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Alzheimer’s stole my dad from me

Chrissi’s childhood was not like most. She became a carer at the age of 11 when her dad received a shocking diagnosis of early-onset Alzheimer’s disease. She looked after him every day alongside her mum and sister, as he gradually disappeared before them. Chrissi wrote this letter when she was 16, not long after her dad passed away, and now she wants to share it in the hope that it will show the reality of dementia.

Alzheimer’s is one of the most painful diseases to endure, not only for the person diagnosed, but for their nearest and dearest too.

Many people stereotype Alzheimer’s as an ‘old person’s’ disease, but it affects young people as well as old. One of these people is my dad, who was diagnosed at just 46.

I remember the day he was diagnosed like nothing else. Mum and Dad had to sit me and my sister down to give us the bad news we had been hoping would never come.

“Your dad is terminally ill with Alzheimer’s”

I was only 11 and my sister was 13 so it was a lot to take in. All I knew was that it was to do with memory loss and that at one point, Daddy would forget my family and me. This belief needs to change. Alzheimer’s is much, much worse than just memory loss. It truly is terrible.

chrissi-with-her-dad-mike-and-her-sister-ciana-in-2011

Chrissi with her dad Mike and her sister Ciana in 2011

The difficult journey began with minor forgetfulness – mislaying belongings or forgetting to make a cup of tea. You wouldn’t have really guessed that anything was wrong with him. But this was only the beginning. The next changes were confusion with speech, not being able to get himself dressed and no longer being able to drive. These again were small changes compared to what was to come.

Then it all began to go downhill. In October 2011, Dad suffered a major fit which seemed to trigger the next stages of the disease. He became obsessed with my mum, to the point that he wouldn’t let her out of his sight. The fits became more and more common, each time worsening the disease.

Things then again deteriorated when Dad started experiencing delusions. He thought we were poisoning him, that he had killed someone, that his best friend was stealing his money and that Mum was terminally ill. I can’t begin to imagine the fear and confusion going through his mind. Dad then became very vacant, as if he’d lost his personality. He was slowly and painfully disappearing…

The breaking point for us was when the aggression began. We had carers who would look after him if we needed to go out, but he started to refuse to let them in, shouting and screaming and in some cases lashing out at them. The day I will always hope to forget is when he turned and showed severe aggression towards me and my mum. We were one side of the kitchen, protected only by the kitchen island, full of fear, and Dad was the other side with a book in his hands threatening us. We just didn’t know what to do. It took hours to calm him down and distract him. The disease truly had taken over Dad. For anyone that knew him, he was the loveliest, gentlest and friendliest man you could ever meet.

Chrissi and Ciana Ayre

Chrissi and Ciana Ayre – photo credit Hamish Mitchell and S Magazine

This was the point where we decided to take him to a specialist hospital unit to try and stabilise his aggression and confusion. After eight weeks had passed, the hospital recommended that it was time Dad went into a care home. I went with Dad in the ambulance and my mum and sister followed behind. I clutched his hand so tight the whole way there. It’s one journey I will never forget.

Once he was in the care home, the deterioration continued. Each time he declined more, it would feel like we were already grieving, as bit by bit we lost little pieces of him. He began to lose his speech so much so that he would only make small noises. He no longer knew who Mum, my sister Ciana and I were, which was so painful. At this point, he couldn’t feed or dress himself, walk or communicate. His mobility began to slow down until finally he became bed-bound. It was like he’d disappeared, and all that was left was a body. It was horrendous to watch.
Soon after this, his swallowing reflexes began to stop working which caused difficulties eating. Then, one night in September 2013, we got a call from a carer letting us know that things weren’t looking too good. We stayed for six long nights on the bedroom floor, surviving on little to no sleep, watching him and waiting for the moment. He was hardly eating or drinking – we knew the end was nearing.

The weight was falling off him daily until he was purely skin and bone. Knowing how much pain and discomfort he must be in and not being able to do anything about it was extremely distressing.

Chrissi Ayre - credit Hamish Mitchell and S Magazine

Chrissi Ayre – photo credit Hamish Mitchell and S Magazine

On the sixth evening of staying at the home, Dad sadly passed away. Despite the pain it caused us, it was a slight relief to know that he was now in peace and no longer living with the cruel disease that is Alzheimer’s. My best friend had now gone forever, due to one of the worst diseases I have ever witnessed.

Never in my life did I think I would only have 16 short years to spend with my dad. Not a day goes by when I don’t think about him. An emptiness unfolds inside me and all of a sudden I feel so alone and lost. I still can’t believe he’s gone.

I will now have a huge part of my life missing as I grow older. I will never have my dad there to help me through university, to walk me down the aisle on my wedding day or give me life advice. I will however cherish our past memories forever, and never let them go.

Chrissi

20 Comments

  1. Hayley on 15th September 2016 at 8:08 pm

    Your blog post touched me. My father has early onset, so pleased you spoke about it not being all about memory loss or older people. It affects so many more, and it is so much worse than that. Thank you for writing such a personal account.

    • A. Pilling on 3rd February 2018 at 8:35 pm

      Thank you, I hate It! First my grandmother then grandfarther died with it, now my dad has been diognosed with the early stages of it but it is so obvious to me and people that know him. I am just trying to spend quality time with him at the moment whilst he remebers who I am. I could do with some tips from people in a simuiar situation.

      Thanks

      • Janet Elders on 13th October 2018 at 8:44 pm

        My dad has Alzheimer’s. It is indeed the saddest thing I have ever witnessed. I live with my mom and dad, my dad is eighty years old, my mom is seventy six years old. They have been married for sixty years and don’t know who I cry about more, my dad, my mom or my own brokenness. My dad is pretty bad right now, see people that are not here, thinks me and mom are lying to him all the time, just recently started seeing anger It we not seeing what he sees, pictures that we moved from the house he always loved to look at, Only they never existed. My dad also has always been a kind and gentle man and always always with my mom. She takes his harsh words so personal. I pray that God will help my mama come to some kind a peace if there is any such thing in this crazy decease. Lord God I pray for every family that has to witness this at any time

  2. Nick on 18th September 2016 at 8:54 pm

    Hi Chrissi, thank you for writing your blog post. You and your family are so very brave.

    I am going through a similar situation with my mum and reading your blog brought me to tears.

    Hopefully one day this terrible illness will have a cure and all the misconceptions about Alzheimer’s will disappear.

  3. Judith on 5th April 2017 at 7:36 am

    Thank you for your blog, I am going through the same thing with my dad right now. It has happened so fast. Reading your blog made me feel like I wasn’t alone. Thank you.

  4. George on 23rd April 2017 at 1:24 am

    Lived through the same situation, Dad was diagnosed when I was only 12 and I had no idea what was happening, other than dad couldn’t live with us because of his memory. I hope one day this horrible disease gets diagnosed. As the past 5 years I have not had a dad to give me life advice etc.
    My thoughts go out to family’s going through the same situation.

  5. JEAN on 18th August 2017 at 8:36 pm

    My youngest son is going though this illness now. He is in a care home and they are very good to him. He is deaf so this makes even more difficult . It was so sad to read your story Chrisi i hope you can think of the good times and the memory of your Dad’s illness fade in time.

  6. Jeanette Rouse on 19th August 2017 at 9:09 am

    Thankyou for your blog, it lets us know we are not alone living with loved ones with Alzheimers! My mum was in her 50’s when she started to show symptoms of this cruel disease and now aged 74 she has been living in a card home for going on two years after becoming delusional and violent towards us. Her disease has been a very slow progression however my sister aged only 45 has been living with a very aggressive form of it and only started snowing signs of it a little under two years ago and is already at the stage of not being able to talk properly, being delusional and being moody towards us all. She has two boys aged 21 and 17 and it breaks my heart knowing she will never be there for them at the important times in their lives like graduations, marriage and the births of their children!

  7. Charlotte on 19th August 2017 at 2:47 pm

    This brought me to tears. This disease needs to find a cure. My dad has recently been diagonsed with this and is 62. Your blog was nice to know we aren’t on our own. Feel for you and your family. Your dad might of not known who you were but he always would have you in his heart. Stay strong you are a true young women.

  8. Kelly on 19th August 2017 at 3:35 pm

    Your story touched me so much. I have just lost my Dad to early onset Dementia. It also brought on severe epilepsy which worsebsed his dementia each time he had a fit. It was eventually the reoccurring aspiration pneumonia which took him from us. We were lucky in on respect that Dad stayed happy and placid, I can’t imagine how hard it must’ve been for you. I want to do as much as possible to raise awareness of this awful disease. Much love to you x

  9. Brian Kursonis on 20th August 2017 at 1:46 am

    Thank you Chrissi. My heart goes out to you. Thank you for taking care of your Dad and loving him. Thank you for writing this to help others. Nothing will change your life and bring healing to your heart like helping others. Nothing will fulfill your life, like helping others… It is a gift your Dad gave to you with out knowing it.

    – Brian
    withALZmyHeart.com

  10. Jenny on 20th August 2017 at 2:07 am

    Thankyou to you and your family for sharing your story. You made a very important comment Chrisi about people just thinking Alzhiemers being a disease of the elderly. At the beginning people think you look well so you can’t possibly have anything wrong. People will learn from your experience as you Champion the cause. I have Early onset Dementia I’m now 59.

    • Neen on 15th January 2018 at 2:37 am

      Hi jenny I agree, I’ve learned alot reading these posts, my dad is also 59 and was diagnosed with Alzheimer’s at 58, im trying to learn as much as I can.

  11. Monnie on 23rd August 2017 at 12:24 am

    Thanks Chrissy. My mother had an early onset Alzheimers and it is exactly as you described, but as we both know, things were so much worse. My mum passed away a year ago at 62 after battling with the disease for 12 years post diagnosis. The disease is just so sad for everyone and she was kept at home until the last week of her life.

  12. Helen O'Connor on 8th May 2018 at 7:46 am

    Chrissy, your post is so so moving, you couldn’t have paid a better tribute to your lovely dad. Thank you for your honest portrayal of this disease in all it’s complexity. We have had the exact same journey with my dad. His swallow is now going.. everything else has nearly gone already.. but we still get the odd wink and laugh. I lost my mum to cancer at 20 but still feel her with me guiding me every day. Your dad will always be watching over you and your sister. Thank you again and all the very best x

  13. Thomasina Nunley Moore on 3rd October 2018 at 7:32 pm

    Thank you for such a beautiful story of you and your dad. I lost my mom to the disease in 2012 and i think of her daily. She would have celebrated her 96th birthday Oct.5 2018. Thank you again. America is living with this disease all across this country. Just remember to always keep God in the center, and he will direct your path and your steps. And over time it will get better, i know its getting better for me, but never forgotten, and it has been 8 years (Oct.18 2012 when mom loss her battle) God be the Glory. She is at rest. Amen

  14. Katie Daniel on 19th October 2018 at 12:32 am

    I have never ever known someone who has gone through anything like what I have gone through. This truly touched me. You are so strong. My father has early onset Alzheimer’s disease, and he was diagnosed when I was about 19. It is a terrible disease, and it isn’t fair. It’s like watching them die over and over again, but their body is still here. It’s very traumatic. And nobody our age seems to understand. It’s strange. It’s hard. Thank you for this!

  15. Mark on 8th February 2019 at 6:32 pm

    Chrissy,

    I read your story, and I’m sorry you had to endure that. It’s an awful disease that leaves us empty inside. Alzheimer’s also took my father away in a few short years. I still can’t believe my father is gone. I miss him so much! He first started having trouble with his memory, he progressed to losing things or forgetting to shut off appliances, and then had a hard time handling matters. His speech diminished until he would not say anything on rides to soccer games. The Alzheimer’s diagnosis was devastating. We thought we had time, but he became angry and delusional. The hardest part was when he would get angry and no longer trusted me. The thought of him not knowing how much I loved him pains me today. We no longer could provide the care my father needed, and the hospital recommended assisted living. The only place that would accept him in his condition was a dementia unit. We were devastated. My dad wanted to come home, but he could not control himself anymore. We feared for his and our safety. The only comfort he had was to take walks, but as his balance began to falter he lost that too. We visited him often, as he faded away day by day After diagnosis, he made it just over a year. He developed the same swallowing problems that prevented him from eating and drinking and passed away 10 months ago. I can’t believe he’s gone. My father was my best friend. I miss him so much!

  16. Ally on 8th July 2019 at 5:29 am

    Nothing prepares you for this, but it is good to know my family is not alone. Sending love to everyone

  17. James on 31st July 2019 at 6:35 am

    I just lost my dad to Alzheimer’s. It was the hardest thing I have ever had to witness in my life. He was my hero and to see him reduced to death was heartbreaking. I cry everyday thinking about him.

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About the author

Chrissi Ayre

Chrissi lost her dad to Alzheimer's in 2013 when she was just 16, after many years of caring for him. She is now a Champion of Alzheimer's Research UK, along with her mum and sister.