A personal and heartfelt story: Music & My Mam

    A personal and heartfelt story: Music & My Mam

    By Clare Louise Childs . Published 2020-12-15

    BOLD-Wellbeing

    ‘How Music has helped me cope…by helping others‘


    In March 2018, my husband & I welcomed our two new bundles into the world – our first children – Boy/Girl Twins. Just four short weeks later, amongst no sleep, feeds, nappies, juggling two newborns (not literally), we received a phone call that I would later realise to mean life would never be the same again for us. My Mam had collapsed, had a heart attack & cardiac arrest, was extremely lucky to get to the hospital and was fighting for her life. She spent 3 weeks in critical care & the cardiac ward in hospital. That time is a bit of a blur now – between small babies, hospital waiting rooms and trying to update our family and friends… However when Mam started to recover, it was clear something wasn‘t right. A few months later after a brain scan and memory assessment she was diagnosed with Vascular Dementia aged just 67.The next 18 months were a muddle of how to cope with this new version of Mam, questioning all the signs that were obviously there and we had no idea that it was early signs of dementia, reading books, asking for help and mainly just day to day struggles. It’s easy to feel helpless, you can‘t change the condition, you can‘t help the condition, it’s rock or hard-place constantly, feeling failure daily and realising that these last months / years with your loved one could be strained, stressful and painful. To try and help, we even tried moving in for 4 months with our baby twins and springer spaniel, but eventually we became too chaotic for the household and again feeling like we failed, moved back home. “There‘s Dementia cafes, support groups, carer support groups, day centres“ we were told – but it always came back to the same issue – Mam is in denial and forgotten her diagnosis - she doesn‘t remember she has dementia so she won‘t go willingly! So I set up a singalong…in a local care home – ‘Dementia friendly‘ although I never labelled it. I found a local dementia specialist care home who were happy for me to volunteer and I started two singalongs a month. My friend brought my twins along with other friends toddlers and it became inter-generational too which was a great addition. We sang themed songs with song sheets - Mam and others loved it, joining in when they wanted, many of them singing along. Often words in conversation were strained, yet they would sing every word of their favourite song!Despite all my efforts, this was only 2 hours a month where I was doing something that helped and it became harder and harder to entertain someone who was very depressed at home, with little short term memory, constantly losing everything, often defensive even when you are trying to do your absolute best. There was the practical side – tablets, making sure she had them, insulin to someone who doesn‘t remember they are diabetic, appointments – making up creative storylines to get her to her appointments / tests. Then there’s the emotional side, why is my wife being so hard on me when I‘m doing everything I can, why is my Mam so unsympathetic to how much I am trying to juggle with new children and trying to help her? And my conclusion is that it is not my Mam, it is Dementia – which I hate it so strongly – the disease that’s robbed my Mam from her caring and loving roles as wife, mother, grandma…. But this is the hand we have been dealt and we have to do our absolute best by her to never have regrets that we didn‘t try everything to help.And just when you think it couldn’t get much worse…. March 2020In early March, Mam attended one day centre, had 2 carers for respite, 1 personal carer and my Dad was doing an incredibly attentive job caring for her day and night. Then a global Pandemic hits… I called Dementia UK in tears – how do we cope with the least amount of support, carers furloughed, personal care cancelled? So I took over the personal care, Dad had the least amount of support and Mam just got worse and worse over the coming months, wanting to get ‘home ‘from her home of 40 years, going wandering, compulsive eating, mentally very down and agitated, with no help allowed from her lovely friends who usually would visit, take her for a walk and keep her happy. We had to make the heartbreaking decision to move her into specialist care in July 2020 which is a guilt I have never felt before. Heart wrenching worry – are we doing the right thing? Is it the right time? Will she be ok? Will we be able to visit?Obviously my singalong got cancelled in March 2020, I did one outdoor performance, but as the units were isolating in different parts of the home, it couldn‘t work. It was then I came up with the idea to go online to support the carers in that care home to keep music going for the few weeks. But lockdown went on and on, I sang a song every Thursday night for the #clapforcarers and put the videos online. And as I couldn‘t get back into the care home, I just kept recording songs. Since March, I have recorded over 70 videos which have now reached 100,000 views on Facebook shared with carers, families & care homes. This is beyond what I ever could have foreseen!This Christmas will be a hard one for us - first without Mam at home. This time of year can be especially tough for families with dementia, so I decided to do a project to help support the carers, care homes and families. I have organised a Musical Advent Calendar - a daily musical video each morning featuring different people, instruments, songs and carols. There is everything from Christmas songs, children performing, carols, family groups and professional performances. This is for everyone - to keep people going and feel supported in these hard times - a sense of community in times of isolation. And the goal to reach far and wide came even more real thanks to ITV National News who put the story out on 1st December including my Mam‘s reaction to my musical advent calendar! You can watch it on my Facebook page or YouTube
    27 minutes in My Mam always taught me to be kind, and in 2020 we have all needed kindness, friendship and support. I try and live my life the way my Mam would have wanted and I hope she would be proud of everything we all try and do for her. And finally, I would also urge you all to use music, for your loved one and for yourself - reflect, sing, cry, dance, imagine – it’s the most powerful and wonderful tool we are lucky to have in our lives.You can see all the videos on FACEBOOK Sing from the Heart - Harpenden https://www.facebook.com/claresingfromtheheart/YOUTUBE Sing from the Heart HarpendenPLAYLIST Songs https://www.youtube.com/playlist?list=PLILE2fquUYF0EJQpUWCBDqM_sFYao-vR6PLAYLIST Musical Advent Calendar https://www.youtube.com/playlist?list=PLILE2fquUYF2Vaa3KvCkOK8HPheIGB0saINSTAGRAM @singfromtheheartuk TWITTER @singfromthehea1

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