happened against expectation. Firstly I have become far more connected through knuckling down with my iPad. When my niece ran out of bedtime stories for her grandsons, I wrote them a serial that went on for weeks, with their father as the superhero and occasional appearances of themselves. I had no idea I could write for children. That led to me writing them poems about pirates that they copied out for Key stage 2, and then illustrated. This treat was allowed after their set schoolwork. Wonderful feeling to be useful at my age. I have been surprised at the number of younger people who have turned to me for emotional support, some I barely knew but were obviously deeply affected by such a sudden adverse course of events. The first question was always… ‘Was it like this in the war?’ My answer was always to tell them not to worry until their call up papers came, and the underlying anxieties came out slowly after a laugh. An odd way to form a friendship.

By the VE day celebrations, I had been too long away from my brother, who was 85 on 6th May. We are very close, having endured bad war experiences as children together. Losing our home, being buried under the rubble which came down on the air raid shelter, evacuation, going from one school to another had forged a link that has taken us through life. My husband also lost his home in the Swansea blitz, and we three needed to be together. So I planned a Victory tea, we put flags up in the garden, obeyed all the rules and reminisced about it all. The paste sandwiches, scones and trifle were as near as I could do, and went down surprisingly well. I put together wartime selections on YouTube and ended the party with Noel Coward singing ‘Don’t let’s be beastly to the Germans’ in a poignant memory to the childhood we never had.

We had a whole week of celebration starting 31st May, my husband’s 88th birthday, followed on 4th June by our 65th wedding anniversary. I planned a birthday cake and he was really spoiled with cards, parcels, a balloon (which he loved). We did not think anyone would remember our anniversary, as there are only 3 of the guests still alive. But we suddenly were asked for a photograph because S4C wanted to include us in Prynhawn Da, and we found ourselves in the middle of a three-day event! Blizzards of cards, some beautifully home-made, arrived by post and by hand. We had so many flowers that at our age we might well have been in a Chapel of Rest! Cakes galore, some with freezing instructions by home bakers wanting to save me work, and to cap it all a lady, now in her seventies who had been a 7 year old in my Sunday School class and sat with her aunt in the congregation, turned up with a bouquet for THE BRIDE. Such a day of laughter and tears only came about because of lockdown. Then for days following phone calls from people who knew us and had been watching the programme. 

We were so grateful and uplifted. When you don’t have your own children, it is emotionally touching to receive the kindness of unexpected remembrance. I have found during lockdown that my membership of the chapel has been my mainstay, and the ingenuity shown by our Minister and the deacons in keeping us together through Zoom services and volunteers has brought out the best in individuals, and moulded us as a family. Early on in lockdown I registered with Dr Mike Ward, Senior lecturer in Sociology at Swansea university as a diarist using the Mass Observation technique This involved writing a daily diary of the events in my life as they occurred under lockdown. I realised that the bulk of the evidence he collected would come from lower age groups and there could be a danger of the voice of my generation going unheard. To my surprise I was up and running in a couple of days. I have found the experience cathartic. I have also liked the discipline of submitting my work for appreciation, as it has returned me to academic rigour and disciplined my mind. Dr Ward’s attitude throughout has respected the ME that I was before I became a carer.

At last I am in the swim again and shall be the participant observer on the record and speaking for the age group with the weakest voice. Very good for me. BUT…. what an unfitting end of life it is proving to be to those of us who have had our lives topped and tailed by catastrophic national crises. I trust that we shall be remembered for being the last of the best.

Download HERE the full report ‘Leave No-one Behind.’