I feel angry…

Why oh why are there so many articles about how to prevent dementia by changing your lifestyle?  This Guardian article makes me go……. Grrrrrrrrrr!

Lifestyle changes could prevent a third of dementia cases, report suggests

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Before commenting, read the article please.

What I would like to say is that change your lifestyle to drink less, stop smoking, be more active, keep your brain active and it will make you feel better, make your health better but it WILL NOT STOP YOU GETTING DEMENTIA.

The research/study they must be using to suggest lifestyle can prevent dementia can be applied to any of the following:

Heart disease, Lung disease, obesity, high blood pressure, Diabetes, help with arthritis..and any other condition that being active can help with.

Articles like this make me so angry.  Why?  Because it gives false hope and mis-information.   At present there is no cure for Dementia.  Research has yet to find out what causes dementia, they are beginning to understand what is going on a bit better, but not why this happens.  If they did all of us living with dementia would be on some sort of medication to reverse it, or totally halt it, and we are not.

These articles are really about unhealthy lifestyles and what can happen in the long term.  So why not write that?   Some dementias can be directly through lifestyle such as Korsakoff Syndrome caused by alcohol misuse or nutrient deficiency.   Some dementias can develop through the result of traumatic brain injury.

Here are some REAL sites to find information about dementia from professional bodies and people leading the support, help and information sharing for dementia.

So, I wish these newspapers stopped writing this rubbish just to fill space because it is not helping.

Rant over……..

 

 

 

Quandaries and solutions

Life goes on with its ups and downs and you think, ‘I really must write my blog‘.  But then you think ‘I better not write that‘.   I know that many of you know what I am talking about because it is that moment when you have an urge to share something very close to you but worry that it will cause a problem if others read it.  But how to let people know how everyday things affect you otherwise.

For me, living with Alzheimer’s (ALZ), there are things I want to just write because I am at a very early stage still and it may be of use to people knowing even at this stage how it affects me.    So, what do I do?  My blog is not anonymous in the sense that it has a name, not a random couple of words.  Maybe that was my mistake, maybe I should have made it more anonymous. I could have called it something like – ‘Missing A Marble‘ perhaps.   I guess it would not have made much difference apart from not being seen as a real person.

There are lots of things that go on in my life where my ALZ or dementia affects me but only in the slightest way.  In ways that would make me question why it affects me that way in particular.   The type of wondering that lingers in a corner of your mind knowing that you can’t quite put your finger on why you should react that way.

For a while, I have been under some stress at specific times.    To all people living with dementia, stress is awful but then stress is awful to everyone you could argue.  Why is stress worse for me?  When someone is shouting at you and you have no way out, it can make your dementia feel worse.   Most people can shout back, hold their own, and stop abuse towards them, and of course, there are many who simply can’t.  But, what if you have always been able to deal with angry people and suddenly you can’t?  You find yourself trying to diffuse a situation where someone is shouting in your face about nothing in particular, maybe most would find it difficult to do.   Not me, I trained three years as a counsellor, I understand how to diffuse situations, can read the body language, can see past the abuse that is vomiting from someone’s mouth.

Now, though as I draw on all my knowledge and experience, all I can come up with is – “la la la la la la” as loud as I can!   Worked, but even I realised that it was a bizarre thing to be singing at a time when another person is at their most aggressive.

Next time is different, I can’t cope with being shouted at.  The red face thrust at me as the mouth is opening and closing with the most absurd ridiculous noise emanating from it.  I start shaking and crying as I call the police…..

I have Alzheimer’s, I don’t need this. Nobody needs this.  But, I, cannot cope with it.  They should not be abusing me this way knowing I have dementia.

This is what families can do to each other.

But,

I strike back.   I will not be overlooked, patted on the head and accused of being “unstable“.  I will show you how capable I am.  How I can still organise charities to pick up furniture, quotes for house clearance, create timelines, communicate with solicitors, get things moving.  Not because I want you to see me being capable, but simply because I have the time and I can do it.

Disappointed.

I had a disappointing appointment at the memory clinic the other week.  The nurse did my MMSE (Mini Mental State Examination) test, which I always do well with.  I can usually remember the three items, this time it was coat, book, and apple.  I put the apple in one pocket and the book in the other and had no trouble remembering it!   I am the master of solutions…

I did get one score wrong – counting backwards in 7’s from 100..I was never very good with numbers and have to take time to work it out in my head, I am sure I have dyscalculia (problem with numbers).  I got one wrong and she said I probably just made a mistake.  Really?  ‘No’, I said, ‘I meant to say the number’.

Just because my MMSE scores are high doesn’t mean that I am not affected by my Alzheimer’s.

I can tell what has changed for me in the past year since my last appointment.  One thing is the ability to tell when something said is being said in jest or for real.  I struggle to understand throw away remarks as being just that.  I have to question, ‘did they mean that?’ There have been times when my daughter has said to me that she or someone has been joking when they said something, that it wasn’t meant to be real, and I have struggled to think it out how I couldn’t have seen it.  But truth is I don’t get these things like that any more which can be a bit embarrassing for me when I respond in all earnest.

I also find myself crying for no reason at all.  NO I AM NOT DEPRESSED, how many times do I have to say that!  I have a positive outlook on life, in fact I think my life is pretty good right now, despite having Alzheimer’s and despite the prognosis.  I have come back from a wonderful holiday….will write about that next and how I got on travelling, and have booked another holiday to Tobago in February to look forward to.  Anyway to get back to the ‘crying’ business, the nurse tried so hard to tell me how I have a lot on my plate and it is natural to get depressed about things. Grrrrrrrrrr…..I tell her I do not have reactive depression, nor do I have clinical depression, but I think she has her ears turned off.  Finally, thanks to my online friends living with dementia, I was told about PBA  (Pseudobulbar affect).  Online sites talks about ‘emotional incontinence‘, although I prefer the term emotional unzipping as explained to me by Dr. Jennifer Bute.   Anyway, I think I may have to print out some information and post it to the memory clinic so that they can learn about it!  I took it the info to my GP to tell them that I did not want to increase any antidepressants, he took the information and typed it into the computer without commenting.

I also discussed about the 6 monthly reviews with my GP which I have never had.  Apparently I am supposed to make the appointments myself.  I asked how I am supposed to remember to make an appointment every six months when my memory for appointments is pretty awful?  No real answer, but a suggestion to get the Doctors surgery to remind me- that’s not going to happen because they don’t do that either.  So, I am left without a solution for that one other than buy my diaries in advance to make sure I write a note in.

All this is more difficult when you live on your own.  I don’t have family to remind me to do things, or notice when I don’t,  or notice when I am not up to par that day.  I have to rely on myself alone.   Take it easy on the days when I am not 100% and push myself on the the other days.

I am also struggling to take my medication every day.  For goodness sake, I leave it next to the kettle so that when I make my morning coffee I can take my tablets, but do I?  Nope..I seem to be blind to the blister pack, and simply get my coffee.  A friend suggested that it would be better if they incorporated medication with coffee/tea and no one would forget to take them then!    I think, how can I not remember that I take medication every day, how stupid is that?  I am an intelligent woman and am used to putting all sorts of solutions to  put things in place, but it seems my brain simply switches off to certain things occasionally. Don’t think I haven’t tried all sorts of things because I have.  I have thought of a board on the wall to mark when I have taken it but I know I won’t keep that up.  I am now on my second phone app with a reminder to take them…which seems to be okay at present.  I tried recording my voice telling me it was ‘time to take my medication’ but randomly it started up during the middle of the afternoon!   Right now I have an app that is a simple reminder and is working.

There is a research study I would love to join but have realised that joining any research study is going to be hard for me because I have no ‘study partner’.   Single people living with dementia seem to be more disadvantaged because they have no ‘other’ to monitor or talk for them.  It is so hard for me to acknowledge that.   I did ask the Alzheimer’s Society if they could find someone/a befriended for me but I am unique in that I am so early in my diagnosis there is no one suitable for me.  I guess looking for a ‘friend’ to do things with who will get to know me and maybe travel with me to meetings etc, is a tall order and would take someone who is in a position to be flexible who would like a friend also!   Who knows maybe I shall meet someone who is need of a friend also….

As well as my recent holiday, I do have daily good things.  My allotment is coming along, slow but sure.  Once I find a way of getting some free pallets to my plot I shall continue to make some raised beds.  I had lots of veg this summer and am planning for next year already.  I do enjoy my activities with the YPWD – Young People With Dementia group.  I realise how lucky we are in Newbury, Berkshire to have them because what they provide is quite a rare thing around the country, which will hopefully with change with new groups springing up focusing on younger people with dementia.    I have enjoyed my weekly gardening with them, and the art activities we have done.  Recently we have had Harriet with us from the Corn Exchange in Newbury with us organising some activities in connection with the Library, and a morning talking about childhood books was most enjoyable.  We have drawn and painted, and created paper sculptures.   Yes this is an important group for me because I feel like I can be myself and not have to be ‘ultra okay’ all of the time especially because they are all truly lovely people.

 

 

Well now, what’s new?

Gosh it feels like ages since I have written and posted anything.  I am quite busy these days and need to get some time to sit and read, and also write.

Early December I lost my Dad.Scan 9

At 94 his heart simply stopped.  He was at home and had lost the reason to live after my Mum died last June 2015.   It was a sad time for all our family arranging a funeral for the second time in six months.   Now we have the hard task of working together to clear the family home, I don’t need to say how difficult that is.  We all miss him so much.

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So what else is new….well the biggest thing is that I recently tried to join a research trial for a new drug for dementia that has had some remarkable effects.  So I was keen to get on to the third phase.  Along I went and carried out the initial memory tests to see if I was eligible and was not really surprised to find out that my memory was too good for the trial!  Over time I have been feeling that my cognitive abilities have indeed improved and I discussed it with the researcher.  I have now been taking Rivastigmine medication (Exelon) for the last 2 (or is it 3 years?) and it has certainly improved things for me.  I have also worked hard in trying to keep my mental abilities active, by reading, writing, playing scrabble, sudoko and the like.   I think it is great news.   There are times when I know people have questioned their diagnosis (or others questioned the diagnoses of someone) when they do not appear to have any great cognitive difficulties or have improved.  It is very unsettling when someone has a diagnosis of dementia then told they do not have dementia because the symptoms have improved some what.  People want a reason for their cognitive difficulties.    For me, I would love to have a different diagnosis, ‘So sorry we made a mistake you don’t really have Alzheimer’s those empty holes in the blood flow in your brain scan was just a smudge on the camera lens’  and I still wonder if brain trauma looks the same as Alzheimer’s in a scan, but then know it is likely it leads to the same thing.  I even thought of trying to get a different diagnosis, perhaps downgrade it to MCI (Mild Cognitive Impairment) which I already have, but the reason for it was diagnosed as Alzheimer’s.  It all seems so complicated and simple at the same time.  What does it matter anyway – well I will tell you how it affects you.  I have to first remind you that I do NOT have Dementia, yeah yeah I know that Dementia is a symptom, but it is also a disease, and Alzheimer’s is classed under that.  You still with me so far?   Ok so having been told before by one GP that you cannot have Alzheimer’s without dementia due to it being a dementia, I have Alzheimer’s disease without dementia.  That fact still remains true at present unless anyone else can interpret my scans differently.    Holiday insurance: did you know that you cannot get a yearly insurance if you have a diagnosis of Alzheimer’s?  No matter that I may have only mild cognitive impairments, it is the word Alzheimer’s that is the crux.  I guess if I said my diagnosis is MCI then I would be able to get it.  I can get individual insurance for each holiday so I am told but at a greater cost.   (I have just booked a trip to Alaska with my daughter in August which we have been saving for! )  Driving licence:  I would have to apply for each every year with my doctors confirmation that I am able to drive.  I have however had to surrender it because my attention  is too poor.   Yet someone with ADHD, are they able to hold a driving licence I wonder?  Suffice to say the word Alzheimer’s in itself is a barrier to a lot of things regardless of the level of it.

It’s great though that my cognitive abilities have improved and I hope it will remain so for many years to come…….

I am involved in my local YPWD (Young Persons With Dementia) group and join in activities locally.  We had an arts and crafts course before Christmas which was fun, and since then it has been furniture up-cycling – something very close to my heart as I have furnished my flat with old furniture and am up-cycling it bit by bit.  I am really enjoying doing it and discovering what my style is!

On Monday I shall be speaking at the Berkshire Dementia Action Alliance Meeting.  When I was asked I felt a bit of a fraud but then I am more than capable to talk about how it was when I was diagnosed and what I have been doing since to keep my brain active – use or lose it as the saying goes, and how to make sure that I remember everything on a daily basis.  I can talk about how I still fear the future – when I allow myself to.   Also speaking with me is a guy  who is another member of the Newbury Empowerment Group so we know each other.   So I am trying to put together some notes for that.  Will let you know how it goes.

Next, I have been asked to be part of local nurse training giving information about early diagnosis and my experiences.  I can not only pass on what I know, I can also give them lots of information that they will not have even thought about!   I am so pleased to have been asked and can be a voice.  Not sure whether that will be by video or a talk.  Looking forward to being involved with that.

I have had some very small involvement in the West Berkshire Neurological Alliance, which is an excellent forum.  I regularly attend the Berkshire West Therapy Centre using their exercise machines to keep fit in a way that helps my Fibromyalgia.  It is such a unique place with only one other coming close to it in the country, I help out with raffles, and will help when they move premises on 1st April.

This year is already turning out to have the promise of lots to keep me occupied!

Closing a chapter…opening a door

You can’t have failed to have noticed that I have made some major changes to my website and myself.  I feel I am closing a chapter in my life.

Firstly, I have am in transition from being married to being single.  It is not appropriate for me to talk about that, only how I am redefining my life now.  Hence the name change, reverting to my maiden name.  ‘Gill Taylor Muses’  also introduced a new chapter in my life for me.

When I was given the diagnosis of ‘possible Alzheimer’s’ my life was turned inside out, upside down.  It felt like there was nothing left for me to plan for, to look forward to, that my mental demise would quickly overtake my life.  So I began making some wonderful friends across the world who also had been given dementia diagnoses.  Instead of just having support, they have inspired me, they have all worked tirelessly to show how anyone can live well with dementia, that education is needed world wide to enable everyone who has dementia can lead a better and indeed in many cases a productive life before the end stages.  They work to show people how to understand how dementia affects people, and how to communicate effectively.  I often hear people recalling their experiences of trying to talk or understand someone in the later stages of dementia who is seemingly talking nonsense and leaving everyone confused and frustrated.  I have learnt, however, how effective understanding and communication can make the experience  better for both sides.   It is simple really, all you have to do is learn about dementia and how it affects the brain, nothing technical just relating the personality of the person with dementia with their confusion.   Random sentences such as ‘I want to go home’ can simply mean “I am confused and am not sure what is happening, please reassure me”.    So a simple reassurance that a familiar person or place is around them, telling them you are they and everything is okay can help.    No need to talk about, where home is or isn’t.   That is a loose example that may not fit every situation but knowing the who the person was can help in how you talk to them.  My own mother never lost her sense of humour with her vascular dementia right up till the end.  So to bring humour into her life when we were talking was a really important way to make her feel safe and comfortable.

I digress.  I got out my diagnosis letters and re-read them.   At the time when you receive these letters all you can see is the word ALZHEIMER’S or DEMENTIA jumping out at you.   I was looking at it, and thinking about all the questions that were asked over various appointments and tests. Q: “How long have you notice problems with your memory” – this is a simple question isn’t it.  Answer:  Always.   Q: “Yes but more recently how long has it been getting worse”.  A: Well, I have noticed it more in the past couple of years.  Actually my daughter said to me “Mum, your memory is rubbish you should go and see about it”.

Why did I answer like that?    They were pushing me to give then a date, a time, but it has always  been a problem.  I remember at University, I was 40 years old and felt so excited to be given the opportunity to study but worrying that I would find it hard to remember any of the information that I had to learn.   See, that’s another thing I have always had a problem learning new information.    I studied Combine Science; Psychology which included how we learn new information, in fact my final year dissertation was titled Evaluation of Configural and Elemental Models of Associative Learning Using Visual Lexical Stimulus  – in simple terms that means looking at two theoretical models of how stimulus enables us to learn something new, using two categories of insects and their parts, and the cognitive process of learning which belonged to which.

For me it was the most challenging of studies because it was complex, however it gave me a good understanding of associative learning.    This does have a bearing on my diagnosis and my understanding of my own cognitive difficulties which makes up the reasoning behind my diagnosis.

My experience at University was such that I would have to read, and re-read the same things over and over.  Make notes and then revise those notes because I would not remember anything in them.   Lectures were a nightmare because I could not remember what was said in any detail whatsoever, my notes were a mess lacking in any cohesive form and made no sense once I had left the lecture theatre.  Short of writing down verbatim what was being said I had no chance of remembering details.  The worst part was the lack of any memory of the substance of many of my lectures.  I knew I had a real problem but never thought to ever question it with anyone.  Psychology is a long list of theoretical models by Psychologists and dates that have to be remembered in the correct order.  Arrrggghhhhh……..yes this was a nightmare for me but I would learn them by rote learning, and by making up ridiculous sentences with the initials of their first name.

I also studied History of Science, and with such a range of subjects, facts and figures I am surprised I managed to remember anything.  One thing I have always been good at is using my imagination and lateral thinking.  A learned skill from childhood when your memory is extremely poor.   During my finals, I had an exam whereby the questions arose of things that none of us had focussed on during revision and I wrote a complete essay using my understanding of the progression of science, and one paragraph I had read in a book on Alexander Von Humbolt and weather systems.

Following University I worked in IT and was fortunate enough to have a wonderful friend (thank you Darren) who would continually give me the technical instructions that somehow I could never manage to learn.  I wrote everything down, every single detail of instructions, and even then managed not to understand them.  And when I couldn’t remember something that I had been doing day in and day out, Darren would be the one who would tell me, yet again.    He did say on more than one occasion that he had already gone through a procedure with me, but thankfully always told me again.   This enabled me to be effective in the job I had.

Finally, as I was getting older, my memory problems was beginning to be more apparent.  The most apparent thing was that, not that I was forgetting, but I had no memory of events that day or previously.  Notes I had made seemed alien to me having no knowledge of writing them, and of course the information they contained I couldn’t remember.

So….was this new or was this something that has got worse as I have got older?   Who can say after 60 years of age that they have not wandered into a room and forgotten why they are there?  Or forgotten what they are talking about midway?   Or meant to do something important but managed to forget remembering after it is too late?

Back to my diagnosis.   I had a brain scan, the scan shows perfusion (reduced blood flow) in several areas of my brain.   Medial/parietal lobes, more so on the right, and an underdeveloped frontal lobe, but no perfusion there.    The underdeveloped frontal lobe is attributed to possible brain damage due to being dropped on my head as a baby (I asked = no), or repeated blows to the head throughout childhood from my mother.    I now would like to discuss with my consultant when I see whoever it is next year, my thoughts about this.  I can’t possibly have had Alzheimer’s all of my life.    It is written and was discussed during the appointment where I was given the diagnosis of possible Alzheimer’s that I do not have DEMENTIA.    ‘Not possible’, one doctor has said to me, of course you have dementia if you have Alzheimer’s disease because it is one of the dementias.  Confuses the hell out of me I can tell you!

So here I am with memory difficulties that I have had most of my life, preparing to become totally disabled through dementia, when I can no longer relate how I am to the ‘label’ of Alzheimer’s.

Is is wrong of me to say, I have always been like this and therefore know that it could be a long long time before dementia takes hold as much it will with anybody, so until then I will assume that my diagnosis is a label that cannot be proven until autopsy.

Of course I shall still be shouting loud at the ‘Empowerment Group’ for dementia meetings, because I can!   I shall be a voice that can speak for those who cannot.  I shall still be vehemently fighting for Dementia education for all, again because I can!

I am also getting involved in the Fibromyalgia Support group because that is what is affecting me the most these days with lots of pain.

Onwards and upwards, I feel it will be an exciting year of activities in local groups.

My first week in my new home

Think I have overdone the unpacking, sorting and painting of furniture this week and slept most of yesterday!

Things are sorted out in my new flat and looking nice and I am now getting used to living alone again.    I have noticed as I have been trying to organise new Doctors, Opticians and the like, how on a good day I am more than capable, on a wobbly day, I can be a bit befuddled.   I know that I need to keep in check my awareness of making good decisions, because I know that at some time that I will become less able to take the right one.   I need help putting my new TV together (putting the stand together and setting it up), but am so aware that I must be careful about who I go to for help.  I do not have the strength to screw the stand together so a handy man should be able to do that, but who do I know who to choose?   These are real worries.

I have talked to my bank and thankfully they are fully ‘dementia aware trained’ and was given some excellent advice as to how to manage my money safely.   Thank you and well done NATWEST Bank!

I have painted my new (second hand) furniture with chalk paint and am well pleased with how they have been transformed.  My pictures are up, and almost all of the boxes are empty.

I have finally managed to settled down to begin reading again, my absolute pleasure!

I follow a blog by Pippa Kelly and she writes about “Dementia Friendly.  What does it really mean?”   (click the title which is the link to take you there) which is spot on.   I love how she questions what it means and then shows us by recounting it in action.

For us who are living with dementia, wearing a badge, proclaiming you are dementia friendly is not enough if you have no idea how to implement it.   It means, writing things down for us, giving us clear instructions, signposting clearly and  repeating everything.   I always comment that I may look as if I will remember or understand everything, but that is a mistake to make, because in reality I will not remember what you said, or your instructions.

I am resting up this weekend and doing some more reading as my head is not ready to take on the world quite yet.

Alzheimer’s: When prosecution of child sexual abuse is unable continue due developing Alzheimer’s

Before I start, I must state that this is my opinion only.

Lord Greville Janner has allegations going back to the 70’s for child sexual abuse when he was an MP in Leicestershire, UK.   It is said he befriended manager(s) of children(s) homes for access to young children.    I remember one case in particular regarding a children’s home in a small town where I used to live.   A friend of mine worked there and gave evidence during the court cases when it was first investigated.

Greville Janner’s name was mentioned way back and I am not going to go into details because you can read the facts in the news today the evidence regarding whether he was involved in child sexual abuse, and the failure of the CPS to bring him to court on several occasions.

The Crown Prosecution Service has deemed him unfit to bring to prosecution because he is living with Alzheimer’s disease.   So the case will not go any further meaning those adults who are living with the heritage of being a victim of sexual abuse at one of these children’s homes will never be able to see justice.

This is a very emotive subject, but one I think that is important.  Without the recognition of a court judgement, will these people feel betrayed by the justice system?

Lord Janner may be unfit but if there is a case for prosecution, surely he should lose his title?  As a Lord he remains to sit in the house of Lords, Alzheimer’s or not.

Surely having Alzheimer’s does not absolve someone of previous crimes committed against people, unless they are not able to mentally distinguish right or wrong at the time of the crime.

Is it right to let them off?  Should they still be prosecuted even if they are unable to serve a sentence.  For the survivors of the abuse it would mean a public acknowledgement of this man’s crime towards them.

I feel very strongly about supporting survivors of any crime, because they need our support in a world where justice may seem very cruel at times.

My personal view is that yes – he should be prosecuted because I refuse to believe that his memory of his whole life in the 1970’s and 80’s has been forgotten.   I can also see on the other hand that this would also be very difficult to do.

This is not an easy debate to have but one which I feel must come.