utilities

My family and Alzheimer’s: survivor’s guilt

Lee Bramall

Lee Bramall’s sister, Carla Bramall, is 39-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, and she was diagnosed at 36. Lee and Carla’s father Barry died at 43 from the condition in 1993, and it has also claimed the lives of their grandfather and uncle, while their cousin is under 40 and in a care home. Lee, 38, speaks about what he’s gone through.

My first memory of my dad’s Alzheimer’s was when I was around seven years-old. Despite being just a child, I can recall thinking how odd his behaviour was. Over the next few years I watched him slowly ebb away, until he couldn’t speak or move. Those years were defining for me, they changed me forever. I realised what dementia entailed and felt helpless as it pulled our family apart. I soon learned that, in our family, Alzheimer’s wasn’t just a random illness that my dad had picked up along the way, but a part of his DNA. He was just the latest victim in generations of death from this terrible disease, and Alzheimer’s wasn’t done with our family yet.

It didn’t strike me in a single blow that this was what might lie in wait for me. It was a gradual realisation, though overwhelming nonetheless. I found out that I had a 50 per cent chance of inheriting the faulty gene from my father, and if I did it was certain that the same fate would await me. I am so alike to my father that I could not fathom the idea that I would escape having the gene mutation.

I’ve tried to keep my life as normal as possible. I’ve had a son who I adore, got married and now have two stepchildren, step-grandchildren and a niece and nephew from my sister. Despite living a full and happy life, in the back of my mind I would always think about the fact I may not make it past my 40s.

And herein lies the double-edged sword. I was so consumed by the thought that I would get it that I never did entertain the thought that it would be my sister who got Alzheimer’s instead. When her symptoms started showing when she was 30 I was in not only denial, but complete and utter shock. As I’ve watched my sister’s symptoms grow worse and worse over the years all that’s left now is a shell of the sister I loved. She is unable to get out of bed, or speak or move, just like my father. I’ve been left with a terrible survivor’s guilt knowing that I’m likely to have escaped the gene, and she is now in the late stages of dementia leaving two wonderful children behind.

I’ve had a constant knot in my stomach for five years. We’re such a tight family, to watch her slip away knowing there’s nothing I can do to protect her or stop it from happening is unbearable. Though I have not been tested yet, it looks likely that I’m not going to suffer the same fate, but it offers no sense of satisfaction to me that I won’t. I’ve had a front row seat in the demise of my family. Alzheimer’s has torn its way through us and left a trail of devastation. I hope in reading this you can have a small insight into my life and why to me research and funding for Alzheimer’s research is so vital. I dream of a day where no family has to know the word Alzheimer’s. I’m asking everyone to donate what they can to dementia research through Alzheimer’s Research UK, and join the dementia research register at https://www.joindementiaresearch.nihr.ac.uk/.

 

To watch a video from Carla’s family and donate to their fundraising page go to www.alzheimersresearchuk.org/carla.

4 Responses to My family and Alzheimer’s: survivor’s guilt

  1. Dawn 20 January 2017 at 9:14 am #

    Hello Lee,
    I’m so truly devastated to read your story. Though my words may offer little comfort, your sister would be overjoyed that you too have not suffered the same fate and can be there for her children. Guilt is such a useless and destructive emotion My husband’s mum developed Alzheimers in her early 60’s so we are only too aware of the 50% risk of my husband inheriting the disease. Is the test available on the NHS please as we both would like to know? I like to think that we will be able to spot the signs soon enough. We all feel guilty for how long it took his mum to get a diagnosis Sending our very best wishes to you for a healthy and happy life xx

    • ARUK Blog Editor
      ARUK Blog Editor 20 January 2017 at 4:56 pm #

      Hi Dawn,

      There are some very rare cases where Alzheimer’s disease is caused by a faulty gene passed down from parent to child, and in these circumstances there is a 50% chance that the child could inherit the faulty gene. However, it is important to note that these genetic forms are rare, and not all forms of early-onset Alzheimer’s disease (diagnosed under the age of 65) are caused by a faulty gene. If a doctor suspects that a person’s Alzheimer’s is caused by a faulty gene, they will discuss the options regarding genetic testing with the family directly. If there is not a strong family history of early-onset Alzheimer’s disease and the cause is not suspected to be genetic, there are no genetic tests available on the NHS. You can read more about genes and dementia on our website http://www.alzheimersresearchuk.org/about-dementia/helpful-information/genes-and-dementia/

      I hope this has been helpful, if you have any further questions, please do contact our Dementia Research Infoline at infoline@alzheimersresearchuk.org, or 0300 111 5 111.

    • Lee 21 January 2017 at 5:53 pm #

      Thanks for your message dawn its much appreciated and it also makes me more aware I’m not alone in this ,I spoke to my local GP who started the process of getting me in at London my best advice to you guys is to get in touch with someone at ARUK ,they will play a pivotal part in any family that’s suffers from Alzheimer’s and you couldn’t find better support that I promise , there’s also annual meetings that you and your husband can attend ,and you’ll be sure to see me there , all the best to your entire family ,Lee Bramall

      • Rhodri Thomas 28 April 2017 at 8:03 pm #

        Hi Lee, I’m going through the same nightmare as you, my mother was adopted as a child at the age of 2 years old, her mother died of TB and her father emigrated to Australia whoever he was, anyway my mother started showing signs in her mid 40’s but passed away at the age of 60. We were told that it could be hereditary but because there was no family history we lived in hope, anyway my eldest sister has been showing signs of it for about 4 years now so it is the hereditary type, it’s the MAPT 10+16 faulty gene. I’m 44 and I have 2 young children and its them I worry about, if I have it they’ll know at a very young age like yourself. Luckily I was in my 30s knowing there was a 50% chance of inheriting it, I’m going through the genetic counselling process now because I want to know if I carry the gene, worrying about it can drive you crazy. All the best to you.

Leave a Reply