That was the week that was

I hesitated before writing this.  Who wants to read that I’m struggling?  Who am I to think anyone would want to know?  People have got their own stuff going on and don’t need to hear mine.  Yet here I am, opening up a bit.  Because I must.  I’ll only get worse if I don’t.

Just over a week ago, I found myself crying tears of shame in A&E after a panic attack.  Relieved to discover it wasn’t the heart attack I’d self-diagnosed; ashamed that I couldn’t cope with life.  Yesterday, I was going to go out for a coffee, just to get out in the sunshine.  I got dressed and ready, then I hesitated.  I questioned myself.  Where am I going to go?  I won’t be meeting anyone.  I’ll be on my own again.  I can do that at home.  So, with my self-confidence beaten, I got changed again, into kit I wear around the house, and didn’t go out.

I’ve been here before.  For me, this leads to depression, even agoraphobia.  I don’t want to go back there again.  It’s a terrible place to be.

Long time readers will know that I’ve been fighting for years with anxiety and periods of depression.  Since Trisha died, I’ve been concentrating on practical things and not dealing with the loss.  I’m lucky that I can rationalise my way through daily life but that comes at a cost.  My body is showing symptoms and I need to let my emotions catch up.

If you’re expecting a coherent explanation of how I feel, I can’t give you one.  I don’t have one for myself.  My inner monologue describes snippets of feelings to me but that description has no real meaning, no flow to it.  If this is grief manifesting itself, then it’s true that it has no linear path; it’s more of a scribble that meanders its own way, in its own time.  I need to start making sense of what happened, not just when Trisha died but over the whole course of her illness.  That means talking to someone.  That means reaching out and admitting that I can’t deal with everything.  I don’t have unlimited reserves of strength.  I’m not superhuman.  I never was.

If I’ve learnt one thing dealing with this – and I’ve probably learnt only one thing – it’s that ignoring these feelings won’t make them go away.  Help is there.  If you’re struggling, please talk to someone – anyone.  Don’t hide away and think that you don’t deserve to be heard, to be helped.  You do deserve it.  You are worth someone’s time.  Please go and find the help you need.

Brief encounter

Friday afternoon.  Newcastle….again.

I’m standing by the lift near the shops in Eldon Garden because I can’t be arsed walking the five flights of stairs to the ninth floor to shove my shopping in the car.  I’m immediately joined by two women, one walking a dog wearing a harness that indicated that s/he was an assistance dog of some kind.  I smile at the dog because s/he reminded me that Trisha loved dogs and wanted us to get one (I didn’t want to be caring for two, so I always prevaricated to avoid actually saying no.  Selfish, eh?).

Her companion, driving an electric wheelchair, caught my eye.  She smiled at me.  Not directly at me because her posture was compromised, her head was tilted and she hunched slightly to one side.  Instantly, she reminded me of Trisha.  Trisha would smile this same smile; a smile that was not only very sincere but also appeared to be of someone not entirely of this time and place, a naive, child-like, vulnerable smile.  Yes folks, today, Grief shoved its stiletto blade back into my chest.  My heart broke.  Rather than have to explain my wobbly lip, I excused myself and let the women have the lift to themselves.

Up until today, I’d not experienced the ‘ambushed out of nowhere’ grief that I’ve heard other widow/ers speak about.  To add to this, everything I heard or read following this chance meeting seems to have been designed to make me cry.  Alright, I am reading Adam Golightly’s book about his journey through grief but I’ve been strong enough to read it with good-humoured recognition rather than inconsolable howling.  Till now.  Every word twists the blade while I’m having lunch at my Friday haunt.  OK, I’ll listen to music instead.  Shuffle:  Make You Feel My Love (I could offer you a warm embrace, to make you feel my love)…*skip*… Sing To The Moon (Hey there, you, shattered in a thousand pieces, weeping in the darkest night)…*stop*

You sneaky bastard, Grief.  I hate you.

The feels

This is a big week for me.  I’ll be alone in my own home for the first time since Trisha died.  For the last six months, I’ve either had my mother-in-law or my own mother living with me, or both at once.  Last September, Trisha’s mother came to stay here with Trisha while I was due to go to the wedding of my best mate at school.  She’d only been here a few days when Trisha stopped being able to swallow properly.  I assumed – hoped – it would be transient, just a blip, and she’d be sent home again.  The rest is very recent and raw history.

Once we’d been told that Trisha wouldn’t recover this time, my mother came over to join Trisha’s.  I’ve not been alone since.  Tomorrow, my mother goes home.  I think this will be the time when those feelings of grief I’ve been keeping at bay will surface.  I only seem to let it all get to me when I’m alone.  Why is that?  Do I need to give myself permission  How repressed am I?  Don’t answer that, I’m way ahead of you.

Anyhow, I also think this is something that needs to happen.  I can’t keep focussing on the practical things in life to the detriment of my emotional well-being.  It’s time to let the feels in.

Belonging

 

“Three of these kids belong together, three of these kids are kinda the same.  But one of these kids is doing his own thing, now it’s time to play our game…it’s time to play or game.   Can you guess which kid is doing his own thing?”

I’m not one of the kids who belong together any more.  When Trisha was still here, our ‘tribe’ shifted regularly for years, sometimes by our instigation, moving house/area, but mostly without us wanting it to.  Now Trisha’s gone, I get the feeling my tribe is shifting again.

When Trisha was diagnosed, we were shifted out of our tribe.  The wider group of people we associated with moved on as our lives diverged: we weren’t having children, we could no longer buy a house so house prices were nothing to do with us, we no longer had careers to tend.  Our lives became run by MS and our topics of conversation were about medical tests, symptoms, treatments, care management, knowing the location of the nearest accessible toilet, wondering whether urine will come out of those trousers, the cost of dry cleaning, and so on.  The good friends stayed but a lot shifted us along.

We shifted to people affected by MS, whether they be sufferers and their families/friends, carers, and so on.  We’d go to MS Society branch lunches/coffee mornings in York, South Cumbria and the North East.  Symptom sandwiches were washed down by a cup of shared care concerns and tales of embarrassing lapses in bodily control.  As Trisha’s MS progressed, we’d have less in common again with the people going to branch events.  It’s frightening to see someone deteriorate from the disease you have.  Particularly when the statistics say that, one day, you’re likely to be in a similar position.  When you’re the worst affected person in the room, as Trisha was, you know you don’t really fit any more.

Even with progressive diseases, you do come across people who are in a similar position to you.  Your tribe becomes smaller but they’re there.  You all get what it’s like to sleep with one ear and eye open.  You all get frustrated by officialdom’s increasing lack of understanding for your challenging circumstances.  You all share the same worries about the future that none of you have or can plan for.  You all hate the state you’re in but fear the alternative.  It’s a long and stressful tightrope to walk.  I fell off.

When Trisha died, I stopped being a carer.  When I talk to people who are still caring for loved ones with MS, I can sense a subtle shift in the dynamic.  I’m not saying I’m being shifted, far from it, these people are dear to me.  I’m just becoming very aware that my position has changed.  Whilst I have the history of being a carer, I’ve moved from that to somewhere else.  I’m the widower of an MS sufferer who died.  It’s a completely different place.  I no longer have to watch a loved one suffer, juggle the constant demands of being a spouse and carer or worry for the future of someone who depends on me entirely.

I’m free of those feelings now.  Others have taken their place.  I miss Trisha, I grieve the life we had, especially in the early days we were together, pre-MS.  I even miss the later, crap years.  It’d mean she’s still here.  I’d still have a greater sense of certainty of who I am or, at least, what role I had.  I guess my natural ‘tribe’ is different now.  I’m not trying to replace those who’ve stuck with me throughout, I’m trying to add to them.  I’m a widower without children: I have a new title, a new role in life, even though I don’t really know who I am.  (As an aside, is it just me or, when you look at how the death of a spouse is covered in the media, does grief only really count when the couple have children?  Is my grief as a non-parent somehow lesser than the grief of a widow/er with children?  We’re people too, you know?  We loved, we lost, we hurt.  But I digress. Again.)

So, here I am, still figuring out where I sit in the grand scheme of things.  The upside-down kid among the right way up kids.

However, on a brighter note, I’ve bought myself a keyboard and I’m going to learn how to play.  Anyone in the North East of England regional news area hears reports of strange and terrifying noise, it’s me.

Guilt

“There’s nothing you could have done.”

That was from the hospice consultant on the day Trisha died.  In the long run, that may be true, but I still have my doubts.  I can’t help but replay things over in my mind, wondering whether I could have made more of a difference.  One particular example that springs to mind is from 2016.  Trisha had begun to regurgitate food and had been referred for a barium swallow x-ray and other tests, followed by a conversation with a consultant gastroenterologist.

Actually doing the tests was a little difficult because of problems getting Trisha onto the scanning machinery (there’s a lot of accessibility work needs to be done for patients who have severe mobility difficulties and require certain types of examination; it’s not good enough to say ‘oh well, there’s nothing to be done’, but I digress…).  I was still lifting Trisha in and out of the car, and occasionally on and off the bed, so I thought this would be the best course of action to get the tests done.  It was a little more difficult because of having to reach her over to the bed part of the scanner, but we got there.

Anyway, tests done, we get to the subsequent chat with the consultant.  A man in his 70s who’d retired but was doing some locum work to help the hospital out, a fact he reminded us of throughout the appointment.  After seeing Trisha, his initial assessment was to insert a PEG tube at the hospital’s earliest opportunity.  I think my face (and maybe Trisha’s too, I can’t remember) must have gone some way to getting him to change his mind.  I knew what a PEG tube was and the idea of Trisha having to undergo surgery and have one of her few remaining pleasures – eating – taken away didn’t sit well with me.  She was already losing so much, I didn’t want this to be taken from her as well.

Trisha said she wasn’t keen on having surgery or being fed through a tube.  She liked being able to eat, too much to give it up unless she absolutely had to.  I was relieved to hear her say that.  The consultant looked at the test results again, which, bizarrely, given the symptoms, showed no or very little abnormality in swallow, and changed his mind, saying that he was happy for Trisha to manage with me helping her.  We were to contact the hospital if Trisha decided to have a PEG tube inserted and she’d be treated as a priority patient.  Looking back, I wonder if I was too short-sighted.

Should I have been more proactive?  Should I have seen what was going to come?  Ought I to have persuaded Trisha to have the PEG tube?  It’s not that I didn’t try hard enough, I didn’t try to persuade her at all.  I had the greatest influence on Trisha’s decisions.  I was the one pointing out the pros and cons of everything.  Given everything, would I have acted differently?  If I knew then what I know now…

We all have moments like that.  Crossroads where the path taken didn’t work out as hoped or has changed life for the worse, with varying degrees of severity.  You wonder what the outcome of the other path would have been.  I have loads of those too, but few of them have had such life altering – or life ending – consequences.  Maybe there was nothing I could have done in the long term to stop Trisha’s MS from taking her.  I have to trust the judgement of people better qualified to assess that.  But it doesn’t stop me wondering and wishing, and feeling guilty.

The downside of spending twenty four hours a day, seven days a week with someone is the yawning chasm they leave when they’re gone.  It’s very difficult, if not impossible, to fill it.  When your social system has gone, for one reason or another, what do you do?  Can you get one from Amazon?  Does it qualify for Prime?

I’ve been able to do things since losing Trisha that I wouldn’t have been able to do whilst she was still here.  Things others take for granted, going to watch sports, just having an afternoon out for lunch (sorry to be a pain, Fenwicks, but your chicken salads meet my dietary preferences).

The freedom is all well and good but I’m still doing it all on my own, and it’s hard going.  I can open up here but I find it really difficult to just strike up a conversation.  Even more so because I have this huge thing that colours everything I do, everything I feel.  So, if you see a middle aged bloke looking like he’s trying to fit in but doesn’t quite manage it.  He’s not weird, he’s just lost his wife – his life – and is trying to find some way back into the world the rest of you are living in.  Go easy on him.