Hearing and the changes I have noticed with Alzheimer’s

Today I had an appointment at Boots Opticians and hearing shop.  I wanted to have my hearing checked because I had an idea that my hearing was a little worse than about 6 years ago when my hearing was checked.

Turns out that it is mainly age related, my left ear having less sound range than the right, so no great problems, not enough for intervention with an aid of any sort.

Interestingly she talked about the way that Alzheimer’s affects the way that hearing is processed.  Imagine a room full of people talking, along with other sounds, and trying to focus on only one person in the middle of the room talking to you…very difficult.  That can be what it is like for someone with Alzheimer’s trying to hear normally.     I do experience this even in a quiet room, I am spoken to but I might be on the internet, or reading and somehow do not hear what has been said.  So I have to say  ‘sorry what did you say?’ over and over.  Irritating or what!

So my focus of attention needs to be on only one thing to process what is being said.  This is important for me and others around me to understand because when I am thinking; I have not heard, it may be that I have not processed what has been said.

She said I need to use change of behaviour to help any hearing problems, such as sitting with my back towards a wall in a restaurant so that I have no noise behind me.  Facing people straight on when we talk so that my focus is on their voice – easier said than done when I have difficulties in maintaining eye contact!

All in all I am pleased that my hearing has not got worse, and interested to learn how my Alzheimer’s has an impact on how I process sound.

“I feel like something at the bottom of a woman’s handbag”

Saturday – 28th June 2014 – Alzheimer’s Meeting

I was invited to a meeting to form a pilot scheme for younger people with Alzheimer’s and Dementia. It was quite a way to drive and we got to a place which was in fact in a building in a Chemical Company which supports the charity Alzheimer’s Organisation; their conservatory which is on the side of a very nice cafe/restaurant.

There were workers from the Alzheimer’s Organisation from three different surrounding areas in county and I got to talk to two of them. The are all enthusiastic and clearly caring people.  People arrived gradually until there was a good roomful of people living with dementia and their partners and carers. I initially talked to two of the staff full of enthusiasm and I passed a couple of flyers for Dementia Mentors website which they said they would look at. As others arrived they seemed to know each other I think from another group they attend. The conservatory had tables and chairs set out in a cafe setting and people came in and sat randomly around the room or in groups of friends. Because of how we were all sitting facing some with our backs towards others it was not conducive to chatting and getting to know anyone you didn’t know, which for us was everybody. No sooner everyone had arrived, we were told to split up into three groups and talk about what sort of group we wanted. The friends stayed where they were, others gravitated towards the far side of the room and hubby and I were asked if we would join the table behind us with just two people on because the guy had mobility problems. The guy I shall call Sid clearly had mid stage dementia and did not speak or appear to have awareness of what was going on. His partner on the other hand did not stop talking. We had a worker with us who was going to facilitate this discussion between the four of us.   (All names have been changed to protect peoples identity).

Phil the worker was enthusiastic and started throwing some ideas about for us to talk about and ‘Sally’, Sid’s partner started to talk about what she wanted from the group. I don’t want to see leaflets on tables, she said, I don’t want to hear anything about dementia, I want a social group where we can go out and enjoy ourselves. Right, that is perfectly clear. I am tired, she explained, of everyone talking about dementia, I want somewhere where that is not about illness at all.  (Actually Sally, I think you need a support group for carers and some respite care for Sid, I thought at the time).

I had up until this point given some ideas, discussing a newsletter, learning new things in their new life with dementia, such as photography, cooking, creative writing mini courses, days out doing group photography, walking etc. The more Sally talked the more puzzled I began feeling. Hang on, I thought we were here to talk about a group for people with dementia, at least that is what the conversation I had with the ALZ worker I had met after being diagnosed who said there was no support groups suitable for me. I could not assume that Sally was Sid’s carer and I had to know, so I asked her if she had dementia? No, she answered, I am with Sid. I had this sudden realisation that no-one had asked Sid what he wanted, so I asked him. With his progressive dementia he couldn’t really give an answer, he goes to another day care place and does a lot of memory activities with them, and seem to be confused about where he was as he was talking. He sat not speaking having difficulty holding his mug of tea, Sally telling him to put it on the table before he spilt it down himself. I could see my hubby watching and wondered what he was thinking. Sid did not appear to want to put the mug down, or do as he was being told. Sally was off again saying the things she wanted to do, and I spoke to Sid. ‘Only people with people who have dementia can understand what its like to live with it’ I said to him, and he nodded in agreement. I asked him about the day care he goes to and he tried to talk to me about it. He then said, probably the most important thing that was said in that room “I feel like I am something at the bottom of a woman’s handbag”. Do you mean being here I asked him pointing around, ‘No’ he answered. Ahh you mean all the time I put back to him understanding how he was feeling.

The more I listened to Phil and Sally talking, and hearing the animated voices around the room the more I realised my expectations were far too high and I was not enjoying the experience.

The discussion was over, time was up and it was time to go! Before I left I briefly spoke to a worker and said that I thought it was going to be about people living with dementia wanted, and was a little disappointed to hear so many carers saying what they wanted. “I guess it is about both” was the answer.

Okay, how this meeting made me feel:

  • Angry
  • Silenced
  • Invisible
  • Like being treated like a ‘patient’
  • Cheated
  • UPSET

I thought this was going to be about what we, the people with dementia wanted out of a group for support and social activities that we could do with others, and that includes partners and carers who understand that sometimes we say the wrong thing, behave in a way that may not be quite right.  It is right the partners should be there, but let all those who live with dementia, have their own voice, their own control, and their own place to keep their minds active, not something that is organised by everyone else.

How many websites, groups, and advise site both professional and amateur are there for carers. How many forums are for carers?  Many.  Why is this, it is because what do you think when you hear someone has dementia?  You think of an elderly person towards the end stage of the disease, not always knowing who family is, someone who has lost the understanding of what is happening around them, someone who may be shouting out and being difficult and finding it hard to communicate.

Well that is at the end stage, not the beginning, how do you know that you do not already have some kind of Alzheimer’s in the making? Give it a few years and when you know something is ‘not quite right’, something simple such as your visual perception not working right, not keeping up with work, you will be wondering whats wrong. If.. if that happens and you are in your 40’s, 50’s and 60’s you will want people to treat you as they would want treating themselves, not to talk as if you no longer have a voice or part to play in the control over your own life.   Memory Loss is not loss of intelligence, get it?

I just want to finish saying:

I AM NOT INVISIBLE, I AM INTELLIGENT, I CAN STILL TALK TO YOU, UNDERSTAND YOU AND HAVE A DISCUSSION ABOUT WHAT IS GOING ON IN THE WORLD.

Please don’t think that by helping our husbands or partners that it equates to giving support to me.

Thank you for listening if you got to the end of this.

21/03/2014 – Tests to check my eyes

I was summoned to the Treatment Centre to check my eyes.  I had the usual visual field, GDX and another test and all the results were good.  Fabulous! That’s what I always want to hear.  The consultant asked me questions and finally said, I have never heard of the symptoms you are describing, he mused.  Do I look smaller one side to you; no I answered it is usually when I am reading that it occurs, although my perceptions of buildings and road are weird.  I find it fascinating I laughed, and he agreed.  This sounds like a problem with perception and your brain he concluded saying he would write to my Doctor for a referral back to my head consultant, although it would probably be just for notification only.  What an interesting Alzheimer’s Journey this is turning out to be!

My Alzheimer’s Journey – an update

I had an appointment at the opticians yesterday after having some problems with my vision.  A couple of days my right eye hurt and my vision appears to have worsened over the past couple of months.  My eye pressures were fine, and in fact were lower than they have been at 19 and 20 mmHg (millimetres of mercury [mmHg]).  As I have thicker corneas the pressure will always register slightly higher.  I need new glasses for distance.

I mentioned that when I read the right hand side gets smaller, so that it is like reading down a funnel, and that it feels like my right eye is not quite functioning properly.

This is how it looks to me

So, the opticians gave my eyes a thorough check and said my eyes look healthy.  We discussed the brain scan I had had two years ago and the fact that the abnormality, and head pain I get is all on the right side.  It could be a problem with perception rather than my eyes she said; my brain you mean, I thought.  I am not sure whether I am worried or fascinated by the neurology of it all.   I thought of Terry Pratchett  and his rare type of Alzheimer’s affection his sight.  We know very little still, about the brain.

A letter to my Doctor to refer me either to my Consultant for the Alzheimers, or the Consultant for my eyes to re-check all is ok will be sent.  Seems like it is more to do with my brain than eyes. 

An Interesting part of my Alzheimer’s Journey….

Same appointments different places – 17/01/2014

I forgot my first appointment of the year on the 2nd January the at Mental Health Services.  Chelle phoned and we arranged another appointment.  She was very serious as she spoke about us about thinking about care later on when I need a full time carer.  I tried to say that Mr Hsg will never be my carer because he would not be able to cope, but I think other people find it difficult to acknowledge that a spouse simply would not be able to care for someone with dementia; of course they would for as long as they were able then residential care would have to take over.  Wrong.  I already know he is not able to take anything over from me now, he does not get involved in remembering when my appointments are, where they are or who they are with and he is already saying “what do you get from going to see any of these people, you don’t get anything from it”.  I try to explain why it is necessary right now, making sure the services are there for when I need it, getting my medication right, or simply monitoring any changes. It is only because I have transferred to local hospital services that I am seeing these people for the first time.  I think Michelle finally got what I was saying when she said that we had to think about what would happen to me at that point, to which I replied that I would have to go into residential care somewhere.  She said she would contact the dietician to talk about how to write down about my Irritable Bowel Disease and my intolerances in a way that would be taken seriously at a time when I can no longer cook.

The next day I had an appointment at the Doctors Surgery for a dementia screening.  When they phoned me with the appointment I said “I don’t have dementia, I only have AD at present”.  The doctor was lovely but clearly thrown by my lack of dementia.  She attempted to explain to me that you cannot have Alzheimer’s without Dementia.  So I had to explain to her how I managed to get a diagnosis of AD without Dementia.  She diligently read all the letters on my file, and concurred that I was very unusual.  However, this appointment felt like we were saying the same things two days running; no wonder we are both fed up with appointments.

Chelle said that I had an appointment with my Consultant at Oaklands, although I had not received an appointment letter.  Having seen her in Derby previously I Googled it and found Oaklands, Mental Health Services, so we set off.  When we got there it did not seem to be the right place and we went into the office to find out where we should be.  They looked me up on the computer and said I should be at Oaklands in Swadlincote!  She printed out the letter which I had never received and in capital letters at the top it said “Please note new venue for this appointment”.  Back in the car we drove from Derby to Swadlincote and found Oaklands Village a new retirement village.  Oh my, it was impressive, wood and glass, and full of seemingly happy people.  A bistro restaurant, café, hairdressers, library, crafting rooms; I could see people sewing in one, soft furnishings with groups of seating for people to sit and chat, and apartments.  They have a surgery for visiting consultants and my Doctor has a weekly surgery there.  We discussed my medication and talked about support groups, she introduced me to someone from the Alzheimer’s Organization who has an office there. She talked about the groups around neighbouring areas and what they do, but it became apparent that these groups are for stimulating memory for people who are further on in their Alzheimers journey.  I talked about what I would like; a more social type of group who could understand each other difficulties, to be able to talk without worrying what people think when you cannot find a word and gaze into the distance as you are desperately searching for it, not worrying that they will stop talking to you because your conversations become difficult, with the flow of words drying up mid-sentence.  Elaine understood exactly how I was feeling about it, which was so nice.  She said I was unique in the fact I was diagnosed so early that there may not be anyone else as early diagnosed as I am.  There’s a challenge if ever I see one!  She said she would talk to her line manager about it, just because there is no group that doesn’t mean that one cannot be set up.  I told her about my writing and she was amazed commenting that I was writing a PHD….food for thought there (not for a PHD exactly but I could do my own study as I go)!

Holiday, electricity, and space

I have been on holiday..it was lovely.

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http://www.lake-vyrnwy.com/pdfs/homestaybb2.pdf
http://www.lake-vyrnwy.com/pdfs/pontradinsc2.pdf

We stayed at a Bed and Breakfast run by Rosemary at LLanfyllin, Powys.  We have been a few times now and even got married from there.  Walking into the cottage is like coming home, with Rosemary welcoming us as friends.

To begin with we stayed in the cottage (on the end) which we love, then at the end of the week we had to move to the bed and breakfast side, but we love being in there also.  The place is like being in someones home full of  pictures, china and clocks. There are so many clocks in the cottage with each one stopped with a different time so that time stands still at different times.

I love Wales as it makes me feel peaceful with so much space to breathe in.

I find myself looking at all the cottages for sale and imagining if I could live there.  The more I look I realise that I would like some isolation without close neighbours.  A garden to grow vegetables in, with a view that stretches out before me and somewhere to sit and watch birds with my little book to identify them.  Mr Hs said that you would become complacent about the view after a while, but I disagree.  I think you would always be in awe at the scene in your sight.

We did the usual National Trust sites and  visited Powis Castle, taking hundreds of photographs, Chirk Castle, and Erddig.

Having been to LLanberis several times we decided to visit the Electric Mountain tour and went down underground,  which was fascinating and not at all what I thought it would be.  When we boarded the bus we were given hard hats, and drove down into a mountain to an underground hydro electric plant.  The size of the space inside was unbelievable.  Wearing our hard hats looked down from a platform at the machinery below, the noise of the water rushing through pipes with a roar.  During peaks in electricity use, such as TV advert breaks when everyone puts their kettle on to boil water for tea, water from a lake on top of the mountain is released through the massive pipes to generate electricity.  Within 12 seconds electricity is added to the national grid to cope with the surge in use.  The waters destination is the lake at the bottom of the lake and at night when the demand is less, the generators are reversed and pump the water back up to the top lake.   Hydro Electric is so beautiful in its concept, its tiny footprint on ecology – fish have their own tunnels to travel along, its impact on global warming is minimal.  There are two hydro electric power stations in Scotland, and I wonder why there are not more in our mountainous areas?  If you get a chance visit one of these marvels of engineering.   (http://www.wales-underground.org.uk/electric/)

The holiday takes away the reality of forgetting.  There is nothing to remember, there is a reason to get lost, or be confused in somewhere new.  It is a place to just be someone who is on holiday.   At one point someone in a shop made a joke about dementia and forgetting something, I laughed and said nothing.

I am now recharged, and have come back to appointments to meet the new memory clinic, and consultant.  Get that out of the way and off we go to escape out onto the canal systems in our boat.

Memory Clinic and Driving

I had a call from the memory clinic, could I come and see the new Psychiatrist so that she sort out the form from the DVLA regarding my driving licence.  My Consultant Prof L, retired at the end of March and the new one could not confirm whether I was still fit to drive without meeting me.

She read my notes, talked to us about whether I thought I had any problems driving and we  ran through the usual test of the date, year, copy the shapes and count backwards from 100 in 7’s.  This is where I fall flat, I have always have problems with numbers and maths.  To me numbers are squiggles on a page that are meaningless, I do not see any patterns, connections, and I fail to understand any theoretical reasoning.  Quite simply I am absolutely rubbish at maths of any sort.  I got as far as; 100, 93, 86…. And that was it. Last time I had less difficulty.   My memory is visual, and so if I cannot visualize the amount say in, dots, I have difficulty in working out a strategy to come up with an answer.  Mr Hs has said he ‘takes away 10 and adds 3’, I am not sure I can still get my head round it.  Does this mean that my ability to process information has got worse or it is dyscalculia?

She explained the reason for my referral to a hospital nearer to my address.  The Younger Persons Memory Clinic is no longer taking people 60 years of age and over, also that all the services offered need the patient to be in the area.  Fair enough, so Derby will be the best place for me.

We talked about the medication of Rivastigmene being dispensed by my GP which is fine.  I told her of my experience of the medication enhancing my sense of the smell of food triggering a hunger response, which she immediately noted down in my notes.  She then proceeded to tell me of her Research Paper published regarding Dementia and smell. I believe she is the only Doctor to have published on this area of research.

I asked Dr V if she could arrange for paperwork so that I can donate my brain to Alzheimer’s research, and she was thrilled, because there is a lack of brain donation which holds back development in the treatment of the Disease.

She asked me whether I would be interested in taking part in her current research into bio markers, and I immediately agreed.  The neuroscience of my disease fascinates me and I think understanding what is happening physiologically and psychologically helps me accept my future demise.

Something that confuses people is the diagnosis of ‘possible or probable’ Alzheimer’s.  Dr V said confirmation of the disease can only be made post mortem!  Then she said that the correct diagnosis is Alzheimer’s Dementia.  ‘But,’ I exclaimed, ‘I don’t have dementia’, she started to explain that there is no set time when ‘people’ progress more rapidly with the disease.  She has known a patient to be still without dementia after 13 years, and one after only 2.  Like everyone we talk to she talked about enjoying life as much as we can now, and it scares the hell out of me.

I always thought I was a person who accepted things as they were so that I could focus on everything else, but it seems that I want to fight this, which of course I can’t.

 To explain how I feel I imagine that If you have to have a limb removed through disease, you may despair and desperately want it not to be true, but you can see the limb, feel the pain and know that there is a period of readjustment afterwards which although difficult will take over from the despair of before.  The progress of dealing with the loss can be seen and improved with a positive attitude.  When the problem is in your brain, you may not be aware of the rate the cognitive decline is happening, your thoughts will simply change without it seeming odd or wrong.  I am scared that with cognitive decline I shall not be aware that dementia is increasing, because then I can no longer fight it.

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Daisy happy without cares.