July / August 2009 - Starting To Cope & Getting Things Organised

Looking back at my scribbled notes, doctor’s letters and various other bits of paper I see that my memory isn’t perfect. I was sure Carol’s voice was lost before the notes say it was – I had different dates in mind for Carol’s walking aid support needs changing – what I find is that we were into early 2010 before the major changes occurred, but that shortens the period in which everything seemed to happen from the 13 months I’d pictured to more likely 10 months in reality. As I said before – progression was rapid. It also reminds me that the first 6 months or so were relatively quiet.      

Following the diagnosis things start to happen – referrals to different areas of support. The specialist wanted us to go back and see him before the end of the month but Carol cancelled – and we’ve never been back to see him since. Carol needed a person to blame and the specialist got that honour – I suppose somebody had to.

What I can also say now is that a grieving process begins almost immediately – you start to grieve for the loss of the life you’ll no longer have, and the loss of the person you’ve planned everything with. Carol hadn’t gone anywhere but all of the plans for her life had – and so had mine. In truth those 5 wonderful stages had already begun with denial – a pretty obvious one we’d been in for quite a while – the others would follow over the next few months (anger – bargaining – depression – acceptance) in various guises and at various times that would be different for all of us.

The first person we met with was Lou from MNDA. The denial stage was still very much evident and Carol was unsure about the meeting but warmed into it once Lou started to talk to us. Lou was frank and open about what lay ahead for Carol and what we could expect. She started us working on the list of things we were going to need as time went on. She talked us through how the disease progressed from her experience, but guarded against any assumption that Carol would be the same as anyone else. That’s when I realised just how unique MND is - no two people are ever the same so although we could predict what to expect there were no guarantees and certainly no timescales. Counselling was offered but that’s not something either of us wanted to go for – and it still doesn’t appeal.

The most important thing for me was that it became apparent that staying in front of the disease was vital as the progress was unpredictable. We’d need everything organised ahead of any changes in Carol’s condition. That was quite daunting at that point, as all we had were words and Carol did seem to be ok. Lou talked to us about speech therapy, physiotherapy, equipment, care packages and end of life decisions.  Carol was able to explain how she felt and we both felt better for the chat, but the road ahead suddenly looked a lot more bleak.

Talking things through properly with the children was the next key event, and I did that. I was honest about the disease and what Carol, and us as a family were now facing. That wasn’t easy but honesty was the best approach – I suppose them being older was a help as they could understand what I was saying even though I was giving them devastating news about their mum. I have no idea how you can cope with something like this if your children are very young.

A trip up to the family in Altrincham meant we could complete a 5 mile charity walk in August in memory of Jake. Carol did the whole thing slowly pushing Charlie’s buggy in front of her – with a wheelchair following behind just in case - it was just like one of them Top Gear forfeits waiting to pounce! This was also the first time since the diagnosis where the whole family was together – as you would expect there were quite a few tears all round.

Later in August we attended the second of the soon to be regular meetings – this one was with the Rehabilitation Consultant. Carol didn’t want to go as it was at Marie Therese House – a specialist unit for patients needing higher levels of care for illnesses like MS / MND / brain injury. The doctor was very nice and again discussed what lay ahead, he also outlined support that was available and we requested referrals to speech therapy, physiotherapy and an Occupational Therapist who could assess Carol’s equipment needs and look at the set-up of our house.

I suddenly turned into the organiser – don’t know how it happened but it just seemed to click in. I was concerned about getting a head start and began looking at the options and talking to the support team that would suddenly start to appear around us. It sounds cold but I’ve developed the ability to be quite clinical about what Carol needs and maintain that focus without bringing emotion into the decisions.

Emotion is always there, and there are some very dark moments, but you learn quickly that they serve you no purpose. Although crying and ranting have provided a much needed release at times unfortunately you always end up back where you started - nothing has changed when you come out of the other side except you’ve lost some more precious time and energy. Carol needs me to provide strength and support for all of her needs – as well as doing all I can to support the children. I need to focus on that and can’t do it if I’m spending my time as a gibbering wreck.  

This sounds even colder when I read it back but everybody needs to develop a coping mechanism that works for them. We all need to find support, and there are a few key people I’ve lent quite heavily on – yes the family are there to talk to but for me that’s too close. I find it easier to talk things out with a few close friends and I will forever be indebted to Tom and Jo, and Hils for always lending me an ear - and the odd shoulder.