Steph Redfern Oakes has been caring for her mum, Teresa, since she was diagnosed with CBD in 2016. Here Steph tells us about her experience and how PSPA has helped.
“My mum Teresa was diagnosed with CBD in 2016 at the age of 58. Initially, her symptoms began in 2015 where her hand wasn’t responding, and it was curling into a claw like shape.
Mum was a specialist nurse with RGN and RMN training and so she thought it might be arthritis. She went for tests at a specialist hospital in Liverpool, but they couldn’t find anything wrong on the scans. She continued enquiries and they misdiagnosed Parkinson’s. It was not until a year later when visiting a movement and brain specialist, Dr Hindle, that he immediately recognised mum’s symptoms and diagnosed CBD. It was through Dr Hindle, we found PSPA who have been great at recommending different resources which may be helpful to understanding CBD.
When mum was diagnosed I had just accepted a graduate job in a boarding school in West Sussex. I would come home every few months in the school holidays and help with mum’s care. At first this was helping with meals and helping mum get into the shower as her illness was in its early stages and symptoms were not advanced.
However, by Christmas 2017 things had rapidly shifted and mum was not able to swallow anymore. She was hospitalised with malnutrition and she made the decision to have a feeding tube. Shortly after this that mum lost her speech too. It is because of my unique bond with mum that even when she lost the ability to communicate verbally, I have, most of the time, been able to understand her needs through her eye movements or the noises she makes.
I moved home at the end of 2018 as mum’s needs had progressed. I was still working full time, but I saw mum most days and helped where I could. By April 2019, I found a part time job at a care agency and realised I had got myself into the position of caring both personally and professionally. Whilst I enjoyed my job, I felt that mum needed me more and so in October 2019 I resigned my role and decided to help dad look after mum full time.
I was so pleased to receive PSPA’s Carer of the Year Award in 2021 as part of the 10,000 Voices campaign. It meant so much for my caring to be acknowledged and it was a huge boost for my self-esteem.
I got married on 19 February 2022 and I was so pleased mum could attend. I washed and dressed her in the morning and then got myself into my wedding dress! I could never have imagined being a carer on my wedding day but it meant so much to me that mum could be there.
We made the decision as a family in September 2022 for mum move into a nursing home. I am pleased mum has settled in and I visit three or four days a week. It is nice to have the time to be her daughter again rather than just her carer. She has a lovely garden view with squirrels and birds. We sit outside in the sunshine and she laughs with me. It feels very precious. The staff are helpful and mum feels safe. I still maintain a little of my caring role – the nursing home supported me with their bespoke movement and handling training which means I can shower mum and I do that once a month now. It is hard to just leave a caring role because it becomes part of your identity when you have done it for so long. I have found that caring for mum was often an opportunity to bond during a very difficult illness.
Dad cared for mum at home every day for six years. He is such a strong example of resilience and commitment. Mum and dad recently celebrated 44 years of marriage and I am so proud and grateful for them both. Their marriage is a true testament to the vow “in sickness and in health”.
I cared for mum at home part time for three years and full time for three.
PSP & CBD are such difficult and unpredictable illnesses and there is no handbook for how to deal with them because of how rare they are. However, we are so proud to have been able to keep mum at home where she wanted to be, for as long as we could.
Since being sign posted to PSPA, I received support from their Youth Support Group. It has helped me feel less alone as a young person caring for a parent with CBD. The WhatsApp group we have has been a source of practical help as well as huge emotional support.
I have also attended PSPA’s Carer Pamper sessions. Caroline really understands the needs of carers and she makes you feel very valued and special in the work she does. She prioritises self-care and encourages you to take a little time out of the day for yourself even if you only have 10 minutes!
Earlier this year, I was so grateful to receive a PSPA Support Grant. I found out about it through the newsletter and searches online. Originally, I thought it was just for people living with PSP & CBD so when I read that carers could apply too, I felt really valued, as we are often the forgotten ones! The application process was so easy and I spoke to the Helpline, who were so supportive and helpful.
The grant enabled me to book a hotel and have a holiday with my husband to celebrate our wedding anniversary. I hadn’t had a day off caring in three years. It felt like a breath of fresh air to be able to rest and spend some quality time with my husband. It made me feel so valued as a carer and it really felt like PSPA listened to carers’ needs and helps them to get a break from the relentless nature of unpaid caring.”