Dementia Support Line
Real stories
Losing my dad to Alzheimer's disease: Sarah's story
My name is Sarah and I’m 21 years old. In August 2017, my dad died from Alzheimer's disease. I would like to share my story of being a young carer and experiencing what it is to care for someone living with Alzheimer's disease.
Growing up, my dad was very active. There were 60 years between us but this did not stop him from being involved in every aspect of my life.
He used to take my brother and me on numerous camping holidays, we’d ride our bikes together and we’d have many adventures.
He would always be planning new projects, DIY home improvements and could put his hand to absolutely anything.
Dad's Alzheimer's diagnosis
Dad was diagnosed with Alzheimer's disease in 2011 when I was just 14 years old. At this point, my knowledge of Alzheimer's was very limited.
As time passed and his condition got worse, I slowly realised I was losing my best friend and what that really meant for my life.
Nothing can prepare you for that. Becoming a young carer places new expectations on you; the family dynamic is turned on its head and it leaves you trying to figure it all out whilst still trying to carry on doing what a regular teenager does.
Dementia is often described as the long goodbye and throughout those years I experienced grief and loss.
I found my interactions with Dad changed so drastically that I grieved for the relationship we used to have.
My advice to anyone experiencing this is to try and accept every new challenge and every new stage of their illness as a new chapter.
My love for my dad was unconditional and no matter what this disease did to him, he deserved all the dignity and respect I could give to him.
Caring for my Dad
Dad was cared for at home until 2015 by my mum and I.
During this time we shared caring tasks and were very fortunate that we could work as a team to keep him at home for so long.
Throughout this time I learnt that Alzheimer's can affect every part of a person, from their ability to write, to communicate, they may become confused by time or not know who they are.
Being a young carer meant not only carrying out tasks to physically care for Dad, but it was also about being there for him emotionally, being able to be that friendly face even if he couldn’t remember my name.
Although Dad became very unwell, he never stopped being my dad, he never stopped being a husband, a granddad or an uncle.
There were many times where this was evident to me but this is an example I’d like to share.
In early 2015, Dad was been admitted to an organic condition hospital for an assessment of his Alzheimer's as it was not manageable in a care home.
During this time I used to get the bus from school and go visit him. This one particular time, I was so tired and told him that I’d had such a long day at school.
Even though he couldn’t look after himself or string a coherent sentence together, he made his bed and tucked me up so I could rest and sat there cuddling me.
Feelings of gratitude
It would be impossible to describe exactly what it was like to care for Dad. The struggles, the tears, the ups and downs.
To see this man, who was always so capable, be debilitated by such a condition honestly broke my heart.
But what I can say is that I am so grateful that I was given the opportunity to give back and care for him like he used to do for me until he became ill.
I’m sharing my story not to say that my experience was all doom and gloom, because every cloud does have a silver lining.
Through Dad's illness, I was inspired to study mental health nursing and I’m now in my third year of the course.
What I would like you to take from my story is the importance of having patience with someone with dementia.
It came very apparent to me that as soon as Dad's condition became prominent, people started treating him differently.
Try and support that person to be able to do things that they enjoy. Little things like involving them in what you do without worrying if they’re not doing it the way you want them to.
Dance with them and show them joy! It's so important for that person's mental health that they feel valued.
I can’t imagine how frightening it must have been for my dad and to this day I admire his bravery and courage throughout his illness.
Diane
saysI’m going through Alzheimer’s with my dad now he’s 85. And I’ve known for months he had this awful disease he has rapidly declined in the last 3 months and continues to decline. He can’t look after himself and although he has carers 4 x a day it’s the night time he goes wandering but 3 times wasn’t enough for social services to give him 24 hour care. Dad is struggling with being incontinent each and every day n night. And also with feaces dad is in sheltered housing but he gets lost in there n can’t find his flat so he’s banging on doors. He’s yelling out loud in the night and it’s keeping his neighbours awake. He’s getting angry and aggressive at myself and his carers. Yesterday he sat on his bed and fell back as he cudnt sit up properly I’ve finally got through to social services yesterday to give him another assessment 1 month prior to the last one
It’s breaks my heart to see dad go through this, I’ve looked after dad for 10 years since he and mum split as she was psychologically abusing him, Ive now got to get dad the 24 hour help he so desperately needs. As I work full time n hubby does. But he’s facing redundancy in January. So I’ve got to keep doing my full time hours and overtime to
Make ends meet. It was lovely reading your story. Cos like you my dad is my best friend and my world and I intend to get him the help he so rightly deserves. X
Anonymous
saysHi Diane,
Thanks for sharing your experience -- I'm sorry to hear it's been so difficult for you.
Please remember that you can contact our helpline 7 days a week for information, advice or emotional support. Don't hesitate to call us if you need support: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Take care,
Alzheimer's Society blog team
Maria Devaney
saysLovely words. Thank you for sharing.
My daughter was 12 years old when her dad was diagnosed.
We did share care for her dad. He was a great dad and husband.
Always in our thoughts.
Catherine
saysThese moving accounts by those who have gone through the long slow loss of a parent ( often) or partner, are very valuable to me now, having recently been diagnosed with Alzheimers: It makes me very conscious that the concern of my (our!) children comes from the love we share for one another, And of the increasing loss of their own full independent lives my condition will inevitably mean for a period of their lives. They are and have been the greatest loves of my life. I am grateful to have been made so aware of this through these and other recent valuable gatherings with Alzheimers Australia.
Barbara Reynolds
saysAmazing story I've had it for 6 months my family it hit hard
Nadine Brierley
saysThank you so much for sharing your inspirational story. What a wonderful daughter to a devoted Father. 'Dance with them, show them joy'- incredibly significant words that we must try to bear in mind through the very difficult times. You are one of life's truly beautiful beings. The very best of luck with your studies. Those in your care will be blessed.
Clare
saysWhat an inspiring story, sadly my dad has gone from this cruel illness and it was a very long good bye, I am running my second maratho to try to raise money for this worthy cause , I miss him so much and just wish I could have the man before the illness back again, his decline was rapid and I didn’t realise how quickly he would deteriorate and wish I had just told him what a wonderful man he was while I still had time.
Helen Croshaw
saysWow what an inspiration you are. It's hard for anyone to care for a relative but to do this at such a young age is simply amazing. You deserve the up most respect.
You've given me lots of things to think about and take with me. Thank you for sharing.
Andrew
saysI am now into my third year of looking after my wife who has early onset Alzheimer's.
I have great support from my family but it is still very hard carering for her 24/7 and still trying to be positive.
carla luppi
saysLovely story, very moving
Evelyn
saysYour story is remarkable for someone so young to take on board but respect for your dad and yourself makes the statement , my dad had spinal problems and was bed ridden for years and emphysema was a problem latter years the thief stole him from me but like yourself I helped mum nurse dad at home to his dying day he peacefully passed and I’m most grateful that we were able to do this I work in the care sector and for all that’s done for needs and legal issues for Alzheimer’s/ Dementia suffers it’s still so very sad how some people in the care sector treats those suffering this conditions breaks me .
Mariyah Janan Peerally
saysSuch a heart warming account that inspires others.
I’m sure you will go on to become a great asset as a qualified Mental Health Nurse!
WendyN
saysI went through this very same thing with my Dad. What you said is “spot on” - the courage it takes to face this disease is immense. You are right, have patience and enjoy the beautiful moments. Wonderful story you have shared.
Lou Winington
saysMy mother had Alzhiemers she died over 20 years ago it was very sad at the end of life she did not know me or any of her Grand Children I miss her very much even after over 20 years when she passed away
Tui
saysWe had to place my dad into care he has rapid dementia it broke my heart but I couldn’t do the medical care he needed
My mum has just been diagnosed with dementia too
So She lives in my home and we have put a lot in place and making the most of what we can I hate dementia
Grace Kalevor
saysThis is so beautifully written.Sarah l am so proud of you.