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Dementia -merely human.

“I think that the only reason people hold onto memories so tight for so long is because memories are the only things that don’t change, even when people change..”   Unknown

This is a post that I  have wanted to write  for some time but my heart is still raw with pain. I’m comfortably numb as the song goes . No words I write can do justice to what this illness does to people we love.

We have had the plague

Chicken pox

Aids and HIV

Cancer.

The new cowboy in town in Dementia.

He has all the traits of the best cowboy in town

  • A steady hand

  • A look that says so much but not something you can be sure what it is thinking

  • It is true to it’s word

  •  It takes Pride in his work

  • A true perfectionist 

It doesn’t mind who it  consumes and takes out it the process.

This year DEMENTIA AWARENESS WEEK May 15-21  focuses on confronting your fears about Dementia.

The Alzheimers society is reaching out to give you support and information. You don’t have to fight this alone.  REACH OUT

I found this  – it captures how I feel whenever I see my Gran  and how helpless I feel.

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I’m going to show you some pictures of someone who has loved me for a long time.

But first

I must close my eyes

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AGE : 15.

STATE: awake

LOCATION : Kitchen ( Gran’s home ) South Africa

Gran comes shuffling in to the kitchen

“Que ce qui pas?

“Can’t sleep”

“I will make you a camomile tea” in her French accent .

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She spent a lot of time and money putting me in rehabs and looking after me when I was growing up.

I am possibly the  first and only person to have seen my Gran cry  that I know of — I’m not proud but honoured she trusted in me.

AGE:18 years

STATE:  possibly drunk or hung over

LOCATION: Gran’s Bedroom France

Grandpa was  not doing well. My Gran broke down.

All I could do was hold her.

She knew Cancer and Chemo  was going to be the   un-doing of him.

 He still tried to look after his ‘Trois filles’ ( me, Mom and Gran) until his last breath.

The greatest love affair ever!  ❤

What a pair they made.

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Grandpa got a massive contract with Loreal in the 1950′ -1960’s . He was the main sales rep for promoting the  Loreal brand  in Africa.

They travelled everywhere

Madagascar

Zimbabwe

South Africa

to name a few.

Gran had spent most of her life travelling. Her father was a general in the army. Her step father some sort of captain and she spent a few years in the cote de ivory and other places.

They had 6 children together

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And two other sons who I don’t have pictures of. She was and still is the queen of the family.

So much elegance ,grace and charm. She suffered a lot of heart ache in her life. Lost love, her mother was jealous of her as were her two step sisters.

She was kicked out of her home when she was 16 years old and pregnant. She went on to become a femme de menage and a beautician to survive the streets of Paris..

When she met my grandfather she never had to worry about love or  money again. Even when he passed on  from Cancer. Her twin sons and my own mother  still  after her.

The relationship she had with my mother was unbreakable- even now. My Gran  still demands my mothers time and is happier when she has her to herself.

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This last picture was taken in 2012 -four years ago.  My Gran’s 79 th birthday

She loves to laugh and is still a social butterfly just like my Bella Bee-

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Alzheimers and Dementia does not discriminate.

A cold and bitter night in the U.K..

 The Wind screeched out  a name

A lady manages to fumble with the keys to a door and lets herself out. 

Where is she going?

No shoes,

a  flash of car lights, 

 Great big BULGING eyes

FLAP ,FLAP

 a night gown whips around the lady’s ankles 

She couldn’t live on her own any more. She was find walking the streets in her night clothes, by her carer ,at the time on the coldest night the U.K. had in 2013.

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Gran in her new home – the first of three new care homes she would move to until the present.

This was a place with bells and whistles on. It was like a 5 ***** hotel.

In the few months she stayed here.

She was found sat in bed  drowning in her own piss.

She had spread faeces all over the walls and under her nails.

The home said she was too much trouble.

Funny, they didn’t have a problem with taking our families money for the few months she was there.

New home – two days until Gran’s 80th. Her twin sons came out to surprise her

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The day my Aunt died of lung cancer . My Mom got a call from her care home to say Granhad broken her hip. She spent 12 days in a normal hospital ward.. Always calling out. Neglected.

WAS THIS WHAT SHE SAW?

We thought we were going to lose her.

Three nurses,

A grand daughter,

A daughter.

a sedative

2 -3 hours

a struggle

Another sedative

FEAR

SCREAMS

SWEAT

PORES

TEETH EXPOSED – FERAL

EARS POUNDING

THIS SOUND      – my idea of Dementia raging  in audio.

She couldn’t speak but she could scream and lash out.

 I don’t  think I slept for 2 days after that event.

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Christmas 2009.

Gran  in hospital . The last time she would ever walk

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Gran loved to walk

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Gran will never walk again.

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She had to be moved to another  home that could meet her needs. No fancy hotel .

Gran’s 81st birthday

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I go see my Gran every week with my Mom. I take my daughter. I don’t want her to forget my Gran.

She went from speaking two languages, walking, laughing, taking pride in her appearance to this person.

To being a person who would blanche if she knew what she was like now.

Maybe she does and that is what makes her so angry still. 12728922_10206394372312168_9205953428105637055_n

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Yes, she screams and she can’t talk and she scares me sometimes because I don’t know what to do to help her; but she is still my Gran and she has a mental illness. 

IT IS NOT HER FAULT!

Her home she lives in now have really put quality over quantity. It;s not a show home -it is a home -home -check out  ROBERTS TOWN CARE HOME FB PAGE  .

The only people who have got my Gran to a place in her illness where she is  probably going to be able  to come to my wedding ceremony in June.

May is# MAKE MAY PURPLE   month.

Across the world May is the month for creating mental health awareness.

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The one’s left behind

  • a unique take on world suicide prevention day *

Who is this lady? She is elderly, yes.

A grandma,a mother a sister, an aunt, a great grandmother.

I don’t know. I have forgotten. Hang on a minute…

Aaah yes there was this one time that I was sat in her house -plush, ‘propre’ , stylish and I couldn’t sleep.

I kept on getting up to go to the cupboard on the far right of la cuisine that housed all the gigantic Cadbury’s chocolate.

I ate and I ate and I ate some more. I always seemed to be able to eat more.

I didn’t it like it when she bought the dark kind. So bitter. So classy, so not me.

But back to la cuisine.

Footsteps pander lightly behind me. I turn and look around and I look into the eyes of a lady with pure class-sans maquillage. This seems to counter my non- class evolved youthfulness. The lady asks me a question ‘Ca Va?

I’m expected to answer with the same ‘ca va.’ but it is something like 3 am in the morning. Obviously ‘ca va’ is not appropriate for this setting.

I don’t know why I can’t sleep, I confess. I’ve shoved a load of pills down my throat in an effort to be like the one whom I shall refer to as the Manic depressive. The lady sits me down and makes me a Sleepytime tisane – . Good herbal shit. We sit at the kitchen table with our ‘Sleepytime’ tea, I can’t remember what we talked about.

I have a habit of forgetting things, you see. It is so frustrating. I go back to bed feeling cared about. Why didn’t I feel grateful then?

No regrets. Have no regrets. Okay. I try not too. I wish I had paid more attention, then maybe I wouldn’t forget so much.

I can hear her laughter in that loud roomy part of my brain, it’s threatened me it will become a real auditory sound that knocks me sideways with fright turning me into a paranoid wreck.

I have to remember that laugh. She used to laugh at my jokes. She loved me. She told me she loved me all the time.

She also loved another – another woman-my mom. Angelic looking, graceful, naive and I don’t know – wonderful?

This lady helped me out with the angelic-looking lady. Yes, I remember, one poignant night, the angelic-looking manic depressive and I had a vicious fight. I took a braai fork to her neck.

I was fucking going out to drink and get strung out on drugs and Miss Manic Depressive could mope in her stupid illness and fuck right off.

Well, she took that big FU literally. We had this stock of prescription pills that could take our local pharmacy out of business – bad joke- that’s why I rely on comedians for such amusements (Omid Djalili and Gabriel Iglesias being two of my favourites ). Nothing like a next-day hangover and a shrill ringing phone to make me grab a handful of downers.

I’m not ready for the sunshine just yet- maybe not ever. The lady on the other end of the phone wants to know if the manic depressive is okay. Of course, she is ok……

I turn over

…but she isn’t.

She is one tunnel turn away from death. I need some Rohypnol and valium and I need t

hat lady on the end of the phone.

She says she is going to get the next one hour flight from JHB airport to Durban and I need to get the manic depressive to a hospital. I don’t have health insurance. I’m 15 years old.

A cocky shit who obviously knows it all but nevertheless in my narked upstate I somehow manage to get the angelic Manic Depressive a space in a run-down public hospital in Africa – in a- I kid you not – broom closet. Sick people were lying on the floors, covered in congealed blood, in the corridors of this hospital. So I count my blessings that we had some type of room and a bed.

The lady meets me at the hospital. It’s touch and go. We are rooting for survival on this one. Black tar leaks down out through a tube from some part of the manic depressive’s body.

Hours pass.

She is okay- stable.

She is in a coma.

The Lady transfers her to a more upmarket private hospital. She has the master card. We spend the night next few days at the Oyster Box hotel – in a chalet. She takes on me and my two cats. Lilac and Mocha- and we all sleep in the same bed united by our love for the angelic manic depressive one.

We don’t know if she is ever going to walk again. I mean it was an overdose with powerful intent. No, pithy cry for help as some believes a suicide attempt is. The angelic manic depressive has a new name angelic, rapid cycler Bipolar.lady in The other lady is my grandma- as you probably have figured out. We go and see her every week. She broke her hip back in Feb 2015 and can’t walk anymore.

Okay… so that happens with a lot of old people. Yeah, but this lady, my grandma has been stripped of her dignity, identity, memories, and she can’t remember she can’t walk. She is stuck on a loop – every few moments she tries to get up and screams in frustration when she can’t. This lady sitting in the middle is my relationship with someone I love who has Dementia and Alzheimer’s.

I know I’m not writing something fucking profound but she means something to me and her family. She is living a world with no faces, no colour and the world speaks another language to her. How is she meant to interpret all this shit?! People talking.

Loudly?

Other elderly people not moving- crying, shouting, fondling themselves to remember that they too can feel.

My Chronic Anorexia 10 stone self could envy my grandma’s current weight. 5 stone if that. She forgets how to eat. Imagine that?

What type of existence is this?

This is where I get political. Let people die with dignity.

I signed up for the campaign years ago. Who is this lady? She is so much more than she looks. She has had a life people probably can’t even dream up and a life where people would also be horrified how she survived such heartache, ( love is the answer here, folks) but for today we can’t go back into the past too much without forgetting. I don’t want to forget, not today. Those two memories I can hang and frame in the gallery of my mind.

They are mine. No one can take them away from me but Alzheimer’s can. Dementia too.

You know what really makes me sick about all this? When a person with these illnesses die, Alzheimer’s and Dementia don’t take the credit. The diagnosis of death is usually a secondary symptom. How twisted and messed up is that?

Does she remember her husband? Where does she go?

I should have been a Neuroscientist or something. I want to know what is going on in her head and fix it. All clichés but they are my clichés for today. Can you believe people are being diagnosed with these maladies at as young as 25 years of age?

I would rather choose to die than have everything taken from me. Would my Grandma say the same? I wish I had asked her.

Me: ‘So Gran, let’s talk about something so morbid as to how you would like to die.. ‘

I’m putting it out there. Me? I don’t want to suffer and I don’t want to feel pain and I don’t want to not be understood. That is not living that is stuck between two perverse worlds. I want my family to pay the ferryman and for him to take the money and take me along the river Styx to E

lysium and let me die with dignity.

Information on the dying dignity campaign http://www.dignityindying.org.uk

I have Dementia and I still laugh

Never forget how precious your life is.   This is my gran.  She has dementia and if she had the choice she would probably love to exchange mind and body with most people.  Counting your blessings. I am counting  mine.