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.

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.

What is a man?

What does it mean to be a man? A pointed question. One that’s likely provoked many an hour of chin-stroking in people far more learned than me. It feels pertinent to me as a carer. Whether other male carers feel the same, I can’t say. I can only say that the question lodges itself in my head from time to time and provokes a good deal of self-analysis.

Recently, I found myself listening to Woman’s Hour on BBC Radio 4. I’m not so narrow-minded as to assume “Ugh, women’s stuff – not for me.”, or that I couldn’t find it interesting, so I didn’t tune out. After a few segments, the programme featured an interview with Jody Day. Ms. Day has founded Gateway Women, and written a book, Rocking The Life Unexpected, both of which were inspired by her search for support whilst grieving at the realisation that she will never have children. I listened to her story and how she described her feelings and experiences as a woman at the time her peers were becoming mothers. She recalled feeling at odds with people around her, as though she was viewed with a little suspicion. Perhaps she wasn’t fulfilling the stereotypical role of “woman as nurturer/carer”. This caused my pointed question to lodge itself once again.

Ms. Day’s story touched a couple of raw nerves. 1. I am a carer. 2. I have no children and won’t be having any.

If a woman’s role in life is to be nurturer/carer (I don’t believe this to be true, by the way, but please bear with me for the sake of this post), then what role does a man have? What’s the male stereotype? Provider? Hunter/gatherer? And do I fulfil that role? While I see this stereotype to be as outmoded as the idea of a woman’s sole role to be a nurturer/carer, it doesn’t stop me from questioning my place in the world. A feeling similar to that described by Ms. Day. I sometimes wonder how people view me because of what I do for MW. I suppose it shouldn’t matter but it does. It’s important to me to feel like I fit in somewhere.

I grew up in a shipbuilding area during the 70s/80s. The “hunter/gatherer” stereotype was everywhere you looked; originating at home, and reinforced at school or with friends. Add the same messages from the media and you have a powerful influence around you. When I was a kid, I assumed this was the stereotype to follow. When I began my working life (albeit not in industry) and started having relationships, I still assumed that I would be the ‘hunter/gatherer’ – especially when I thought about marriage and a family in my future (more on this later). I didn’t foresee that the ‘role’ I would have in my 40s would be so different from that stereotype.

Prior to being a carer, I didn’t know a single male carer. None whatever. Of course, I do now. I’ve met quite a few, either in person or via Twitter. But prior to 2005, I had no concept of what it entailed to be a man who is a carer. It was a cultural role that never existed for me to learn about. It’s very rarely, if ever, covered in the media. I know there are occasional media references to men who are carers but their role in the cultural world around us is never explained. It’s as though they’ve just beamed down and started caring. I didn’t get beamed down. I’ve been through (and am still going through) a self-examination in terms of who I am as a man, similar to Ms. Day’s self-examination as a woman. I’m not the “provider” that I expected to be. I’m not going to go into detail about our financial affairs but our circumstances dictate that MW’s share of the household income is higher than mine. I am a full-time carer. A role that doesn’t appear to be valued too highly, regardless of gender. I am a male, full-time carer. I have assumed the nurturer/carer role that society appears to deem only suitable to women. Even anthropologists are making inferences to the size of caring males’ testicles!! (Don’t believe everything you read!) When I tell someone I’m a full-time carer, the reply tends to start with, “Oh…..”, followed by a pregnant pause. They’ve no frame of reference for meeting someone who has that role by circumstance rather than by choice, as a care-worker might. It’s as though what I do – and by extension, who I am – isn’t “natural”. I might as well be an alien, or a talking animal. So, what does this make me in the eyes of other people?

The second raw nerve was about children. The Women’s Hour interview continued, and referred to women who find themselves childless by circumstance. (That is, they’ve not actively chosen to be child-free.) This is a truth I’ve had to come to terms with myself. I don’t have any children, and I’m not going to have any. Both Ms. Day and the interviewer acknowledged that there are a number of men who find themselves childless but their experiences are different. She’s right. But it’s no less hard to come to terms with. Just as I’m not a carer through choice but by circumstance, so I’m childless in the same way. MW and I wanted to have a family. We tried for ages but it didn’t happen. Abortion has been part of both our lives so we assumed that there was no biological issue. We considered IVF. However, at that time, our energy was taken up coping with my Dad’s illness. MW’s symptoms began very soon after Dad died. The severity of MW’s initial MS relapse put a stop to our dreams at the time, and its ever-debilitating progressiveness has done the rest. Although we both know what the reality of the situation is, we don’t discuss it often, save for brief “I wish we could have been parents” conversations, prompted by a TV programme or seeing a cute child when we’re out. But these conversations never last long. Rationally, I realise that caring for MW is too demanding to consider adoption or fostering. But I feel very much unfulfilled as a man – a propagator of my species. The prospect of my genes dying with me leaves a visceral scar.

Meanwhile, all my friends have gone on to become parents. (MW’s friends have tended to be a bit older than her so the dynamic is a little different) Ms Day spoke about how she felt a greater distance from her peers as they all had a common thread that maintains their interaction – i.e. having children. I guess it comes naturally for parents to talk about their children: schooling, growth spurts, etc., even to strangers. Becoming a carer is a great way to lose friends. Not becoming a parent is another. I sometimes sense people my age struggling to talk to me once they ascertain that I don’t have children. It’s as though their entire catalogue of conversation is geared towards their children – either as a conversation starter or as a specialist subject to the exclusion of everything else. Since I don’t have children, it’s assumed I won’t have anything in common with them – which I find strange – so conversation stops. Perhaps I should turn the tables and act awkwardly towards non-carers? No, maybe not.

You might read this and say, “what does it matter what other people think?”. And you would probably make a very valid point. The thing is, I look at myself in the mirror sometimes and wonder how I match up against the archetypal male ideal (which may or may not exist) that society/media would have me measure myself against. I also wonder how other people score me against that same ideal. Not enough to keep me awake nights but I do think about it.

So, what does it mean to be a man? Maybe it’s all just bollocks.

Epiphanies

It’s been a time of epiphany. Certainly for MW. Progressive MS affects MW in a way whereby we know things are deteriorating, which is to say that we deal with the deteriorations on a day-to-day basis, but don’t really notice how things have worsened. The times we notice the deteriorations are:

when we see someone who we’ve not seen for a while (and is honest enough not to resort to the catch-all “ooh, you look well” in the absence of anything else to say), and

when MW can no longer do something that she could previously do.

Recently, there have been quite a few times like those at number two. I’ve written in previous posts that MW’s legs only move through spasm but I’ve not made a point of highlighting this to her. Due to the fact that I have a fair idea what reaction will follow. Besides, I’d feel a proper shit for ultimately saying, “hey, your legs don’t work now”. No matter how delicately you try to phrase it, you’re pointing out something very distressing.

There was no need for me, or anyone, to point this out to MW this month. She’s taken to trying to move her legs because she now realises that she can’t. And she gets upset and frustrated. Which makes her try harder, which makes her more upset and frustrated when she can’t, which makes her try harder….. And so on, and so on. As I wrote right at the beginning of this blog, I have no idea how it feels to have MS or any other disability. I don’t know how it feels to lose the ability to do those things that most take for granted – walking, eating, writing, etc. I’m not going to try to guess how it feels because I don’t feel it. I can tell you how I feel to witness someone going through it or how I feel dealing with things as a carer. And I can write about how MW reacts to the realisation that these things are taken from her. But I don’t know how MW feels.

When I say she gets “upset and frustrated”, I’m really skimming over a wide range of emotions. First, there was mild amusement. Like when you try any challenge for the first time. This quickly passed into more determination. I could see the effort and determination she was putting into trying to move her legs. I saw that any response on their behalf would have satisfied her – a challenge passed. But the more the cycle continued – re-doubled effort to no avail – the less animated the response was. The more resigned the tone of speech. The quieter the report of realisation.

It’s one thing to try and get a handle on your own feelings. It’s another to try to be a support to someone else when you know that, “it’ll be alright”, are pretty much the most hollow and useless words you’ve got, yet they’re the first that spring to mind. What the hell do I say? What do you want to hear when you’re in that situation? Each epiphany is like a bereavement insofar as they are realisations of something lost. MW deals with it in the best way she can. She’s remarkably stoic. I don’t know if I could deal with it all with the same spirit.

There have been other epiphanies this month. MW’s Dad is pretty ill. He has leukaemia and his blood count has dipped very low recently. He has also been diagnosed with shingles which may or may not have a basis on or connection to his leukaemia. MW hasn’t seen her Dad for two years and she’s getting more concerned that she won’t see him again. He’s in his 70s, which isn’t the oldest parent you’ve heard of, but combine his age with his condition and you can understand her fears. We’re trying to organise a trip to the other end of the country to visit her parents. This feels like positive action so isn’t quite so sombre.

It was my birthday this month and MW got me a card. But when it came to writing it, she couldn’t. Her arm strength and control have now deteriorated to the point where she can’t write legibly. I’d have thought that this would have upset her more than it did. She apologised for having to get help with her message in the card and for her inability to sign it legibly. It didn’t matter to me but she was still very apologetic. Despite her apology, she didn’t seem quite as upset as she does with her legs. I guess dealing with one epiphany at a time is enough to be going on with.