When I was asked to write about this I wasn’t sure how I felt about it. You see, it’s hard to talk about the sad memories; of watching someone bright, articulate and so full of love disappear in front of you, and bringing those memories to the fore is difficult when all you really want to remember are the happy, joyous times, when laughter was prominent.
You really need to understand what Nan was like to understand the devastating effect on the family and particularly me:
Nan was the youngest of 14 children, brought up in Ireland; they were strong, catholic, independent and fiery – protective and family orientated – they did hard work and didn’t take charity but gave whatever they had. When she was a young girl she was always in trouble…a bit of a rebel.
She loved to dance laugh and be around people as well as her freedom, but being the youngest and a girl, she was always caught out – her honesty, wit and humour always won though….and people loved her back, from the homeless man on the sidewalk she gave coin to, to the extended family and friends she took under her wing.
She never gave up on anyone or anything; Nan believed you could do anything you set your mind to do.
When I was young and fatherless, she was my lioness; she defended me over anything but she also drove me hard to make something of myself; believing education as the way to any success.
You see, she had been given a scholarship but her mother wouldn’t take the charity of uniform from the nuns so the place was given to someone else and she wanted me to achieve everything she didn’t have the opportunity to.
She married an only son from a strong Jewish family and had 2 surviving daughters.
Nan had lost children, brothers and sisters (she buried all 13 of her siblings – some died in foreign wars).
She had been bombed out in the war – twice, built businesses, lost them and started afresh so many times that we were never a burden, we were her duty and loves of her life.
There is so much more about this woman that formed her, made her strong and resilient and bright and witty and clever and hardworking ….the list and stories are endless…think Mrs Brown but real and you have a hint at the woman…and her temper….don’t go there…..mount Etna followed by instant forgiveness and hugs.
She was my developmental role model and my guiding light, my living angel with the soul of the devil and goodness running right through her very marrow, but the stubbornness of a mule and the fierceness of a tiger.
A real woman who loved, laughed, cried and never gave in to anything.
Now you have a flavour of my Nana, you will understand how devastating this illness is – it takes away your personality slowly , eating away at your brain cells and your dignity, removing memories backwards and reduces you to an incoherent baby like state. And when you have to care for someone you love and watch them slowly fall away from you it causes great pain.
Especially knowing that you can’t help them, knowing that you can’t stop it.
Sometimes getting a glimpse in their eyes of recognition…almost like they know they are dying from the brain out; Watching your nana ( who was so particular about manners and appearance) unpick a new cardigan with a fork or tell her husband of 60 years to eff off, then taking a picture of them together from her bag and lovingly tell you that’s ‘her Morris’, her best friend. Unaware he is sitting next to her trying to hold her hand.
He sat with the belief that a tablet will help eventually; how can you describe that to someone and expect them to understand.
When I was pregnant with my first child, I had to stop visiting for a couple of months because when I got outside I cried so much I threw up.
I felt like I had lost my best friend, my rock – the one person who truly understood me and still loved me for all my mistakes and faults regardless of what I did ( don’t get me wrong – we weren’t perfect and she wouldn’t hesitate to tell me) but now there was a slow decline; a wasting away of memory – like someone had a huge eraser and randomly scrubbed out meaningful things indiscriminately – it’s cruel and heartless.
Watching my mum do the majority of the caring at the beginning was so hard, the burden of lack of sleep, stress and worry – the feelings of guilt in the family, the terrible decisions that eventually come…god I don’t know how we did it.
I say to my children now…don’t feel guilt, don’t let me make me a burden… I would hate it …that’s why you don’t talk about it much.
The good stuff that comes is the support and strength we all gave each other – the shared trauma helps but the real feelings are deep inside and very personal and individual to us.
I was the one who had to take Nan to her first home – it was one of the hardest things I had to do because she trusted me and I was the only one she would go with….guilt…..doesn’t even begin to cover the emotion.
Going back 24 hours later because they couldn’t cope was even worse – finding the first specialist home in Yorkshire was amazing. Nan was one of the first residents, but I had to do it all again and leave her behind me – I cried so hard I thought I would stop breathing.
Going each week and seeing not only her but other residents slowly fade is hard too, it’s a hard journey for everyone and all you can do is keep happy, smile and keep going and know that it’s all you can do to be there.
Many other residents never had visitors once they were left, but not Nan – she was never bundled away or forgotten, even though she forgot us.
Although, even when she really had gone, when I walked in she would look up at me and touch my face. I always believed she knew me and that I was with her – even though all medics told me she didn’t know anything, I knew.
I stayed with her to the end, but I never left her side for days and I know she knew we were there.
In the end I begged her to let go and be at peace, but she fought hard to let go of what was such a fulfilled life.
She was my inspiration and my mentor; she gave me hope, faith, resilience and a belief in people.
She was tough and challenging and hardworking and I still feel angry that she got this illness – the one illness that she would have hated; it took away her ability to think, to talk and communicate and even to laugh. It took away her dignity and her pride. I know she is fine now but I can’t help feeling how shocking this illness is and what it can do to families caring for people with this illness – you really do have to live through it to understand it.
A disease that’s rids your personality and who you are, is one of evil.
Please share this story in awareness of dementia and Alzheimer’s disease.