Reasons to step away…

I’m not normally one for going into personal circumstances and all that stuff. Not due to any kind of shit stiff upper-lip crap, I’m just a private person (yeah, hard to believe I know) when it comes to certain aspects of my life. Generally I cope pretty well. I’m lucky. I’ve got friends to lean on and I’ve got a supportive wife and two lovely kids. But sometimes things get so difficult that I need to cut to the minimum my interactions with people. This is one of those moments, with good reason.

I have a tendency to throw myself into stuff (behold and look at all the things I throw my energies into to a variety of degrees). Partly because they are things I care about, partly because it helps distract me from things happening in my life. Sometimes though, those things in my “real life” become so big it’s simply not possible to bury it anymore.

My mum is dying.

That’s quite a tough thing to finally admit to, but it’s true and it feels better for confronting it. I don’t mean dying in the sense she is getting old. I mean in the sense she is dying in one of the slowest, most devastating and visible ways you can imagine. My mum is 71. At this time of life she should be enjoying her grandchildren, looking after them, spoiling them, seeing them grow. Instead my mum is housebound, barely able to move and increasingly losing the ability to talk. This is because my mum has multiple system atrophy (MSA).

Before she was diagnosed I knew very little about it. It was not something I had ever been aware of. I’m certainly aware of it now. It’s a degenerative condition so, of course, I will witness my mother’s condition slowly degenerating until it cannot degenerate any further. Needless to say, this is particularly grim for my mum who now wakes up every day knowing that each day is going to be worse than the last.

I’ve not had the best relationship with my mother in recent years. My parents divorced when I turned 30 and I didn’t deal with it particularly well (some would say I still haven’t). Whilst my parents had problems, and my father was particularly difficult to live with (not least because he was a prison officer, which seems to be an incredibly stressful job), it came as a shock. For 30 years they had brought me and my sister up and it was suddenly coming to an end. We were neither well off nor did we struggle. My father’s job coupled with my mother’s part-time shop work didn’t bring in huge amounts of money, but we managed and never really went without stuff. We managed. Sometimes things were tough — my parents didn’t think they would be able to afford to pay for my sister to go to university having already supported me, but they found a way. I didn’t appreciate a lot of stuff when I was a kid, but I certainly see things differently now.

Anyway, whilst my mother was closer to both me and my sister than my dad, around the time of the divorce things deteriorated rapidly. We have always visited her but, of course, the divorce changed a lot of things. Then my mother started to fall ill and her condition had been rapidly deteriorating before, finally, we received this diagnosis. She moved out of her flat (that she bought after the divorce for an over-inflated fee), lost approximately £40,000 from the sale, and is now in council accommodation and, given her worsening condition, subject to ongoing care from the council. Care that is, of course, subject to severe financial pressures due to funding cuts (my mum is also a Tory voter and I had many discussions with her in the run-up to the election about the fact she was going to need care and the Tories would make her life more difficult rather than making it easier — part of the reason I was infuriated with some of the Tory voters = rats tweets I saw post-election).

And now here we are. Despite my mother trying to lead as independent a life as possible, she’s increasingly finding she can’t move around her flat and is losing the power of speech. My sister recently spoke to someone whose mother also developed this condition. From diagnosis to her passing away was approximately 12 months. We are probably about half-way there. I have a sense that this will be the last Christmas that my children will see their grandmother. The last chance I will have to experience a Christmas with the family I grew up with, disjointed though it may be. But, most importantly, my mother will enter 2016 knowing it will be probably be her last. I can’t begin to imagine what that must feel like — being aware of what your condition will lead to and not being able to do a damn thing to stop it. Waking up every day not knowing if this was going to be the day you wouldn’t be able to get up from bed. Not knowing if this would be the day you would lose the ability to speak to friends and family. Not knowing if this would be the last day you would be able to tell your grandchildren that you love them.

I don’t know where to go with this. But thanks for patiently reading. And thank you to those of you who are aware of this situation and have been unwavering in their support and understanding. It’s very much valued and appreciated.

You can find out more about MSA via the MSA Trust here.

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