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.