Hello, I’m Rebecca and I am a carer for my mum and my brother who both have Dementia. This is my story.
My mum is 89 and has mixed Dementia , my brother is 53 and has Downs Syndrome and Alzheimer’s. My mum lives with my dad who is 79 and is on the Autism Spectrum and my brother, who has lived at home with them for 53 years.
My story starts during covid. My mum and dad isolated for several months at the start of covid and my mum was my brother’s main carer. I stepped in to provide support in any way that I could, including taking my brother out as much as possible.
I do have a sister, but she lives in Eastbourne and so was not available to provide support.
As time went on and mum was able to go out again, it became clear that things were no longer the same. My mum had lost her confidence and appeared more vulnerable and less able to do things, especially going out with my brother alone.
I was working full time with learning disability in supported living at the time. I adjusted my working arrangements so I could support them to go out in the community.
Three and a half years ago, I noticed small changes in my brother’s memory and focus. I was working in supported living with Learning Disability as a senior at the time. I had been supporting two ladies with Down Syndrome and Dementia, so I was aware of subtle signs. I had training in Dementia and had even delivered some Dementia Awareness courses as an Adult Learning Tutor in the past, so had a good awareness of Dementia. However, that did not prepare me for what was to come and the distinct difference in working professionally and caring for your own family.
I requested support from the Learning Disability Team at Flatts Lane regarding my concerns and my brother's Community Nurse and Psychiatrist started the assessment process. It took about eighteen months for a formal diagnosis to be made, due to requiring baseline assessments and repeats.
My brother was put on Dementia medication and this helped to settle and improve things. My brother has always had behaviour that challenges so this was just a normal part of life for us anyway. But it did help with mood, attention and tiredness. My brother had lots of support from Flatts Lane with regular visits and they were always there if I had any concerns. The day centre, which he attends four days a week have always been very supportive and they maintained continuity and communication.
Three years ago, my mum had a bad fall and hurt her lower back, this disabled her for several months. This led to changes in mum and she was never the same again. Mum stopped doing things, stopped cooking, stopped housework and showed signs of low mood. Her mobility did improve, but she never really returned to what she had done before. This increased the support I had to provide and I took over some of the tasks. Helping mum with personal care, laundry and housework . I was still working full time at this point and going after work and on weekends to support.
Several months later, I supported my mum and brother on holiday and this raised concerns regarding my mums behaviours, her memory, mood and focus . At that point my thoughts were that she had dementia. It took me several months after this to get her to accept we needed to speak to the GP.
Eventually I arranged an appointment without her full knowledge. Referrals were made by the GP, but they actually weren’t. So I ended up having to chase this up. Eventually after several months, the assessment process began and a diagnosis received nine months after first speaking to the doctor .
During this time, I was in the process of change at work due to a change of provider. This led to me requesting voluntary redundancy.
Mum had started to have more falls, four over four consecutive months , so it was challenging. I had four months off work before looking for a new job and I loved it. But I needed to return to work as I was single , financially independent and a mortgage and bills to pay . It became clear, with my carer responsibilities and the amount of support needed, that I needed a job with flexibility and decided on an agency position .
Due to further falls risks, I put a lot of resources and equipment in place to mitigate risk and to aid mobility and function. Mum wasn’t particularly happy and had little understanding of the risks. By this time she was pretty much 24-hour care , she didn’t do very much for herself and required support around most aspects of her care. Mum struggled to accept her diagnosis and limitations – she still does. Mum has blamed her back problems throughout, I feel this is her way of coping.
Mum was supported by Reed Marsh House for a period after her diagnosis. She attended cognitive stimulation therapy which she enjoyed, it also gave me and dad a break. Support workers provided information and advice, I had already accessed many of the suggestions such as attendance allowance, council tax reduction etc. We had a few more visits and then she was discharged.
During the diagnosis assessment processes, I searched for activities and resources, I came across a list on Redcar and Cleveland council website. From this we started with Daisy Maes – singalongs, were we met Marie. Marie suggested we came to the dance at the Memorial Hall and we joined the next week. We have been attending for around 18 months now. This has been a godsend, mum loves music and dancing , as do I. We have made new friends and received so much support, encouragement and a listening ear. It really is the best place. I can talk to others, gain information, insights, advice. I learned some line dancing and did a bit of singing now and again.
Through Dementia Action Teesside I was invited to attend the Teepa Snow’s workshop at Middlesbrough football club . This was very informative and I actually felt like me again attending training and being with like minded people .
For around a year, I was working and caring. I was finding this very challenging as needs had increased, particularly with mum, It was becoming more difficult to manage. I was picking up night shifts and back shifts, after already doing as much as I could for mum, dad and my brother .
Mums needs have continued to increase as she has declined. My dad has increasingly found it difficult, particularly managing my brother. There was an Increase in sundowning, behaviour that challenges alongside declining skills. I provided as much support as I could to my dad, but things were becoming overwhelming this time last year.
I was a carer, chief cook and bottle washer, housekeeper, PA, admin and general Jack of all trades. Well, that’s how I felt anyway.
The more I did the less others did. I sought support from Adult Social Care to gain paid PA hours for my brother, to enable a reduction in external work hours. This really helped, I could slow down a bit.
Last August , the perfect storm. My dad was diagnosed with Chronic Lymphatic Leukemia. My mum was further declining and my brother had a number of early morning tonic clonic seizures. The first resulting in a broken ankle , the second a serious mouth injury on the morning we e were going on holiday and the third during the holiday, which I witnessed in full at 4.45 am .
When we returned home my dad asked me to take my brother to my house , he couldn’t cope any more. My brother stayed with me for a few nights, but was getting up in the early hours and wandering , he had a fractured ankle in pain and confused. I couldn’t keep him safe.
I made the difficult decision, to seek an emergency placement for my brother. Conversations between myself, my dad and my sister, led us to make the decision that long-term care was the best option. I couldn’t have him full time due to work commitments, supporting my mum and dad and the financial strain.
There have been challenges over this decision. My mum has struggled to accept it, she never wanted him to leave home and could not understand that she had no ability to look after him and dad was at the limits of his capabilities.
This led to a very stressful time. But there was also some relief, I made the decision to access homecare for my mum, as it was becoming more difficult to look after her especially in terms of personal care. She was becoming more aggressive and her needs were increasing, as she needed support throughout the day. She was reluctant , but my dad came to the realisation that they needed help.
I still have a lot of caring responsibilities, still looking after mum and dad and as a PA for my brother. Advocating for them, attending meetings and appointments. community access and domestic . However it has allowed me to get some life back, some time for myself and to do things I enjoy, which hasn’t been the case for a long time.
My mum has got used to her carers and dad loves having people to talk to coming in regularly. This takes the heat off me being their only contact and support and the only person they see. My sister comes regularly and I get more time to myself. I still support my mum and dad every day, cooking tea, doing housework, doing all their admin and appointments, but I do have more time for myself.
I still support my brother two days a week as a PA. I did think that a new place might have been found for him by now. But, there is nothing currently, so he remains at Marske Hall . It’s not ideal, but satisfactory for now. After having him home for several nights over Christmas and new year. I decided to have him home each weekend, sat 9 am till, sun 6 pm. It does have financial implications for me, but is best for him
I have started the START course through Teesside Mind a few weeks ago which is friendly and informative and a good opportunity to learn more.
I joined my local choir after several people had said I should join a choir , as I have a good singing voice . I was welcomed into the choir and have now done two concerts helping raise money for good causes,I have made new friends and it brings me joy.
I joined a line dance group and I'm learning new dances and getting more proficient, again making new friends doing something I enjoy, relaxing and improving my wellbeing.
I’m now working with Daisy Maes Tea Room and my choir to continue Tea Cups and Tunes – with Dementia Action Teesside continuing to work with Lets Sing to start a new singalong session in East Cleveland. We had our first session beg Jan and it went really well and we plan to have a singalong every two weeks, increasing from monthly sessions. So a great result for everyone.
Having people committed to supporting carers like me and those with dementia like my brother and Mum makes our journey that little bit easier.
Thank you for allowing me to share my story. I hope it gave you a better perspective on the life experience of carers and of people with dementia and why it is so important to promote dementia friendly communities.