Welcome to D for Dementia

Ever wanted to know what it is like to be directly affected by dementia? Or maybe you are already, or have been in the past?

My father had vascular dementia for approximately the last 19 years of his life, which began when I was just 12 years old.

As a family we saw it all during these (almost) two decades, from experiencing NHS services, hospitals and care homes (including living under the failed care home provider Southern Cross), through to the day-to-day reality of watching my father living valiantly with a disease that would eventually lead to his death.

The challenges faced by each area of the healthcare system in coping with dementia, and their successes and failures, are intrinsically entwined in dad’s life. Like so many before him and sadly so many since, dad’s diagnosis was perilously delayed, and from then it was a rollercoaster ride through the progression of the disease to finally how end-of-life care was provided in his last few days.

There are numerous permutations in how dementia, in its many forms, manifests itself. As well as living through dad’s dementia, I have met so many other wonderful people living with a form of dementia, gaining huge insight into their world, as well as confronting the challenges faced by their loved ones and the many carers and professionals who work in this specialised field.

Dad’s years with dementia ended in April 2012, but for me the quest to provide support and advice to those faced with similar situations, inform and educate the wider population, promote debate, and campaign for improvements in dementia care and changes to the care system in general goes on.

I hope that you will join me regularly on this blogging adventure, interact and engage, and most of all find a greater understanding of dementia within these pages.

Until next time…

You can follow me on Twitter: @bethyb1886
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16 thoughts on “Welcome to D for Dementia

  1. Hello Beth, We were at a recent meeting at Macintyre Dementia, which we found so good and my daughter who is cared for by Macintyre in Redditch found Wendy Mitchells talk so helpful as her nan suffers from dementia. The reason I am contacting you is I was wondering whether I could have a chat about a project a friend and I are putting together about poetry. Thank you for all you are doing. Jo and Jess

  2. Your compassionate and intelligent approach to the whole issue of Dementia would make your dad so proud of you Beth. Society owes you a debt of gratitude. Ginny Burges

  3. My Husband's Mother has suffered with Dementia for a long time, and every day, I am amazed by the way in which he cares for her. It is very hard to see Mum as she is now, to how she was. But, I think people who care for sufferer's are truly Humane and wonderful people. Just like yourself.

  4. Hi Beth,
    I just heard you on 5Live and your moving first hand experience with your dad. I'm looking after my 90yrs old mother and had to leave my job last year to do that. It is rewarding, frustrating but more importantly she is my mother who was very independent and mobile ending up with completely dependent on others.

    Keep up the good work.

  5. Thank you Claire, I am very touched by your comments, they are very kind. I hope my blog will help you over the coming weeks and months. All the best to you and your family, Beth

  6. Hi Helena, so sorry to hear of your mum's vascular dementia. My father went through a stage of huge emotional reactions – to see a grown man crying so readily was hard to get used to at first. Your mother is perhaps now clinging to you with hugs and questions in the way she might have done with her own mother, or someone else in that similar parenting role, during her childhood. It sounds very much like a need for extra love and a feeling of security. It is very hard to go through the role-reversal that dementia entails, namely that you become the parent and your parent becomes more child-like, but all I can say is that, in my case anyway, you do get used to it.

    With regard to the 'D' word, you can only reassure your mum, like we did repeatedly with my dad after his diagnosis. Avoiding the 'D' word isn't going to be possible forever, but your mother can live well with dementia if she has the right support and services, and it sounds like you are a wonderful daughter to her. Your mother's fears may also be based on how dementia was approached many years ago, but there are so many amazing things around now that can help people once they have been diagnosed, and discovering that may help to comfort her.

    Yes, often one family member does take on an awful lot! In the last weeks of my father’s life my brother thanked me many times for everything I had done for dad. Us girls are made of strong stuff, and I really hope my blog can help and support you over the coming weeks and months. All the best, Beth

  7. Thank you Julie, very kind comments. I am so sorry to read about everything your family has been through.

    I hope my blog will be helpful to you in the coming weeks and months.

    Take care and all the best to you and your family, Beth

  8. Thank you Vince. I hope my blog will be helpful to you in the coming weeks and months. All the best, Beth

  9. Just found your blog via the link on Alzheimers Society Facebook page. Thank you Beth. I am humbled to see that your aims for the blog are to inform & educate, support & advise when you are so recently bereaved of your father. An enormous act of selflessness in your own hard times. 'Thank you' doesn't say enough but it is heartfelt. I shall continue to read with interest as I am at the beginning of the journey with my Mum & possibly my Dad too, awaiting diagnosis & trying to educate myself in order to help them the best way I can.

  10. Hi, I came here via Julie 🙂
    My mum had a series of TIA's and seizures from Nov 2009 – May 2010, which left her with vascular dementia at age 68. SInce then I see her every day, she lives in sheltered housing a mile up the road. There are good days and bad.

    We have an appointment at the end of the month at a new dementia unit at the hospital, called The Emerald Centre. But I am worried about the appointment, as although they took the 'D word' out of the name of the centre, they have lots of literature with it on, and then the nurse's name badges, too, will have 'dementia nurse' on them…. mum does not know she has dementia, just 'memory problems', and I think she will be devastated if told she has dementia. Sometimes she has clung to my arm and wept, and said, "I'm not losing my mind, am I?"

    She never used to show emotion, never even hugged me when a girl. One of the things I've found difficult is the change in her personality, so that emotions are so close ot the surface and hugs and smiles are generously given, but so are tears. I have had to get to know her again.

    Caring is an exhausting role, and I have found it seems to be the norm that it falls on one member of the family while other siblings- usually the brothers!- make themselves scarce!

  11. Nice work, Beth. This kind of first-hand experience is just what many of us need.

    Best wishes

  12. I've come here from Lesley's blog and like you am directly affected by dementia and all it entails. Having experienced it first with my husband's mother and having watched her degenerate as Alzheimers ravaged her I now have to watch my own mum struggle to understand what is happening to her. Like your father she has vascular dementia but 'fortunately' she has made it into her 80's before her life has been affected. We have been living with mum's dementia for nearly two years now although I suspect it had started sometime before we became aware of it (hastened by a stroke in 2010). Sadly mum has had to move away from her friends to live in a care home near us. We could have left her near her friends but would they have kept visiting as she deteriorated?

    I am so sorry for the loss of your father but it is true to say that you have lost him many times over already to this awful disease. The predicted statistics of those likely to suffer from dementia in the future are very frightening. My husband's mother and grandmother and his aunt and uncle both succumbed to Alzheimer's so we do worry that he may be predisposed himself.

    I hope you enjoy blogging and get lots of support in spreading information and awareness.

  13. Well done, Beth. Let's hope your blog brings more awareness to people who aren't affected by this horrible disease and support for those who are. Hope everything's okay with you. 🙂 Lesley xx

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