Chapter 4 - The Diagnosis

It was November 2001, I woke up as dawn broke – lying snuggled in bed listening to the caw caw of the morning bird song.  I had not slept very well as I was thinking about taking Mum to Aire Court the next day for an assessment.  I knew something was very wrong.  My head was scattered like a pack of cards in the eye of a tornado.  Mum’s whole demeanor had radically changed in the past few months.  Forgetfulness, her writing, unable to find the right words, down in the dumps was now a daily occurrence.

Mum had also recently been in hospital, as she had just fallen for no apparent reason.  She had had some scans at St James’ Hospital, which had showed some brain damage.  To be honest, I cannot really tell you any more than that, as I was in such a fog, I cannot remember!  I had been to our G.P. and it was him that had arranged this referral.  A few weeks earlier whilst walking with mum, she happened to cry, “I really don’t want to go like my Mum”.  “Am I”?  “Am I like her”?

“No Mum, you are not like my Grandma”, I replied anxiously, trying to reassure her.  “It’s only stress Mum, stress can affect you in so many ways”, I carried on in a desperate tone.

At 10.00 o’clock prompt I arrived at Mum’s.  To my pleasant surprise she was up, washed, dressed and ready to go.  Her auburn hair dye had eventually all grown out.  Mum had been a red head for years.  She now had a kind of child like hair cut, straight cut to just below her jaw line and a super straight fringe.  She had very thick hair and it always stuck out to attention at the sides.  The grey tone matched her face as I had noticed her apple like rosy cheeks had diminished.  Her skin now looked sunken and sallow.  “Come on then lass”, I lead Mum by the hand towards the door.

Allan shot me a quick and perspicacious look.  He knew what the outcome was going to be.  They had seen it in my Grandma; she had only passed away a few years before.

It was a very cold day, although the sun was very bright and I had to put my sunglasses on to drive.  It was only a ten minute drive to Aire Court, which is a mental health centre, specialising in the over 65’s;  we were there early for our appointment.  The ladies on reception kindly made us a coffee and feel welcome.  Mum seemed quiet and kept giving me a confused smile.  Eventually, a tall slender male figure in a grey suit peered around the corner. “Mrs. Bartle”, he said in a gentle tone”.

“That’s us”, I smiled, helping Mum out of her seat and following him to his room. 

Prior to the assessment being carried out a Doctor came to check Mum’s abdomen, as she had been complaining a lot about pains.  She lay on the bed and the Doctor asked if she could lift her blouse slightly, so he could feel her middle area.  Mum flashed me a confused look, so I lifted her blouse, I lifted her vest and then I lifted another vest, I found one bra, which was probably ten times too big for her and then another vest.  “Goodness me Mum, where are you”, I laughed.

“I’m here”, she replied with a childish giggle.

The Doctor and staff all laughed as we all tried to find Mum’s tummy under the abundance of clothing.  After the examination, of which Mum laughed the whole way through, we were ushered back to the Consultant Psychiatrist, the grey suited man.  He was a very gentle man and courteously pulled out a chair for Mum and I.  Mum sat down with a big cheesy grin on her face, I caught a glimpse of those once beautiful red apple cheeks as she flashed me a smile.  Sitting childlike, with her arms beside her and her knees touching at the middle, she shot the consultant a look of pure mischief, “Is it time to go now”?

“Not yet, Mrs. Bartle, I would just like to ask you a few questions”, he replied kindly.

“A few questions”, she repeated in a kind of supercilious tone.

She began to rock slightly, back and forward, like a child ready to be reprimanded by the head master.  Her purple skirt had ridden up a little, revealing her tiny knees and her American tan support knee socks; looking so cute and vulnerable, she gentle placed her hair behind her ear.

“Do you know where you are Mrs. Bartle”? The consultant asked.

“Well if you do not know where you are we’re in a right mess aren’t we”, Mum chuckled, again flashing me that mischievous look.

You could see by the look on the consultant’s face, that he thought it was going to be a long day.

The consultant asked Mum many questions, for example, “Do you know what season we are in”? “Who is the Prime Minister”? Etc, etc.  Furthermore, Mum was asked to remember words and reel them back to him.  She was asked to count backwards and was asked to solve simple problems.  To my horror, Mum was not able to answer any question correctly or had any clue whatsoever how to problem solve.  It seemed like we were in that room forever.  I felt guilty, as Mum had constantly looked at me for answers, which I was not allowed to give. 

I will never forget his words, “Scans from St. James’ Hospital and the tests carried out today suggest Vascular Dementia, maybe Alzheimer’s too, but we cannot be sure of that, we may never know”.   I have often since wondered if any of the aforementioned plaques or tangles had been present on the earlier scans that were carried out.

 I would strongly recommend that if you are taking a loved one for any form of dementia testing, please do take somebody else with you, or even write down at the time what is being said to you; because, I guarantee you that when you walk out of that door for the first time, it will not have properly sunk in.

“What”? I rudely said in shock.  “What the hell is Vascular Dementia”?  I honestly cannot remember a word he said after that as my head was whirling around in a complete fog.  I also felt slightly sick.  Mum’s doe-eyed appearance changed dramatically as she flicked her eyes up and down him.  He stood to open the door, still talking, but I could not hear.  Mum stiffened, shoulders hunched as her hands drilled into her coat pockets; her eyes continuously scrutinizing him.

Outside, the cold air hit me hard.  I bent my head backwards into the icy wind, straining to breathe properly.  It was that cold that it temporarily took my breath away, in spite of the sun.  My heart was beating fast and flickering too, like I had just swallowed a dozen butterflies.  I felt a throbbing in my head, my arm felt weak.  “Get a grip”, I said to myself.  “You need to be strong for Mum”.

I felt a total sense of utter helplessness.  “What am I going to do”?  I kept thinking to myself.  “I need my Mum, I need her so much”.  Mum held on to me tight, I tried to fight back the tears, which were now swelling up in my eyes, ready to overflow at any moment.  I opened the car door and Mum obediently got in.  I felt so much rage.  “What had my Mum ever done”?  She was the kindest loveliest person I knew.  The consultant had told me what Vascular Dementia was and how to expect Mum to decline.  I do also recall him saying that Mum had scored that low, thus, it was far too late to start her on any medication as it would be fruitless.  However, it hadn’t really gone in.  I could not have told you then what Vascular Dementia was.  Still I fought back the tears as we drove silently home.  Why didn’t I cry? Why did I not discuss with Mum what had just happened?  Looking back now, we should have talked and hugged and cried and talked again.  But he did say the word “Dementia”. 

Dementia was a taboo word after my Grandma.  Mum had been frightened of getting this illness for a while now.  We could not possibly mention it.  It must be swept clearly under the carpet and must not be ever discussed at any cost.  Did Mum know?  I don’t know.  I gave mum a rallying tap when we arrived back at her home and we quietly entered the house, where Allan stood waiting for us.  Allan mouthed “Is it Alzheimer’s”?  I mouthed back “Vascular Dementia and possibly she could have “Alzheimer’s too”?  It was like a Les Dawson sketch.  Remember the Cissie and Ada Shufflebotham sketches he did?  I would laugh uncontrollably as a child as they mouthed words pertaining to delicate subjects, usually about bodily functions and sex.  Allan and I continued to mouth the word “dementia”, although we did not sit with our legs crossed and arms folded.  I certainly did not adjust my bosoms by hoisting my forearm, nor did I pull my jaw up over my upper lip!

In the early hours of the following morning, I found myself tossing and turning and fighting with the quilt.  It was freezing – I had left the window open and the bed felt like permafrost.  I came downstairs, made a cup of tea and turned the dial so the central heating would kick in.  Cuddling my dog on the sofa, I began to think what a merciless disease dementia was. It struck anyone – across all borders, race, class, gender, age, intelligence.  Mum had achieved an “A” level English in her fifties! 

My dog, Storm kept nudging me in that annoying I want to go out way that he had mastered to a fine art.   “Do you want to go out boy”? I said.   He nudged me again and began to whimper.   We walked the short distance to the field at the back of our house.  Unleashed, he careered off over the humps in the ground and round and round in large circles over the icy floor. 

It was a clear night, the moon shone prismatically. I glanced over to the small hill at the edge of the field where Storm stood majestically, nose firmly in the air, taking in the new scents since earlier in the day.  How magnificent he looked, ears pricked, bushy white tail held firm – he looked the double of an artic wolf somewhere in the wilderness.  I half expected to witness the odd caribou here or there nibbling at what possible grass they could find under the frozen earth.  I am sure somebody was on the field with me that night – it felt like my childhood self, just wanting one more kiss and cuddle in Mum’s bed before I had to go to sleep.  It was a haunting moment that sent chills down my spine, which resulted in an almighty shiver.  I don’t know if Storm sensed anything unusual, but nevertheless he came over for a pat to his head and a tickle behind the ear.  This was the first of many moonlit walks for Storm and me.  It was my time for reflection, contemplation and peace.  I enjoyed the expansiveness of the empty open fields.  We would stroll along, me absentmindedly in a kind of spiritual way.  Some nights I would not be aware of the time – it would be like walking in a parallel universe looking across at me and my life.  We would always start off on the back field, and then we would advance to the “rainbow” bridge to the other side of the M1 motorway, then back to the quiet of the old graveyard.  There were three graveyards, a new one, an old one and then a really old one, which housed the war memorial.  We would saunter past the old iron railings and then squeeze through a tiny gap on to the grass and Storm’s favourite tree for cocking up his leg!  These walks would prove very therapeutic in the future.

Whenever, I felt unhappy as a child, Mum would often say “Winds change and tides turn and things always come out in the wash”.  I would look up at her with a confused but comforted look and I always received a big hug in return.  I missed this.  I struggled so much with my emotions at this time.  I felt like I was grieving for Mum, but she was not dead.  How had Mum deteriorated so fast?  How come this Vascular Dementia had not been picked up before?  Those were the questions I kept posing to myself day in and day out.  I then recalled something that my son had said to me a year or so before and I started to think that maybe Mum had had this for a while.

From being a little girl I used to smile at Mum’s fascination with Concorde.  I cannot recall the exact time, however I know it was just before I left high school, and therefore, it was during 1986, when the big white speed bird first came to Leeds.  Mum and I had arranged a special trip to Yeadon to witness the graceful girl for ourselves.  I must confess Mum’s enthusiasm had definitely rubbed off on me.  I would not have dared to tell my peers at school as to where I was going that day, afraid of been classed as some kind of “aviation nerd”.  We caught the number 21 bus into town and stopped to have a coffee, as we was incredibly early for the big event.  Mum chatted and chatted about how excited her and my Grandma had been, when in 1969 Concorde took her first flight.  “She first flew in service in 1976”, Mum revealed to me in her somewhat knowledgeable tone.  “The only supersonic commercial jet plane in service”, she twittered on.

“You really are a nerd Mum, aren’t you”, I laughed. 

We both laughed and joked as we walked across Leeds city centre to the next bus stop to take us on our journey to the airport.  We were like two giggling little girls getting ready for a Birthday party.  As Mum caught a glimpse of the runway, she shot me an amused, excited look.  I grinned from one ear to the other like a Cheshire cat, as I rang the bell to stop the bus. 

We were totally awestruck when we saw the amount of people standing there.  Men with huge cameras, families and surprisingly quite a lot of elderly folk; all stood patiently on the grass verge adjacent to the runway.  We must have been there a very long time but it didn’t matter because Mum and me were having a wonderful time; chatting to other people and listening to other people’s tales and knowledge of Concorde.  It seems almost impossible now to grasp what all the excitement was about caused just by the mere mention of the name Concorde.

“Shhh, I can hear it, I can hear it”, Mum cried. 

I could hear something too, like a deep whirring rumble in the distance, which kept getting louder and louder.  Every head was bent backwards – eyes glued to the skies.  Wow – here she came!  What a truly breathtaking sight.  As she came down, I recalled thinking how swanlike she looked, how streamline she looked and above all how happy Mum looked!  The plane cruised down to the end of the runway and turned to face the crowd.  Her distinctive nose raised and then dropped.  Mum said she was taking a bow! 

            This was the first of our trips to Yeadon to visit the big white swan – later we would take my son and he would prove to be a bigger fan than us!  However, I must tell you that if you thought landing was exciting, you should have seen the take off.  She would disappear over the hill (Leeds/Bradford airport has a slight hill in the runway), you would be left wondering where she had gone.  Then suddenly whoooosh a huge yellow cloud would appear across the horizon and she would hurtle down the runway.  Just as her nose left the ground, you would hear an immense and almighty roar – she was off!  Mum and I and all the other anoraks would squeal in delight looking up to the skies completely awestruck.

It was the year 2000 when Mum had saved the money to take her and my son, Marcus on the speed bird herself.  I remember her taking him to primary school one morning and asking the head master if he could have a day off school as he was going on Concorde with his Grandma.  Marcus attended the same primary school as Mum and her brother; hence she enjoyed every opportunity she could get of setting foot in to the building.  However, she would moan how it had changed, to my amusement.

  Mum and Marcus caught the coach down to London/Heathrow, where they would stay the night in a hotel and then fly home in style on the bird herself the following day.  That day I was beside myself with excitement.  I could not wait to drive to Yeadon to watch them fly in.  My stomach was doing somersaults and I even felt a little nauseous.  As I arrived at the airport, I saw the usual anoraks and anorakettes littering the hills surrounding the runway.  Ha ha, I thought, that is not me this time.  I am actually going to meet somebody off that plane!

 The airport was bustling.  I parked the car and made my way to the viewing area near the cafeterias.  People were rushing to the windows, leaning on others and literally pushing people out of the way.  I wanted to scream “Excuse me, my Mum and Son are on that plane”!  I decided that I could not be polite as I would not see a thing, therefore, I crouched quite low and squeezed my way to the front, standing on any toes I could to achieve my mission.  I could hear the distinctive roar and again the big white swan did not fail me in her gracefulness and prowess as she gently landed.  Again, taking a bow.  I wanted to greet them from the plane, however due to security reasons, I was not allowed.  However, I approached a stewardess and she very kindly took my camera and promised me that she would take a photograph.  I can still remember her face; she was beautiful, with curly blonde flowing hair and deep red lips and a very attractive warm smile.  I waited at arrivals, I kept waiting.  Where are they? I thought.  Then finally, the very last people to come through – Mum holding Marcus’s hand tight.  He was running to keep up as she tried to run towards me.  Both their faces were beaming with pure joy; I had tears in my eyes.  They were both speaking to me so fast and excitedly that I could not understand a word.  Marcus then told me how a lovely blonde lady had shouted their names out as they were walking down the steps on to the tarmac.  A red carpet had also been placed.  Marcus then went on to say she wanted to take a photograph of us and the pilot came across to pose with them for the shot.  “How marvelous”, I said.

“We felt like royalty”, Mum shouted, holding out my camera, the stewardess had given back.  It turned out to be the most beautiful picture and I will treasure it for the rest of my life. 

Later that year, my son and I went on our first foreign holiday together to Fuerterventura.  He was so excited to get on the plane at Manchester Airport.  I recall a lovely elderly gentleman coming up to us and asking Marcus if it was is first time flying.  Marcus looked up at me and indignantly said, “I have only ever been on Concorde”.  The gentleman laughed and said, “Oooo lucky you, I am afraid you are slumming it today then”.  This amused me for the entire holiday.  I telephoned Mum to tell her what had happened and indeed she laughed uncontrollably down the phone, as I expected.  In a way I am pleased that Mum did not understand that the 24^th October 2003 saw the decommissioning of the British Airways Concorde.  It would have been a very sad day for her indeed – R.I.P. my big white swan.

It was a few weeks after Mum and Marcus’s Concorde trip that he told me how there had been a fire alarm in the hotel during the night.  “It was very scary Mum”, he said.

“It must have been very startling love if you were asleep”, I soothed.  “Grandma never said anything”, I went on.

“She will have forgotten Mum”, he laughed cheekily.  “She forgot how to open the door”, he went on.

“What do you mean son”?  I asked suspiciously.

Marcus told me that they had a credit card as a key and Grandma could not use it.  She kept telling him that she had lost the keys to the hotel room and that he had to remind her they had a card.  When the fire alarm had gone off, Grandma had been panicking, so he had to open the door and keep the card safe in his trousers pocket.  He carried on saying how he had managed to get Grandma to the right gate number and how he had found their room in the hotel.  He laughed when he told me that Grandma did not know how to use lifts.  I was concerned, as I had noticed a few things myself, but nothing serious or worth mentioning.  However, it did make me seriously think how my not quite yet 7 year old son and helped Grandma across Heathrow- the very thought made me shudder.  Sadly, this was the last time I let Marcus go off on his own with his Grandma. 

 I once told Mum that she didn’t need to pick Marcus up from school on one particular day as I had the day off.  To my surprise, she turned quite aggressive.  Her voice was like the crack of a whip.  “I am quite able to pick my own Grandson up from school and make him his tea, thank you very much”, she declared mutinously.  From that day on, she continued to pick him up from school, whether I was at uni or not.  Although, I knew Allan was at home and he would be safe.  Unfortunately, there did become a point where this was impossible.

*

Receiving a diagnosis is very important as some people may experience dementia type symptoms caused by other medical conditions.  Thyroid problems, metabolic disorder, vitamin deficiency, urinary tract infections and even depression can all mimic some of the signs of one of the dementia illnesses.  Moreover, malnutrition, dehydration and even an adverse reaction to medications can all emulate similar symptoms.

When being tested for dementia, you or your loved one should undergo certain brain scans, such as a PET scan and /or SPECT – it is these scans that indicate degeneration of the brain.  Furthermore, a behavioural assessment and various cognitive tests will be more than likely carried out (MMSE).  These tests will also assess language, arithmetic and abstract thinking.

Coming to terms with the diagnosis of dementia can be very upsetting and frustrating for everybody involved.  Mum was very confused, but she knew things were not quite right.  I did not know what to do.  All I could do at that stage was offer support and hold her hand.    An understanding of the illness, planning and asking for help are essential for making life that bit smoother.  If it is your loved one that has received the diagnosis, do you know what their wishes are, as their mental abilities deteriorate?  Have you discussed Power of Attorney?  Have you discussed how they would like to be cared for in the later stages?  Communicate while you can and take help and assistance when it is offered.  These are the things I did not do and I wish I had. Moreover, many people will experience plateaus, especially in the earlier stages; these are the times to grab those special moments with your loves ones, before further decline. 

 You will still enjoy good times, you will have many more laughs and you can always hold their hand and share a cuddle after diagnosis; don’t forget that!   My main purpose for writing this book is to show other carers, relatives and friends that they are not alone and that we all make mistakes and hopefully if you learn from any of my mistakes, then it will of all been worthwhile.  

In addition, do check to see if you are entitled to any benefits.  Does your loved one receive Attendance Allowance?  People over the age of 65 who are affected by a disability are able to claim this.  Are they on the lower or higher rate?  Check to see if you are entitled to a Carer’s Allowance.  Go see a benefits advisor to check out these things, so that you or your loved one does not lose out on any benefits of which you or they are entitled to.  Check with your local Alzheimer’s Society to see what help there is in your area.  There will probably be groups that you can join.  Talking to other people who are in similar situation can be a great help.  Day centres for your loved ones, can also not only give you that much needed break, but provide vital stimulation in an environment that is catered for their needs.  Thus, after diagnosis remember the three most important rules of thumb: (in my humble opinion, of course) planning; talking; seeking help.

Finally, after a diagnosis of Vascular dementia, people should be encouraged to participate in their daily routines and they must continue to engage in social and physical activities for as long as possible. ₂