When Anita was diagnosed with dementia, there were initial feelings of disbelief and anxiety. Her daughter, Cara, shares how she helped to find support services that suited her mum's interests and advocated for Anita as her Power of Attorney.
People often think that when you get a dementia diagnosis, after that it’s all downhill and doom-and-gloom. But I can honestly say that my mum's last few years were very happy ones.
Mum worked hard, and played hard
My mum brought me up on her own as a single parent. It was just the two of us, which wasn’t always easy, but we were very close.
Mum worked hard, but also knew how to have fun. She never took life too seriously.
Dancing was her favourite thing to do, particularly the rock ‘n’ roll jive. Mum was in her element on a dancefloor. She used to take me dancing as a child. We always had music on in the house.
Mum had an adventurous spirit. She was good at trying new things, although she wasn’t always successful at D.I.Y!
Mum had a variety of jobs before I was born. She worked in fashion stores, casinos and even at Butlins. When Mum worked in London bars in the late sixties and early seventies, she once pulled a pint for Mick Jagger!
Mum was always great with figures and finances, even later in life. From around the time I was born in the late eighties, she committed to a career in bookkeeping.
As Mum moved towards retirement, she continued to live an active life.
She’d learnt a new sport in her fifties (tennis, which she loved) that provided her with an excellent social life, along with her dancing.
She finally retired at 65 – around the same time she received her diagnosis of Alzheimer’s.
Adjusting to the dementia diagnosis
When Mum initially got her diagnosis, there were feelings of disbelief. We wondered, ‘What would this mean for us?’.
I think a lot of Mum’s friends found her dementia difficult to accept.
It must’ve been unnerving and upsetting for them to see their friend had changed so much, especially over the coronavirus lockdown.
Wining and dining became less appropriate for Mum. She had anxiety around her memory loss and would find some situations overwhelming.
But some of Mum’s friends knew how to adapt social events to make her more comfortable. Rather than big groups or parties, they would arrange smaller meetups or see her one-on-one.
To avoid busy or noisy environments, they would go on walks, take Mum to dementia-friendly cinema screenings or have picnics in the garden.
I was proactive in finding local services, like Dementia Cafés, that would suit her. Mum joined new art groups and took part in dementia-friendly activities run by the Southbank Centre. There was singing, film-making, and her favourite, (B)old Moves, which was a series of dance workshops.
Dementia support at home that suited Mum
Mum began to make a few new friends. But her main support network had always been me, which at times was incredibly hard.
When Mum needed help at home from carers, it wasn’t easy at first. Her ‘no fuss’ attitude meant she found it hard to accept help.
Mum had never been in a position of receiving support before. She had always lived alone and wasn’t used to being cared for.
We found it helped Mum adjust to the situation by making it seem like she was helping someone else.
For instance, we’d ask Mum to make the carers a cup of tea, which she was eager to do. Mum also thought her live-in carer was a lodger and she was helping them with somewhere to stay.
Mum also benefitted from the stability and routine that the carer visits brought. This helped her anxiety and she ended up building lovely relationships with them.
Mum was always able to connect with people, despite her condition. And she never lost her sense of humour and cheekiness. She had a great ability of seeing the funny side of things.
One time when she was fed up of being in lockdown, Mum sneaked out of the house, went to the local Tesco, and made her exit with a load of Snickers bars – nothing could keep her away from the chocolate!
Making the decision to move to a care home
Eventually, the time came when I needed to think about Mum going into a residential care home. I was expecting my first child at the time and things had become even more overwhelming.
As her Power of Attorney, I often had to put myself in my mum’s shoes and be her advocate. I had to really tune into how Mum was feeling when she became less able to express herself.
Everything Mum ever did always had me and my needs in mind.
That’s why making the decision to move to a care home would’ve been the choice she’d have made herself if she had capacity. I knew, without a doubt, that she would’ve wanted me to focus on becoming a mum.
Once at the care home, Mum built wonderful relationships with the staff there, too.
Knowing that Mum loved to work, the carers asked her to help manage their shopping lists and receipts. I could see they really understood her. (They also had to hide the chocolate bars from her!)
The care home staff were especially amazing in her last few months. I can’t thank them enough.
Redefining our relationship
For me personally, it has been a difficult journey but a privilege and a joy all the same.
The Alzheimer’s gave us the unique opportunity to redefine our relationship.
Mum and I had always been close, but I’d gotten to know her on a new level. I came to know her as a whole person and not just my mum. We bonded in a different, but special way.
Although there were moments that were tough and stressful, I really loved hanging out with my mum. It taught me to be more present and enjoy the moments we had together.
We danced together and sang together, went for walks together and observed nature.
Even though memories fade, the connections between us remain.
The bond I had with my mum deepened through this experience and I know that I will carry her always.
Lasting power of attorney and dementia
A Lasting power of attorney (LPA) is a legal tool that lets you choose someone you trust to make decisions for you.