My Mum is a carrier of Fragile X Syndrome, my Grandpa was also a carrier who passed it onto my Mum and she passed it to me…… now sadly, Mum has the onset of Dementia.

My Mum has always been a free spirit and has always been a bit of a nightmare too, especially when my sister and I were growing up.  It was easier for me as I was nine years older but sometimes for my sister it was tough not having our Mum around.

One of my earliest memories of me and my Mum was sitting in Hyde Park together – she was so beautiful, and always got the stares from men, she also revelled in it.

When she was 41 she was diagnosed with pre-cancerous cells in her womb so decided to have a hysterectomy as she had now left my Dad and was living in Oxford, the owner of a pub and guest house with her partner John and did not want any more children so this was an easy decision to make.

In 1979 when you had this op you were advised not to do anything for at least 12 weeks, not my Mum, she decided to tour around Spain in a campervan with friends just 4 weeks after having major surgery.

Years later, my Dad and Mum started seeing each other again, first of all going out for a meal then they had a few holidays together and then my Dad asked my Mum if she would like to get married again – so they did!  Mum and Dad got remarried in 2001 and I am not saying that they fell in love all over again but they were happy and content with each other which to me is very important.

Sadly Dad had a stroke in 2006 and Mum became Dad’s full time carer as he had been left incapacitated with no language or the use of his right side.  Mum cared for Dad until she fell whilst walking and broke her leg so we had no option but to put Dad into a care home where he still is, and Mum has been visiting him every week since until……..

It all started at Christmas, Mum who is now 81 had come to stay for the holidays, within 10 minutes of arriving asked when she would be going home.  Another 10 minutes went by and the same question was asked.  Mum then continued to ask this same question over and over again during her stay with us and whilst I thought it a little strange parked it to the back of my mind as the boys were home and over Christmas it’s always an anxious time for us all.

Thankfully I had already made the application to become Mum’s Power of Attorney for both health and finance and without this the implications of trying to manage Mum’s affairs and speak with health professionals on her behalf would have been so much harder.

Mum continued to show signs all was not well when in early spring she decided to drive to see her sister, a 40 minute journey by car, two hours later I received a call from my cousin asking if we knew where Mum was as she was due to have lunch with her and the family and she had not arrived?  Another two hours passed and I managed to finally get hold of Mum by phone, she said she had got lost and then decided to drive home again, forgetting to let her sister know.

I then kept getting phone calls, I am not talking one or two, Mum called me sometimes 12 times a day.

My purse has been stolen!

She contacted the police each time, and I am not sure what they made of all the calls.

Her purse had not been stolen she had just placed it somewhere and then could not remember where she had put it.

Another call – my car has been stolen? 

Where were you Mum?  I was in the little supermarket and when I came out my car was gone?  Are you sure you did not leave it somewhere else.  NO!!!!!  I am not stupid I know exactly where I left it.

We had to report the car stolen.

A week passed and we were trying to piece together her movements, we remembered that Mum had gone to the post office so we checked the local carpark nearest to the shop and there was her car, safe and sound.  I then took her car keys as I was extremely concerned that she would drive and cause an accident, she was not happy with me, which is a slight understatement – she screamed and swore at me down the phone every day saying she was perfectly fit to drive but then never remembering she had called me just five minutes earlier each time.

I am now really worried……

So I got Mum a doctor’s appointment and in early April off we trotted to see the doc and see what he had to say about her memory loss.  Mum kept asking why we were seeing her doctor and I explained as gently as I could that as she was forgetting things it would be a good idea to get her checked out.  The doctor ran a few tests linked to the Dementia memory test assessment and it was clear that Mum had a problem, including not knowing what day it was, what year we were in or family birthdays.  The doctor then did a blood and urine test and we returned home until we heard more.

Within 24 hours we received a call to say her calcium levels were extremely high (it’s called Hyperparathyroidism) which could cause the memory loss (delirium) and also the risk of stroke or heart attack.  Within days Mum was admitted to hospital and it was clear her calcium levels, were rocketing due to the very random conversations we were having but we were also worried that this was the start of dementia too.

Mum spent two months in hospital with the medical team trying to get her calcium levels down and because it was quickly established she would need full time care a battle also commenced with social services.

So here we are from when Mum went into hospital in April to now the end of August.  Mum is in a wonderful care home who specialise in Dementia care which is just five minutes from our house in Saltdean.  She has her own ‘proper’ front door and a small room but with only 20 residents and a wonderful care team on site she is overall happy and more importantly safe.  I can visit anytime I want and she can have her very elderly dog Duffy (16 years old) to visit as often as she likes too – so perfect.

We still have telephone calls only now she asks where her house keys are.  She doesn’t need any as the front door is locked otherwise I am sure she would escape.  She also asks how she is going to pay her hotel bill as she has no money, which in a way is another compliment to her care home.

Mum is fantastic in the mornings and this is when I go to see her and take her out, however in the afternoons her memory fails @dementiauk.org call this ‘sundowner’ when the brain becomes tired and then the memory fails.  Mum has also taken to swearing……. What more can I say as she never used to do this but apparently this is also common with Dementia patients, unlike me who does have a ‘potty mouth’.

Interestingly, out of everything she has forgotten the one memory she does retain is my Dad, and she worries she has not visited him and talks about him all the time.  It’s unfortunate that Dad is in a care home in Hounslow so we cannot visit every week but we did visit today and both were so pleased to see each other, sadly both cried when I said it was time to go home to Mum.

Another interesting piece of information – My Mum’s sister also has Hyperparathyroidism so I wonder if this is related to @Fragile X Syndrome. https://www.nhs.uk/conditions/hyperparathyroidism/

I mentioned earlier about applying for Power of Attorney for Mum and I really urge everyone to think about this – not when you think you are getting old, but now whatever age you are.  It really does make life so much smoother when dealing with banks/building societies, pension companies etc.  Sadly none of us know what’s around the corner and if you have an accident that leaves you incapacitated or a stroke/heart attack your loved ones will have so many problems trying to arrange everything for you. Since the Data Protection Act was update in May 2018 it is now a minefield so I urge you all to just get on and do it.  http://www.ageuk.org.uk

You know I like to end my blog with either a poem or song lyrics, so this is for my Mum who loves this song and for all other parents, sisters, brothers and family members who have been diagnosed with Alzheimer’s/Dementia.

Midnight
Not a sound from the pavement
Has the moon lost her memory
She is smiling alone
In the lamplight
The withered leaves collect at my feet
And the wind begins to moan

Memory
All alone in the moonlight
I can smile happy your days (I can dream of the old days)
Life was beautiful then
I remember the time I knew what happiness was
Let the memory live again
Every street lamp seems to beat
A fatalistic warning
Someone mutters and the street lamp gutters
And soon it will be morning

Daylight
I must wait for the sunrise
I must think of a new life
And I mustn’t give in
When the dawn comes
Tonight will be a memory too
And a new day will begin

Burnt out ends of smoky days
The still cold smell of morning
A street lamp dies, another night is over
Another day is dawning
Touch me,
It is so easy to leave me
All alone with the memory
Of my days in the sun
If you touch me,
You’ll understand what happiness is
Look, a new day has begun

Songwriters: Andrew Lloyd Webber / Trevor Nunn / T.S. Eliot / Zdenek Hruby