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...)

Dementia - we're all failing

Hi all,

I arrived at my parents' house as usual last weekend to my mum in tears. She was upset due to her feeling low all the time, depressed (I mean that in the actual, not casual sense of the word) and frustrated with forgetting everything. Can anyone really blame her? She has been one of the millions of people unfortunate enough to get this truly despicable disease which takes away the foundations of families and pieces of the recipients soul, bit by bit, until they can function no more. She has every right to be upset and depressed about her life. Sure, she still gets out and about with her friends, my dad and me every now and then but the next day she can't remember doing it. Every day is a blur, a struggle and hard work, underpinned by a numbness of feeling and emotion. 

I didn't feel a related image was suitable, so here is a photo
from my recent trip to the beautiful Bergen, Norway

My dad is doing his best make her life as comfortable and worthwhile as possible. Is he doing everything that I would hope he would do, saying things he should in the right way all the time? No, I don't believe so, but he's had to learn and adapt to a tragedy, ultimately, and try and put emotion aside to provide that functionality that my mum can no longer initiate. 

And let's not forget the backdrop that I've explained in previous blogs - my dad is the full-time carer, I support at weekends and then there are friends in the local area who frankly have gone above and beyond the call of duty, for example by being with mum when my dad needs to go out, or to give him a break. We have no other family who can help. Our support network is far too small for it to be fair on my dad to keep this level of support up, whether he believes this is true or not.

Mum was diagnosed in May 2017 with Alzheimer's. The signs were there at least a year before this. So we're talking two or so years of quite rapid decline. And yet, since the diagnosis and despite the backdrop just outlined, the level of support received from the professionals who are supposed to be leading on my mum's case, for want of a better phrase, have not stepped up. The support we're receiving is next to non-existent. 

Is the protocol to wait until my dad spirals into oblivion or my mum gets too difficult to care for, before stepping in? Reactive rather than proactive - like society in general?

I blamed my dad for this lack of support at first. He is from the 'I am right about everything' right-wing, stubborn 1950s-born generation where no help is required to move him along in life. His pro-activity, apart from when it comes to financial planning and money, is very poor and he has refused to seek help several months after he should have on each occasion so far, in relation to supporting my mum. Its understandable, of course, to have an element of denial in this situation, an element of 'everything will end up fine.' I mean, how dare anything as horrible as dementia break his bubble of perceived perfectionism? 

Mum's diagnosis itself should have come six months earlier than it did, delayed only because my dad put all his eggs in the 'hope everything will be okay' basket.

But it transpires that the support workers we're dealing with have never come across a situation of a carer with a lack of support and a modicum of denial. Or at least, that's what you'd think. Their pro-activity, in terms of checking how things are going or what extra support is needed, has been slow and then when promises have been made, nothing happens. 

In recent weeks even my dad has realised that seeking help is a necessity for both the sake of his and my mum's happiness. The support workers, in their defence, suggested he attend a local carer's group so that he can share his experiences with other carers of dementia patients and gain peer-to-peer advice. To my surprise and delight, my dad was up for this and I urged him to call back the support worker and say yes, do it. He has tried, on several occasions, to do so and to initiate it - and has yet to have any joy. They can't be reached. Their phone always seems to be off. 

The support worker also suggested some local groups for dementia patients and carers to go to; there are a few around where they live. However, they don't help my dad to broker discussions, it was literally just 'here are some pamphlets, now go knock yourself out.' No guidance on which group may be best or how to encourage my mum to go if she is reluctant (and she will be). My dad has got to learn all this for himself, a person who - and this is the most tragic bit of all - my mum barely trusts and doesn't recognise anymore, most of the time. He is currently looking into a private group for my mum to join on a weekly basis (at a cost), but is understandably scared of brokering the discussion with my mum for fear she will reject the idea outright and then trust him even less.

And needless to say the request to get someone to come and visit mum on at least a fortnightly basis to both provide respite for my dad and monitor my mum's progress fell on deaf ears. 

And the "care plan" that was drawn up and presented to my dad was a complete waste of a tree - all it did was put down on paper the meetings they had already had with the care worker. That's jolly helpful.

I sadly conclude that we are another victim of the NHS' chaotic administration alongside there being not enough time for staff to actually do their job, i.e. provide support. Too many forms to fill in, which then get filed under 'oops, wrong file.' 

That, combined with our not unique, but perhaps unusual situation. A person with dementia who isn't living alone, who are rightly prioritised by the services, but also one who doesn't have a large family network, rendering the need for service intervention less important. We're in the 'err, don't know what to do with you' in-between bit.

And so all that happens is that no support is forthcoming and things stay the same. Except that they don't stay the same. My mum's condition worsens and my dad's tolerance to difficulty gradually and understandably erodes. On top of which, the friends that they rely on are ageing and through no fault of their own are and will become less able to support.

All of which is directly in proportion with my guilt and anxiety rising. Guilt for not doing more. Anxiety rearing its head every time I visit my mum. I am becoming gradually less able to be a useful ally during the times I am with her, as I have to increasingly make sure I look after my own wellbeing. Me with anxiety - the whole foundation on which The Anxiety Tracker is based - is not only no help to my mum, but indeed a hindrance. I can't allow that to happen.

So where to next? I can only see the charity route helping. I have signposted my dad to the Alzheimer's Society several times already, encouraging him to call them and outline in detail the issues I raise here. He has yet to do so, and my fear is, going back to the start of this blog, that he won't until way after he should have. Does tragedy have to strike before he takes action? Should I take action myself behind my dad's back? Not an option I want to take, but it may come to this very soon if the services don't step up.

I can't help but put the blame on the services for not giving us an element of coordination, structure, guidance and support. Is this the result of a failing system? I'm not qualified enough to decide, and more to the point getting angry or blaming people isn't going to help anyway, but it certainly feels like we're being neglected. 

My previous two blogs on the subject of dementia were entitled 'what I have learnt so far.' Let me answer that question in simple terms - dementia is the devil that destroys lives. End of.

Best wishes,
Al

PS - Talking of the Alzheimer's Society, me and a friend are walking 26 miles on 1 September for the charity around Stonehenge. It's small fry of course but still feels like a small contribution, at least. If you'd like to support us, you can do here. Thank you.

Relationships: what I've learnt so far

Hi all,

The summary answer to this blog is "I'm crap at them." We could just leave it at that.

Whadda you know, there are stereotypical images for
everything!

Let me paint the scene first of all. As you will no doubt know if you're reading this post and have been reading this blog for a while, I have lived for many years with anxiety. It wrecked my growing up period and my transition into adulthood, to the point where I fully recognise that I am further behind most people my age in several ways, one of which is being - or not - in a long-term relationship. Yes I have liked people during this epoch of anxiety but even if I had had the confidence, courage and ability to act upon these feelings - which I didn't - and even if they had said yes to a date - which they wouldn't have - there is no way on earth that I could have sustained a relationship for any length of time. I spent years unable to eat out or socialise with the people I'm most comfortable with, let alone go on a date. So making a long-term connection last was nigh-on impossible.

And although now, at 30 years old, I have put the worst my anxiety behind me, there is a legacy it leaves. My confidence when it comes to talking to someone I like is still appalling; I come across as shy, dull and uneasy. Various practical things that most British UK citizens do come 30 years old I perhaps do not (driving is a good example) thanks to an inability back in the day and a long-term nervous association ever since. And then there are circumstances less outside my control; I live in a town where 95% of people thrive and live off materialism, possession and practical ability. In other words, if someone does not have or cannot do something which is perceived 'abnormal,' like drive, this can be a deal-breaker as to whether a person wants to build a relationship with them or not. Personally I think that's nonsense, but it is what it is.

So the fact that I have even been in a relationship for any length of time, which went from 4 August until last Saturday to be precise, is a minor miracle. Who would take so much as an interest in me, let alone stay with me for over three months? Well this particular lady did and for the majority of the time she seemed to be really interested in me; we got on well, went out quite often and enjoyed each others company. However, whenever I tried to move the relationship forward (I don't just mean physically) I was hit by barriers and it was becoming increasingly difficult to feel comfortable. I felt like I was the only one making the effort to progress, trying to strike the balance between this and not pressuring her. Nevertheless, I was accused of not being spontaneous, which I was confused about because I was trying to progress things and make them more 'interesting,' albeit it is true that me and the word 'spontaneous' don't tend to go together. I blame that on anxiety too.

It then came out that there were several aspects of my life she wasn't happy with, basically; she was nice about it but it was clear that many issues sat uncomfortably with her. The driving thing was one and the on-going situation with my mum was another. I was basically being judged for not driving and having a routine where I needed to see my mum and support her and my dad with her dementia. There may have been more to it too, but they are the only things that I got, in a round about way, confirmed.

The main thing that annoyed me was that I was very open with her very early on about what I have to offer. She found out on date two that I don't drive, date three about my mum and on date four I gave her an overview of the dreaded anxiety and how it has affected my life. I felt comfortable enough with her at that point to be totally honest with her about the fact things haven't been plain sailing and she seemed totally fine with that. After all, she kept seeing me and I was told that I was a 'keeper.' So it was very annoying that she used these things against me as a reason to break up with me, which she did, by the way, finally by text.

Now as I've said, there may have been more to it, reasons that I will never know, and although it sounds like I'm having a go at her (well yes, that's because I am), I am totally sure that my lack of experience was against me and that I could have handled things differently. I'm not too sure how, but I'm sure I could have. So I'm sure we were both to blame by the break up and, although she did it via text, breaking up was clearly the right thing to do as she didn't feel she could make a relationship work with me, so that's fair enough. In the end it was probably just as simple as it being a personality clash which took a while to become clear.

As I have blogged about before, I met this girl online. That is the only way I'm ever going to meet someone; my town is like a vacuum for single girls and even if I did meet someone unexpectedly I wouldn't have the confidence to do anything. At least with the online thing you know that the person you're going to be meeting actually wants you to be there and, you'd hope, for similar reasons.

The bad thing about the online thing is that, in my opinion, it encourages relationships that are based even more on materialism than real life. Real life itself is bad enough, but ultimately what do people look at when they first see someone online? Their physical appearance. Then what they do for a living and then their practical ability and associated stuff. That usually marks pass/fail. I'm not bothered about what a girl is into, within reason, or what they can/can't do. I'm looking for someone who I feel totally comfortable with, who is compassionate, kind, honest, reliable, trustworthy. I thought this was commonplace, and all the noise around the edges - like being or not being able to drive - was unimportant in the grand scheme. But so far I have not experienced this. Maybe I am living in the 1920s or something?

Then there's the laying your cards down on the table thing. I was honest with my girlfriend very early on, as I mentioned, about my history and other key things. The only thing I didn't mention was this blog site!! She wasn't forthcoming in reciprocating any major 'traumas' from her life, so perhaps she didn't have any, but after what happened how can I be sure that honesty is the best policy? If I want to form a relationship, if I do not want a lonely future, how do I get there when no-one will see past the noise? Yes I have baggage and no I'm not necessarily what would be perceived as a 'normal' 30 year old in that sense and I'm far away from perfect (whatever that is), but I tell you what, I would sure as hell work damn hard to make a relationship work, to make my partner happy, comfortable and feel special. I know no other way.

But that doesn't seem to be enough.

But I know, really, that I have to keep being honest. So much so, that since last weekend's break up I have been even more explicit on my online profile. Well, about the not driving thing at least. I haven't yet put 'I suffered with anxiety for most of my life and my mum has dementia.' Re the former, check out my previous blog; if I did put something about anxiety, I'd get nowhere thanks to stigma.

So what have I learnt? Not much that I didn't already know, unfortunately. Most of it has just reinforced my original thinking. The key thing I've discovered is that I was right all along about me not knowing what I'm doing, about the materialism thing and about girls not wanting a bar of me given my 'baggage' and history. I guess I've also learnt that I wouldn't want to be with someone who is bothered about these sorts of things anyway; the problem is, where do I find the right person for me? And how do I find out, for certain, whether I'm doing something fundamentally wrong, or not?

I don't regret the relationship, that I will say with utmost honesty. No it didn't work out, but at least I was able to sustain it for over three months - which would have been impossible even only a couple of years ago or more. It shows again how much progress I have made.

What I would say to anyone who is in a happy, comfortable relationship - please, please do not take it for granted. Contrary to popular belief as a 30 year old in my home town, it does not happen for everyone.

And for me it's back to the drawing board. There will be someone out there for me, I believe, but it's whether I ever find them or not. If you are that person let me know - I'll be on the next bus to meet you.

Best wishes,
Al

Dementia: What I have learnt so far II

Hi all,

A few of you may have noticed my reach out tweets around the Christmas period. It was a difficult time; gone are the days when going to my parents' house for a few days over the festive period was one of the most relaxing times of the year. The period 22-27 December this year was very hard, because of my mum's worsening health.

The world's easiest jigsaw puzzle

I could answer the question posed in the title of this blog simply by saying 'it's a horrible, despicable disease that can savage and ruin lives.' It wouldn't be far off the mark. But then that isn't particularly insightful and everyone already knows that.

I will explain the situation as it stands with us at the moment, which is underpinned by the following timeline:

• Spring 2016 - noticed things with my mum weren't quite right
• December 2016 - first time it was clear Alzheimer's was likely
• January 2017 - had first appointment with GP and various referrals
• May 2017 - Alzheimer's disease diagnosed, prescribed medication
• May-Sept 2017 - significant improvement in her condition
• Sept 2017-present - significant decline in her condition

In version one of this blog, I briefly mentioned our situation in terms of our support network, or indeed a lack of it. My dad is with her everyday. I support for half a day every weekend so my dad can play golf. And that is it. Yes, they have friends who live in the area who they do things with - go round for a coffee, go for a walk etc - but ultimately, they cannot be expected to help deal with the most challenging aspects of this messed up disease. There are no other family members who can support.

So this is a particular problem when my mum has quite a lot of hostility towards my dad. She doesn't really know him as her husband or my father and often speaks about him as 'this bloke' or 'they' in many cases - it's often as though the person she went for a walk with on day one is different to the person she ate dinner with on day two - even though they are both my dad. She is also now feeling somewhat stifled - she told me last weekend that she isn't happy that everything is decided for her and sometimes she needs her own space. The problem is, she can't do general tasks that easily now and things have to be done for her. It's so hard listening to this, especially when she feels no love for her husband because she doesn't recognise him as him.

When I stayed there for four nights around Christmas, sometimes - but not all the time - my mum looked at me in what, for me, was a frightening way when my dad walked into the room. A look that was like 'who is this person that's coming in as if he owns the place.'

She also had - and has been having several of, according to my dad - a particularly bad spell on Christmas night. Basically she didn't know where she was and kept saying she'd be fine 'when she got home.' Of course, she was already home. Apparently this has happened a few times and she gets totally and utterly confused with pretty much everything. It first happened about a year ago, but then went away until recently. Usually what happens when she feels like this is my dad takes her to bed; he has to show her where her room is.

It must be horrible for both of them to have to deal with episodes like this day in, day out and clearly the situation is not sustainable.

I have been (trying to be) the voice of reason since my mum's diagnosis. I made the suggestion a couple of months ago when it was clear she was declining that my dad should make another appointment with her support worker. I thought I'd have to push him to do this, but he did it after my suggesting it only once, which I was pleased about. Said appointment is on 16th of this month and it cannot come soon enough.

At this appointment, I expect at least an insinuation that the unsustainable situation I mention above is going to be seriously looked at, with reasonably immediate effect, probably in the form of a care plan. I am probably being very naive - we all know what pressure the NHS is under - but we should file for the equivalent of extenuating circumstances. If my mum was lucid about my dad, yes my dad would still have to do a lot of work but it would be a lot easier when the person he's doing it for is open and comfortable with you. If my mum was uncomfortable and unsure about my dad but I had, for example, three siblings who could provide extra support, again that may be manageable. But both of these situations combined is already not working and it may not be long before it reaches boiling point - one of two possibilities really scare me:

1) My dad breaks down unable to cope
2) My mum doesn't want to be around him and starts wandering off or getting aggressive etc.

Historically, my parents have been 99% reactive and 1% proactive in life generally and in this case would only take action when one or both of these things happened. My role, again, is to provide that proactivity, firstly by encouraging my dad to make the appointment and secondly to make it explicit at the appointment about our situation. We should be prioritised for professional, external support whatever that looks like, given our circumstances. And I don't think that is being naive.

I bear the brunt of my mum's confusion and frustration - she still knows exactly who I am which is great obviously but it makes for a very hard few hours when I'm with her. I also feel I should do more, but ultimately I think the impact of that would be on my working hours which I think I would have to reduce if this was to happen. Being a single homeowner is harder work than I ever imagined and I frankly don't believe I should be reducing my social hours, given that I spent most of life prior to the past few years unable to live a proper social life due to the grip of anxiety.

And this is, of course, the other consideration. This blog website and everything contained within it tells you my story of anxiety from age 11, and I noticed on the days I stayed with my parents over Christmas the good old familiar feelings of anxiety creep back in. This was mainly in the form of struggling to eat properly which is often the first thing to be affected, and breathing awkwardly. Luckily, I managed to control it thanks to my CBT experience, but nevertheless it showed that much longer at my parents may have been more difficult to deal with. Being immersed in the difficulty of the whole situation, combined with constant attempt to keep my mum occupied and happy over these few days resulted in anxiety breaking free. And that is why it is probably best that I don't increase my hours of support that I do each week, because the affect it could have on my life could a) set my personal development back years (which my parents wouldn't want either of course) and b) make it so I couldn't support my parents at all, because I was too anxious.

There is not an hour that goes by where I don't feel guilty about not doing more to support my parents, trust me.

Overall, I'm not exactly sure what the next steps will be for us, but whatever they are they have to be taken soon, because this situation is like a pressure cooker at the moment.

In part one of this blog, I listed nine things that I learnt about dementia and supporting someone with the condition. I have listed these again below and given you additional commentary on my perspective five months on.

1) It takes no prisoners - yes, this is still more than true!

2) Photos are incredibly powerful - hmm, I'd reduce the tone of this down slightly. The effect of my dad showing my mum photos wore off quite quickly. I've encouraged my dad to try again and to put a few photos in frames as permanent reminders round the house. Time will tell, but I think I over-egged the impact of this one somewhat.

3) Read the literature - yes, definitely. I have recently lifted a fair whack from the Alzheimer's Society's 'Carers - looking after yourself' publication for my dad which has helped a lot, especially with what we need to press for at this forthcoming appointment in terms of support we need. Again - charities to the rescue!

4) Medication helps - Short-term, yes, a lot - long-term, less so. Her improvement over the summer must at least in part be attributed to medication, but the effects of it seems to already be wearing off and I don't think there is any more or stronger medication that can be used. My mum has also been experiencing 'sundowning' too, which in short means that her symptoms are generally worse in the evening. This is, in part, due to the effects of the medication (which she takes just before bedtime) wearing off.

5) Music matters - yes it does. She still remembers, very vividly in many cases, songs especially from the 70s and 80s and I often fill in gaps by putting music on that I know she likes. Luckily my parents have Sky and so have various dedicated music channels, and I bought loads of compilations albums last year. It's a good gap filler and can stir useful memories.

6) Physical activity is fundamental - Still very true. The main activity I do when I'm with my mum is go for a walk. She enjoys it and it is very good for her too. She usually goes for at least one good walk a day. She's not into other types of physical activity but that doesn't matter too much.

7) Don't do everything for her - I think this is where my dad has not been quite so good. He is doing a brilliant job in difficult circumstances, but I believe he took too many tasks off her too early. And he also makes a point of it if she hasn't done something quite right - he's a perfectionist, and changing this will take a cognitive behavioural therapist many sessions of work. The point is still an important one and I try and leave her to do things when I'm with her that she can still do, like wash up and my ironing (see previous blog!)

8) Be the same person - I am still doing this. I don't know if this will be possible, or whether it is the best thing in the long-term now though. How I am with my mum and how I should react and what I should say when she's struggling are things I need to get some expert insight on I feel, because I am increasingly feeling out of my depth. Should I tell her that by 'they' she means my dad, for example? Or do I just carry on 'going with it' and being her son exactly as I was before the disease took hold? I'm doing the latter at the moment.

9) Look after yourself - see rest of blog before this list. I believe, especially for my dad, that this will only be able to happen if we get the right support we need. My dad still goes and plays his golf about three times a week which is hugely important and we need to be in a position where this can continue.

I'd add three new ones:

10) Hobbies are important. I mean this twofold: 1) linking with point 7 above, whilst someone with dementia can still participate in their hobbies, keep doing them. The problem we also have is that my mum never really had what you might call hobbies, walking aside. When she retired in 1987 (when she gave birth to me), her sole role was to look after me. Then when I grew up and especially when I moved out of home, I'd have hoped she'd have picked up more hobbies or charity work, but never did. She spent most of her days walking, going to town and watching TV to be honest. This makes it harder to keep her occupied when I'm with her, especially now she's becoming more restless.

11) Your life will change. Of that there is no question. Don't expect to be able to do the same things you've always done, especially if you're the primary carer.

12) You learn a lot about yourself as a family member. And for me, I mean this also in terms of how I will apply the management of anxiety so that I can be useful support for my mum. I have much more to learn yet, me thinks.

Overall, my biggest concern is that my mum's support worker 'signed her off' in the summer for a year, which I rightly or wrongly read as that she was unlikely to decline much within that period of time. Sadly that has not happened and here we are barely six months later in a much worse position.

This is a huge challenge. One that I did not expect or sign up for. But one that is so much worse for my mum and my dad than it is for me. So I need to strand strong. I need to show that I will not wither and wilt under the pressure that this situation brings about. I have no choice but to tell anxiety to go and do one, but for this to be easier, we need to implement external support as I've been talking about.

It is, yet again and unfortunately, another example of not making the most of things when they are good. Neither of my parents have really been ill in the past and you assume that it won't happen to you. Like everything, this situation reinforced what I guess we all know yet don't act upon - do not take the good health of those closest to you for granted.

Best wishes,
Al

Five Blogs of Thanks - 5th Anniversary of The Anxiety Tracker - Twitterites

Hi all,

This follows on nicely from yesterday’s first blog of thanks and also contradicts a fairly recent blog I wrote about my disdain for social media.  I was primarily focusing on Facebook and joyfully wrote about how it can lead to increasing mental health problems largely through addiction, a lack of escape from being able to compare yourself (negatively) to others and trolling and how all of this can lead to anxiety and depression.  I vehemently believe this to be the case and stand by everything I said in that blog; I deleted my Facebook account in the back end of summer last year and I have not regretted a moment; it’s been wonderful not being exposed to endless drivel.

Yes, yes, I know, not unlike this blog.

So it seems somewhat hypocritical to write a blog thanking people I have engaged with on Twitter over the years.  Let me explain the difference.

I set up Twitter in 2014 to engage with other people who have experienced mental health problems and/or who are campaigning for better mental health services.  I wanted a platform to share this blog site with others to help them and gain feedback, primarily, but also to learn from other people’s experiences of living with a mental health problem and how they have dealt with it. I wanted to gain more intelligence around how I could help myself and how people who have experienced chronic anxiety (or equivalent) are facing later life. I also wanted to connect with like-minded people.  I did not set up Twitter to engage with ‘friends;’ the fact that a few of my friends are followers is irrelevant.  Twitter allows you to follow who you like without feeling guilty about not following others back.

Okay, so it’s certainly is not without its faults, but if used properly, it can be of real benefit for people looking for peer-to-peer and professional learning about mental health (people may tell me that Facebook can be too, which is fair enough – I appreciate I am in the minority when it comes to this view)!

Along with useful and interesting tweets from various mental health charities and organisations that support/run mental health services (see yesterday’s blog), I have connected with numerous individuals over the years who have inspired or influenced me in some way.

Leaders in the field

This list of Twitterites range from people who I perceive as leaders in the field, who have taken their compassion for others and passion for raising awareness of mental health and reducing stigma to an incredible level largely off their own backs. And who I probably wouldn’t know existed without being on Twitter. The list below is given in Twitter handle alphabetical order.

@ClaireyLove – who during my time on Twitter has risen to stardom with her fabulous book ‘We’re all MAD here.’ It has been fascinating and awe inspiring to watch this lady who must be of similar age to me express her experiences of social anxiety (and wider anxiety) with the world.  Check out this website if you haven’t yet.

@DoodleChronicle – a brilliant way of depicting how art and, specifically, doodles can be used to communicate what mental illness really feels like.  This Twitter site is more than just doodles, though, and contains incredibly candid accounts of what it is really like to live with a mental illness.

@enhughesiasm – someone who has turned to comedy to express what it feels like to live with anxiety, expressed in no small part by his TEDx talk last year which was brilliant. And made me hungry.

@FionaArt – her Twitter account states that she is an ‘individual trying to change the world’ and frankly who could argue? She has also contributed significantly to live mental health chats on Twitter recently – off her own back – so that people can tweet their live questions and experiences. Check out #mhchat.

@matthaig1 – a very talented man doing his utmost to make changes to our mental health system and influence those who need to be influenced. He has also written several books which draw on his expertise and depicts it in an empathetic, inspiring and vivid manner.

@MelJN17 / @MelNaray2nd – it’s not often you can tell someone is a beautiful person without physically meeting them, but Melanie comes into this category. Check out her two Twitter accounts to see what I mean – and her poems.

@MrJonnyBenjamin – The MBE for his services to mental health and suicide prevention pretty much says it all. His support to improve mental health services and raise awareness of the impact it can have on people’s lives knows no bounds. The powers that be would do well to listen to him more often.

@TheSarahFader‏ – and from across the pond, Sarah Fader is CEO of Stigma Fighters, another charity doing its bit to show that mental illness is nothing to be ashamed of.  The success of the charity is down to Sarah’s palpable enthusiasm for the subject and she has even created her own hashtag: #ThisIsWhatAnxietyFeelsLike.

Thank you all for doing an incredible job at changing people’s perceptions of mental illness to such an extent that it is genuinely influencing national policy and activity – and ultimately, helping those people in greatest need.

Then there are all the brilliant people I have connected with on Twitter in the past three years who are going about their daily lives but in the process trying to make things better for other people by sharing their experiences and helping others through difficult periods. They act as sounding boards, trusted virtual entities that understand and can empathise with what ‘difficult’ really means. They are an army of compassion individuals, all vastly different but with one common goal: to help others. A special mention to those who have particularly affected me:

@Allinthehead19 – check out https://allinthehead2016.wordpress.com/.

@AnxietySunshine

@anxiwarrior – check out https://anxiwarrior.wordpress.com/

@DanAnxietyBlog

@DawnPriestland

@Jinthelife – check out http://www.ajayinthelife.com/

@jonnyward21

@katyfrank18 – check out http://katyfrank21.tumblr.com/

@ktanx1

@lesleylyness

@lisaeva77

@mandy166

@Miss_Horan7

@RoseWiltshire

@SimbaTalks

@shazzaph

@Syrupie

@vikyjane

Thank you all for being brilliant.

Before you ask, yes it did take ages to go through all of my followers to try and ensure I didn’t miss anyone (which I probably have failed to do – in which case apologies).

Then of course, as mentioned previously, there are the Twitter accounts of the various charities, such as Anxiety UK, Anxiety United (in particular, given their lack of resource), Mind (local and national) and the Time to Change initiative, Tasha Foundation, SANE and the Samaritans, along with recent dementia orientated charities which have also been increasingly useful for me over the past few months.  Thank you all for sharing your wisdom and resources on this platform and reaching out.

I think I am using Twitter in the right way; the amount I’ve learnt from this group of people and others is testament to this I think.  And moreover, when compassion seems scarce during the day to day grind of life, one log-in to Twitter can totally change that perception.

• To the Twitterites who are suffering, thank you for sharing and reaching out. I hope it helps.
• To the Twitterites for sharing your wisdom, thank you; I have learnt so much.
• To the charities Twittering, thank you for allowing easy dissemination of your information.

Thank you.

Best wishes,

Al

2017: Why it has been the best year

Hi all,

Oh what a surprise, a stereotypical 'end of year blog.' Oh what a surprise, someone starting a blog or article with 'oh what a surprise, a stereotypical end of year blog.' Well yeah, whatcha gonna do?

No, there is no reference to deep
house in this post

I thought I would write a positive blog at the conclusion of this momentous year in my life. You may still question whether 'momentous' is the right word after I have finished the blog, but for me, it has been momentous and some. I don't wish for this to come across as an 'oh look what I've achieved this year' arrogant type piece by the way, and I hope it doesn't come across that way. Indeed, some of things I call 'achievements' would be, to some, normal everyday activities that wouldn't seem like achievements at all. Then again, if you think that, you've probably never lived with a chronic mental health condition.

No, what this blog is meant to do is show that, if you're reading this in a low place of seemingly endless despair, as I was for many years about five plus years ago, it is possible to come out the other side and take on life and actually live it to a certain degree. Something I never thought possible when I was sitting on a train eight hours from home, feet numb, hands sweaty, feeling sick and short of breath - in the grips of my worst ever panic attack that lasted 14 hours.

So why has 2017 been particularly positive, amongst the national and global stuff that keeps everyone slightly nervous and angry?

On my travels

If you've been stupid/clever* (*delete as appropriate) to read many of my more recent blog posts, you will have noticed that I have been on holiday three times this year. I went on my own to Edinburgh for two nights in February, Ireland on my own for eight nights in May then Canada with a friend for 12 nights in September. This is probably a fairly normal degree of holiday for an 'average person,' i.e. someone from my sort of background but who has not had anxiety most of their lives. Before this year, the only holidays I had been on were with my parents back in the day, to Wales four times for four nights with my friend and Barcelona on a geography fieldtrip. I had never been abroad before, apart from Barcelona and Ireland twice, and never been away on my own. So this year rather ripped up the script in terms of what I'd done previously. I not only went away, I went on my own, twice, and went abroad for the longest I'd ever been abroad. And of course they weren't without their challenges, but overall I even managed to enjoy myself!!

If you'd have asked me to do this five+ years ago: I'd have nervously gone and had to go back home before even getting to the airport or on the train.

If you'd have asked me whether I'd be doing it in five+ years' time: Not a chance. I remember saying, about a four hour train journey for a weekend away that I had to cancel about seven years ago, 'I can't see how I can ever get out of this situation.'

I was in a relationship!

Okay, so as my previous blog describes, my recent relationship ended after about three and a half months, so you could ask 'why is this a success?' Because I was actually in a relationship at all! I honestly never thought I would have the confidence to meet a girl in the first place, let alone get her to like me for long enough to say 'I'm in a relationship.' I also learnt a lot from my experience and it has given me more confidence - okay, a little more confidence - to potentially take something else forward. Meeting someone else doesn't seem any more likely now I have to say, but nevertheless, I still can't quite believe I was in a relationship at all.

If you'd have asked me to do this five+ years ago: Not applicable as it was deemed impossible. In the unlikely event a girl had been interested, I couldn't have sustained a relationship anyway as I was a mess myself.

If you'd have asked me whether I'd be doing it in five+ years' time: No. End of. To be fair, though, even after this experience I still believe I will end up single in later life too.

Maintaining friendships

As you know this is a hugely important aspect of my life. I could not live without my friends. Fortunately, my core group of friends have remained local and as always I have had many adventures and laughs with all of them this year and, crucially, I know they are there for me if I need them. I depend on them significantly and always have and gladly, if anything, the friendships have all strengthened even further this year.

If you'd have asked me to do this five+ years ago: I already had a core group of friends that I totally relied on, but if anything these have since strengthened further and secondly, I'm not sure I appreciated them as much then as I do now.

If you'd have asked me whether I'd be doing it in five+ years' time: I thought I'd still have a core group of friends but I thought more of them would have up sticks by now. I'm making the most of it whilst they're still here!

Still love my job

Another big one. Even when I was going through dreadful times a few years back, work was my haven and solace, compared to everything else. The exception came when I had to travel somewhere for work or give a presentation, particularly after my 2011 meltdown, but anxiety whilst at work was minor in comparison to other situations. It was the one place where I could actually be free from most of its grip, albeit constantly thinking about what would happen when I left the office! When I applied for my current job four years ago, I was in a better state overall, but I was daunted by the change, especially given I suddenly had a commute to face. But, the people, the work, the type of organisation and the flexibility of the job has made it an absolute pleasure to work for this organisation. We've been close to shutting down once or twice and the future is likely to keep us on our toes, but from my perspective I want to work here for as long as possible.

If you'd have asked me to do this five+ years ago: I have been working for well over nine years now, so yes I was already doing it...

If you'd have asked me whether I'd be doing it in five+ years' time: I didn't think I'd be in a different job and enjoying it so much and so confident about what I do. And actually enjoying doing presentations!

I'm closer to my parents

Again, I am turning a negative into a positive here when you factor in that my mum was diagnosed with dementia this year. This is clearly a huge challenge that has already begun but that awaits us more so in the future. But what this has meant is that more of my time has been required with my mum, and because my role is basically to 'entertain' her when I see her, she appreciates that and looks forward to me coming over, which of course makes me feel good. As far as my dad, the primary 'carer' if I should now call him that, is concerned, we've had to pull together on this as you can imagine, and we are now closer than we used to be. We've never been what I would define as 'close' but we have worked together to ensure we can do the best we can to do what's best for my mum and I believe he now recognises I am an adult (I'm now 30, so better late than never!) and that sometimes it's worth listening to my advice and opinions!

If you'd have asked me to do this five+ years ago: In terms of supporting my mum with dementia, I'm just glad this has happened when I am a lot better, because I honestly think I would have been a hindrance to her rather than a help if this had happened a few years ago.

If you'd have asked me whether I'd be doing it in five+ years' time: Obviously you can't vouch for a family member getting a long-term illness - "it doesn't happen to me" - so of course not. I knew I'd still be seeing my parents but not in such a structured manner. But as I say - the positives are there and I have to take those.

It was the fifth anniversary of this blogging site!

Certainly worth a mention; I did 'Five Blogs of Thanks' to celebrate at the time.

If you'd have asked me to do this five+ years ago: Well I probably would have, given I did start doing it just over five years ago :)

If you'd have asked me whether I'd be doing it in five+ years' time: ...but I never thought it would last for five weeks let alone for over five and a half years. Thank you to everyone who ever reads my posts!

Other stuff

In addition to the above, these are the things that most people take for granted that I'm just grateful I can now do without major trauma:

• Eating out - I make sure I eat out at least once a week now because for many, many years eating out was a living hell.
• Going to a few different places - I mean on a smaller scale to the travelling I've talked about above; day trips with friends, things like that.
• Enjoying my own time - I still have a lot of time alone, but I appreciate it more now, enjoy it more and use it better, partly because I've had to but also because I'm better at planning to ensure my mind doesn't wander into unwanted territory.
• Exercise - Any sort of exercise made me panic in the past, largely due to an increased heart rate which set the health anxiety off. Now, I thoroughly enjoy swimming, cycling and walking and know, of course, that it also benefits me mentally too.

All of this is underpinned, of course, by not constantly fearing what that pain is, what people will think of me in social situations, that I might have a panic attack in an unfortunate situation - leading to, of course, panic attacks. Forget all the stuff I talk about above - ultimately the most important thing is that I have not spent this year in anxiety's grip. I have managed to not let it control me and dictate my life as it used to and this is the best gift of all that 2017 has given me. 

None of this would have been possible without my 50 sessions of Cognitive Behavioural Therapy that I had 2011-12, courtesy of Anxiety UK's brilliant service. I tremble to think where I would be now without this help.

The challenge for 2018 is, of course, to make it as good if not better than 2017. This looks increasingly challenging, as I've blogged about before, due to changing circumstances in my life that are likely to kick in in the next few years - friends moving away, my mum declining in health, my job never being overly stable etc - but only I can try to turn these into positives like I have some aspects this year, or at least, balance out these challenges or gaps with other positives. I think the crucial thing is that I now have the ability to do this, whereas years ago I did not. 

I look back to 2017 with fondness. I think that's the first time I can truly say that. I remind those of you who cannot say this that it is possible to fight and beat whatever mental health condition you're battling with. It is not easy, but it is possible. Talk to someone. Friend, family, charity, Twitter, Samaritans, colleague, whoever. That is where it all starts.

I would like to wish all my readers a wonderful Christmas and a happy New Year.

Best wishes,

Al