utilities

My daughter Carla: dementia at 30

Rita Pepper

Rita Pepper’s daughter, Carla Bramall, is 40-years-old and in the late stages of dementia. The symptoms of the rare, inherited form of Alzheimer’s disease began when Carla was just 30. Carla’s father Barry died at 43 from the condition, and it’s also caused the death of her grandfather and uncle, while her cousin, like her, is in a care home. Rita speaks about what their family has gone through.

Rita’s daughter, Carla Bramall

My daughter Carla is my best friend in the world.

She was a very happy child who loved her little brother Lee, we were all really close as a family. Of course then I had no idea what would become of my precious family, the pain and the torture of familial Alzheimer’s disease which would rip us apart.

It was in 1987 that my husband Barry was diagnosed with Alzheimer’s disease. We were sat in the National Hospital for Neurology and Neurosurgery in London, I remember it so clearly. At that stage it was believed it was inherited but they had few details about it. My wonderful husband lost his fight to dementia in 1993. It felt like the end of the world at the time – I was a widow at 37.

Barry and Rita on their wedding day.

Barry donated his brain to research, and by doing so was able to help scientists obtain vital information about the PSEN-1 gene which had caused the inherited condition. I was told my children stood a 50 per cent chance of inheriting the condition too. Every day after that I would look at my children and think ‘which one?’ Or ‘please God not both.’ We carried on with life hoping and praying it would not strike again. Then we received the news that my wonderful brother-in-law had developed the monster too, and we sadly lost him a few years later. His two children then faced the same prospect as mine, and his son Keith would later go on to get Alzheimer’s.

We tried to live life normally, and Carla went on to have two beautiful children who she loved dearly. She was a wonderful mum to both of them. Then little things started happening. She would get lost more easily, even on familiar routes, and then came a couple of minor car accidents after which she wouldn’t be able to tell me how or why it happened.

I would notice these things as her mum, but for such a long time no one else did. Getting a diagnosis was a struggle. Eventually we were referred to the same hospital where Barry had been diagnosed. There I saw Professor Martin Rossor, a consultant neurologist at the hospital. It was a relief to see him as he treated Barry as a young doctor when he was diagnosed. I finally felt we might get answers, and Carla was quickly diagnosed with familial Alzheimer’s disease, aged 36. I think I was in shock at the time. I sat there in silence as he confirmed Carla had the gene but inside I was screaming. How cruel can life be?

This is why I don’t want anyone else to go through what we have as a family. We so badly want to raise awareness and find a cure for this monster.

My grandchildren are living with me now, and I’ve made a promise to Carla to give them a good and happy life as long as I live and I’ll bring them up the way Carla would have done. I will never get over my daughter suffering like she has. She is still here physically, but I no longer know if she even recognises me and I miss her so much. I already grieve for her, and I miss her beautiful smile. For her I will fight to beat dementia.

Read more about Carla’s story.

16 Responses to My daughter Carla: dementia at 30

  1. Avatar
    Helen 10 January 2017 at 7:22 pm #

    Dear Rita, I was heartbroken reading your story, our mum suffers from Dementia but to hear of your lovely daughter suffering at such a young age is just too awful, I will say a prayer for you all, you must be such a strong woman, lots of love to you all xxx

  2. Avatar
    kim mortimer 10 January 2017 at 8:58 pm #

    Need to start fund raising for this Nicole Phelan

  3. Avatar
    Maria 10 January 2017 at 9:41 pm #

    My heart goes to you and your family Rita, such a devastating news. I hope your grand children can escape this dreadful disease and you find happiness through them.

  4. Avatar
    Veen 20 January 2017 at 6:52 pm #

    I really feel for you that you have to go through all of this we are going through similar with my dad who has dementia and it really breaks your heart.. for you to have to see your daughter so young going through this must be terrible for you and your grandchildren ..stay strong ?be there for your beautiful grandchildren and hope you find peace in each other

  5. Avatar
    Kathryn Matthews 22 January 2017 at 5:14 pm #

    I feel so sorry for you both. Life is so terribly cruel. I have some idea of what you’re dealing with as my husband has had frontotemporal dementia for the last 4-5 years. He was 54 when diagnosed. It’s an evil disease that wreaks havoc. My thoughts are with you.

    • Avatar
      Sue e 4 August 2017 at 9:05 pm #

      Hello such a sad situation, my husband was diagnosed at 57 with frontal lobe dementia which I believe is a young persons dementia . Is this the same form of dementia. My husband .s is a slow progression but still difficult to cope with. It affects the family more than the patient .

  6. Avatar
    Miranda 17 March 2017 at 8:48 pm #

    Wow, your story is so close to mine. My mom was diagnosed with dementia when she was 30, right after I was born. Tests were run on my sister and me and we were told we did not inherit the condition. But, at the age of 26 my older sister was diagnosed with dementia and she has been in a nursing home for 10 years now. My mom passed away at the age of 65, almost 2 years ago. Even though I never knew the person she was before dementia I still mourned each decline and her death. My 2 children have never known their grandma or their aunt and they never will. I worry all the time that my time will come and I will start losing my memory. My thoughts are with you and your family as you fight to beat dementia.

  7. Avatar
    Tracy oldham 6 August 2017 at 10:15 pm #

    Rita it was an absolute pleasure nursing Carla , she loved me and jo getting her ready in the mornings and dancing around her room with her , doing her hair and makeup , lovely gentle kind loving lady we always talk about Carla and how we miss her , she made a great impression on most of us on the ward , love to all your family and of course the lovely Carla

  8. Avatar
    Deborah 7 August 2017 at 12:02 pm #

    You are strong and an amazing mummy. Thank you for sharing such a difficult story which will help raise awareness and support for all of us.

    I am sure you and you beautiful daughter are going to remain in our thoughts.

    Xx

  9. Avatar
    Steve boryszczuk 28 December 2017 at 8:26 pm #

    Sorry to hear this, my wife was 36’when she started showing signs, diagnoised at 38 died at 43,her father was 46, when he died of same, familiar they call it, its so sad, thought with youxx

  10. Avatar
    May Baron 28 December 2017 at 8:28 pm #

    You continue to do an amazing job for Carla and your grandchildren, Rita. They are lucky to have you.
    See you soon x

  11. Avatar
    SN 29 December 2017 at 11:00 am #

    No words can comfort you. I place you in God’s hands to comfort you and guide you in time like this. Remain strong, you have gone through a lot. My sympathy to you and your daughter. God bless.

  12. Avatar
    Linda Darby 10 January 2018 at 8:52 pm #

    So sorry..the cruelest robbing disease..several fanily members had this but not so early in life.I pray for a cure. Watching someone you love so much with this is heartbreaking..

  13. Avatar
    Patricia Fuller 29 January 2018 at 10:01 pm #

    Such A heartbreaking diagnosis. My Mom passed away in 2005 with this disease and I am so afraid each time I forget something. We must find a cure.
    Blessings to you as you care for your adult daughter and her children.
    I did read a book about a young woman with early onset Alzheimer’s, “the things we keep” by Sally Hepworth. I know it is fictional, but hopefully you can relate to it.

  14. Avatar
    Dave Kanto 2 February 2018 at 4:46 am #

    Rita, I am so sorry to hear of your daughter. I know how hard it is to look at your children and grandchildren and wonder did I give them my disease. I have Ankylosing Spondylitis, a form of spinal arthritis, that while it doesn’t devastate the mind it can devastate your body. When I was diagnosed I had my biological children tested for the genetic marker. My son tested positive but my daughter didn’t. My son and daughter-in-law have chosen not to have children, for whatever reason. My daughter has a six year old son who is the apple of my eye. However when he was about a year old I underwent a two part surgery on my lower spine and found out that with AS the gene doesn’t always show positive until you have developed the disease. We’ve been told that for AS if you have the gene you may or may not developed the disease. So now I, too, watch my children and grandson for the first signs of this very painful disabling disease that went through my grandmother, mother, brother and myself. Thank you for listening and I know that state of watching and waiting. Prayers and thoughts

  15. Avatar
    Tia 19 June 2018 at 6:17 pm #

    Dear Rita,
    I am so sorry to hear about your daughter and my heart aches for you and your family. I don’t usually posts on things online but your story has really struck a chord with me. There is an early onset dementia disease that is wreaking havoc in my family. My great grandfather, grandmother and my mother all inherited this disease. The doctors never came to a true diagnosis with my mother who passed at age 41. As children we helped care for our mother as she was no longer able to care for us and eventually lost her ability to communicate. After my mother passed, her brain was also donated to science but sadly it was contaminated during transport in a freak accident. Very frustrating. Doctors told us we all had a 50/50 chance of inheriting the same disease. I’m the oldest of 5 children. I haven’t shown any symptoms yet at age 36 however I have a sister who is 35 who is in the mid stages of this disease. The doctors are currently doing testing on her but she’s having a hard time cooperating (I believe it’s part of the disease as well because my mother behaved the same way). I wanted to know how you went about getting testing done for your daughter and how long it took to get a diagnosis. Have you done any research to find out if there are any hospitals conducting clinical trials for patients younger than 50? I’m sorry to ask so many questions, I’m just at a point now where I’d like to find out answers as well as be proactive in participating in any research to help find a cure or a way to help slow down this disease. I truly appreciate any information you’re willing to share. Thank you for sharing your story. You’re strength and bravery motivates me to continue fighting to find answers for my sister and her 3 beautiful children. God Bless you and your sweet family.

Leave a Reply