Remember me

My dad's legacy

Since 2012, this slide is how I have finished many a presentation at a conference or event. It's a simple philosophy, but a highly effective one at helping audiences remain grounded in the most vital aspect of any dementia-related discussion – the need to remember the person.

 

Remembering the person one of the topics of this year’s World Alzheimer’s Month (or World Dementia Month as I would prefer it to be called). For me, not a day goes by when I don't remember my dad, either through my personal reflections or through my work. I find that keeping my dad's memory alive, and helping others to learn from our experiences, is not only extremely cathartic but an amazing opportunity to help others that is really unlike anything else I could possibly do with my life.

 

I am mindful, however, that for some people whose loved ones have passed away having lived with dementia, remembering those relatives can be an acutely painful experience. We all experience dementia differently, and observe our loved ones through our own unique vision of them; for some people the pain, heartbreak and sadness is all they see and all they can remember.

 

Whilst I never deny the difficulties, sadness and heartbreak that accompanied my dad’s life with dementia - and actually frequently find that people would rather hear about those elements than the positives - it is the more positive aspects of my dad's life and care that I feel potentially offer the greatest insight, not least because despite all the awareness raising work that has happened around dementia, negative perceptions still outweigh positive ones.

 

For people whose loved ones are living with dementia now, if the positive messages don’t reach their ears and eyes, how are they to feel any hope, any sense of being able to live in the moment, and any way of appreciating how there are positive aspects to be found and enjoyed, if only you can find them and capture them, for however long they last?

 

Me and my dad

Without having those positive influences, so many families feel bereft, and often some family members will walk away from the person with the diagnosis. This leaves any remaining relatives to manage as best they can, and for the person with dementia to be condemned to feeling as though they’ve done something wrong. It’s no one’s fault that they develop dementia, but sometimes human emotions can be strangely mercurial in difficult circumstances.

 

I always feel immensely sad when I read about or talk to people who are really struggling to remember their loved one with dementia while that person is still alive. People sometimes hope distance brings closure, but if someone has been an important part of your life they can’t just be airbrushed out. Not everyone feels a natural inclination to stand by a loved one after a diagnosis of dementia, or indeed even just keep in touch, but some of those people perhaps just need a bit more support to see the difference they have the potential to make.

 

In my view, as networks, communities and societies we all have a responsibility here, because while the negative tidal wave of perceptions regarding dementia continues, it proliferates myths, intolerance and stigma, not to mention creating divisions that often wound people deeply, long after their loved one with dementia may have passed away. 

 

So, if you only do one thing this September for World Alzheimer’s Month, make it to put in that phone call, or write that letter, or make that visit, that says you haven’t forgotten a person you know who is currently living with dementia. And if you’re in the position I’m in with my dad and the person you loved is no longer here, think back, find that positive moment and tell people in your networks about it. 

 

We all have the potential to be the change we want to see, and from the smallest actions the greatest difference is often made. 

 

Until next time...

You can follow me on Twitter: @bethyb1886

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Reflections on a life lived and a man loved



My dad

It seems hard to believe that April 2013 marks two very sad milestones for me and my family. This month will see us celebrating my dad’s birthday for the first time without him here. Less than two weeks later, it will be the first anniversary of his passing.

We often say how ‘time flies’ – well the first year without my dad has vanished in tears, memories, hopes, ambitions, achievements and still an almost overwhelming sadness that he isn’t here to share in my life. Without my dad’s courage, strength, love, determination and inspiration I wouldn’t be writing, blogging, speaking, advising and campaigning in the way that I am.

I’ve written before about my dad’s legacy. My desire to share his story - our story - and use the experiences we had together to try and make things better for the many families who are supporting a loved one with dementia. More than anything I wish you could all have met my dad – although I doubt he would agree, since he was generally a very private man who never sought the limelight. To me he was an example of dignity, grace, humour, kindness and insight into what living with dementia means that no words I could choose will ever accurately sum up. You just had to have known him, and I was very privileged to call him my dad.

I would like to think that the dates we will mark this month as a family will be more about happy memories and reflections on good times than dwelling on what we were going through this time last year, which still haunts my dreams and brings tears to my eyes. In truth, however, I really don’t know how we will feel and how the emotions will affect us. Bereavement is a strange beast – it can allow you to live in relative happiness one minute, then plunge you back into deep sorrow, longing for the person you have lost and taunting you with that precious wish for just one more day with your loved one.

I have thought long and hard about what losing a parent means, and how you can possibly move forward after that. When half of the partnership that created you, dictated your DNA, and in my case gave me a happy, stable and loving childhood filled with cherished memories, is taken from you, my view is that it breaks a bond that can never be replicated or replaced. The love you feel cannot be transferred to someone else. Losing a parent leaves you with an emptiness in your life that you will never fill.

As anyone who has had a good relationship with their parents will know, from an early age you come to rely on their guidance and wisdom, the care they show you, the support they give you and the unconditional love they surround you with. No one else celebrates your successes like a proud parent, and no one is ready to pick up the pieces when you make mistakes like a loving mum or dad.

I feel immensely sad that my dad won’t be by my side to see me make my way in the world, develop my career, maybe get married. If I ever become a parent, he will never know the joy of being a grandparent, and sadly for any child I may have they will only be able to learn about my amazing dad from me, rather than having their own relationship with him.

What dad’s passing will never take away, however, is the memories I have of him, including the many happy times we had together during his dementia. It cannot take away all of his qualities as a human being that he shared with me through his parenting, and it will never take away my pride in him and in being able to call him my dad. His honesty, integrity, desire to help humans and animals alike, care and compassion is something the world needs far more of than it currently has.

They say only the good die young. Well my dad was 85, to me just a number since he certainly didn’t look it. Without the toll dementia took on his body I am certain he would have lived far longer, so in my mind he was a mere spring chicken at 85 years young. Surprisingly, maybe, I am not angry or bitter at his passing – I honestly believe that he felt he had given me everything I needed to go on in my life, represent and share his values and make him proud, and so he was able to take his rest.

Having dementia often meant huge struggles for my dad, and I will never truly understand how he bore them with such resilience and good humour. I would like to think that one of his coping methods was the hope that he had managed to inspire his youngest daughter to make sure that his experiences were not in vain. The promises I made to him in the days before his passing should have reassured him of that.

Although my dad was the catalyst for what I do, the beneficiaries are all of us. I hope that my dad’s gift to society will be greater understanding, support, insight, and ultimately improvement in the lives of everyone who he has left behind.

Until next time...

You can follow me on Twitter: @bethyb1886

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