Lara and her mum, Sandee, taking a selfie in the garden, holding hands

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

Lara's mum, Sandee, has dementia. As Lara becomes a new mother herself, she reflects on the impact dementia has had on her family, through a moving account of their journey.

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, has just been 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.

Sandee with the family dog

Lara's mum, Sandee, lives with young-onset Alzheimer's

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 and her mum, Sandee

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.

Lara, her brothers, dad and mum taking a family photo

Despite challenges, Lara's family remain closer than ever

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'.

Sandee and Lara's dad in their younger days

Lara's dad became her mum's full-time carer

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.

Our dementia advisers are here for you.

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.

Lara and her mum Sandee, smiling while taking a selfie

Lara knows that the experiences with her mum will help her raise her own child

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.

Caring for a person with dementia: A practical guide

If you are the main person supporting someone with dementia, this guide is for you. It will tell you more about their condition and how it can affect them over time.

View PDF Order a copy by post

34 comments

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Thank you for sharing this, I can totally relate to this as I am going through this with my own mother. A beautiful honest account x
Thank you very much, so sorry you are also going through this difficult experience.
Thankyou Lara for giving me more insight into your lives and Sandee. I wish I had seen these beautiful photos when I was with her, it would have opened up a door into how/ who she was before this dreadful illness overcame her. Her beauty, both outer and inner still shone through for me when I was with her and I am saddened that I never knew her when she was that vibrant being you describe so well. I hope Sandee is aware of what a lovely family she has raised; you are all a real tribute to her and she should be so proud of you all.
Thank you so much Debra. That made me well up. You are one of the best people that have come out of this difficult process and my brother's and I are so grateful of your relationship with Dad.
Thanks for sharing your story, so many similarities to my own. My dad met my daughter only once, when she's was almost 1, on his 80th birthday. It was the only time I got to see him in the care home. It still breaks my heart that she wont know him. It's really nice to hear your story and know that I'm not alone in those feelings.
Thanks for sharing that Martha. Such a hard reality to accept.
…… a very similar story to what my family and I are going through now, my beautiful mum now 73 was diagnosed with vascular dementia when she was 65, so very young, my dad is caring for mum at home still along with my two sisters, we are making sure we do everything we can for mum …. I recently lost a baby and so desperately wanted my mum at the scans and needed my mum when I was faced with my painful news …… not only am I losing my mum but my best friend……just like Lara my Mum alway took care of her appearance and always looked beautiful… I feel for anyone that is going though this with a family member it’s such a hard disease to watch slowly change a loved one ….. I always tell my mum how lovely she looks and always tell my mum how much I love her … dementia is changing my mum, but it won’t change how I treat my mum With my love …… I wish Lara and her family all the love and strength and her Beautiful mum a calm and loving life xx
Lovely words Lindsey, thanks for taking the time to write. I am so sorry about the loss of your baby, you must feel so lost and alone in times like this.
Are the government putting any money as a charity into this? It is sad to think that I never see anyone raising money for this. We adults need to fight for this so much more. It is as though, because a lot of people get this when they are older, many people don't seem to care or because there is not enough information out there. People are embarrassed about it this and shouldn't be . Far more information and raising money for charity needs to be done. Advertise in Doctor's and Dentist's surgeries and on the streets and newspaper stands more. Teach secondary pupils about it and how they could help get rid of this awful illness.

Thanks for getting in touch, Mrs. Turner. We are pleased to hear you share our passion for this cause.

For over 40 years, Alzheimer’s Society and its supporters have been helping to prioritise dementia research to pave the way to better treatments and care.

We advocate for investment in research, to keep the spotlight on diagnosis rates, and to drive forward the conversation on the desperate need for social care reform. Our campaigners help us to keep up the pressure on government to ensure that proper funding is available to kickstart crucial research.

With over 900,000 people living with dementia in the UK today and that number set to rise to 1 million by 2026, research has never been more important, yet it’s been chronically underfunded for many years. We are campaigning to make sure that dementia research gets the funding it needs.

In recent years, momentum has driven dementia research forward due to efforts by funders like us. But dementia research has been hit hard by the pandemic. On average, medical research charities saw a 40% fall in research investment during 2020/21.

You can join our campaigns (https://www.alzheimers.org.uk/get-involved/our-campaigns) or donate to help support dementia research (https://secure.alzheimers.org.uk/research).

And you can speak with an adviser if you are UK-based and looking for more information ways to support people affected by dementia now and in the future. Our Dementia Connect support line is open seven days a week on 0333 150 3456. Details on opening times, and other methods of contact, can be found here: https://www.alzheimers.org.uk/dementia-connect-support-line

Thank you.

Alzheimer’s Society Campaigns team

I agree more needs to be done, especially for those carers that have to stop working in order to care for their loved ones. My brother recently raised thousands of pounds for the charity. Memory Walks across the UK are also big events that generate a lot of money.
Dementia is such an awful thing. What can we do to raise more money to help find a cure of some kind. Are Scientists heavily involved in this ? My father and all his 5 brothers and their parents had it. However I have never seen anyone raising money for this.
Beautifully written and oh so familiar. Thank you for sharing such an honest, informative view of this horrible disease. My lovely Mum suffered from this too and although thankfully she didn’t progress so far as it sounds like your dear Mum has, it still took it’s toll on her and the family. Miss her every day lost her in January unexpectedly. Am thankful she still knew me and we still had our usual funny conversations and grateful she didn’t get “too bad”. Lara please take time for yourself now and enjoy your beautiful boy. It’s a different sort of grief losing someone to Alzheimer’s it’s true we lose them twice and it’s so hard to process it all when they die. Wish there was some help out there for us when we lose them. I’m struggling be exhausted
Thanks for your lovely words. Sorry that you have also been through this painful experience. Glad you were able to make the most of your time with your Mum.
Dear Lara, thank you for sharing the poignant story about Sandee and about how you are all dealing with her situation. Life is so unfair, but Sandee is so fortunate to have you, your Dad and your brothers to give her unconditional love and support. We are thinking about you all and sending our very best wishes. Penny and David
Thank you so much Penny. Also nice to know Dad has you both next door for support and regular chats.
An, honest, sad but inspiring account of your Mum, Dad and family’s journey with Alzheimer’s disease. Thanks Lara
Thank you Pauline. I know how much my Dad thinks of you and your wonderful support through this difficult experience. We will always remember you for this.

Wow, thank you. The vulnerability in your writing about things so personal and heart-breaking is beautiful and breathtakingly moving. My thoughts are with you all. I am certain that Mum is as proud of you, as Dad and the rest of the family must be. Thank you for sharing the wonder of mum and the importance of being grateful of every moment in life. All my heartfelt best wishes to you, mum, your little one and the rest of the family.

Thank you for your warming words Rupert. Will remember what you have said in moments of sadness.
I have cared for your mum she is so beautiful inside and out, with her illness things have been challening,But your family love and caring has always shown through, ur dads dedication to ur mum has been flawless,dedicated, and this woman,mother, grandmother has been so lucky to have you all, your family commitent has been brilliant, I thank you for the privilege of knowin ur mum, thank u. X
Thanks so much Tracey, gorgeous words, will take them on. We are grateful to all carers that have been there for Mum, such a tough role day to day. Carers are such special people. The series "After Life" refers to carers as "Angels" and you all really are!!
Love from the Cooney’s. Will be catching up with your dad soon. Jim and Sue x
Thanks Jim, your regular meet ups have carried Dad through this difficult experience. My brother's and I are grateful for your support.
Beautifully written Lara , you and all your family have shown such inspirational love and care towards your mum, my heart goes out to you all. Much love Glenys and Brian.
Thank you both, will get a date in with you very soon for you to cuddle Luther.
Lara what a beautifully written piece on such a terrible condition. You need to be proud of yourself and all your family, your Dad has been a rock . Sandee has been such a vibrant beautiful woman . First person I spoke to when going to play school with my daughter 27 years ago .Sandee was one of the organiser’s. This article describes the painful progress of such a devastating disease . Sending love to you all especially the new little one xxx
Thank you so much, always nice to have reminders of what others remember Mum for. Lots of love x
Lara, thank you for sharing, with utmost truth and love the effect of Alzheimer’s on your life. Surely many families will be informed by your clear compassionate message. We wish you, Luther and all the other members of your family peace. Much love Dave and Margaret P
Thank you both so much, beautiful words and nice to recieve recognition that this should help others.
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