Real stories

Why Lasting power of attorney matters after a dementia diagnosis

I first noticed changes in Mum eight years ago, when she was 52 years old. I was nearly 16 and studying for my GCSEs. Mum often seemed distracted and not the least bit supportive or interested in my exams; it was really unusual behaviour for her.

Mum had become very forgetful. She stopped seeing her friends, hardly did any housework and was changing in personality.

She seemed to have very little empathy left or none at all.

She would put metal objects in the microwave and plastic items in the oven. As a dog lover (and dog groomer by profession) she had started to leave the front door open, something she’d never do because the dogs could run out onto the main road.

Together we rode horses, and it was a shared passion between the two of us. However, where Mum was experienced in driving the horse boxes and larger vehicles, she had become reckless and often drove erratically, endangering the lives of the horses we were pulling. I soon refused to drive with Mum.

‘At that time, my dad was in denial. Nobody had considered dementia as the cause of these changes.’

Only I could see that Mum needed help, but I was finding it more and more difficult to live with my parents. At the age of 19, I moved to Australia, where I stayed for six months.

A dramatic change

When I returned home, Dad was still certain there was nothing wrong with Mum. No support was in place. I felt isolated and in the dark. I also noticed my parents didn’t seem as close anymore. 

The world of horse riding is made up of mother/daughter relationships and I felt a deep sadness that I had lost that. I found it difficult to enjoy my love of horses because of the reminders of what was missing. My friends and their mums all had what I wanted but had lost.

I made the decision to move away from home but continued to visit Mum on a weekly basis. It turned into a regular weekend visit where I did the housework and both Mum and Dad’s washing. Around this time, I managed to convince Dad that there was something wrong and that Mum had to give up driving and working; she was a risk to herself and others. 

‘By this point, the changes in Mum were obvious.’

She’d often be approached by old friends but not recognise them. She didn’t seem to understand the value of money anymore and got herself into over £8,000 worth of debt with credit cards. She was also incontinent.

Even then, there was no belief it could be dementia, including by any professionals. Mum had completed a memory test and passed.

In the film below, Saskia talks about their difficulties getting a diagnosis and what she wish she'd known about dementia.

Hope of a diagnosis

In December 2019, having had an MRI, Mum was due to have a consultation with the brain specialist in Cardiff. We were hoping for a diagnosis, though of what, we didn’t know. 

‘Mum’s appointment was delayed by eight weeks, and then a global pandemic hit. No results were given.’

In 2020, I moved back home and became Mum’s full-time carer. When I had tried to hold down a part-time job, Mum would sit for hours on the stairs, not moving, enduring painful pressure sores.  

Dad was a chiropractor who worked from a home office, lecturing at a university twice a week. I felt the responsibility was falling almost completely on me, and I began to struggle with the personal care side.

Needing greater support

Social services were able to offer respite care every five to six weeks and Mum visited a care home for five days at a time. This really helped but we needed support at home, too. 

Our social worker arranged for a carer to visit once a day. The only slot available was the 30-minute breakfast one which started at 7.15am. 

The carer would wake Mum, wash and breakfast her, then leave. The visits became earlier and earlier, and the strain on the carers increased. They were starting at 6.45am and leaving before Mum had a chance to use the toilet. This left me with the task, at the start of a very long day.  

There was no more care available and with Dad working full-time, I gave up my job in January 2021.

My grandparents were both fit and healthy but struggling with their daughter’s condition. At the ages of 85 and 93 they couldn’t care for her, and since her decline have only visited once. Mum’s own siblings, a brother and sister, don’t help and have commitments of their own.

In August 2021, Mum made a permanent move to a care home, without a full diagnosis, where she still is today. 

Missing the Mum of old

In January 2022, we were given the diagnosis of early-onset Frontotemporal dementia. We realized too late that we would need Lasting power of attorney, and Mum no longer has capacity to consent.

The diagnosis was given because of the MRI from back in 2019 - the MRI we never got to follow up on due to delays and then the pandemic. 

So much has happened in between and Mum never got to hear her own diagnosis. Still, after all these years of caring, nobody has sat down with me and explained what has happened to Mum.

Mum can’t speak anymore and no longer knows who I am. I want my old Mum back, but I know that will never happen.