Tag Archives: dementia

Mild Cognitive Impairment

This post is off topic to my own health issues, but is something I’m currently dealing with with my step-Dad and being as though we all have parents it might be something some of you are also facing or will face in the future.

I’m going to start by saying I am utterly convinced my step-Dad has a learning disability of some kind, though as a child in the 1950s of course this was never investigated.  He was just labelled as “stupid” and shouted at a lot 😦  The reason I say this is:

  • He ties his shoe laces in a very bizarre fashion.
  • His handwriting and spelling are appalling.
  • His logical thinking is even worse.  For example the light bulb blew on the landing one day and off he toddled up the stairs with a new bulb and an axe in his hand.  When asked what he needed the axe for he said “if the bulb is hard to get out I’m going to give it a bit of tap” not understanding that hitting a glass bulb with an axe is going to break it into smithereens.  Another example is that we were having a new dishwasher fitted and needed a 3″ hole putting in the external wall of the house for the waste pipe, which my Dad thought he could achieve using a hammer and a dinner fork :-/
  • He is hopeless at sequencing and couldn’t put together a piece of flatpack furniture, or follow a recipe, if his life depended on it.
  • He’s never been able to repeat back a tale correctly, so much so that we’ve never been able to rely on him to accurately tell us anything which has at times made life hugely difficult and is the reason I insist in going to all his medical appointments with him even though he hates me being there.
  • He is very emotional and can cry at the drop of a hat, and lose his temper at the drop of a hat.

Having said all that, he is by no means thick and for some things has above average intelligence.  His memory has always been superb, I think because he’s always had difficulties with reading so has developed his memory skills to compensate.  He is also excellent at maths and can do mental arithmetic better than anyone I know.  I feel immensely sad that he has never been assessed for his learning difficulty because I think it would have done heaps for his self esteem to know that the issues he’s faced all his life haven’t been down to lack of intellect, but rather a brain disorder he could do nothing about.

The reason I tell you all this is to set the scene for the difficulties we faced in realizing he was starting with cognitive problems in his mid seventies.  Because some his behaviour has always been a bit strange, his ability to rely information dodgy and his reasoning ability off, when he first started with cognitive issues we didn’t even notice.  It was only when his once superb memory began to be affected that a huge red flag was waved.

One Mothering Sunday I was taking my parents out for lunch to a Hotel in the town where they live and my Dad, who was driving, couldn’t remember how to get there in the car.  He used to drive for a living and has always been excellent at directions, so to say this came as a shock to us all is an understatement.  He then started forgetting acquaintances names when he was telling us who he’d bumped into while out for a walk and struggled to recall the names of actors in tv shows, which used to be his speciality.

My Mum then started to express concerns about his driving, saying that he’d driven through red traffic lights without evening noticing them.  He was very easily distracted and didn’t seem able to carry on a conversation and drive safely at the same time.

He’s always been someone who likes routine, but now when his routine is disrupted he becomes tetchy and agitated and he simply can’t cope with two things happening at once.  He has developed rituals which take ages to perform, for example at 7pm on Friday nights he goes out to play darts but has to start getting reading at 5pm.  Quite what he does for 2 hours is anyone’s guess, because all he needs to do is change his clothes, collect his darts and money and put his coat and shoes on, but he faffs on for ages and if something happens to break his ritual he gets really stressed.

After about 18 months of memory decline he also became very tired all the time.  He could sleep for ten hours a night then get up, have breakfast and nod back off on the couch at 9am.  This was so unlike my usually active and full of life Dad that Mum and I decided he needed to see the GP.  However, we didn’t want to worry him so being as though he was also having trouble with his water works I made an appointment with this as the excuse, but beforehand I wrote to his doctor outlining why we were really there but telling her not to mention the “dementia” word as we were hugely worried that my Dad might become anxious and depressed if he thought that was on the cards.  She was excellent, initially talking about his tiredness and urine issues then going on to subtly ask him about his memory and any other problems he might be having.  My Dad, though, is a person who will never admit to being ill and told the GP that he had no other problems other than weeing in the night – thank God I’d filled her in on his memory problems otherwise she would have been totally in the dark and his symptoms not investigated.

The Doctor referred him to the local Memory Clinic and within three months he’d had an extensive assessment carried out in his home by a lovely specialist nurse.  This involved lots of written and verbal tests and, to our absolute astonishment, he passed with flying colours.  Seriously, he did superbly – my Mum and I mentally took the test alongside him and he outperformed the pair of us!  How could he be having such issues in day to day life yet perform so brilliantly when tested for cognitive deficiencies?!  He was also told he would have to re-take his driving test, which again his passed no problem, and his brain MRI scan came up totally normal.  In one way this was fab but in another it was hugely frustrating – his family knew he was having difficulties but for the most part they simply weren’t being born out on the tests.  Having said all that they did pick up on the fact that he used inappropriate language in converstion, had some issues with spatial tasks and his memory problems were apprent in taks involving verbal recall.

He was diagnosed as having something called Mild Cognitive Impairment (MCI) which means he has more cognitive problems than a healthy person of his age but they aren’t serious enough to be classed as dementia.  He has to be re-assessed every 6 months though because a percentage of people with MCI will go on to develop some form of dementia over time.

My step-Dad is now 78 and over the last year his memory has worsened, though not worryingly so.  He has started a new behaviour, though, which I could find nothing about online.  He whispers to himself constantly, but he knows he’s doing it and only does it when he’s alone.  It’s common in Alzheimer’s for people to talk to themselves in mirrors or to hallucinate and talk to imaginary people, but they don’t know they’re doing it which isn’t the case for my Dad.  I also know healthy people talk to themselves, living alone I certainly do, but it’s in a normal voice or I talk to the dog like he’s human.  My Dad’s behaviour is completely different – a whispered mumbling steady stream of chatter the second he leaves the room.  I caught him yesterday putting his shoes on, whispering away to himself at a hundred miles an hour yet when he realized I was there he stopped immediately.  I have no clue what this is all about though have mentioned it to the Memory Team.

He’s also now making information up.  For example, he’ll talk to his sister on the phone, often on the loud speaker so my Mum hears the conversation which is how we know he fabricates.  When I arrive he’ll tell me his sister has phoned then go on to tell me some of the facts of the conversation and some stuff he randomly just makes up.  We have no idea why he does this.  When you’re having a conversation with him he seems totally engaged and appears to have followed the topic fine but my Mum and I know he hasn’t, because if you stop the conversation mid way through and ask him to repeat what has just been said he can’t.  He makes an excuse that he didn’t hear or catch what was said but that’s not the issue – I’m not really sure what the issue is, but it’s not his hearing which is regularly checked and is OK.

My Mum has zero patience with him and gets really irate when he can’t do things or tells her information which is wrong, but my poor Dad can’t help his brain being ill any more than she can help her heart and lungs being ill.  It must be so frightening to feel isolated from conversation and to live in a world which often doesn’t make sense and he needs a structured, calm, supportive environment not her winding him up and making him even more stressed.  She should be encouraging him to develop routines if that’s what helps him cope and not demanding things of him which he clearly can’t do, such as cooking or keeping track of finances.

Some people with MCI don’t deteriorate over time but I’m fairly sure my Dad will go on to be diagnosed with full blown dementia.  In fact, when I talk about him I always say he has dementia because I know he does – the fact this isn’t currently born out by official testing is irrelevant.  It’s obvious to those close to him that his behaviour isn’t normal and he struggles hugely with some aspects of daily living, though he’s learned over time to cover this up and often does a good job, you’d only know there’s a problem if you know him well.


Adult children of dysfunctional families

My parents split up when I was 7 and I was moved 200 miles away from everything I knew to live with a succession of relatives.  In the first 2 years we moved 9 times, usually after my Mum had fallen out with whoever we were living with at the time and often for good reason (eg. my Nanna used to belt me and if I wanted to read a book I was made to sit outside in the car, in the middle of winter).

I’ve never talked to her about it, but my Mum obviously had mental health issues.  Anti-depressants as we know them today didn’t exist though, so I’m fairly sure she was put on some kind of benzodiazepine probably valium.

I’ve always loved animals but had had to leave my cat behind, so when I was 8 my Mum got me a rabbit.  She couldn’t afford to go to a pet shop to buy one so I’m fairly sure my Uncle (with whom we were living at the time) caught a wild one.  It was vicious its whole life and I never even got to stroke it, let alone cuddle it.  I called the rabbit Whiskey, which tells you a lot about my Mum’s drinking habits at the time.  She wasn’t an alcoholic though – that came much much later.

When I was 9 my Mum met my step-Dad.  It was a volatile relationship from the start and they argued like their life depended on it.  I would come home from school with a sick feeling in my stomach, not knowing if they would be speaking, not speaking, if my Dad would be in a strop because his favourite football team had lost a match the night before or if my Mum would chuck something at him across the dinner table in temper.  Our home with filled with a constant under-current of tension and you could often cut the atmosphere with a knife.

On the other hand, when things were good they were great.  My Dad has the most wicked sense of humour and there were days when everything was hunky dory.  But I always knew it wouldn’t last and even when I was laughing I’d be waiting for someone to say the wrong thing and for it all to kick off again.  They were both wonderful with me though and never shouted or raised to a hand to me, but the consequences of living within their toxic relationship and with their almost split-personalities changed me forever.

Of course our home life was a big secret and I instinctively knew I wasn’t allowed to talk about what went on within our four walls.  To the outside world my Mum was lovely and all my friends envied our close relationship.  My Dad was a bloke’s bloke who played darts, loved the footie and would help anyone at any time.  If I meet people in the street even now who know him the first thing they say to me is “he’s a grand fella your Dad” and, when he wasn’t losing his temper like a 5 year old child, I’d agree with them.

Add to the mix the issues I had with my absentee biological Father, my giftedness and the emotional depth and sensitivity which comes along with that, the pressure I was under at school to achieve academically because I was gifted, the lack of any adult in whom to confide and it comes as no surprise that I spent most of my teenager years clinically depressed and by the time I was 18 was on anti-depressants and regularly sat in a Psychologist’s office trying to make some sense of the world.  I couldn’t wait to become an adult and get the fuck away from home.  I loved my parents but when I finally had a house of my own I had peace and stability and could live without the daily anxiety of wondering what was coming next.

Fast forward 30 years, I’m now 50 and both my parents are ill and in need of huge amounts of help.  Consequently I’ve been drawn back into their lives and back into their relationship dramas which, despite being married for 40 years, have never changed.

As if all that weren’t bad enough, my Mum was forced to stop smoking when she had half her lung removed 6 years ago so in order to get through the days her drinking took off in earnest.  She became an alcoholic who was drunk every day by noon.  This brought back hugely negative emotions from my childhood and I really struggled to cope with it, so much so that a year ago I paid to see a counsellor.  She was helpful and I did manage to come to some sort of terms with the situation.

In the summer of this year my Mum contracted Guillain-Barre Syndrome and was in hospital for 3 weeks.  During that time she dried out and I lied to her and said the Doctors had told me that if she drank when she got home she would die, so she didn’t.  The last 3 months have been fantastic.  She has been back to the Mum I’ve always known, without the nasty bullying of my Dad (who is in the early stages of dementia), the finding everything hilarious because she’s plastered and who rings me lucidly every day for a chat and a gossip.  Over the past few years I’ve really missed the friendship my Mum and I have always had and it was wonderful to have that back.

But of course she wasn’t receiving help for her alcoholism, so I knew it was just a matter of time before she fell off the wagon.  She was housebound for the first 2 months after coming home from hospital, but the second she told me “I’m going to go with your Dad in the wheelchair to Sainsburys on Friday just to get out of the house” I knew it was only a matter of time.  And sure enough, 3 weeks later I turn up at the house to find her drinking a glass of wine.

She’d only bought one of those little 18cl bottles, and her excuse was “I’d like a glass of wine with my Christmas dinner but don’t know which one to choose, so I thought I’d try this little bottle to see what it’s like”.  I felt sick.  That she would be wondering what she could drink on Christmas day when it was only 14th November tells you everything you need to know about her mind set.  So I sat down and, as gently as I could bearing in mind I was in bits, said that I loved them both but I was going home and I was not coming back.  And I got Bertie and my handbag and left.

That was on Tuesday and I have felt horrendously ill ever since.  I wake up with a huge sick knot in my stomach, can’t eat and feel so exhausted I’m like a rag doll.  Years of living with the anxiety and unpredictability of my parents’ behaviour seems to have come to a head and I feel floored.  I have spent 3 days spontaneously sobbing and feel on the edge of some kind of breakdown.

It would be so easy to simply walk away, but they are old and sick and my poor Dad really doesn’t need this drama.  So I have rung my Mum and told her that I love them both, and I will take care of them, but I simply cannot visit them – not for a while.  Things are going to have to change I’m not sure what the new future looks like yet.

They depend on my hugely, I have been the glue that’s kept our family together, and I know they will be terrified I am going to abandon them, which I would never do because I couldn’t live with the guilt, but there are going to have to be new ground rules.  I have felt responsible for keeping them on an even keel my entire life and I am too fucking tired to do it anymore.  That I am ill myself seems to totally pass them by.

In not visiting them, however, I have no-one to look after Bertie, my dog who is a rescue with severe separation anxiety and who can’t be left on his own.  That means I can’t go to my Camera Club which is my passion and often the only thing which keeps me going.  It’s the only time I get out of the house all week, the only time I ever see anyone other than my cleaner and the post man and is the only social life I have.  I feel such rage that my Mother’s selfish behaviour has robbed me of the only joy I have in life.  A life which is devoid of any pleasure and any of the normal things healthy people take for granted.

Sometimes I wish she were dead.  The second she retired from work she sat in a chair, watched telly, smoked and drank and basically waited to die.  There are times when I wish this would happen and put us all out of our misery.  She has been unhappy her entire life and has made me unhappy along the way.  Then I think about all the times she’s helped me, comforted me, been there for me, loved me and am wracked with guilt.

So, that’s where we are today and I’m in complete turmoil.  I feel so poorly I can barely get dressed and am constantly on the verge of tears.  It’s like every emotion I’ve ever felt towards my parents has come to the surface and I can’t push them down any more.

Please don’t tell me to get help, contact al-anon or anything else.  Trust me when I say there is no avenue I haven’t been down.  My Mum doesn’t want help.  There is no al-anon where I live and in any event I don’t do the bullshit “higher power” thing.  My parents have what they need to live: a cleaner, carers to help my Mum shower, a gardener, their meals provided.  But as I’ve mentioned before it’s all the stuff that paid help can’t do which is the stumbling block, like finances, paperwork, mending the seam on my Mum’s nightie, submitting electric meter readings, grocery shopping, talking to medical staff as neither of my parents are capable and 1001 other things.  I feel so trapped, and resentful and guilty.

There aren’t any easy answers.  Walking away and leaving a parent with dementia is not an option.  Carrying on as we always have is not an option either.  I have no clue what to do.

Research trends

I’ve mentioned recently my frustration at the current research trend in the M.E. world to focus on energy production when, as a sufferer, I know that the ‘fatigue’ (for want of a better term) I experience is merely a symptom of immune activation not the root cause of my disease. Researchers have been studying energy production, in particular the mitochondria, as a cause for M.E. for over 20 years now and still haven’t found anything, which leads me to conclude there is nothing to find.  I’m not suggesting that mitochondrial dysfunction isn’t part of the disease picture but it’s definitely not the cause.  I wish these people would talk to patients more, especially we old timers who’ve lived with the illness for decades!

I’m equally unconvinced by the current trend to put every ailment known to man down to gut issues (SIBO, flora, bacteria etc) – it just feels like the current ‘hot new thing’ in a very long line of ‘hot new things’ on which to pin disease.  My Dad excitedly kept an article out of his newspaper for me this week which touted “answer to chronic fatigue syndrome found in the gut” and, much as I love him, I just sighed.  Here’s the thing: most cases of M.E. start with some kind of viral or toxic event (OP poisoning, vaccinations) but the event is different in all of us – mine was a tummy bug, yours might have been glandular fever, someone else’s a Hep B vaccine.   If we’d all started with a tummy bug then I’d be much more open to the disturbed gut theory, but we didn’t.  The one thing we share is immune activation, so for me the answer has to lie in the immune system and in particular its response to viral or toxic trauma.  As I’ve said before, if researchers studied why people with the flu are so weak and exhausted they can barely get out of bed they’d go a long way to finding out the cause of M.E.  In fact, it gobsmacks me that no-one has looked at that before now!

No offence to my American friends, but there is a mould trend going on in the States with everyone convinced that mould is the root cause of their issues and it makes me want to chuckle.  Northern England is wet for 10 (sometimes 12) months of the year, humid in summer, we mostly live in houses which are at least 100 years old and inherently damp, so I’m sure mould is everywhere.  We couldn’t escape it if we tried.  Yet not every Brit you meet is sick and we don’t have a larger M.E. population than any other country as far as I’m aware.  Obviously rampant mould growth, where you have black stuff growing on your ceiling, is hazardous to health and must be dealt with but other than that we in the UK don’t give mould a second’s thought – it’s been around a lot longer than we have and as a species we’ve managed to survive.

I’m just as cynical about the current inflammatory trend.  Inflammation, it seems, is everywhere and is causing total havoc.  Only of course it’s almost impossible to measure inflammation or to say, if inflammation is present, why it’s there and whether it’s a good thing or a bad thing.  When we cut ourselves the wound is immediately inflamed which is a painful, but absolutely necessary, part of our body’s response and vital for healing.  And before anyone comments, yes I know there’s a difference between acute and chronic inflammation but who’s to say chronic inflammation isn’t just as protective as acute?  It’s got to be there for a reason and we’d do better to find out why our bodies are enlisting our inflammatory response, rather than blaming the inflammation itself.

Going off-topic slightly, the trend of foods purportedly giving you every disease from cancer to Alzheimer’s drives me insane.  We have no idea what causes Cancer and even less idea what causes dementia, so for anyone to say “burnt sausages give you cancer” or “broccoli reduces your risk of Alzheimer’s” is absolutely absurd and makes me furious.  In fact, I’d go as far as to say researchers who tout this nonsense should be prosecuted.  The same goes for anti-inflammatory foods.  If we have no accurate way of measuring inflammation, how do we know what foods affect it?!

There have been articles in the newspaper this year saying “exercise staves off dementia” and “lack of sleep increases risk of dementia” and I think “what a crock of shit!”  My Dad, who is 78, still walks 8 miles a week up a mountain and, as a former marathon runner, has exercised vigorously his entire life.   He’s never had insomnia and sleeps 9-10 hours a night without a problem, yet has dementia.  My Mum, on the other hand, hasn’t exercised since she was a child and wakes at least twice a night every night, yet she is totally mentally on the ball (when she’s not drunk!).  All these articles do is play on people’s emotions.  We don’t have a clue what causes Cancer or Alzheimer’s and that lack of control scares us, so we focus on what we eat or how much we exercise because those are two things we can control and it makes us feel better.

I’m no psychologist, but much of the information currently touted as being bad for our health, or good for our health, is environmental – sleep, exercise, food and living conditions.  In other words, all things we can control.  We’re extremely fearful of the fact that Alzheimer’s or Cancer might be viral, bacterial, or genetic, or even worse some novel new thing we as yet know nothing about, and therefore outside of our control.  We’re fairly arrogant us humans and think that we have power over our bodies, when in fact life is mostly just random and shit simply happens.  If keeping mentally alert staves off Alzheimer’s how come author Terry Prachett developed it in his 50s?  If the phytoestrogens found in soya stave off breast cancer how come soy munching vegetarian Linda McCartney died from the disease?  How come my Mum, a lifelong smoker, couch potato and current alcoholic, is nearly 80 and has never had cancer and her non-smoking, tea-total, bike riding sister died from it?  None of it makes sense and that’s the very thing that scares us the most.

Weekly roundup

This week has been eventful in both good and bad ways.  On Monday I took my Dad to the GP for his memory test.  Sadly he did fail some sections and he’s now been referred to the Memory Clinic for further investigation, so it looks like the GP does suspect Dementia of some kind.  I can’t even begin to process the implications of that if I’m honest.

Tuesday I woke with a stonking migraine which I had all day.  Sod’s Law when the weather was glorious.  My coldsore turned nasty and, just when it was at the scabbing over stage, I developed another one right next to it.  There’s no need for it.  Zero needy-ness!  It’s now finally drying up but still cracking and bleeding every time I speak or eat!  At  least I’ve stopped feeling quite so fluey though – I was proper rough for days.

On Wednesday I had to give a 10 minute presentation at Camera Club on my favourite pictures of this season.  I took the opportunity to educate my fellow Photographers on Ehlers-Danlos Syndrome, showing them a simulated picture of how severe floaters affect my eyesight and how frustrating this is as a photographer.  I also took along the little leaflet I’d designed and was delighted when several members took one away with them and a further few asked me all sorts of questions.

Photo of floaters in visionI had one of the nicest days of my year so far on Thursday.  My Camera Club had arranged an afternoon out at a nearby beauty spot.  The spring weather was glorious, the company was great, we had a lovely potter around and then sat outside to eat lunch.  I wish I had the energy to do things like that more often and wasn’t quite so crippled with pain afterwards.

It’s been a month now since my GP wrote to my local hospital asking them to transfer me to Newcastle for my operation and I’ve heard diddly squat.  So I chased up the local hospital only to find they’d “never received a letter from my GP” and had no idea I wanted to be transferred.  I was absolutely furious, not only that the process of being seen in Newcastle hasn’t even started yet but that a very private letter containing personal medical details has disappeared to God knows where – how is that allowed to happen?!  The consultant’s secretary said it was up to my GP to write directly to Newcastle to refer me, whereas my GP had said it wasn’t her business and it was up to my local hospital.  As a patient it shouldn’t be up to me to chase this up or sort it out FFS!

I explained how concerned I am, being as though this mass was found nearly 5 months ago and cancer is suspected.  She said cancer is not suspected and I am not being fast-tracked.  I said that’s not what the consultant said in February, when the ultrasound had shown I had a complex cyst, my CA 125 result came back at 112 when it should be under 35 and that he was bumping me up the waiting list for surgery.  She didn’t answer that and said she’d chat to the consultant that afternoon and ring me back.  Only of course she didn’t.  I have no clue what business it is of admin staff to question my diagnosis or the urgency of my care.  I rang my GP again and asked her to re-send the referral request so it’s back to waiting.  It’s just not good enough and if this cyst turns out to be something sinister I will create merry hell.

On to more positive news.  Dr Afrin, arguably the world’s leading expert on Mast Cell Activation Disorder, has written a book on the subject hurrahhh! 🙂  Available from UK Amazon and USA Amazon but currently only in hard copy.  I’ve ordered mine so will let you know what I think when I’ve read it.   He also took a seminar for Doctors on the disorder down in London a few months ago and I’m currently investigating whether a DVD or recording is available of the event.  I do wish the World Health Organisation would hurry up and formally recognise MCAD as a disease so that the NHS would at least be forced to accept its existence.  If you have MCAD you’re supposed to be monitored twice a year – I haven’t seen anyone since my diagnosis in 2013 as I simply can’t afford any more private consultations with Dr Seneviratne even if I could cope with the 600 mile eight hour journey involved.

Wednesday was the 5th anniversary of the day I adopted Bertie.  He is exceptionally hard work to look after and takes up all my money but he is also the light in my life and I can’t imagine my days without him.  As I type this he is asleep between my legs on the bed and I’m getting a crick in my neck balancing my laptop on my right thigh and trying to type at an angle 😉