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.

Yesterday would have been our wedding anniversary.  I remember, right from when we first got together, things being very stressful – especially her divorce and my court case.  Trisha would say to me that all she wanted was for me to hold her and tell her it was all going to be OK.  Which I did.  Then and many times during our years together.

Right now, I’d like to be held and told that it’s all going to be OK.

Oh, well.

The loneliest number

It was Trisha’s birthday over the weekend. The first birthday without her. I wanted to do something special to commemorate it.  I took myself into Newcastle with a two-item to-do list. Light a candle and go the football.

After a galvanising coffee, I went to St Thomas the Martyr’s church and sought out the candles. Not through any kind of spirituality on my part, but I know Trisha would have done it, so I did the same. The commemorative candles stood on a rack in three rows. Next to the rack was a tree with requests for prayer in the name of the dearly departed tied to it. I felt a bit like a fish out of water already so I stuck to candle-lighting. I took a candle from the pile on the rack, left my contribution to the collection, placed the candle in the special three-pronged holder and struck the match.

I’d just about got it lit before the floodgates opened. Shoulders shaking, unable to move, even out of embarrassment. After some minutes, I find my way to a pew at the back of the church, only to realise I’d not brought anything for this pretty obvious eventuality.  I know there’s a cafe in there but no idea if there’s a toilet. It’s no good, I’ll have to find someone to ask. I’m in an almost deserted church on a Saturday morning–definitely out of my comfort zone on both counts, sobbing while asking where the toilet is. A vision, I’m sure. Mind, I’m sure the people working there are accustomed to seeing similar things.

I can’t stand about here all day, dripping from various bits of my face. I said I’d take her to the football. Not literally, obviously. I’m not taking the bag with her jar of ashes in. That’d be a step too far, even for a grieving widower. But I’d be taking her, figuratively, to St. James’ Park, what with her being a NUFC fan. “That’s my granny’s doing. She was from Byker.” If she’d said that once, she said it hundreds of times. More so as her MS advanced and her memory and cognitive skills diminished. She’d have loved the atmosphere of the ground, even if the game itself left something to be desired. She’d have hated the cold, though. She always envied her brother because her birthday always coincided with bad weather, whilst his was in the spring and he could do more.

As her birthday wore on, I felt more lonely. I was doing all these things that had a special meaning but couldn’t tell anyone. I was aching to tell everyone but couldn’t just blurt it out of the blue. It’s not something that the Bumper Book of Making New Friends As A Widower recommends as an introduction to conversation. In fact, it ranks among its top ten list of don’t-whatever-you-bloody-do’s. I started to resent other people just getting on with their own Saturday. Which they were perfectly entitled to do. I guess it’s another sign that time is passing without her. And that it’s not fair. She should be here. Whether her condition allowed her to really enjoy anything like this is another matter. I’m thinking in purely selfish terms.

I miss her. I keep hearing her say “I do love you, Simon”. Not just a declaration in and of itself but also her way of acknowledging the situation and my role within it as her carer. A ‘thank you’ of sorts.

Throughout our time together, I never said goodnight to her. It was always ‘I love you’. Every night–especially at the hospice, every time I left her room for any length of time–I wanted to make sure that, if anything happened to her, the last words she heard me say were “I love you”.

They were the last words I ever said to her, “I love you with all my heart”. I’m still not ready to say goodnight to her. Or if I ever will be.

So this is Christmas.

So this is Christmas….and how are you getting on?

There’s a train of thought that says the grief that follows the death of a spouse should be kept personal.  Which is a shorthand for the fact that a lot of people can’t or don’t want to deal with the feelings of the widowed (or bereaved, in general).  Or they don’t want to hear that it’s not a clean, upward curve of ‘getting over it’ but a messy splodge of scrabbling around, trying to make sense of what’s happened whilst, at the same time, trying to find some idea of what your future’s going to be.  But people keep asking.

The real meaning behind the question is like the real meaning of Christmas: it differs, depending on the individual.  They range from “I’m genuinely interested and I’m ready for whatever reaction you have” via “I care and hope you’re not doing badly but please don’t break down because I have no idea what to say or do” to the rictus-grinned “I’m only being polite. I’m really looking to reinforce my own feelings and skirt over yours. Don’t you fucking dare bring me down”.

After years of fielding questions about Trisha’s health deteriorating, you quickly learn to spot which is which.  Most people fall into the middle category, which I can understand.  There are some notable and very much appreciated exceptions who come into the first category.  The latter category is quite easy to deal with, barring the good actors who’ve had a bit of a shock but, frankly, they get what they deserve.

So, how am I getting on?  Shit, really.  I keep searching for ways to cope – reading books and watching films about bereaved spouses to see if there are any clues I can glean.  Some are helpful, others offer an excuse for a good weep and a wallow (Mum’s List – Rafe Spall is very, very good).  I know, I know – I don’t need an excuse beyond what’s happened.  The films provide cover.

I’m not feeling festive.  Trisha left 9 weeks ago on Christmas Day.  She absolutely loved Christmas but it feels empty without her.  I’m sure anyone who is experiencing or has experienced the first Christmas after bereavement has a similar feeling, even if it varies in intensity.  I’ve put a few decorations up but it’s been a real effort.  And if I hear Mud’s “Lonely This Christmas” one more time, I am going to let it all out and everyone will just have to cope with it.

I’m tired of the fake smile.  I’m tired of trying to keep up in the jollity stakes.  Being surrounded by TV and other media images of happy couples and smiling families is particularly hard when mine is shattered.  Despite having my mother with me for the past couple of months, I still feel very, very lonely.  It’s not easy continually holding back tears.  Which probably explains the sleeplessness, panic attacks and periodic meltdowns.  Luckily, they’ve only happened at home.

This is not to say that it’s all darkness and shite.  I caught myself thinking about what kind of home I want to live in.  I don’t mean the bricks and mortar, but what I’d put inside.  What I’d put in differently from the furniture I have now.  What kind of environment I’d be happy to call home.  These are the first little bits of future-thought creeping into my head.  Despite them being tiny chinks of bright in comparison with what I’ve written about Christmas, they’re a start.  I’ll take that.

So this is Christmas, and this is how I’m getting on.  Let’s hope the New Year’s easier.  Than the one that’s just gone.

So, I’m standing in Clinton’s, looking at all the cards with “To my special wife” and “To the one I love…”, while “All I Want For Christmas Is You” is playing.

I was *this* close to full meltdown.  I got away with a crack in my voice at the till.

Good grief

This is the first post after losing Trisha.  Seeing those words still causes that now-familiar sting in the eyes and knot in my stomach.  Three weeks on, I still don’t know whether and how much I should tell people.  Do I get my disclosure in first, just ‘out with it’? Or should I keep quiet and wait for people to ask why I’ve a face like The World’s Most Slapped Arse Ever™?  Do I wear my grief on my sleeve or not?

Is there such a thing as ‘good’ grief?  I mean, is there a ‘proper’ way to grieve?  I have no idea.  Logic tells me there is no proper way to grieve, only a personal way that’s peculiar to each individual going through the process.  (Is it just me or does ‘process’ seem like a very unseemly word to describe the sequence of emotions and experiences felt by the bereaved?  It’s something that’s too human to have such a logic-driven, robotic word attached to it.  Just thinking aloud.)  So, why am I thrashing about, trying to figure it all out?

I’ve started to search out all things grief-related.  Books, films, TV programmes, newspaper articles, websites, people on social media in similar circumstances….right now, I’d take runes and tea-leaf readings if I felt they’d help me find my way (I don’t, but as I get more desperate, watch this space).  I’ve become a grief addict.  Hell, I’m even watching Sleepless in Seattle as I write this.  I daresay I’m looking for answers.  The only answer I have for any aspect of life right now is “I don’t know”.

I don’t know where I want to live – as we live (live…lived, whatever…) in a rented bungalow specially adapted for people with disabilities; I can’t stay here, someone who’s been on a waiting list for goodness knows how long will need it.  I don’t know about Christmas, I don’t know what I want to do in life, I don’t even know who I am (I’m the Bourne Widower!).  For sixteen years, I was part of a whole.  Now, I’m a part that’s adrift.

I don’t have any answers.  I don’t even know what the right questions are.