It has now become necessary to keep the diary so I don’t forget even the most mundane of things.

I thought I would do my diary entry on the same day every week. This hopefully will show over time if there is any significant changes in the way both I report things, but also if I find it more difficult to do so. The point of a diary is to report anything and nothing, however trivial or insignificant. So if nothing has happened, instead of not submitting something of importance or something one does, I’ll submit a diary entry saying nothing has happened. This will give a continuous flow of information. So here we go: 

My diary day will be every Sunday. I stick, like a lot of people, to a fairly simple regular routine with only minor changes to suit particular circumstances. I hate change. So my diary starts last Monday and finishes today, Sunday. I have a small diary notebook in my jacket pocket and Margaret has a similar small diary in her handbag. We also have a large house diary always open at the week in hand. I was quite used to keeping a diary because I used to work three shifts, so that it was necessary to know when I was supposed to be at work. But that was years ago and it has now become necessary to keep the diary so I don’t forget even the most mundane of things.  

So last Monday, went to the monthly dementia meeting at the Educate group at the Meadows NHS hospital. It was packed; there were a few people I have not seen before. So that was good. Everyone introduced themselves and it was interesting to see how this disease affects different people. I was asked to help to do a quick dementia audit of the building with two other members of the group. This was to identify if the signage from the entrance to the where the meeting was  o take place was easily seen and correctly placed. I found this very very interesting. There were a few visitors that evening from other areas who had come to get ideas for setting up similar schemes. I was given my dementia diary phone and shown how to use it by Joe, one of the other diarists. All in all, a very good meeting. From there we went to do our weekly shop at Aldi and Asda then went home.  

Tuesday, Wednesday and Thursday went by with nothing to say. Friday was a very busy day. We have a small terraced house with a cellar, which recently had become a little bit of a dumping area. So we decided to clear it out. It was mainly wood from a dismantled wardrobe and an old six foot snooker table. I found this a real struggle but knew having started we must finish it. Dragging all the wood upstairs and into the car really took its toll but we did it, Margaret doing the lion’s share. We drove immediately to the tip, which luckily for us, is only a mile away and dumping it into the car from the skips was relatively easy. We got home and both collapsed exhausted and Margaret made us both a cuppa.

An audio version of this blog can be located at: https://soundcloud.com/dementia-diaries/steve-3-nottingham-uni

Little did they know it was crumpling me up inside.

After I had had my diagnosis of vascular dementia, all my family and close friends were unbelievably supportive. All were somewhat distressed and surprised at me having this condition, and they all wondered what sort of life for us was going to be like.

Would we be able to cope? Well of course we would, we told them. Everyone offered their help. However two, now exfriends, one of whom is a teacher in a college didn’t believe I had dementia and began to mock me. They would make fun of things I did, especially if I forgot something. They’d call me names and laugh or sneer. Of course they must have thought it was funny, a bit of a joke, a laugh. Little did they know, it was crumpling me up inside. Their hurtful remarks ringing in my ears for hours.  

This verbal abuse and bullying was shocking, and went on for many many weeks. My wife too was threatened verbally, saying to her there was nothing wrong with me, and couldn’t she see I was making it all up, exaggerating forgetting things.  

At home afterwards (I am nearly 70), we just used to break down crying like two kids. Why on earth were they so wicked? I just wanted to push them in the canal and stab them with a stick. Of course at that time, I had no help, no one to turn to. But I have now.  

The help came in bucket loads. We’d never told anyone about what had gone on until now, because time has passed and things have moved on. I have dozens of new friends now, all of whom are great big sticks, sticks of information, to teach morons like these how to behave towards anyone with dementia, or any other condition for that matter. But I suspect making fun of someone with cancer or some other well publicised condition would not have been so easily tolerated or really funny.

It just shows the amount of work we have to do to educate these nice people, and why on earth do they think like they do. Is it that they consider dementia nothing more than just getting old? Just being forgetful, something that is going to happen to most of us. Whatever their views are, they need to be educated, beaten ruthlessly with a stick of information, until they understand that taking the piss is just not on.

An audio version of this blog is available at: https://soundcloud.com/dementia-diaries/steve-1

On bad days it’s like living in a fog.

If you talk about metaphors, whilst it’s easy exaggerate using metaphors, I think it can be useful to give people insight into my world of living with dementia. One metaphor I use is about the fog. Which on bad days it’s like living in a fog, on good days – and there are more good days than bad – the sun shines and life is much clearer.  

The other metaphor is about the hole punch, which is where the memory and something you’re trying to do: it’s as if someone has got a hole punch and punched holes in what you’re trying to do or look at or remember. Sometimes there are few holes, sometimes there are lots, sometimes is almost entirely obscured by holes. 

The third one which people like to use is the Swan. Often people think you’re doing well – you’re  coping well, because they only see what’s on the surface like a Swan: serene and majestic on  the surface and below the surface paddling madly.  

The fourth metaphor, one which has occurred to me recently, is about mining, which might surprise people. In studying my family history it became clear that I have mining – coal mining – in my roots. I have recently thought that there is a link between my current thinking around living with dementia. This is because living with dementia is sometimes like digging a new mine and  posting pit props to support safe movement in the mine. The props are like a support I receive  which allow me to be safe and confident. Remove the props and the mine cracks. Very much  like my ability to live as well as possible.  

An audio version of this blog is available at: https://soundcloud.com/dementia-diaries/keith-3-nottingham-uni

One big psychological hit to having young onset dementia is a feeling of guilt.  

There is a psychological impact, because, as I say, often the person who’s diagnosed won’t anticipate that that’s going to be the diagnosis that they get. There's a stereotypical image that people have that dementia is just for the elderly. And then there’s the psychological impact of – if they’re a younger person – carrying on working, carrying on driving, carrying on living if you like, carrying on travelling. 

If we take each of those individual points for the moment, carrying on working is a problem, it’s also a problem for the carer, the other half, the spouse, because, or partner, because they often have got a career that they want to or need to maintain as well. And the demands placed upon them increasingly as a caring role has an impact upon their working pattern. Meaning in my case, and many other people I know who have dementia, that one is quite rapidly in many cases put out of the workforce, but the carer isn’t. And the carer needs to carry on working while still taking on an increasing caring role. So that’s another impact. And then consequent to that you feel guilty. It’s one big psychological hit to having young onset dementia: a feeling of guilt. Guilty that you’ve got this wretched disease, and all it presents to you.

Linked to that is obviously memory difficulties but also the ability to organise oneself, to even do things like cross the road. I find that very difficult now. And spatial awareness is quite difficult; it varies from day to day. I’m often bumping into people, I’m often knocking myself. I’m often needing to be restrained when I’m walking across the road because I haven’t seen the traffic coming, the brain hasn’t registered. So all those things may consequently have a big hit on your self esteem.

If you take for instance travel, I mean I am no longer able to travel on my own. So when I go to  London or when I go anywhere, I go with either Rosemary, a student supporter or a friend. That’s a big hit on your independence. I don’t mind it in one respect because it gives me  someone to talk to, and I like people’s company, but there are times when I’d like to travel on  my own, or have the right to be able to travel on my own. Because travel insurance now is such  that I can only get insurance if I’m with somebody. We’ve traveled extensively around the world  over the last 30 odd years, and now I feel that my ability to travel is much less. To the point now  where there are times when I think I won’t go on holiday again outside this country. And for someone who just a year or two months ago was thinking about going to Australia again, that’s a big knock to my self esteem, I guess.  

So it shouldn’t be underestimated, because physically I’m pretty well, and I’m active and I’m fit, and I do a bit of training each day and I’m mobile. Intellectually I’m – putting aside the challenges that dementia presents to me by way of recalling, memory, not being able to remember what I’ve read and what people have told me – but actually, fundamentally intellectually I’m potentially strong as I ever was. But there are frustrations around being able to  use that intellect, that’s the problem. And to be able to articulate myself without a script and without pre-thinking.  

An audio version of this blog can be accessed here: https://soundcloud.com/dementia-diaries/keith-2-nottingham-uni

Music keeps me mind clear and gives me a clear focus every day.

I’d just like to mention a project I’m doing, to raise funds for Alzheimer’s research. Since I’ve  been diagnosed it seems to me, music has become very -– what’s the word – it’s become very important, if you like. More important in my life than it was before, with a view to composing stuff. You know singing – and I’m recording a lot of stuff now, purely as an amateur, but it’s very, very enjoyable and it keeps my mind clear and gives me a clear focus everyday about what I enjoy doing. 

It’s been lovely in the past having everyone involved, all the other people with dementia, the carers, friends, family, enjoying it and helping out with background vocals and stuff. Members of the SURF* group were involved too. And we’ll be doing a lot more stuff together in the future, together as well, because I’m doing a little project for Alzheimer’s research, like a mini album, 6  or 7 songs, to go onto their website to raise funds for research which we all think is quite a nice  thing and enjoyable thing to do. So as we go along we’ll let you know – and sure we can send you the videos when they’re done so you can have a look at them. Okay, bye for now.

*The SURF group: The Service User Reference Forum is a group of people who represent the views of people living with dementia, carers and families across the city of Liverpool.

An audio version of Paul's blog can be found at: https://soundcloud.com/dementia-diaries/paul-3-nottingham-uni

The help that is available is tremendous in every way.

I feel weary today, as I do most days. Being tired seems to be the norm, having both knees replaced and both hips replaced, as well as having both my shoulders fixed, in the last six years. Plus, I’ve had three other operations on my spine. They all, as you can imagine, take their toll. I have asthma and COPD (chronic obstructive pulmonary disease), so I've had to come to terms with the physical side of my body being knackered, and it came as a bombshell when my brain wasn’t working as well as it should. That was a bummer, a bit devastating I can tell you.

It would have been so easy to have gone into a deep depression, as I am sure that some people feel and some people do, but I didn’t, and that was all down to my wife Margaret. Had it not been for her, who is always with me . . . she looked at the positives at what we had. Saying “Rght, nothing we can do about the diagnosis – so let’s just get on with it, let’s see what help we  can get”, which we did, together. The help that is available is tremendous in every way. There are pop-up dementia cafes all over the place, with new ones being set up frequently, and it is well worth the visit to meet people, who have the same diagnosis and have similar problems, who may give you some tips about coping with your diagnosis that perhaps you hadn’t thought of. 

Once the profession help came I was hooked. I saw the unbelievable benefit of information in tackling dementia, and that was the underlying message from all the dementia diarists. The message for newly diagnosed people is, in the words Corporal Jones, “Don’t panic! There is help. Tere is information, and there are dozens of caring people.”

An audio version of this blog can be accessed at: https://soundcloud.com/dementia-diaries/steve-4-nottingham-uni

It’s pretty hard to concentrate on things a long period of time.  

I think when you have dementia, it’s pretty hard to concentrate on things for a long period of time,  especially if you’re just sitting there, listening to people. I suppose it’s OK when we’re moving  round and we’re outside and stuff like that; it doesn’t really kick in then. But it’s if you get a  terrible lapse of concentration. And we discussed this at the SURF group*, because we’re doing  lots of things with medical students and nurses from all the major hospitals.

At the last one, a guy talked for about forty minutes and half of us were sleeping. I had to make my  excuses and go the toilet because I just didn’t know what he was going on about. I’d lost the first  fifteen minutes in the midst of time somewhere. So we agreed to just have short sessions now,  of not more than fifteen minutes. We can all have a piece of paper with one to twenty, and we  can . . . And after the fifteen minutes, we can . . . We can write questions down as we go along  within those fifteen minutes. And then we’ll have a short question and answer time afterwards.  And then we’ll carry on then, you know, possibly on the same subject, or a different theme, or  another subject.  

So we believe that’s the way forward: just short versions helps. And I noticed over  the last few months when I’ve been to conventions, particularly the one in Birmingham. I  couldn’t barely concentrate, and I left that one. I left about ten minutes in. It was just too much  work, I think. We’ll have to try and get the message across to people who are speaking just to  keep it very, very short and sweet, and that it’ll help our memories along that way, to remember,  you know, what’s happened in a short space of time. Hopefully. 

*The SURF group: The Service User Reference Forum is a group of people who represent the views of people living with dementia, carers and families across the city of Liverpool.

An audio version of Paul's blog is available at: https://soundcloud.com/dementia-diaries/paul-4-nottingham-uni  

We are still the same people. 

I went to the supermarket with my girlfriend just to get some bits and bobs. I just walking down the aisle, coming to the other way was this guy I know from way back: he used to work for me way back. He just kind of looked the other way and shuffled off, quick, as though he never knew me.  

I think the old stigma hit home again. I don’t think he wanted to talk to me, or maybe didn’t know how to approach me, or was maybe a little bit frightened. I don’t know, but sometimes it just hurts a little bit when you think about the past and how you get along with people, and then suddenly because you’re diagnosed with this thing called 'dementia', in some shape or form you become an alien. I really do think it needs to be opened up, this thing. Again to harp on about things . . . Just to let people know that you are still the same, come what may and all the rest of it.  

We are still the same people.  

I couldn’t be bothered to tell him that, should be intelligent enough to know that anyway, but apparently he wasn’t. Anyway, another one bites the dust.  

An audio file of this blog is available at: https://soundcloud.com/dementia-diaries/paul-2-nottingham-uni

All of the normal triggers for Alzheimer’s don’t apply to my case.

Earlier I reported back on my thoughts on an article which appeared in The Eye, April 2015. It  revolved around a piece of work currently undertaken at Duke University in North Carolina,  which examined new ground being broken in trying to find a cure for Alzheimer’s, by way of finding a potential cause, which could be along the lines of infections which have affected the brain.

What I now wanted to do is to talk a little bit about my own personal experience. I was  diagnosed at the age of 54 with dementia, and the form of dementia which I have is Alzheimer’s.  Now all of the normal triggers if you like for Alzheimer’s don’t apply to my case. I was only 54 so  age which is the biggest risk factor wasn’t the reason why I have it. Secondly my diet is very  good, I don’t drink very much, I don’t smoke, I keep reasonably fit, both mentally and physically.  I did do a reasonably stressful job by way of a head teacher and a primary school advisor, but I  seem to thrive on the stress, so I don’t think that was a terribly big factor in my onset of  Alzheimer’s.  

What I did have, for a period of about two or three years prior to diagnosis, was a series of  infections which affected various parts of my body – waterworks, nasal area, sinuses, thyroid  was up the creek. And generally speaking I went through a period of being not terribly well, but  still planning on working most of the time. I did have an operation on my sinuses, which  seemed, on the surface, to have maybe helped. And we wondered, Rosemary and I, my wife, wondered, if maybe the infections which affected my head had possibly affected my brain as  well. And that possibly my story links into that of those who are being studied within this piece of  work. 

For so long the researchers have gone up the certain avenue along amyloid entangles and  plaques, but now maybe this is going to open up a new door which will help people coming  through and those of us who perhaps have developed Alzheimer’s through this route. 

An audi version of this blog is available at: https://soundcloud.com/dementia-diaries/keith-1-nottingham-uni

I’ve been thinking about my lovely dad, about him sitting there at home with his little dog, and worrying that he might be lonely. Perhaps it’s because I’ve been experiencing a low period myself – in fact, a period of quite severe depression – but I know he loves company, and that without his Westie he’d be quite lost.

It’s hard not to project our own feelings and concerns onto the lives of others. When you’re caring for someone, and trying to support them, it’s hard to leave behind your own thoughts and to really listen to what they’re wishing for themselves. For my dad, that’s clearly to live independently at home for as long as he is able. ‘I don’t want to move’ is a mantra for him if you talk to him about future options – about exploring the possibilities that would be available should he no longer be able to live safely at home.

Now days, dad simply moves through each day trusting that what has always happened will continue to happen. That, on the day of his Probus Club, someone will turn up to give him a lift. That, when his 41 Club have a posh Christmas dinner, someone will sort out the payment and the menu choices and a means for him to get there. He no longer does these things for himself, but he does not remember this. We make wonderful diary secretaries, me and my sisters!

There are many things that dad no longer does. He will open letters but he no longer replies to them. He forgets they’ve arrived, and when I visit I may or may not find them and have to troubleshoot the consequences of his lack of response. Thus he misses medical appointments or bills go unpaid. Much of his mail now comes to me, or my sisters have to deal with things by email (they both live abroad). He no longer remembers if he’s fed the dog, though fortunately she makes her needs known if she’s hungry. He no longer changes his clothes for fresh ones or eats vegetables or puts the bin out or makes me a cup of tea when he does one for himself.

We worry about dad. We know that he gets disorientated and that sometimes he leaves the door open when he goes out, but we also know that he is happy living where he is with his familiar things around him. He is totally reliant on the care package we have set up – on the carers who come and go, who take him shopping, and do his washing, who help prepare and heat his meals. Over time some of them have become his secondary social life – the people he relies on because they are familiar faces and part of his routine. They alleviate the loneliness he feels.

In many ways dad is on borrowed time living at home. His poor eyesight increases the chance of accidents and falls, and his dementia puts him at risk of fraud and means he can no longer perform everyday tasks or remember people’s names. He is like a child – happy unless you try to change his routine or tell him what he should do. But, as those with experience of dementia know, caring is also about allowing and managing a certain level of risk in order to maximize a loved one’s freedom and independence. If dad takes the dog for a walk he risks not being fully aware of the traffic or finding his way home easily, but he has his faithful companion and it helps his mobility and circulation, too.

I know dad sometimes gets lonely, because he’s told me. But he’s living the life he wants to lead and I have to step back from my own feelings and let him get on with it. If it were me, I’d no doubt feel the same – and I’d no doubt be just as single-minded in trying to maintain the lifestyle I loved.