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Ela’s story

Maintaining grandma’s quality of life is really important so the grant for clothing will really help.”

Ela Jones was awarded one of the first three PSPA Support Grants in October 2020, and here she shares how it will help her grandma, who was diagnosed with PSP in May 2019.

“Me and my grandad were over the moon when we found out my application for a PSPA Support Grant had been successful.

I applied on behalf of my grandma who was diagnosed with PSP in May 2019, around two years after her symptoms initially started to show, and her weight loss has been progressing alongside her illness.

Initially grandma was diagnosed with vascular dementia, due to the memory loss and behaviour changes she was experiencing, but a physiotherapist spotted she was having problems with her eye movement, and a referral to a neurologist established it was PSP soon after.

Grandma had always been a really proud lady, with a keen interest in shopping. Most weeks she would visit the shops once or twice a week, buying a new top or other item of clothing to wear, so she was always really well dressed. The continual weight loss, of around three or four dresses sizes to date, caused by choking on food, forgetting to eat and refusing food due to paranoia, has been difficult to see.

I spotted a newsletter from PSPA highlighting the PSPA Support Grants earlier this year. Not long after, grandma’s Community Psychiatric Nurse mentioned it to me also, which inspired me to apply for a grant for grandma to buy her some new clothing, at regular intervals, to help keep up with her weight loss.

Maintaining grandma’s quality of life is really important to our family and we feel clothing is central to this so the grant will be really helpful, particularly in the run up to Christmas.

The COVID-19 crisis has made shopping for grandma really difficult, so we plan on using the grant to buy her clothing online. We will give her some new clothes as a nice treat for Christmas but we will also plan ahead, and buy some smaller sizes so she continues to look good as her weight loss continues.

Grandma is happily living in a specialist dementia unit, where her every need is catered for. She moved there around June, after her symptoms progressed rapidly and caring for her at home became too much for my grandad, my mum and me. It often would take the three of us to get grandma up and move her around the house and her behaviour changes and regular UTI’s had made things increasingly difficult.

Grandma’s Community Psychiatric Nurse helped us find a suitable home, providing a list of recommended venues. I whittled them down to three, and then choose one we thought would be suitable for grandma, following numerous phone calls backwards and fourth, prior to her admission to arrange and organise everything in order to make the move from hospital to the home, as smooth as possible.

She does and will continue need assistance to eat but the staff at the home have been fantastic with helping with this and keeping us all in touch with her. Whilst closed to visitors due to the virus, the staff regularly instigated Facetime calls once a day and would take calls around three times a day from me, as I checked up on how she was settling in. They also call me to help calm grandma down, if she if she is worrying about her food or drink, which is really reassuring to us all.

We do now get to visit grandma at the home. They allow one visitor at a time inside and up to three visitors outside the window. It will be great to see her in her new clothes at Christmas, although I know my grandad struggles with the fact he can’t give her a kiss or cuddle at the moment.

I would definitely recommend applying for a PSPA Support Grant. The process is really easy and as care needs of loved ones increase, its great to have funding support available.”