Heather's story part 2

This is my second time writing for YoungDementia UK.  I’m now 22 years old and my sister Lucy is 17.  The difference between this time and the last time is I wrote about my dad and my experience of having a parent with young onset dementia.  That was over a year ago.  With great sadness this time I write about what it feels like to have lost a parent with dementia.

Losing my dad 

Like life itself, dementia can be pretty unpredictable.  On Sunday 27 September 2015 I lost my dad, the most important man in my life.  On the Saturday me and my sister sat with dad and watched the rugby with him.  It was England v Wales and England lost 28 to 25, strange what you can remember.  It still feels like a blur, I was at his bedside over the course of the weekend and even though I know that wasn’t the man who took me on outings to the farm or threw me over his shoulders watching the rugby game, he was still my dad and I loved him.  I still love him.

I received the call he had passed away in the early hours of Sunday morning.  I went to the home and in his room to say my final goodbyes.  Part of me is happy that I did it and got some closure but part of me regrets it.  It is etched on my brain seeing his lifeless body in bed and if I’m being totally honest it haunts me.  Because when I think of him my mind runs straight to that memory and it kills me because that wasn’t him.  My dad took me on the London Eye and begrudgingly went to Thomas the Tank Engine Land, endless days out to the farm and on holiday and swung me over his shoulders whilst watching a rugby game, Forest matches you name it he did it.  Happy memories.

Living with the sword of Damocles 

 My dad had frontotemporal dementia for just over five years and during the middle few years I can still remember him saying that he, 'didn’t want to be here,’ meaning in the world I guess.  He went from a strong community-driven counsellor, rugby player and father to a fraction of that.  People reading this that don’t have someone close to them experiencing dementia will think I’m being heartless, but ever since he was diagnosed with dementia it only ever got worse.  This is something my sister and I accepted as we watched the man we loved so dearly disappear and eventually die.  Part of me feels relief that he is no longer in pain. Part of me feels relieved I am no longer in this state of limbo waiting for the phone to ring to tell me his condition was worsening.  I lived three years with the sword of Damocles.  I was trying to enjoy my time at University but my dad was ever-present in my thoughts; sometimes I even felt guilty for having fun and enjoying my time at university like the majority of my peers.

Learning how to grieve 

Some events I can remember crystal clear and others I…I don’t know, I guess I blanked them out.  I still find it hard to process what happened.  At one point I googled how to grieve, I don’t know why, I didn’t feel like I was sad enough or doing it right.  On reflection I’ve come to the conclusion that I did a lot of grieving whilst he was still alive.  Am I still grieving now?  I don’t know.  I can freely talk about him to people and just be having a fairly average day then all of a sudden I just well up from nowhere.  I tell myself he wouldn’t want me to be sad and it gives me some comfort.  I’m just trying to carry on with my life and make him proud.  But I can’t help but feel like there’s something missing from day to day.  It’s like I have this huge void that can’t be filled.  It’s diminishing in size but it will always be there, I learn to live with it.

I set up my Facebook group Dementia Support for under 21’s in the hope to connect with younger people that are going through or have gone through the same situation as me and my sister.  One day I hope that there will be a support network for dementia out there for people of all ages.

- You can read Heather's story part 1 here.



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