CAROL ANNE GORMLEY - 23/12/1964 - 29/12/2011

Carol passed away last night at 7.30pm.


There's so much to say, so much to process - but right now all I feel is incredible pain.


We've been waiting for this day to arrive - putting everything in place - and you think you're ready - but you're not.


The end was very peaceful, Carol just couldn't fight anymore and it was time for her to let go - I'm sure we'll see the good in that at some point - but right now all I can see is an empty space where Carol should be.


My beautiful lady - my soulmate and the love of my life.

The bravest person I've ever known - so incredibly brave.

December 2011 – Scared – Carol’s Birthday & Still Sorting Stuff Out!

This month has had challenges on a couple of fronts for Carol - we’ve been dealing with:

1)      The laptop is currently gathering dust as Carol can no longer use the headswitch comfortably, so she hasn’t been keeping in touch with everybody. We’ve been looking at options with Carrie from the Speech Therapy team and she arranged for Carol to have an assessment for the Tobii PCEye – that’s the device I’ve previously mentioned that costs a fortune! The assessment was a real success, and it’s a very impressive piece of kit which would suit Carol’s needs perfectly – we’ve just got to hope that funding can be sourced from somewhere – Carrie’s on the case and fingers are crossed. 

2)      Carol’s sleeping has actually got worse this month – something I didn’t think was possible! This arose from the heart palpitations problem and the introduction of the new medication to stop them happening. Although we got the palpitations pretty much under control the side effects from the meds caused other things to happen. Carol experienced problems with a dry mouth (typical after all the trials of 2009/10!) and this was keeping her awake so I had to use the artificial saliva spray to counter this. Despite the sedative properties of both of the new meds Carol continued to baffle medical science by lying awake most of the night! The recent challenges of trying to get Carol comfortable in bed have also impacted on sleep and we’ve now resorted to a V-shaped pillow to try and give Carol the required neck / head support. I do need to thank Amy and Dr Anderson for all their help this month – we’ve had a number of conversations trying to find solutions and we’re now on the 4^th different permutation of meds / doses. Too early to say if we’ve cracked it yet but Carol is now on a stronger sedative at night to help her sleep – I’ll keep you posted.

My parents have come down to stay with us for 3 weeks – it’s always good to see them and even more so at this time of year. There’s the good feeling in the house that they always bring and Carol has more company – so she’s not just stuck with me!! These visits also give Mum and Dad the chance to catch up with the kids, and now of course their Great Granddaughter – they’ve not been down since August and baby has changed a lot since then. They’ll be here right through New Year so it’ll be nice to spend time with them – especially as I’m off work myself for the Xmas break.              

18^th December - Carol told me she was scared today – scared of how her body feels inside and of the things that are happening to her every day. What’s the correct response to that when I’m terrified myself? We no longer have many answers and “it’s going to be ok” doesn’t work anymore. Being the organiser I’ve been able to get things done for Carol and keep everything under control so far, but as we reach this stage of progression our ability to keep ahead and find solutions is diminishing.

23^rd December –Carol’s birthday - I‘m wishing my beautiful lady a very happy 47^th birthday today – and judging by the numbers of cards, presents and flowers so are plenty of others! Despite all that’s going on there are still things that need to be celebrated and today is most definitely one of those. Great to have some of the family around and there are also lots of messages on Carol’s Facebook page – my lady is loved by many people and that’s something to cherish.

So Xmas is upon us again – not a time to dwell on the negatives, we’ve got through another year and for me that’s a real bonus. This has always been Carol’s favourite time of year so let’s all enjoy ourselves and be thankful for what we have. There won’t be any New Year’s resolutions – let’s just keep going and see where life takes us from here.

More From Me - Caring And Some Painfully Honest Thoughts......

Bearing my soul and being brutally honest about a subject as personal and painful as this one is pushing me well away from my comfort zone.  Caring for Carol is the hardest thing I’ve ever had to do – nothing can prepare you for having to watch the person you love being overtaken by a disease that cannot be beaten. Let’s face it, finding a soulmate in our lifetime is hard enough – sitting and watching as that person is slowly taken away, well there are just no words to describe what that’s like.

There’s no instruction book or training manual to read when you’re a carer – it’s something you just do, making it up as you go along and learning from the mistakes you will most certainly make. You can find lots of advice around, and plenty of support if you’re lucky, but it’s a situation that’s unique to you so your days will not be like anybody else’s.

I’ve thought long and hard about whether I should even write this next thing down but this blog only works if I’m honest – it will only help somebody reading this to understand if I’m honest. The thoughts that go around your head can’t be controlled in this situation – however you would like them to be. The worst one of all is when you allow yourself to think that you want everything to be over. Let me be perfectly clear – I’m not sat here wishing that Carol would die, in fact I’m selfishly wanting to hold onto every single day. But that thought is actually about not wanting Carol to suffer anymore, not wanting this disease to take anything else away from Carol. I know how hard all of this has been for Carol and just can’t stop myself from thinking at times that she’s been through enough. I’ve said before that life can be cruel – and I mean that it’s cruel on all of us. How bad do I feel for even letting that thought enter my head? How can I even contemplate such a thing? I don’t have the answers but it’s a constant battle between wanting to keep Carol here with us while this disease eats away at her every day (selfish?) and wanting Carol to be released and free of it all (also selfish?) – and behind it all knowing the depth of the loss we’ll all feel when that does actually happen.

I wrote something a couple of weeks ago on the MNDA Forum, in response to a lady questioning how a carer should feel and whether it was right to not want to carry on. My reply was instinctive, typed quickly and without any real planning, but when I read it back I realised I’d written a very honest subconscious thought that I’d actually never said out loud before. I wrote this: 

“Speaking as someone who's been caring since my wife was diagnosed in 2009, and dealing with all that needs to be done, I can honestly say that…should not feel bad for having those thoughts. I doubt there's a carer out there who hasn't hit the wall at one time or another - we're all human and we're all going through something traumatic. Everybody develops their own coping mechanisms but having the right support around certainly helps to pull you through. Those thoughts come from the circumstances we have all found ourselves in - they're not aimed at the people we love and care for. Carol gets frustrated with me as well - but it's what the disease has done to our lives that brings those feelings out - not the way we feel about each other.”

It’s the last part that really hits home for me – the person I’ve become is not someone I ever expected to be. There are times when I dislike this person – those times when my frustrations boil over and I get snappy. Don’t get me wrong – I would never do anything that would hurt Carol or endanger her care in any way, but there are times when doors get slammed and I’m generally grumpy because it’s taken me half an hour to get Carol comfortable in bed – pillows in particular are a nightmare these days. Then after the tantrum I feel terrible because I know none of this is Carol’s fault and I shouldn’t let her see those reactions. As I said above it’s the disease that’s doing this to us and there are times when I hate it.

As far as being a carer goes our days are all about planning and routine – this has changed regularly over the last 2 and a half years, in response to Carol’s condition, but they’re pretty stable at the moment. I get things organised the night before, next day’s clothes and morning meds etc. This gives me a headstart in the mornings, as I’m getting myself ready for work and setting Carol up for the healthcare ladies visits each day. As I’ve already said Samm looks after Carol during the week, and Kyle’s around as well, but most days I’m talking to someone in Carol’s support team. Whether it’s meds or care or general questions there’s usually something that needs to be discussed.

I come home from work each night and get straight into whatever jobs need to be done. Evenings are about keeping Carol settled – watching something on TV (currently working our way through the entire series of ER on Sky Atlantic). Feed needs sorting, flushes and meds go in at set times and then it’s all about bedtime – not forgetting any toileting that needs doing as well (Carol likes to save that just for me!!) then preparing for the next day again – and on it goes.

At the weekend I rarely leave Carol’s side – something always needs doing and the healthcare ladies only visit twice so there’s more to cover during the day. We’ve developed a routine that works and on these quieter days Carol tries to sleep during the afternoon – with varying degrees of success.

Sleeping is an issue I’ve mentioned many times already – Carol really struggles to sleep and, as I’m next to her on a mattress on the bedroom floor so do I! It’s been like this for over a year now and I can’t remember the last good night’s sleep I (or Carol) had. Keeping Carol settled through the night involves having to change her position, give meds if required, sort covers out and so on – and being woken to do this 4 or 5 times each night is normal. Those frustrations I mentioned earlier often rear up around 3am, when we’re awake for the 4^th time struggling to function and the pillows won’t behave!

You just can’t switch off as a carer – getting Carol into bed means I can then think about the jobs around the house – and you all know they never go away. But all that keeps me busy – and busy works well for me.

Some Thoughts From Me………

I’m 44 years old and have been with Carol since I was 19 – so I don’t know anything else. The future is quite scary when you look at it like that.

You see it’s always been simple for me – someone says “tell me about yourself” and it starts with “married to Carol, dad to James, Kyle and Rebecca”…….and on it goes. The most important things in your life always come out first – well they should.

Looking at the future without Carol in it – sometimes I wonder how I can even do that while she’s right here battling with this disease, but the mind is a curious thing and thoughts like that just happen. The life we should be living at this point in time has already gone, remember this is our parallel existence, so what comes next?

Emotion is something I try very hard to control, but let’s be honest – my heart breaks every day. It’s not something anybody can see – I make sure of that - but inside I have to wake up each morning, put on that brave front and get things organised for another day. That’s why I try to keep myself busy all the time – because it’s the downtime that catches you out. Sitting doing nothing is when the brain is relaxed – that’s when you start feeling sorry for yourself – and that isn’t something I’ll allow myself to do. 

I would hope that you’ve picked up quite a few things about who I am from the previous posts - it’s not something I’ve thought about really – I don’t have that kind of ego.

In many ways I’ve always been the opposite of Carol so I’m not the sociable one, as you’ve probably gathered – not comfortable in those situations and any chance of having friends has certainly disappeared since I wrote that earlier post!! Being in a room full of strangers is my idea of hell – small talk is something I just can’t do. I’ve never been interested enough to find things out and don’t think I’m interesting enough for others to want to know about me – and yet here I am opening up just like that – who’d have thought it.

Writing about my perspective doesn’t sit comfortably with me either – it all sounds so selfish. I should be concentrating on Carol and her needs, telling others what she has had to go through and how incredibly inspiring she is. Talking about how that’s affected me doesn’t come easily.

When I say things like “Carol is going through this illness and my life has changed to fit around her needs” it sounds really selfish – of course my life should change to make sure Carol gets everything. But the point I’m trying to get across is that there is no “normal” for us anymore. “Life” has gone into a kind of limbo, because the complete focus is on Carol’s daily needs – but we’ve always been in this together so there was never going to be another option.

Here’s an example of what I’m trying to say. My one real vice is Springsteen – I’ve been fortunate to be able to see 27 shows since 1988 and have taken Carol and the kids with me to see the various tours. Tickets have just gone on sale for next Summer – over here there are 4 UK shows and 2 in Dublin. Now in our previous life I’d have booked tickets for 5 of those shows without even thinking about it, with hotels etc, and all would have been well with the world. In this life I’ve booked for just 2 – the venues that are easiest for me to get straight to and back – and I’m already thinking I may not even get there when the shows come around. You see everything will depend on how Carol is at the time and whether or not I can ensure her care is covered on those 2 specific days. I appreciate that may not be a great example but what I’m trying to say is the things that used to be taken for granted are now regularly out of reach – and that just has to be how it is.

I’m going to stop using the word selfish just as long as you can understand that’s how I feel a lot of the time, with things I think about and don’t necessarily say out loud, and with how most of this looks when it’s written down.

Touching briefly on work - this has provided a distraction for me. I have continued to work full-time throughout everything you’ve read so far – we both agreed I’d do that right from the start – unfortunately we also need the money so what else can you do.

I was completely open with my employer right from Carol’s diagnosis and thankfully they’ve been supportive of everything we’ve needed to do. I’ve worked from home at times and changed my hours to cover all of the appointments and general daily “stuff” that has had to be dealt with.

Because of this Carol obviously has to have support during the day, in addition to the healthcare / nursing visits. I’m very grateful that Samm now does this (with baby) and helps to keep a smile on Carol’s face. Kyle will step in whenever he’s needed and Bec has also helped to cover. This allows me to relax – a little at least – knowing Carol is being taken care of during the weekdays.

I do a good job for my employer, leading a team that’s spread across West Cornwall, and have developed the ability to focus on the work in hand every day - despite always thinking about what’s happening with Carol. It’s not about trying to shut home life off – that can’t be done - it’s just about being able to visualise each day and take everything one step at a time.

Because don’t forget there’s a much more important full-time job waiting for me at home - and I'll write about that next.   

Quick Update – MNDA Survey…….”Assisted Suicide”?

Just to update now that the new meds have had time to get into Carol’s system – yes they do appear to be working. Always wary of speaking too soon, just over one week, but there have been no further palpitations so far. One of the meds is a replacement so I’ve weaned Carol off an existing med and onto the new one. Unfortunately there hasn’t been a marked change in Carol’s sleep pattern, it’s still patchy at best, but let’s keep our fingers crossed. What we have seen is a build up of saliva since these meds started – may just be a coincidence but Carol requested an increase in the syringe driver dosage to try and counter this – and then a couple of days later asked for it to be dropped again! We’ll monitor to see whether there are any changes over the next week or so.

We’ve just completed a survey from the MNDA. The carer’s one is pretty straightforward and I’ll talk about this later but the one for Carol was mainly around end of life choices – we had to answer simple questions on Carol’s personal instructions (Advanced Directive etc) but there are others like:

1)      “The MND Association is very keen to know what their members think about assisted suicide.  What are your views?”

2)      “Are there any circumstances in which you would consider this for yourself?”

Now this is a very emotive subject – which is probably why our views, and those in a similar position to us, are interesting to the MNDA study. I remember listening to a Jeremy Vine phone-in a few months ago about Dignitas – the Swiss clinic – and getting all wound up over some of the callers and comments. As I’ve said before everybody is entitled to an opinion – but I get annoyed when people who have never been in the position to even have to think such thoughts get all high and mighty about those who are actually having to live that life – or not living life (which is the whole point really isn’t it). Then to add insult to injury some of them try and bring religion into the discussion and the whole thing disintegrates into farce.

Now before I upset anyone with my opinion please be assured that we have absolutely no intention of even considering this route – it’s just not in Carol’s nature despite facing the uncertainty of the future – so don’t panic!  I’d also like to say that this wasn’t a subject we discussed much before Carol became ill. But I do know for certain that I have never looked at any of those stories on the news and objected to what those people were doing – I wasn’t living their lives so how could I understand what they were going through.

The answer to question 2 has been touched upon in an earlier post – Carol and I always agreed that the only time we’d ever consider such action would be if machines were the only thing keeping us alive – that’s not any kind of quality of life – it’s not living so we wouldn’t want it.

Question 1 is a very personal choice, but again both Carol and I share the same viewpoint. Until you are living with something like we are every single day then I’m sorry but you cannot understand what it’s like. You may think you can empathise with the situation but unless you are also trapped inside a previously healthy body that now doesn’t work how can you tell me you understand? I’m living with Carol, and have experienced every single day of this disease – but do I / can I really understand how Carol feels? The answer is probably not as much as I’d like to think I do.

What I’m trying to say is that nobody but the individual themselves can really understand and therefore they should be allowed to control their own journey – while the rest of us must accept their decisions. Unfortunately that’s impossible because “suicide” is illegal – and that’s the bit that gets me annoyed.

I’m afraid that what I object to is the word “suicide” in circumstances where the individual is diagnosed with an incurable / terminal illness. If you are facing a certain death, and in many cases a painful, confusing, undignified death, then the medical profession should be able to do something about that in line with your wishes – without any comeback.

Now don’t get me wrong – if you take your own life when you’re “healthy” that’s worthy of challenge – but then the argument over what constitutes “healthy” begins and nobody gets anywhere – which is the whole problem!

To probably oversimplify the point – over the last 2 years we’ve lost both of our families pet dogs. Holly had cancer and Meg had diabetes that caused complications – in both cases they faced the prospect of living with severe pain so we put them to sleep. Why did we do that? Because it was the “humane” thing to do – and we’d probably have been accused of causing unnecessary suffering if we hadn’t made that decision.

So the question is – why is it not “humane” to do that to “humans” – why do we not have the right to make that decision for ourselves when the person facing that life of pain is us?  Again it’s because the law classes any such action as “suicide” - and that’s just not allowed.

Now those high and mighty people will come back and say that dogs can’t make the decision for themselves so we’re doing the right thing by them when we take action – well I say what difference does that make? It seems that we have absolute control over such decisions in our lives as where we want to live, who we want to live with, what job we want to do, where we want to go on holiday, how we want to spend our money etc, etc – but we are not entitled to make the decision about ending our own suffering irrespective of what kind of existence that leaves us facing - sorry but for me that’s just not right.

Stopping before I go any further with this rant I repeat that Carol has no intention of choosing this option – the future will be faced with a smile and each new day brings the chance to spend time with the family.

But the question is, if there’s someone out there in similar circumstances who does want to choose this option would they be wrong? And how could we really understand?