Real stories

Caring for my mum with dementia will strengthen my relationship with my own child

Deterioration, decline and degenerative are all words associated with Alzheimer’s disease. At the beginning of this journey, they were just synonyms I read from the internet.

However, now I can fully appreciate their meaning. I know their impact on my dear family and Mum, Sandee, who was sadly diagnosed with early onset Alzheimer’s in 2014 at the age of 61.

My baby boy, Luther, was born on 5th July, so this has been a very reflective period for me.

I had so many questions throughout the pregnancy, missed opportunities, scans, appointments, shopping experiences and joyous moments that I know my Mum would have been delighted to have been able to share with me.

Noticing changes in Mum

I was 17 when I started to notice that Mum was not quite herself and was becoming forgetful. This was obvious through the simplest of tasks.

She would put a wash on, forget she had done it, and put the same wash on again.

Initially I thought this might be menopausal but over time things became clearer – her short-term memory was suffering.

I started to make excuses in my head. Mum was just tired. She was a support worker at a comprehensive school which required energy, attention, and resilience. I had not even considered that this could be dementia. 

I left home for university at 18 and came home during the holidays. These occasional visits made these skills Mum was losing more obvious to me.

I thought about Mum a great deal whilst at university and I started to research her symptoms in my final year. I watched YouTube videos on short term memory loss, because at this point her long term memory was excellent. 

Lara noticed changes in her mum at a young age

It was very hard to watch, but I wanted to feel prepared to educate my family and friends.

This was when I started to accept and process that she might have dementia.

Mum’s symptoms progressing

Mum became less proactive within the household, meaning Dad picked up all duties.

My parents were part of a close circle of friends who regularly went abroad as a group. Mum had such a love for travel, history, and architecture, but these trips and her involvement started to fade over the years. 

I started to notice at social gatherings that Mum became quieter, introvert and was more of a listener than a talker.

This sense of ‘retreating away’ made me recognise that things were getting worse.

When I’d come back from university to live at home, there was no room for ‘protecting me,’ I witnessed first-hand how vulnerable Mum had become. I noticed her reliance on my dad day to day. 

We kept these changes within the family and were all confidential until we had a confirmed diagnosis.

Getting Mum her dementia diagnosis

In my early twenties, Dad took Mum for regular memory assessments. Her scores were getting worse.

I remember as clear as anything the day that Mum and Dad told us about the diagnosis.

All five of us were sat in the lounge together. Dad spoke very clearly with his hand resting on Mum’s lap to comfort her. Mum didn’t know where to look. She looked timid.

Naturally, Dad took the lead with the conversation as he is the pillar of our family.

One of my brothers was quiet and deep in thought. My other brother said, ‘What does this mean?’ Since Dad’s mum had had Alzheimer’s, he was the only one who truly understood the difficult road ahead.

The communication between myself, Mum, Dad, and brothers could not have been stronger throughout this heart-breaking process. 

It’s a testament to the upbringing we’ve had and the love our parents have shown us.

Watching Dad become Mum’s carer

Over the last eight years, my Dad has cared for Mum 24/7. I have watched with complete admiration the dedication he has shown stepping away from employment, social events and not pursuing his own interests and hobbies to keep my Mum safe and well.

It’s a true depiction of their wedding vow, ‘in sickness and in health'.

At home, we have watched Mum change. The lack of ability to stimulate herself, join in with conversations and activities, not being able to write, feed, wash or change herself, the high level of incontinence and the hallucinations. 

Dad would often put on several washes in a day. He’d get up in the middle of the night to deal with ‘accidents’. His patience has been tested throughout but his devotion has always shone through. 

Like a lot of other carers, the coronavirus lockdown had a big impact on my Dad. I could see it was affecting his own health.

It was decided in January 2022 that it was time for Mum to enter a care home.

Adjusting to life in a care home

I went to see Mum at home a couple of days before she moved. I did the usual routine: washed and changed her, administered her medication. As she stood in front of the mirror brushing her teeth, it dawned on me that this was the last time I would do this in the family home. 

I started to recall the moments I had spent as a little girl in this same bedroom, helping Mum get ready for evening do’s – choosing her outfits, jewellery and make up.

I stared at Mum wishing things were different. I have been robbed of so many years with her.

I will never forget the day I went to see Mum for the first time in the care home with my Dad. Nothing could have prepared me for the moment that I first saw her.

I knew it was the right decision that she was in care but for a split second I wanted to take her home. She appeared unsettled, was struggling with spatial awareness and I could now see how she was having regular falls.

Going into hospital

Very recently, matters have taken a turn for the worse as she has developed physical and verbal aggression. I started to feel a little fearful when visiting her given her unpredictability and the need to shield my then unborn baby.

Mum has spent the last month in hospital due to her behaviour, this is where she also developed seizures.

This is a whole new stage of the disease.

Mum is now receiving medication to help manage her behaviour and the seizure episodes. She has a one to one carer on her ward. Following a Mental Health Assessment, now is the time to find a new home which can meet her needs for Dementia Nursing rather than Dementia Care on a one to one basis if possible.

The pressure is now on to move Mum out of hospital ASAP in order to free up the bed, Mum is not able to reside back at the care home.

Dad still cares for Mum, but from a distance – doing Zoom groups supporting other carers and giving financial, emotional, and practical advice.

To help others, Dad and I have created a concise leaflet for the local Health Board, which we hope will help newly diagnosed dementia families and carers including tips, information and advice on dealing with this disease. This has been an excellent outlet and allows us to give something back.

Preparing for Mum to meet her grandchild

I was really looking forward to seeing my Mum hold her first grandchild, but I'm not sure how possible this will be given her behaviour. 

I feel extremely sad that our baby boy won’t get to know the amazing woman my Mum was. I will always talk about her to him.

Mum had an extraordinary range of skills she could turn her hand to, her love of poetry, literature, art, and languages including being obsessed with crosswords and sudoku. I will be proud to show my boy her creative work. 

Caring for Mum will help foster my relationship with my son.

I was once very career focused and driven but early onset Alzheimer’s has changed my perspective on life.

Health is the most valuable thing we have. I have spent half my life consumed by this disease and it is important to remember the person before it took hold. That is what my Mum would want. 

The pantomimes we performed together, our shopping trips, revising for exams in the sun, testing me on my scripts, incredible holidays, watching soaps and helping with my homework.

Every day of dementia counts, live in the moment and always show affection and love.