Beddy bye byes

Hi all,

So, call me stupid, but after not sleeping properly for pretty much all of my life I have now realised I have a sleep problem. I am always reluctant to say I have something when I don't. For example, I have NEVER said I have had depression, because the 'depression' I have had in the past is nothing compared to what chronic depression sufferers go through. It's the same reason I've never called myself an insomniac. I know I don't sleep enough, a legacy of years of anxiety (which I have had, of course), but I never considered that I qualified as sleeping badly enough to be diagnosed as an insomniac.

Vancouver - scroll down for the relevance

However, after several terrible nights recently, and generally a summer where I've slept badly throughout, I thought I'd read more on the subject. The very useful NHS Choices webpages helped me realise within about two minutes that yes, indeed, I do actually have insomnia. A combination of the nonsense I put myself through when in bed and how long I've not slept properly for (i.e. ever) = insomnia. And yet, I have never teared off any tights with my teeth (a line for any Faithless fans out there).

This recent bout of bad sleep has coincided with a particularly and unusually busy (verging on chaotic) period of my life, perhaps unsurprisingly, and has made it more difficult for me to cope with. Hence why I have looked into it more.

To give you a fairly typical night:
I go to bed at 10.
Asleep at 10:30
Awake at 3.30
Awake until 5.45
DREAM DREAM DREAM DREAM (literally, like 4 in half an hour)
Alarm goes off at 6.15
Wished I hadn't fallen back asleep again.

Other scenarios:
Asleep at 10:30
Wake up at 4.30 on a Sunday

Out socialising until 1am (very rare)
Still wake up at 4.30. Maybe 5 as a reward.

I go to bed at 10.
Awake until 1.
Still wake up at 5.

You get the idea. The latter is less typical and in my opinion is the worst scenario, but has been an issue recently. At least if I get to sleep quickly I've banked a few hours.

But, because I've been getting at least some sleep (usually), I have never considered myself to be an insomniac. But apparently, I don't need a weatherman to tell me when it's peeing down - according to credible sources, I am indeed an insomniac.  A basic assessment set up by Sleepio, an organisation I am just learning more about, asks a few questions a gives you a score out of 32. I scored 10 with the message basically pertaining to 'you have problems.' 

So the question is, what to do about it. You know my stance on medication, and gladly the same credible sources don't commend this unless as a last resort. There are lifestyle changes I could make, although many of the suggestions they provide I've already done over the years. I wear ear plugs, I have blackouts, my bed is comfy, I eat my meal quite early, etc. I can start by doing a few more, like not write blogs about lack of sleep an hour or so before bed (8:43pm at the time of typing). 

I am considering CBT-I, which having put a link into this sentence I now know as much about as you, if you've clicked on it. Whether there is a charity like Anxiety UK out there through which you can obtain CBT-I I'd be interested to know, for fear of the NHS waiting lists. Sleepio, as mentioned, is another potential. 

But at least now I can finally do something about this. Having an unofficial but nevertheless pretty reliable diagnosis helps, so I can at least admit I need to sort it. I will keep you posted on progress. I perhaps naively assumed my sleep would improve as my anxiety lessened, but alas, not the case. My sleep is still erratic and unreliable, at best, and I continue to have problems. 

I mean, it's a good job I'm not going anywhere in the near future where there is a long jet lag period, isn't it?

So in 11 days time, I fly to the west coast of Canada. This is the first time I have been anywhere where the time difference has been greater than 1 hour, and only the second time I have been somewhere outside of the UK and Ireland. So I thought why not, let's go for half way round the other side of the world. Start small, you know.

I have always wanted to go to Canada. Well, I say that, I didn't really want to go anywhere for most of my life due to crippling anxiety, but you get the point. Canada appeals; it's liberalism, it's scenery, it's environment and it's people all seem to be my sort of thing, much more than here. I never thought it would happen. But now it is.

I am going with my good friend of 15 years who will be with me every step of the way - quite literally, as he is a musician and he's touring. So yes, I am effectively a roadie for 11 nights. But what this has meant is that he has basically done all of the logistical organising, all I have to do is pay half, pack and turn up. The latter may be the hardest part. But at least, with him doing all that, I can focus my mind on getting myself right and in a fit shape. 

The magnitude of this trip for me is beyond comprehension, quite frankly, which may actually be a good thing as I have no idea what I'm letting myself in for. The nine hour flight, the airports, the being so far away from home thing... oh hang on, maybe I do. 

You will no doubt recall that I went to Edinburgh in February and Ireland in May, both on my own, and both as a sort of preparation to this tumultuous trip. I passed both Edinburgh and Ireland - yes, there were some hairy moments, but compared to what would have happened say 3+ years ago, I passed them both with flying colours, and actually managed to enjoy myself for the most part. 

But this. This is something else entirely. I'm not physically on my own, that's a good start. But I am very much on my own mentally and I know how much this trip is going to take me out of my comfort zone. Let me emphasise, let me embolden what this blogging site is all about - I am a chronic anxiety sufferer. Not was, am. Yes, the last couple of years have been plain sailing when compared to the previous 28, but the underlying nature of such a condition will never go. It will always be with me, it's just whether I can keep it pushed down far enough that I get through big events. So far so good. But this event is the biggest of all.

Then there's the jet lag issue. Bearing in mind the first part of this blog, this could either kill me or cure me, sleep wise. And of course, everyone reading this will know and appreciate that the better you sleep, the better your mental health. Needless to say, the worse your mental health, the worse you're likely to sleep, and so on. So how this aspect goes will have implications both for the trip itself and afterwards. The bit I particularly worry about is losing eight hours on the way back. I'm one for getting back into the swing of things immediately; this simply isn't going to happen this time.

All this is going on whilst loads of other things are happening too. Work has been particularly busy recently, doing 9-10 hour days instead of the 7.5 I'm paid for. My social life has been unusually active and not only that, I am currently courting a lovely lady. Yes I know, hell, frozen, all that. Add all that into the mix along with the on-going situation with my mum and you get... well a lack of sleep. And thus, we've gone full circle.

Canada, without question, is going to be the biggest test of my entire life, bar none and by a country mile. Forget Ireland, forget Edinburgh, forget Wales with my mate, forget eating out, forget leaving the house when I practically had agoraphobia in 2011... this is the next level and some. And when combined with all of those other things I've just listed, the implications of what happens on this trip and how I deal with it could be massive.

Readers - I'm likely to need you for moral support in the coming weeks and months. So please bear with me. 

Best wishes,
Al

Dementia: What I have learnt so far

Hi all,

It wasn't all that long ago that my mum was diagnosed with Alzheimer's disease at the age of 67. I blogged about this when it first came to light that something was clearly wrong and the official diagnosis was provided in May.  Since then, it has been a case of learning to adapt and react, with opportunities to be proactive rather infrequent.

You'll be delighted to know that there are
equivalent images for dementia like the
'head in hands' images used to depict depression

To summarise the situation; my mum and my dad live together and there is no other family within a 60 mile radius. Even if there were, they are not in a position to help anyway due to their own issues. My parents do have friends locally who can help and be that social support, but striking a balance between this and exploitation is a difficult one to manage; I think my dad has done a good job at this so far. I work five days a week and so my role is to be with my mum one day each weekend to give my dad some respite, but also to provide my dad with on-going support remotely.  He is a 1950's born father, i.e., one who is stubborn, lacks external emotion and thinks he can do everything himself without needing support. So this has been a challenge in itself!

What I have learnt so far has been very, very important. I have not been with my parents when they have had appointments with specialists (despite me wanting to be) so I have never been given any advice directly about what I should do with regards to this individual case.  Everything I have learnt I've had to learn for myself and, often, then translate this across to my dad. It's more important he gets the benefit of what I've learnt than me, given he is with my mum seven days a week.

All of this, of course, should be considered with the backdrop of anxiety - the whole purpose of this website. Despite my anxiety now generally being under control, its legacy lives on and it also remains under the surface, lingering, waiting for something to bring it to the top. Something like coping with the pressure of helping a family member with Alzheimer's. I have kept it under control for now albeit with a few hairy moments; my concern will be later on down the line when things deteriorate further.

So what have I learnt so far?

1) It takes no prisoners
The main problem that we have faced so far is that my mum has gone through phases where she doesn't really know who my dad is. When she talks to me about events that have happened during the week, she uses the term 'they' when describing who she was with; when they have disagreed about something, my mum has said things like 'I'm not sure who he is, but we obviously don't like one another.' She also gets confused about things like how she will get somewhere, even though my dad has driven her there for years and years. The most striking example was when she asked me who helped me with something, and I said 'my dad' and she asked 'by 'your dad,' who do you mean?' And yet, she seems to be able to tolerate his presence in the house all the time - she's not frightened by him and doesn't directly question who he is. It is utterly bizarre - but then, that's Alzheimer's for you.  Unfortunately, it is unforgiving. It is often the closest person(s) to the person with the condition that suffer the most, not just because they are looking after them and dealing with their needs, but also because they are the people that get muddled up in the person with dementia's mind before anyone else. My mum has seemed to understand that my dad is there for a reason, but doesn't seem to realise that he's my dad. My concern is that this is going to get worse and worse, to a point where she won't want to be in his presence at all. However, some chinks of light have recently appeared (see concluding paragraphs).

2) Photos are incredibly powerful
I'd read that showing a person with dementia photographs of the past can be very powerful in stirring up important memories. I told my dad this and pleasingly he took my advice and went through some of the myriad of old photo albums that my parents have. Voila, the following weekend my mum actually called my dad 'Dave' (his name, thankfully) on several occasions and referred to him as my father a couple of times too. This, I can only assume, was all due to the fact that he showed her photos of both of them together years ago, and with me as a baby. I have coined these our secret weapon for future use. It may seem obvious to show photos, but I probably wouldn't have considered it had it not been for...

3) Read the literature
There is a lorry load of literature available for carers on dementia and techniques to use to help them and yourself. The photos idea was one of the scores of ideas that I suggested. Most of this literature comes from the incredibly helpful guidance from the Alzheimer's Society who do a wonderful job at providing support. They have written guidance on just about everything and these, along with guidance from other websites such as NHS Choices, has given me so much information to help. Almost too much, actually, and as such I produced a two-side document summary of all of the information that is most relevant to our situation which I intend on using as my go-to guide when I need help with anything.

4) Medication helps
About 3-4 weeks ago, the specialist increased the strength of medication my mum was on (don't ask me what it was called because I can't remember!). Now, any regular readers of my blog will know that I am largely against medication, especially long-term, for many mental health conditions and medication should only be taken when in conjunction with therapy and/or for a short time. But Alzheimer's and wider dementia related illnesses, to me, are different 'sorts' of mental health conditions to say anxiety or depression, so my opinion on medication to help alleviate the symptoms was totally open before all of this started. My opinion now is that it can certainly help, if nothing else to make the person less anxious and more rational. The recent (I presume) short-term improvement in my mum was certainly in part due to the photos (see above) but also coincided with the increase of the medication strength.  She seems a lot brighter and generally a bit less confused that she had been for several weeks if not months prior. So I hope this continues for a while yet! The literature indeed states that medication generally 'temporarily alleviates symptoms' which is what it has done - the burning question is, how long for?

5) Music matters
One of my main challenges when I see my mum on a weekend is how to keep her occupied. Walking is a no-brainer (see below) and when it's footy season that's another good one - my mum, fortunately enough for me, likes watching football. But what else? What do I fill the gaps up with? One answer is music. She can remember lyrics to songs almost verbatim in some cases and knows a lot of tracks from the 60s, 70s and 80s (and even 00s dance tracks after my brainwashing during this era...). So on a few occasions now we have basically sat together and I have either put on one of the many music channels provided by Sky, or put on a playlist of tracks that I have put together from those eras. I bought a load of compilation albums from Amazon and i-Tunes and put them onto a memory stick which I now keep with me when I see her in case music seems to be a good option. The result is she enjoys it, can sing along and we can have a laugh about it. Simple but effective.

6) Physical activity is fundamental
Much of the literature I have read states clearly that exercising can help people with dementia (and an also help to prevent it in the first place). Luckily, my mum has always enjoyed walking and I always ensure when I see her that we go for a walk. We're also lucky in that my parents live close to some great rural walks through fields, onto Cannock Chase and along canal towpaths, so I always make sure we do one of these when I see her. She enjoys it, it gets her fresh air and exercise and gives me exercise too. It's also a good opportunity for her to chat about things to someone she hasn't seen for a week, i.e. me.

7) Don't do everything for her
I hate ironing. The good news is that my mum doesn't and she is much faster than me too. So when I visit, I take shirts that I need ironing with me. No, this is not because I'm lazy*, but because it is important that a person with dementia feels useful and needed. Her doing the ironing for me gives her a purpose and, moreover, it saves me doing a task that I hate! This is one example of many.  Another example is that my old room needs clearing out at my parents house and when I do this I will get my mum to help me. Not because I have to, but because she'll find herself useful.  I've been trying to tell my dad about this and I think he's finally getting the idea!

*I am also lazy when it comes to ironing...

8) Be the same person
Talking to my mum like I always have has, at times, been difficult. Trying not to finish sentences or remember things for her or put words in her mouth. Trying not to do things for her because it's easier (see 7). But I have learnt that it is hugely important to be the same person around her. React in the same way. Do the same things and laugh at the same things. Talk about the same things. Don't treat her with kid gloves. I thoroughly appreciate that there will come a time where this will become increasingly difficult as the condition 'progresses' (hate using such a positive term to describe it), but whilst she can still do things and talk about things, I need to make sure I am the same person I always have been - otherwise she'll know something isn't quite right.

9) Look after yourself
The realities of taking care of someone with Alzheimer's has started, but both me and my dad have only just scratched the surface so far. It WILL get far harder both emotionally and physically as she deteriorates, whenever that happens significantly. The later stages of Alzheimer's are horrible to read about and I can only imagine what they are like to see them in reality - but that will happen, eventually. So it's important that me and especially my dad look after ourselves as much as possible and don't neglect our own needs. We can do some of this now, even if it doesn't really need to be done yet, in advance and prepare to what may happen a few months or years down the line. For me, this may be reducing my working hours to free up more time to help my parents but also more time to live my own life; the latter is vital, of course, not least for me so that I don't become an anxious mess and become useless to everyone.

To finish on some good news. After going through a difficult couple of months where my mum was really confused and where the biggest problem was her not knowing who my dad was, we have come out of the other side of this (thanks to many of the interventions above, especially medication) and her case worker (if that's adequate terminology) has said she shouldn't need to see her now for a year, so that's great news. She obviously has difficult days and goes through challenging spells, but if she can remain at this level for as long as possible that would be ideal - she still has a reasonable quality of life at the moment, as indeed does my dad. They can still enjoy things and appreciate things.

But I suppose the main thing I've learnt is that it is unforgiving. It can happen to anyone and is increasingly affecting more people as our population gets older. As always, our services aren't prepared to cope with this change.  Moreover, there are so many suggestions for things that one can do to try and minimise the dementia risk - what do you believe? Do any of them help? My mum didn't smoke, she always gets plenty of exercise and did a crossword everyday, so what gives her being diagnosed at 67? 

The good news is that thanks yet again to our wonderful charities, we can get support for every step of our journey. A journey which, for us, will inevitably get harder both emotionally and practically - but one that I am ready to tackle. As, after all, I would do anything to support my mum.

Best wishes,
Al

PS - Four weeks until I go to Canada... what the hell? Blogs to come (you'll be delighted to know...)