Honouring Susie’s Legacy: A Collection of Handmade Embroidery
Caroline has kindly donated her late mother Susie’s handmade embroidery pieces after her passing earlier this year. Despite a difficult journey, Caroline has kindly shared their story below. Susie’s beautiful embroidery prints are available to purchase in our online shop here.
Susie was always artistic, but her love of embroidery began in the early 1980’s when she took a City & Guilds course in Needlework. This soon led to a desire to pass on all she knew to others and she took a teacher training course and began to teach adults. Susie had endless inspiration. Her use of texture and colour was seen in every piece she created and she was able to shower her students with her ideas and skills so that they too had the chance to create their own beautiful works of art by following her lead. She held bi-annual exhibitions of her students work and many of them created panels for the Millenium Embroidery which is on display in a purpose built gallery, opened by the Late Queen Elizabeth II in Sunbury-upon-Thames, where she taught.
Susie was happiest with a needle and thread in her hand, so when MSA struck and she no longer had the dexterity to continue, her career stopped.
In addition, at the same time of trying to confirm a diagnosis, her husband passed away suddenly and within a year Susie was also diagnosis with stage 4 dementia; the MSA had been masking a lot of the symptoms. So we, her daughters had 2 degenerative neurological diseases to contend with.
We knew we had to prepare for the future as our journey was only downhill from then onwards, so we planned!; LPOA we already had, but we consolidated finances, bought a funeral plan, signed up to brain donation and took up the Voice Banking opportunity with MSA and then tried to get on with life!
While still living at home, Mums falls became more frequent as did the resulting trips to A&E. Bladder incontinence resulted in an indwelling catheter, but the dementia caused Mum to forget to open/close the valve causing frequent accidents. A urine leg bag, did not help as she would take off the bag and not close the value. Domical carers came in more often, but the agitation from dementia was taking hold and after a bad fall, live in care was arranged. Social services could not keep up with the deteriorating situation quickly enough and the live-in daytime carer was getting desperate as Mum’s nocturnal activity, was nightly and something we had not known about, as no one was living with mum to know she was getting up so much. What we thought would be respite for a couple of weeks in a care home, while we sorted out the right equipment and care became permanent as she was being looked after in a safe and secure environment 24/7. Mum was soon placed under a DOLS (Deprivation of Safeguarding Liberty) as she had no mental capacity. A year later the swallow began to diminish and her memory was much worse. She began to lose interest in activities, then had trouble swallowing fluid. She was past being able to use the voice banking due to lack of understanding. The SALT team advised thickening her drinks and mashing her meals. This lasted 5 months. This was no longer our Mum. She wasted away as her brain was dying and we had to watch, unable to do anything other than visit and tell her we loved her. She died peacefully on 3rd July to the relief of us all.
The MSA Trust was a guardian angel we could access and feel they understood us and the journey we were on.
However, with both diseases we had a very hard, long and difficult road both physically and mentally from 2018 to July 2024.
Disclaimer: The views and opinions expressed in the blogs published on these pages are those of the authors and do not necessarily reflect the official policy or position of the MSA Trust.
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Thank you for bravely sharing such a vulnerable story! Your Mum sounds like a wonderful woman – her work is so beautiful. X