Back in England…….(part 1)

 

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.

Back in England…….(part 2)

 

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”

Back in England…….(part 3)

 

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 …………

The day our lives changed For Ever……

 

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