The Identity I Didn’t Ask For
My name is Natasha.
I am a Daughter.
I am a sister.
I am a wife.
I am a daughter in law.
I am a sister in law.
I am an auntie.
I am a cousin.
I am a friend.
Dementia steals these identities and hinders the relationships within them.
Dementia has also given me a new identity that I didn’t ever ask for:
I AM A CARER.
My mum was diagnosed with Early Onset Alzheimers 4 years ago at the age of 56 – there was probably a two year fight before that to get a diagnosis, but that’s another chat for another day.
Within those 6 years I think I have changed as a person dramatically and my relationships with people have changed through no-ones fault but dementia’s.
These relationships have changed because Dementia steals your time – you spend time educating yourself on what Dementia is as no-one ever sat me down to explain – what to expect, how to help mum on her journey, what to look out for as warning signs of progression. I never knew at what point mum was progressing and what I should be doing to aid her.
You spend all this time researching and then what little time you have left you spend with your mum making sure she is OK.
Where does that leave time for Tasha and the identities listed above?
Dad has needed support from day one, I have not only lost my mum to Dementia but I have lost my dad. Our lives revolve around Dementia and not being Father and Daughter. I am constantly worrying about both my parents and how I can help them – are they not supposed to be the ones worrying about me and giving me direction?
I moved from East Kilbride to Edinburgh 4 years ago and this hasn’t helped anything.
My nephews are two of the most important people in my life and I remember the day my eldest nephew asked
‘why don’t we see you as much anymore’
I didn’t know what to say
How do you tell a 7 year old you’re not around much ‘because granny isn’t well and anytime I am back home I need to make sure Granny is OK’
Dementia , the illness that steals from day one and doesn’t stop stealing.
I have probably lost touch with friends and cousins but I know if I were to meet up today they would understand. But I can’t pretend I am the only one going through a hard time, we all have our own battles yet somehow Dementia has eaten away into my friendships.
It is the elephant in the room when I meet up with these people, its the reason I don’t know their children as well as others do. Again because I struggle to juggle my time between caring for mum and being Tasha the friend, the cousins, the sister the auntie.
Mum being under the age of 65 means we don’t get help with care – despite being told she cannot be left alone almost 3 years ago. We are a family of working age and there is NO support for people in our situation.
Every week I leave my home on a Wednesday morning, go to work and then head straight to East Kilbride to ensure dad gets a night where he can sleep and to not worry about mum and I care for mum on a Thursday.
I remember dad saying once that he dreads a Thursday night as he is back to being alone despite mum being there.
I am away from my home and my husband for almost 48 hours – thankfully this hasn’t affected our relationship but not everyone can be as lucky as me.
We unpaid carers aren’t recognised –
We save the government money whilst trying to ensure our relationships are not affected whilst trying to cope with the change of our loved one who has been diagnosed. How is this fair?
I haven’t spoken much about my relationship with my mum but this is an obvious one, I no longer have a mum in the way I had one for the first 26 years of my life. That relationship changed that very day mum got sent home from work and the diagnosis process began.
Whilst I talk about relationships that have changed, Dementia has introduced me to new relationships and I don’t think I’d be wrong for saying so but I wish these were relationships I never had to form.
I started my own blog and Facebook campaign called But Alzheimer’s Is For Old People, where i talk about our families journey. I aimed to highlight that Dementia is not just for people over the age of 65 and is way more than forgetting things, as i found this was peoples perceptions – mine included – when we started to speak about mums diagnosis.
We were always hit with the phrase ‘ But she’s so young’
This still annoys me as it devalues those whose are diagnosed over 65 as if they should expect to get a diagnosis because its a natural part of aging and it makes harder for those under 65 to be diagnosed.
It’s been a huge release for me and has allowed me to connect with people in a way I wouldn’t have had a chance to if I didn’t put myself out there on the front line.
Through doing this I have connected with Ray and John, who are featured on this website as well and in turn working with TIDE who have both actually made me realise that despite the fact we fight day in day out for mums and everyone’s else rights who has been effected by Dementia, we NEED to recognise and take care of ourselves – the carers.
If we don’t take care of ourselves and speak up about the support we need then who is going to look out for those who have been diagnosed? We are in the journey together and we need to have the same support.
Its so much harder then I ever thought it would have been, if you don’t immerse yourself in the world of dementia then I would hate to think how much more difficult things would be.
Please remember that we are the ones living the journey 24/7 and anything you can do to help us make the journey easier then please do so.
You are the people who can help me , mum, dad, my nephews to help us maintain a relationship as a family please don’t let Dementia steal our identity and relationships.
Every journey is different and we need to recognise this.