Sarah’s story (part one): ‘She does not deserve Alzheimer's...’

Sarah made the decision to move back home once her mum was diagnosed with Alzheimer’s disease. Read about the day to day challenges of being a carer.

Sarah cares for her mother who has been diagnosed with Alzheimer’s disease.

In a three-part blog series, she shares her experiences with us. Read the first entry below.

Sarah's mum, who Alzheimer's disease

Sarah's mum, who has Alzheimer's disease

Sarah’s story

I'm writing this first paragraph after writing down my whole story.

I have to start by saying that doing this, being able to put down in writing some of what I feel on a day to day basis and allowing myself to be honest without fear of upsetting the person in front of me - has been one of the most cathartic and stress relieving things I have done. 

My name is Sarah, I'm in my 30's and I care for my mum who has Alzheimer's disease.

Where my dementia story began

My story really started 4 years ago when my dad passed away quite unexpectedly. I’d noticed some changes in Mum when I came back home for Christmas to stay with my parents. It's only then, over a period of days, I noticed a change in my mum's behaviour and repetition, along with my dad clearly trying to compensate for this.

I spoke to him about it and he agreed he would try and get her to the doctors after Christmas to get her checked over. We never managed this as he fell ill shortly after and passed away.

Whilst in hospital, I made a promise to him that I would look after her. He was concerned that he wouldn't be able to cope when he came home - but now I think he may have had an inkling that he wouldn't.

Moving back home

I’ve always been very close to my mum and we have a great relationship so it really was a simple decision that I would move back up from London and move in with her, knowing full well she would struggle with the grief of losing dad and coupled with the fact that she may not be able to manage independently. So this is what I did.

It was actually a really easy decision as I had no family commitments, only rented in London and I could commute to my job fairly easily. Both of my siblings were settled with partners so I felt it was my role.

My friends thought I was mad, and some of my family in fact probably thought it was complete overkill and wouldn't be a good thing for mum long term but I knew it's what I needed to do given the changes I'd seen in her.

And I had a promise to keep which I probably didn't even portray as one of my reasons at the time.

Receiving a diagnosis of Alzheimer's disease 

Mum was diagnosed with Alzheimer's disease shortly after in 2013. The last 4 years have become progressively more challenging, as expected.

I had to sacrifice a great career, my home, independence and numerous other things to move back home but it was the right path to take.

Seeing first hand how difficult mum was finding things, I just became fixated on her happiness and wellbeing as she deserves that more than anyone I know.

She is the most lovely lady, to anyone that knows her and after giving up her life to raising me and my siblings, the least I can do is return the favour and ensure she has something to live for. She does not deserve Alzheimer's and she couldn't be more loving or grateful for the help.

To be continued...

Read the second part of Sarah's story. Hear about life as a carer and the adjustments she made once her mother was diagnosed. If you need support and advice after receiving a dementia diagnosis, you can call our National Dementia Helpline on 0300 22 11 22.

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Sarah's story today is very moving , & prompted me to advise her to read my website noted below if she has not already so. Alzheimer's Society has a link which is getting a lot interest.
I retired early to look after my Wife Pauline , & was in a similar situation . However I managed to persuade NHS to provide support which people in Sarah's situation are entitled to . I was able to get Carers in daily so that I could manage to nurse Pauline at our Home for the rest of her life , rather than use a Nursing Home when I couldn't manage on my own.

I do nty see your website Peter Garside

I am so glad you are telling your story.
I know that coping with my husband diagnosed a year ago will be aided by reading it.

Website is on https://continuinghealthcare.wordpress.com/

Peter Garside

A truly inspiring story. Wonderful to see how family ties and love enable such sacrifice
of one's own comforts and future prospects. Sarah, you have my admiration and respect. Try not to forget your own needs, you might risk being less effective in your love for mum.
I look forward to reading the rest of your story.

it is so paint full to see you own parent go thought at this disease!!! as a care giver I know how hard is it to see your mama or dad go though this. my mama have this disease know keep up the good job god bless all care giver who take care . sara thank for sharing you history.

This story rings so similar to mine in 2010 Sarah. I wish you & your mum all the very best, be strong, be brave & be kind to yourself. Chloe xx

Thank you

I am in a similar situation at the moment, my mam died of cancer quite suddenly about 18 months ago, and since then I have become the main carer for my dad who has early onset Alzheimer's. My plans have completely changed now and I chose to live near my dad which has limited the job opportunities that I now have after finishing university. The last few months have been challenging as dad has been deteriorating but reading Sarah's story makes it feel that there is someone of a similar age who is going through this. xx

Hi Sarah, thank you for your message. I'm sorry to hear about the challenges you've been facing - I'm glad that Sarah's story has helped in some way. If you would ever like to talk to someone about your experiences or get any dementia information and advice, please don't hesitate to contact our National Helpline team on 0300 222 11 22. They'd be happy to answer any questions you may have. Alternatively, you might like to share your experiences with other people in a similar situation in our online community, Talking Point. You can find out more information about the community and sign up here: https://www.alzheimers.org.uk/info/20013/talking_point_-_our_online_for…

Thank you and all the best,
Ellie

It is so reassuring that Sarah has decided to share her feelings with so many people who understand exactly what she is talking about, which can at times be quite Isolating, and heart breaking. Caring for a loved one with what ever illness is, a 24/7 occupation so, accept help when offered. Everyone needs a break, so actually do something with your precious time. My love goes out to Sarah and all the people who are caring for a loved one whether it's a precious Child or a precious Mother /Father. You are not alone.

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