LIVING ALONGSIDE ALZHEIMER’S

Corrinne has to be one of the most conscientious and hard working persons that I have ever known, and that is not in any way a biased opinion. I have first hand experience of this. When setting up a telephone fundraising company in Brighton in 2002, Corrinne was the one person I wanted to run the administration team. I knew her attention to detail would be unrivaled by anyone else and that if there was anyone I could trust and rely on, it was her. In the time that we worked together I gained an insight into just how hard she worked.

2005 saw lots of changes and procedures becoming automated. Corrinne felt that her role had changed to the point that she wasn’t getting the same levels of satisfaction. A change was needed. Every job that she ever applied for, she was always offered, what a reflection on her working character and the impressions that she made at interviews.

The job that appealed most to Corrinne was being a PA to a Pediatric Consultant. This was a role that was quite diverse in its duties and definitely quite challenging. The consultant that she was assigned to, was extremely demanding and was involved in many aspects within the consultancy. This meant although there was an enormous variety of tasks, the work load was far greater than others were getting. Often meaning late departures, just to make sure all work was completed.

Eventually the practice was moved up to Seaside View at the General Hospital in Brighton. This made it much easier for Corrinne’s journey and parking. During her time in this team, she made four friends that she has remained in contact with ever since. The girls looked out for each other, went for lunches at the garden centre across the road and also enjoyed the occasional evenings out as well.

The girls were about as different from each other as you could get. Yet together there was a closeness to one another both on individual levels and collectively that Corrinne absolutely treasured. I knew every evening there would be conversations about her work and also lots of updates from her friends. This meant so much to her and saw her through many a challenging time.

I guess so far I have painted quite a rosy picture of this job as there were many aspects that Corrinne really enjoyed. One of which was organising the medical students, so that they gained work experience at various clinics in the area. Although at times it was quite stressful, it definitely was one of her more favoured tasks. Unfortunately, there were also duties that were less rewarding, like having to cover reception. Oh how she hated this, and didn’t I get to hear all about it….

However, there was one particular aspect of work that her consultant covered that wasn’t quite so pleasant. This involved child abuse cases. These would upset her quite significantly. Having to type up detailed accounts of incidents and to see graphical images really upset her. I recall that the ultimate distress came from when she was sat in reception, covering the receptionists break and children whose details she had processed would be sat there in front of her. This made it so real and really upset her.

I could always tell when Corrinne had been working on child abuse cases. It would take so much longer for her to relax when she came home. She would often be late home as she would need quite reflection time. Sometimes it wasn’t even possible to change the thoughts that were going through her mind, and she would sit quietly and pensively at the television, and I knew she wasn’t watching it. I felt helpless, there was nothing I could do, she needed to take her time and do things her way.

These thoughts were never too far away from her mind. Even when she went to sleep, they caused the most upsetting and graphical dreams. In the middle of the night she would become quite agitated and distressed, constantly fidgeting. Sometimes, she would be so wake that she would talk about them, but mostly she rolled over drifted back into her sleep, and the dreams would continue.

I have to say considering all that she was going through Corrinne was remarkably loyal and stuck at the job for nine years, until 2014. In the last few years it did become increasingly more difficult for her to cope with. I could see that her health was suffering, she wasn’t eating properly and was extremely tired. I did all I could to try and help her through, but as always she was a martyr to the cause.

During these difficult times Corrinne suffered quite badly with migraines and was always taking tablets for her headaches. We had tablets all over the house. There was also something else that was being hidden, that I purely discovered by chance.

One day whilst hoovering, I moved the tumble dryer out to collect the dust from behind and I discovered a half full bottle of vodka. Now in no way am I implying that there was a heavy level of drinking going on. Something I do know as a fact, as I replaced the bottle and would make regular checks. It was just being used discreetly to take the edge off of the difficult times and when using the tumble dryer. I later also found a second bottle, tucked away discreetly under the kitchen sink, amongst the cleaning products. The levels didn’t change that much and that often, but I felt so sad that these were the extremes that she had to go to to portray a strong image to others, whilst hiding her struggles to those around her and closest to her.

This phase was never spoken about between us. I just watched and made sure that it never intensified. I knew that it had stopped when I replaced the vodka with water and nothing was ever said.

Eventually we got to a point where the struggles became too much. She broke down with me and began to open up. We knew that this required professional help as well as taking some time off from work. We managed to get a Doctors appointment and she was signed off with Depression. a label to her that she hated! She was given medication and advised to rest. After a period of partial recovery, she insisted on returning to work. Being the NHS, these absences have procedures to follow on returning to work. She was sent for counselling, something else that she absolutely hated. She was forced into “opening up” rather than keeping the issues to herself.

To this day, I still believe that the level of detail that Corrinne was subjected to has mentally scarred her and possibly has some connection with how the mind is now. That will never be proven or dis-proven so we will never know for sure.

These events were the beginning of the end of her time working at Seaside View. As well as the encouragement that I was giving her to return back to the care side of her work, something that she really enjoyed, she was also being told from her Mum, Dad and Sister who were also seeing her unhappiness.

Eventually we found a Care Assistant role at Deanswood BUPA home in Rottingdean which quite appealed to her. As always, one interview and the job was hers. There were different aspects to this job, depending on which floor you worked on. Corrinne always enjoyed working on the top floor with the “residentials”. This was less pressurised and gave her more time to sit and talk with the residents.

The shifts were long, 13 hours at time, but it was only three days a week. This really appealed to her as she thought she would get more time to herself. Unfortunately after long shifts it did take some time to recover, so it wasn’t quite perfect. But it was definitely an improvement on what she was doing before. Sadly BUPA is not one of the best for paying its staff and there is a high turnover of staff and a lot of agency staff who work there.

The salary was not an issue for Corrinne and I, it never had been. I always earned good money, she just wanted enough for a few luxuries. However, others were constantly telling her that she could be earning more, elsewhere. This was true, but it was not going to be as convenient and would come at a price. In the end, the pressure became too much and she did end up leaving BUPA. Something I didn’t agree with and certainly wish she hadn’t done.

One of my reasons for taking this journey back in time is to try and see if there were any early signs or symptoms that in hindsight might have been relevant.

Whilst working at BUPA, Corrinne was still driving. The location of her work was an easy route and with ample free parking, so was not a problem. However, there were occasions where she missed her turnings and got lost or she quite simply went the wrong way. At the time we laughed about these and put them down to being tired after long shifts. Headlights on cars also caused her visual problems, as the lights seemed to dazzle her on the windscreen, something her sister also confirmed happened to her, so this might be totally irrelevant.

The thing that I found most worrying and was something that was beginning to develop was her inability to retain any details. Again, we put it down to tiredness etc. We decided that we could help her by keeping a small notebook in her pocket and when she was given details she could write them down, and refer back to them as and when required to do so. This was particularly relevant to combination locks on doors.

When the first notebook became full and we needed a second one, I offered to help transfer details across for her. I was shocked to discover the same codes written on so many pages, this definitely was not right. This has to be one of the earliest signs that I can go back to.

After only a short period of just over a year working at BUPA, Corrinne finally bowed to the pressure and moved back to the NHS at the Sussex County Hospital. A similar role as a Care Assistant working on a Dementia ward, but paid slightly higher. The increase in salary did not reflect the added problems driving, cost of parking and of course being stuck in rush hour traffic.

We managed to get around the transport problem, as I held a taxi licence I would take her and pick her up. I would also be able to use the bus lanes to avoid traffic congestion. Lightheartedly I also claimed it had the added bonus that she wouldn’t get lost on her journey or forget where she had parked the car.

Corrinne started at the hospital in October 2015. A key thing with the NHS is making sure all staff receive the relevant amount of training. Courses were arranged and time was expected to be made both at work and home to complete the NVQ qualifications. The folders that were full of papers were huge. This was not an easy task that lay ahead. Corrinne’s lack of enthusiasm for study and the increasing ability to retain information were causing a massive problem. I would spend many an hour sat with her helping and even at times sat alone doing it for her.

Again retaining details at work was becoming harder and other staff were not quite so understanding when the same questions were being repeatedly asked. Corrinne hated the fact that time was restricted with patient and that she was always being rushed from one to another. She was repeated told off for sitting talking to the patients, who absolutely loved her to bits.

We were due to go to Australia in the January of 2016. This meant that Corrinne only worked on the ward for four months before taking a months unpaid leave. As I have detailed previously on our return from Australia, she was immediately “signed off” and never actually went back to work. She was called in for a couple of meetings with her Manager, and I have to say was treated exceptionally well. Her Manager also agreed that it would probably be best if I accompanied her to the meetings as well.

It wasn’t until the November of 2016 that we finally handed her notice of resignation in. We knew then that there was no way that she would be able to go back to work, and certainly not complete the NVQ. Such a sad way for it all to come to an end.

Corrinne loved to help others and was always a fantastic addition to any team or environment that she worked in…………..

Outside of work Corrinne enjoyed a normal life. She was never one to sit around and do nothing, she always liked to be doing something. She enjoyed spending time with others, but perhaps even more so enjoyed alone time, where she had no pressures or worries.

Those of you that know Corrinne, will know that cleanliness was taken beyond an obsession to a completely new level, The house was always spotless with the smells of fragrances and bleach everywhere. Somehow, even washing up turned from a ten minute job into a military exercise lasting a couple of hours, with no spec of dust safe from being obliterated.

I can assure you that every time a new cleaning product was advertised on the television, by the end of the next weekly shopping excursion there was an identical item in our house. It just didn’t seem fair that after working all day, she would come home and be on her feet, finding things to do until about 9pm every evening. We would all constantly beg her just to sit down! But, there would always be just one more thing to do.

Corrinne’s “down time” came when as soon as she walked through the door, after work. She would get home before her children returned from school. The first thing was always to make a cup of tea, and put the radio on. On days when the weather was fine, there was nothing she liked more than to take our Cocker Spaniel, Rio out for a walk. This was her escape, walking around the farmland and country paths at the back of Peacehaven, more often than not with her ipod for company enjoying the fresh air.

The introduction of Rio to our home was a surprise to many. Corrinne had always told her children that she was allergic to dog hair, and that she couldn’t have one in the house. Of course we all knew it was her obsessive cleaning that was the bigger issue. Rio had a gorgeous long haired golden coat of hair which was for ever moulting. We were often reminded of this with the hoover constantly on, at the merest hint of a dog hair. This formed the basis of a love/hate relationship she had for Rio. To us, she made out he was a nightmare, didn’t like him, hated all the dog hairs etc.. In reality, it couldn’t of been further from the truth, a loving constant companion who would adored each other and shared those magical walks together.

I wouldn’t class Corrinne as obsessed with the gym. In fact she actually hated being in a gym environment. What she really enjoyed was being a member of the gym and having access to all the extra classes that were laid on. At least three times a week she would go and do some form of physical activity. She has always looked after herself, through her diet and physical activity. The classes she really liked were her Step classes and her Spin classes, she would go to these weekly with her sister. Whilst at the gym she became good friends with many of the other regulars.

If for any reason the girls were unable to get in to any of the classes, for whatever reason, a good long dog walk was always a popular alternative. Corrinne did use the gym occasionally, but with the introduction of new hi-tech equipment, she really couldn’t be fussed with all that. I think we can safely say she was a technophobe.

This was also proven with her mobile phones. I always made sure that she had the latest technology, same as I did as we tried to encourage her to use it. Both myself and her children spent many an hour showing her how to use her phone. How she could use the apps that everyone else was using but it really did fall on deaf ears. As long as she could make a call, if she needed to or be contacted by voice or text if there was a problem. I can honestly say you would get a speedier response sending her a letter, than a text. The phone was often in the bottom of her bag, on silent or out of battery, and that was if she remembered to pick it up.

Television was not a major part of Corrinne’s life. She could easily manage without it. She would drift in and out of the soap operas, watch a little bit of sport, she wasn’t one for reality tv, except for I’m a Celebrity, which she absolutely loved. However, whenever she was alone watching the television there was always one type of programme that you could guarantee she would gravitate towards, Documentaries about killers, life in prison and murder cases…. I often thought, should I be worried?

Corrinne didn’t really have any vices that she spent her money on. She would prefer to pamper herself with hair, nail treatments, facials or even a little therapeutic shopping excursion. It was never lavish, always just enough to be a tonic and give a feel good factor.

As we both worked hard, we always made sure that we had two good holidays every year. We loved travelling and exploring. We would never go back to the same place again, we might go to the same country but it would be a different region. We owned a couple of weeks timeshare in the Lake District, which was one of our favourite retreats for relaxation, we would go there every two or three years, alternating it with swapping our apartment for one abroad. We have seen many different places, but one country that was extremely popular with us was Turkey

We had so many places that we wanted to visit, together. Now they will be locked away as part of our dream. I do have one regret about holidays. It was always Corrinne’s dream to go to Graceland, I promised her I would take her there. It would of been our next “Big” trip after Australia. I almost booked it for her 50th birthday, eventually deciding on taking her to New York instead.

Music has always been a massive part of Corrinne’s life. The house would be filled with various genres playing more often than not quite loudly, I guess they had to be to drown the hoover out! I honestly couldn’t begin to tell you how many CD’s that we have. I could guarantee a new one each week, tucked in with the shopping. She loved all type’s of music from heavy metal to soft ballads, although most opera she found boring!

Our love for live music meant that over the years, we had been to many concerts. We had seen some of the biggest acts in the world, as well as some lesser known ones at venues of varying sizes. One act in particular was Corrinne’s favourite, Bryan Adams. I think at last count we had seen him 9 times. It was her “go to music”, Summer of ’69 would definitely reverberate around the house at full volume. Naturally she walked down the isle on our wedding day to possibly his greatest hit “I will always love you”.

The other big passion that we shared was our love of football, after all it was football that brought us together. I’m not going to go into much detail about her “other team”, the dirty scousers, as I have always called them, Liverpool. I just turned a blind eye to that one, after all her mother was to blame for that!

When Brighton were building their new stadium and begun selling season tickets, I naturally got mine. Corrinne didn’t seem that interested, it would clash with other commitments etc. However, in the week leading up to the first home game at The Amex she became quite disappointed that she wasn’t going. It was a sell out, no tickets left and nothing I could do. Except, one of my pupils had just split from her boyfriend, they both had season tickets and didn’t want to sit next to one another. I jumped at the chance of buying her season ticket off of her, for Corrinne. Although we were in the same stand, we were a couple of blocks and a few rows apart. Didn’t matter, I could settle her in her seat and she could see the games.

As soon as the new Upper tier in the East Stand was ready for use, once again I called on one of my contacts and arranged for our tickets to be moved together in a prime location in the new stand. We made loads of friends around us, especially when we took Sonny, her grandson with us.

Our Saturday’s at football were a special time together for us. I used to do a few away games, but I only took Corrinne to three with me, one being to Anfield, to see Brighton play Liverpool!

Here, I have tried to show how full and varied her lifestyle was. I will detail later how each of these changed over time….

Finally the day was here 24th January 2016, we were on our way to Australia. This trip had been a year in the planning. No way were we travelling half way around the world and not exploring the place! We also wanted to spend some quality time with Corrinne’s brother who had recently acquired his Australian citizenship. This in itself provided us with the ultimate dilemma. For so long now we had covered up any issues that we were living with, but our plans included a ten day stay with my brother in law, and there was no way that we would be able to hide his Sister’s condition, 24 hours a day. Especially as he would want some quality time with his “Big Sister”.

How were we going to disguise the memory problems, the drowsiness and all the other issues? I couldn’t be around all of the time. They were bound to see it if they spoke to her on her own. These were all the worries that we faced, before we even got there. The only solution was that I needed to speak with him and be honest. But first we had 21 hours of flying and a transfer at Singapore airport to negotiate. Everything else could wait.

Packing always seemed to be my job.  Corrinne would make piles of clothes on the bed and leave me to figure out how on earth they were all going to get into her suitcase. We were always a good team, each checking over what the other was taking and making sure we had everything we needed. At the time this just seemed like a normal packing session, but looking back now there was definitely a lot less input from Corrinne. 

The journey was everything we thought it would be, long, tedious and extremely tiring. You can only watch so many in-flight movies. Whenever we were flying, I always tried to make sure that we got the seats by the emergency exits, not because of escaping but for the extra leg room. I had even remembered to pack those sexy flight socks. As we were flying with Singapore Airlines, I thought it only natural to enjoy the odd Singapore Sling, merely to pass the time, of course. These were amazing and helped us both to relax and sleep.

The break in the journey came at Singapore. We had to disembark, make our way across the terminal and meet our connecting flight, all within three hours. Trying to gather belongings, feeling as tired as we did was a challenge in itself. Unfortunately I managed to leave some valuables on the plane ( Kindle, Tablet, & my Brand new Beats headphones). I only discovered that these were lost when we finished the journey, and when reporting them, my lack of faith in humankind was proved correct, as they hadn’t been handed in.

The transition at the airport was a challenge. Corrinne’s dislike of trains, especially crowded ones, had to be dealt with, along with carrying all hand luggage. We managed it, somehow and arrived at the departure gate, just in time. I’m not one for arriving anywhere too early and having to wait around.  The last leg of the flight seemed to pass relatively smoothly, as we knew that next stop was Perth.

Arriving in Perth seemed quite smooth, I guess we had already had a practice run. We gathered our belongings and made our way from the plane to the Arrivals lounge. I knew that this was a moment that Corrinne had longed for, for so long. To visit her younger brother, and see what all those amazing things that he was constantly telling her about, and to take him some good ol’ British tea bags. As we walked through the gate, there he was and it was the magical moment that had been hoped for.

Dale didn’t live too far from the airport, so it wasn’t too long before we arrived at his home. They sat in the front chatting most of the way, thankfully I wasn’t needed to much to cover during conversations. Besides, it could all be put down to tiredness.

We had no idea on day or time, as it all just seemed like a long blur. But we had landed in Australia on Australia Day, so this was not going to be a quiet relaxing day. Corrinne has always needed so much more sleep than me, so after a quick drink and chat, she went off to bed to try and get some sleep. I always keep going through the jet lag to try and keep my body in a routine so I stayed up for a while, drinking and chatting with Dale.

After all the obvious catch up talk and all the updates on Brighton & Hove Albion, and of course the drinks were helping the relaxation. I knew that this was the best time to steer the conversation to Corrinne. I had given this so much thought, what I would say and how much detail to go into. It had to be easier with Corrinne asleep, and oblivious to what was being said. She had no idea that I was going to discuss this. She certainly would have insisted that I said nothing, but that really wasn’t an option, anymore.

There isn’t much I remember about the conversation that followed. I have no idea how long we sat there for that evening. It just didn’t matter. Naturally, it must of felt terrible for someone to hear, that the big sister who is absolutely adored, was struggling in this way. The body blow, was balanced out by the relief that I finally had been able to talk with someone. A very emotional evening, not how you would expect to start a holiday, but absolutely the right thing to do.

Australia Day is definitely the day to be in Australia. The country comes to a standstill and the celebrations are something else. We spent a lazy morning around the pool, before the guests arrived for the traditional barbie. The food and drinks are well thought out and in abundance. The radio stations are all geared up to the countdown to the number one song. Once this had been revealed and heard, thoughts then turned to the evening celebrations. 

We spent the evening at the waterfront in Perth.  There were stalls and activities everywhere, to satisfy the ever-increasing crowds. The firework display that we witnessed was absolutely amazing. It seemed to last for ever. A truly great evening.

Our plan was to spend ten days in Perth, so that Corrinne had plenty of time to spend with her brother. We would then fly over to the Gold Coast, hire an RV and go on a road trip from Cairns to Sydney. We would then fly back over to Perth for the last few days, before returning home.

Those first days in Perth seemed to fly by so quickly. We managed to see so many of the local sights. Went out on day trips. The number of breakfasts and meals out that we had was insane, definitely back to the gym on our return! It was great to have some lazy times as well, Corrinne definitely needed those, as the medication being taken contained a large proportion of sedative.

It gave me time to confirm the route that I was planning for our road trip and to work out the best stopping points en route. Our plan was to drive 2,000 miles in ten days, so we needed to be organised.

What an amazing place Perth truly is. I always knew that Australia was where I wanted to be, nowhere specific but the culture and setup was always so appealing. The hardest thing for me would be leaving to come back home. Corrinne on the other hand would struggle with adapting to a new lifestyle, so far away from home, friends and family. I don’t think a day passed by without a subtle hint from me, on how we could start somewhere new….

Seeing the love for the country that her brother has, and the enthusiasm that he had as he so proudly showed us so many of the sights. Every trip in the car took an amazing detour, just to show us something else. I know that this would of been done so many times before, for everyone visiting him. But the passion still remained.

All too soon the time came for us to leave and begin the next part of this exciting journey. But, at least we would be back……..

As great as our time was in Perth, this was our opportunity to explore. I had spent so many hours convincing Corrinne that this was going to be an exciting adventure. Let’s put it straight out there…. Corrinne does not do camping! tents, caravans or anything associated with sleeping in anything less than 4 stars, just simply does not get considered. “Glamping” was definitely introduced for her…

This whole adventure was in jeopardy long before we even left the UK. Her youngest daughter had been travelling for six months around Asia and Australasia and was now with three other friends, in a camper van, travelling around Australia. Their road trip had been nothing but constant problems with the van. They were constantly on the phone back to the UK for help trying to resolve issues. To all of us waiting at home, it felt like they were in a mobile death trap (slight exaggeration, possibly!). As you can imagine this was not working in my favour, trying to convince Corrinne that this was going to be amazing. However, the promise of the luxurious of Motor Homes eventually persuaded her that all was going to be ok!

After waving a temporary good-bye to Perth we boarded a flight to Cairns. A short flight across to the other side of the country, only four and a half hours. We had travelled less for most of our holidays! Kinda puts into perspective the size of the country. Quite a standard non-eventful flight. We had only brought half our clothes with us on this trip as we were not sure on how much space we would have to store, but even so Corrinne’s case was at least twice the size of mine!

After a short taxi ride from the airport to the Motor home hire centre, we then had the tedious task of sorting all the documentation. Another fact, Corrinne is not the most patient of people in situations like this, she just wants it sorted and on her way. Two drinks, a long walk and a bit of sight seeing later, after having to “kill time” whilst the van was being prepared we eventually completed all the necessary insurance details and finalised all arrangements.

The centre had a wide range of vehicles on its premises and of course we played the game of selecting which one we hoped would be ours. As long as it was not one of those dreaded green cheapies that travelers used and were always broken down on the side of the highways.

We certainly were not disappointed! OMG! ….. this was luxury on wheels. We had hit jackpot, and oh so big and roomy. I then remembered that I had to drive this, but wow it was so much better than we had imagined. All doubts were instantly removed and nothing but excitement remained. And so our road trip began……

Our plan was to drive from Cairns to Brisbane (1,750 kms) in ten days, we would select places to stay en route. The idea was to enjoy the day at a location, then travel evening time to the next caravan park. We had been recommended that before we began our journey south it was well worth the trip to head north to Port Douglas first. This is exactly what we did. A nice relaxing first evening, enjoy a walk in the town, have a nice meal and begin to explore.

Port Douglas was quaint so many lovely little places to visit. However, what struck us both the most on that first night was the sound of the bats flying overhead, what a racket. Whilst we were out exploring we booked an excursion to the Great Barrier Reef for the next day. Again, swimming in the sea with fish etc…. definitely NOT one on Corrinne’s bucket list!

Of course it was a lovely hot day, as we sailed out to the reef. The only downside was that we had now entered “Jelly Fish Season” so In preparation for our dive we had to put on full stinger suits to protect us. It was amazing as we swam out and dived around, and what we saw was so inspiring. We also decided to take a mini excursion on a glass shelled mini-sub to go deeper and see even more amazing sights. The day was finished with a huge seafood banquet, before heading back to port.

After such an amazing day, our road trip had to begin, so we packed up and headed to our next destination. Mission Beach. We comfortably arrived at the sight, in plenty of time to set up and wander out for an evening stroll before retiring for the evening.

This was where I began to notice that Corrinne was becoming more confused than normal. She seemed totally disorientated and well and truly out of her comfort zone. She was needing more and more assistance with more basic functions. She wasn’t retaining any details and repeatedly asking the same questions. Naturally, the medication, the travelling, a strange environment and general tiredness were what I thought were causing this. It was no bother to me, to help her so that she could enjoy the experience.

Mission Beach was number one on my bucket list. A skydive over the Great Barrier Reef. If you are going to throw yourself out of an aeroplane it has to be with a spectacular view. This certainly ticked all the boxes. This had been something I promised my Nan that I would do with her (when she was in her 90’s!), sadly she never got to do it, this was my opportunity to do it in her memory. Corrinne was going to wait on the beach and watch.

I have total admiration and have been in awe of Corrinne for all the things that she has done. Never one to stand on the side. As this trip was showing, things might not be her preference, but that would not stop her from doing them. After a lengthy wait due to weather conditions I finally got called to go. I couldn’t believe it when at the last minute she decided to come with me as there was a space available. Wow what an experience, we both had. A story that always brings a smile to her face when I remind her that she jumped out of a plane!

The next phase of our journey was quite lengthy with some stops on the way. Eventually we arrived at Airlie Beach. We needed to relax, so stayed an extra day here to allow ourselves time to unwind. Here, we took an excursion to the Whitsunday Islands. Such a beautiful pretty place, with beaches of the most magnificent sand. A lovely day exploring, swimming and enjoying the sights. The sand is so pure that if you rub your jewellery in it, the items are revitalised and cleaned. This sand is protected from tourists taking it. You are checked before boarding a boat and hosed down to remove any sand on you.

The next part of our journey, we were now heading towards Brisbane. This was a little more routine and we were just going to stop as and when, or if we saw something that we wanted to visit. One such place was Bundaberg. It was a quiet Sunday with very little activity anywhere. We saw the rum distillery and they were doing tours, this was a good idea to break up the journey, and hey we might even get some cheeky tasters too.

Having previously been to Dublin and seen the Guinness factory, this was equally as fascinating. Of course the highlight was the tasting at the end. The tour guide took great pleasure in ridiculing all poms saying how we kill the taste of rum and whiskey by adding coke to it. His advice was lemonade or for spiced spirits, ginger beer. I have to say having tasted the drinks, it has changed how I drink them from now on. A few bottles of Spirits to take back home, were soon added to our luggage.

During this last phase of our journey we had been in contact with Corrinne’s daughter and her friends. On our current schedule, we were due to catch up with them around Brisbane. So we arranged to meet them at the Steve Irwin zoo just outside of the city and spend the day with them there. There faces were a picture when we parked our luxurious motor home next to their little camper. We were shocked to, how four people could be crammed into such a small space was way beyond us.

An amazing day at the zoo, doing all the tourist things. Feeding the kangaroos, holding the koalas along with watching the crocodiles. We decided that the girls needed a little treat so we booked them with us at a site for the night and took them into town for a meal and drinks. Then back to our van where all six of us could comfortably sit and relax. The next day we all decided to go into Brisbane, do a river cruise, visit a museum and enjoy the city together. In the evening the girls insisted on cooking us a “travellers dinner” as a thank you before we both set off on our different routes.

For us it was the end of the road trip. It hadn’t been without its challenges. Corrinne was totally disorientated within the van, was unable to remember where anything was and needed constant guidance and help, but we managed, made the best of it all and enjoyed a memorable experience. We were giving our motor home back. Our next part of our sightseeing trip was a flight to Sydney and three nights in a City hotel.

Sydney was everything you imagine it would be. We had a great few days there, visiting the sites, The Sydney Opera House was magnificent. Bondi Beach is definitely for the tourists, there are much nicer beaches along the coast and a lot quieter too. Sitting in the harbour restaurants in the evenings enjoying the hustle and bustle of the city life. On a Saturday there is always a spectacular firework display to enjoy as well..

Another activity that we managed to do, was to walk over the top of Sydney Harbour bridge. We were the last tour of the day, and were right at the highest point in the centre of the bridge at midnight. Wow, what an amazing view of the city.

Tired and with some fantastic memories, undoubtedly the journey of a lifetime. Quite literally nearly 2,000 miles down the A1 (The Bruce Highway) and for the majority of the time no other vehicles. The only real danger was making sure you didn’t hit any Roos…… We headed back to Perth for the last ten days. Family time for Corrinne, something that she has always held so dear to her heart.

And so after an amazing trip, exploring the Gold Coast we were heading back to Perth. I have to admit that it was really nice to enjoy that little extra bit of luxury staying in the hotel, whilst in Sydney. It gave us time to enjoy the city to its fullest as well as freshen up and relax before returning back to Corrinne’s brother.

The flights and transfer were routine and non eventful. Although, I do look back now and realise just how little Corrinne did, she just went along with everything. I guess my old fashioned, chivalrous nature, where I would organise everything, pack everything, carry all the bags and lead the way, masked a lot of the developing condition. At the time I was just “stepping up” to relieve the stress and anxieties of it all, now I question if this was just another of the early phases that this remarkably strong, determined lady was trying to keep from us all, me included.

After being collected from the airport, the next few days were really quite lazy. This was the middle of the summer, the temperature was in the 40’s so laying by the pool during the daytime was always number one choice. This was Corrinne’s type of holiday! Evening time we would find a different style of cuisine and enjoy different areas of the city, to continue our exploring.

We did reassure Corrinne’s brother that we were ok in the day times, and that he should continue to work. Mind you, i use the term work, very loosely! He was always home around lunchtime! The more I saw of the Australian way, the more I knew it was for me. I honestly could of “sold up” and gone, but Corrinne would of struggled to do it. So I guess it was just never meant to be.

We did manage a few more local excursions around the Perth area in our last few days. One of the most memorable was our trip to Rottness Island, which means Rat’s nest! which is an extremely harsh description, as it really doesn’t do justice to the beautiful island.

We took a ferry across and decided that the best way to see the island would be to hire bicycles and explore. This in itself presented us with a challenge. Although Corrinne’s favourite gym class was spinning (controlled routines to music on specially designed exercise bikes), riding on two wheels was not something she was used to. She always told everyone that she and her sister had never owned a bicycle, even as a child. Within a short distance after setting off, on the first occasion that we had to stop, Corrinne ended up on the floor. Thankfully this was the only time this happened and with her determined spirit she got up and set off.

The island was amazing. We found some beautiful sandy coves that we could stop at and enjoy a swim to cool down. The day was amazing and seemed to pass so quickly. We even managed to see the real inhabitants of the island, the Quokkas. These little creatures appear so cute, yet the residents see them as pests. They can only be described as a cross between a miniature kangaroo and a rat. They are about the size of domestic cat. A member of the marsupial family that is mainly on the ground, but are able to climb trees as well.

Whilst sitting have a snack and drink in a cafe they were all around us. They certainly have adapted to the tourists, even to the point of looking in bags and trying to take food. All the shops have little barriers to stop them entering, which was quite amusing.

There was so much more that I could write about our trip to Australia, but that I guess will just stay with us as our memories of our amazing time.

It was really hard to say goodbye, especially for Corrinne. She missed her brother, and although pleased that he had found the lifestyle that he craved, really wished it was closer to her. This trip showed us that we could do anything we wanted, together. More importantly, that we shouldn’t put things off, we should do them whilst we could. Even whilst writing this the tears are uncontrollably, rolling down my cheeks knowing that this opportunity was never going to happen again for Corrinne. This breaks my heart.

The flights were long and really tiring. I guess its just the thought of getting back to normal. No real dramas on our way home. For me I knew that there were questions to be answered, appointments to be made and the rest of the family to face. I really don’t know what Corrinne was thinking, or even how much she was trying to block out. Although it was something we both knew was there it wasn’t something we wanted to talk about. That could wait for another day.

My reason for sharing such a detailed memory of our trip to Australia is to show how even though the condition was there and developing, we were able to enjoy such a full and exciting time together. Yes, we did have to adapt how we did things, and we did that so naturally and without thought.

We thought at the time that we were dealing with Anxiety and Depression and that the medication was causing the side effects of drowsiness. When she improved, the medication would be reduced and we would return to normal. But, certainly as we spent the time so closely together there were signs that were becoming extremely worrying.

This was the start of my learning. Never just accept the first thing you are told. Pay particular attention to small details and no matter how insignificant you think something might be, it needs to be told for a proper diagnosis to be made.

More importantly. Treasure every moment and build memories together. Don’t put off the things that you want to do because you might not get another chance. When others look at you and think the things that you are doing are strange…just smile! There is no limit to what you can do, we are the only ones who put the restrictions on ourselves.

Later in the year, at the end of the summer I did manage to take Corrinne away to Lanzarote for some late summer sunshine and to try and cheer her up. I was so grateful that my sister, Carol came with us to help us, as this would be extremely challenging. It was a lovely, relaxing break with a change of scenery.

Sadly, I still look back to our trip to Australia as it was our last holiday together. We were not to know that at the time. I am so glad that the memories that we made together on that trip, will stay with me forever.

 

20th February 2016

Everything now seemed so different…..

We didn’t know what we were coming home to. The news of Corrinne’s condition had traveled  on ahead of us and no doubt would be common knowledge within the family. It was all out in the open. Everyone now would have an opinion and there would be so many questions. It wasn’t  going to be just the two of us anymore, there would always be someone fussing around. These were all of the things that Corrinne wanted to avoid. Such a proud, independant lady, with a determination to carry on no matter what.

The journey home from Australia, had taken so much out of Corrinne. The tiredness, the confusion. It had been hard work for both of us navigating our way through airports, at the stop off in Singapore. Twenty one hours travelling was far too much, but taking Corrinne to see her Brother was worth it. All we wanted to do now was to go home and rest, take our time and settle back into our daily routines. We knew that the family would want to see her, to offer their love and support. No matter how much we wanted to avoid this, we knew it had to be done. As always Corrinne really didn’t want the “fuss”, she just wanted some time to herself and most importantly some sleep, in her own bed.

Over the following days there was so much to do. Firstly, we definitely had to have Corrinne “Signed Off” from work. There was no way she could cope with all the stresses associated with her job. That obviously necessitated a trip to the GP. Having secured an appointment, we were greeted as always by a warm friendly smile and a sincere warmth and affection.

Whilst we had been away, the family back home had been receiving updates on Corrinne’s condition, from her Brother. The uncertainty had obviously created worry. They had contacted her GP, to help with their understanding, but obviously with Data Protection the surgery was unable to divulge any medical details.

Our first appointment was four days after our return, with our GP, who sat us down and as always managed to get Corrinne talking. When we left, we had the “Sick Note” and  more prescriptions. Lots of referrals were also being made, which meant we would constantly be having appointments and more tests. The GP also advised that Corrinne  shouldn’t keep this to herself any longer, she had a large family around her and that now she really she share this with her loved ones.

Working this through as just the two of us had been such a big thing for Corrinne. Her pride, her inner resolve and the fact that she really doesn’t like people “fussing” over her meant she didn’t want anyone else involved. I had been sworn to keeping this just between us. Let’s face it, we didn’t even know what was wrong! We had coped, just! We must of been pretty convincing, as no-one, not even my own parents suspected a thing. But yes the GP was right, the love and strength of the family was needed now.

I often question myself as to whether I failed Corrinne by not involving others sooner. I have always been so good at keeping quiet, but was this the time I should of spoken out? When a loved one asks you to say nothing, it puts you in a difficult position. My loyalty will never be questioned, I will always respect a persons wishes.

The question that constantly troubles me, is in hindsight, would I do anything different? I have to admit, I probably wouldn’t. I would still have put Corrinne’s wishes first, but I would definitely have tried to be more persuasive in getting her to share more, with all of those who really loved her.

 

And so the consultations began ………..

 

Our meeting with our GP on our return from Australia was the first appointment of many over the coming months. Hopefully now we would begin to get to the source of the problem and be able to begin the correct treatment. The medication that Corrinne had been taking while we were in Australia was dealing with her Anxiety and Depression. These tablets obviously had a calming effect but the side effect was the drowsiness.

We didn’t have to wait too long for our first referral. Within a month we had a  consultation with a Psychiatrist. Such an intense, long meeting with an in depth investigation into our lifestyle. I could see how tiring and distressing it was for Corrinne, but with a few short breaks, we were able to manage the session. This was the first time that we were facing up to reality, we were here and beginning to see the true extent of the problem. The questions just kept coming, probing into everything from childhood to the present day. Building a complete history of Corrinne.

This was the first time that I was being asked not to jump in and help her with the answers. We had become such a good double act, when she was unsure of anything, she would know that I was watching her, she would look at me and then I would answer for her. Today, the Psychiatrist wanted to let Corrinne struggle, to assess the situation. It was so hard to sit back and say nothing. But in a way, it opened my eyes to see just how bad that this really had become.

At the end of the meeting, there was a slight change to the medication made by the Psychiatrist. He also wanted to see her again within the month for further tests. We came out of the building and the relief that it was over was clearly evident, for both of us. We both had tear stained eyes, we didn’t need to say anything to each other, we knew that this had been an intense ordeal. This was just so upsetting, but something that we had to get used to now. Everytime we were to see someone new, this whole interview would be repeated.

As a result of the consultations, we were then invited to go to a workshop for those suffering with Anxiety & Depression. I have to admit, I think I got more out of the session than Corrinne did. It was like information overload for her. Too much information for her mind to process. Too many people for her to focus on. When more than one person was involved in a conversation it became too complicated to follow. I came out of the session with some good ideas, some new techniques that we could try when Corrinne was having one of her moments. I also felt as though we would be able to work this through together. A positive feeling, at last.

Another suggestion that came forward was that Yoga would be good therapy. As Corrinne had her gym membership and loved going to her classes, this was an easy addition to make to our lifestyle. We found a class on a Friday morning, all it meant for me was keeping my diary clear for a couple of hours. It was challenging to keep Corrinne interested in the class. She was conscious that the instructor spent time dedicated with her, helping her achieve the positions. It was clear that she was struggling with her coordination, as soon as two or more instructions were given, it became so confusing.

The Yoga Instructor was so understanding, and allowed us to position ourselves to the side of the room. We could work together, and create our own variations of the poses. We did our best, and as much as we could. We managed to keep attending week after week for about five months. It then became too much for Corrinne. She felt that she wasn’t able to do what others were doing. We couldn’t keep coming away from the classes in tears, this was supposed to help us. So we decided that we would give it a miss for a while. We never went back.

The other course of action that came from our consultations with the psychiatrist was that maybe Corrinne would benefit from sessions with an Occupational Therapist. This was with a view to integrating her back into society and the workplace. This was a welcome suggestion as we were conscious that Corrinne had now been “signed off” from work for over six months. Although work had been understanding, they were now beginning to ask questions, they requested that she attend a meeting with her bosses.

Thankfully Corrinne’s boss at work fully understood what she was going through. I was allowed to accompany Corrinne to her meeting. This was a massive hurdle that we had to overcome. There was no way that Corrinne was “fit to work”, but how much longer would her job be kept open for her? The meeting was kept quite informal. It was so reassuring to see that Corrinne’s boss wanted to help her and was prepared to give her all the time that she needed. We were given the option of returning to work on a reduced hour basis, but this was never an option.

After we had gone through all the formalities and we had given all the details that were required for HR. I was asked if I minded leaving the room so that they could have a few minutes alone. Corrinne was happy with this, so I waited outside. Corrinne was never able to recall what was said in this time, but I know there were a lot of tears on both faces, when I was called back in to the room. I sensed a deep and genuine love for Corrinne. We were thanked for coming in and wished all the best and hopefully things would return to normal soon. This was the last time Corrinne went into work in any capacity.

We were assigned a lovely young lady, as Corrinne’s Occupational Therapist. Instantly I knew that Corrinne felt comfortable with her. Thankfully Corrinne was not subjected to the intense questioning, and I was able to help the therapist with the history of the illness. We discussed quite a number of possible options that we could try over the coming sessions, all of which Corrinne was happy to go along with.

Throughout all of this Corrinne had her goals that she wanted to achieve. She wanted to be “normal” again. She wanted to drive. She wanted to go back into work. She wanted her freedom, and didn’t want to depend on others. We all kept telling her……“You Will”

 

A year of consultations and tests ………….

Life was now beginning to take on a new dimension. It seemed that we were now facing regular consultations. No one could give us a definite diagnosis. Everyone wanted to refer us to someone else for a further opinion. Was there something that we weren’t being told, or was this condition just baffling the experts. Either way, the uncertainty become ever more frustrating.

With my computing background and inquisitive mind, combined with a thirst for knowledge, I also found myself exploring various illnesses and conditions via the Internet. Such a wonderful tool, but I can see how people can become hypochondriacs, self prognosis must be a GP’s worst nightmare. Here was I doing exactly that. The number of things I found and suggested was ever increasing.

I also found myself talking with various people, who would share similar experiences. Some worked within the medical profession or within the Care Sector. I had an open mind and would investigate anything and everything> i just wanted to know what was going on. Once we knew this, the correct treatment would surely return our lives back to normal.

Another course of investigation was now also being investigated. We were being referred to hospitals for all kinds of scans, including MRI.  We didn’t have one hospital that we attended, our appointments were spread all over Sussex. It didn’t matter about the mileage, as long as we got answers. But as always results were coming back as “Nothing abnormal”.

Whilst all this was happening our contact with the Occupational Therapist was continuing. We would attend consultations, expressing the goals that we wanted to achieve, and the steps that we were taking to get there. The therapist also suggested that it might be more beneficial for Corrinne if she came to our house and tried to work alongside Corrinne in her daily routines, with a view to a return normal activities.

Various things, such as making cakes and taking a trip to the shops were tried. Yes they could be done together, but was there any belief that Corrinne would be able to undertake such things by herself, not really! After sessions spreading over five months, this time was gradually being phased out. The Psychiatrist obviously didn’t feel that this was proving to be beneficial for Corrinne.

During this period of time, we were continuing with regular consultations with the Psychiatrist. Corrinne would try and rehearse the questions that would be asked, she is a lady with so much pride. We would spend all the morning before a consultation going over things, such as days, time, money, where we had been for holidays and the childrens names.

At each appointment we would always seem to go over the same tests. Even during the course of these twelve months the deterioration was noticeable to me. Each time we would hope for an improvement, but the struggles continued. It was getting to the point that mid way through the tests the Psychiatrist would say “OK let’s leave it there, for today”.

We were having consultations every other week with Psychiatrists. We would see one, then be referred to another. We would then go back to the original before being sent to another. 2016 seemed to drag whilst we were going through it all, but in reality it flew past so quickly with so very little progress.

By the end of the year the medications had been increased significantly. There were constant changes, always trying to get the correct balance. Some had side effects and had to be changed, others just didn’t seem to make any difference.

With the constant browsing across the internet another option that could possibly of offered a solution was “The change”. One of the conditions of this, was an effect on the memory. Could this possibly be a solution? After consultations with the GP, who was reluctant to consider this option. Understandably this could prove to be a further complication and it would be better to try and stabilise the condition without anything else. Eventually though Corrinne was put on HRT tablets as well.

The final appointment that came through in the post, at the end of the year, was an appointment at the end of January with a top Neurologist from Cambridge, who would be in the area and has arranged an appointment for us to have a consultation with him in Polegate at the end of January.

Something offering us hope over the Christmas and New Year period …………

 

Midday, Wednesday 25th January 2017

Here we go again, another consultation, more tests. This time we had been referred to a leading Consultant Neurologist, a pioneer in his field. This time a little surgery in Polegate. A fortunate appointment with a Consultant from Cambridge, who was here in our area. Each appointment just created more traumas, without providing any answers. What harm could it do?

After so many appointments, with so many different types of consultants. We had seen GP’s, Health in Mind, Occupational Therapists, Anxiety Specialists and Psychiatrists. None of these were able to offer us any diagnosis or timescale to recovery. Various possibilities had been suggested, Anxiety & Depression were always at the top of the list. The menopause couldn’t be ruled out entirely either.

Such a friendly figure of a man greeted us, immediately i knew that my wife, Corrinne was relaxed in his company, a good sign. Then the questions began. It is so hard when you know the person you love so much is struggling to answer, all you want to do is jump in and help them out, after all I was an expert at this, we had managed to do this for nearly three years without anyone suspecting anything. Every time she was put through this, the lump in the back of my throat grew bigger and it became so much harder to hold back the tears.

As always we began by the Consultant building a history. The majority of the questions were directed towards me, for accuracy in detail. Occasionally, he would invite Corrinne to contribute with whatever memories she had.

Once again we were asked if Corrinne minded doing a little test, no problem, we replied after all this was common practice in most appointments. From personal questions, to questions about current affairs, mathematical questions to drawing diagrams. This test seemed so much more intense and oh so much longer. I knew the upset and despair she was feeling at not being able to answer the vast majority of questions.

She struggled so much with the test. I just wanted it over. She didn’t need to keep going through this, it was cruel.

The Consultant then performed a series of physical tests, which also proved to be too much of a challenge. Even after a few minutes he felt that he had seen enough. Despite Corrinne’s upset, somehow he managed to keep her feeling reassured, she trusted him.

Finally, he sat back, took a big sigh and began talking to us. After the first three words Corrinne could no longer follow the conversation. He kept using words that we had always tried so diligently to avoid saying, for fear of upset. Words that we only referred to as the “D word” for instance, and here it was, being said in every sentence. I was already beginning to dread the journey home, guessing I would be asked so many questions.

We were told that although previously we had been treated for Depression & Anxiety, these were still prevalent but only as a consequence of the main illness. This was definitely a form of Dementia. Extremely rare for someone so young but nonetheless he was certain. He did want us to go for a further consultation with a colleague who he held in high esteem, based at Haywards Heath, but he was convinced.

The journey home was silent. The music played from the CD and we looked at each other with tears flowing down our cheeks. I wondered what did she remember and how will it affect her? Then came the question “When will they find out what is wrong with me?”. This told me everything, nothing had registered.

And there we had it a diagnosis ………

Posterior Cortical Atrophy Alzheimer’s Disease