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.
“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.
This year has brought milestones into MW’s life. She’s recently turned 50. The day itself was fun. Some friends came to visit and made her day and she had cake and balloons. It was good for her – and for me – to have a house full of people and laughter.
MW hadn’t really had time to get used to being 50 when we learned that her father passed away the other week. They’d not been able to see each other for over a year – MW can’t travel such a distance because her MS is too advanced, her Dad had leukaemia and had deteriorated significantly since we last saw him. This meant that neither he nor MW’s Mum, his main carer, could come and see us.
It’s been a challenging time since we learned of his death. MW has cognitive and memory issues, and I thought she’d need to be reminded what had happened. There are moments where she seems to forget and others when it’s obvious that she’s thinking of him. There’s a deep sadness in her demeanour, a real low mood.
Given that she couldn’t get to see him while he was still with us, she can’t get to today’s funeral. Which is a mixed blessing, I suppose. She can’t say goodbye to him but she’s not surrounded by reminders that he’s gone, which avoids provoking more low mood.
We’ve written something to be read out on her behalf, to make sure that she’s involved in a small way.
Is it possible to lose the ability to smile? I don’t mean not smiling at all as a result of mood – I get that but this isn’t about that. I mean that even when I do smile, it doesn’t seem to be received a smile. As if my smile has altered to the point that people aren’t sure if it’s a smile or not.
Maybe I never had a very good smile at all. I don’t know. 🙂
Another regurgitation/choking/coughing fit this morning from MW left me in bits. Again. I’m starting to hear occasional wheezing, too. I can’t do anything about it save lift her torso up for a few minutes and try and rub her back at the same time. Not an easy feat, I can tell you.
I try not to let her see me upset. I try to reassure her and not let her see that I feel like I’m helpless. She’s deteriorating, and it always seems like she’s one coughing/choking episode from pneumonia. All I keep being told is “there’s nothing we can do about it”. And I’m not OK with that.
Totally unrelated: where the hell did this broody feeling come from? And can it please sod off, I’m busy.
Healthcare worker/careworker/social worker/anybody: “What do you want us to do re: YW?”
What do I want you to do? HOW THE FUCK DO I KNOW WHAT TO DO?!?! This is what I’m looking at you for. A bit of guidance, share some of the load. Not bounce the issue back to me.
Isn’t it great when your self esteem is so borked – I mean, truly fucked – that you spend your time secretly trying to alter yourself so that your attributes match that list of attributes that others seem to find attractive or likeable or popular? Better looking, more intelligent, more empathetic, better dressed, etc. Wondering why Person X is fawned over while, no matter what you do, you feel like…how is it described in the film ‘The Equalizer’? “When you look at me, what do you see? The answer’s nothing. …like a bottle cap or a piece of lint…just a thing to remove”
Where’s my self esteem? In the toilet, where it belongs.
I’m finding it hard to write this without making someone else’s grief about things here. I know it’s not right but I hope they’ll forgive me, and that anyone reading this will understand why I feel this way.
Last week, we said goodbye to a friend – S. S was only 32, and had fought MS for half her life. I know her family more than I knew her. They cared for her throughout her battle with progressive MS and were with her at the end. To say that her passing was a shock is an understatement. Like many diseases of this nature, MS didn’t provide the final blow. That was left to pneumonia – a dangerous threat on its own, without having a compromised immune system.
I saw S twice in the three weeks before her passing. First, when I took MW to look round a respite home, she was a resident for that particular week while her parents took a break. She was asleep in front of the TV in the home’s common room. She looked peaceful, relaxed, and rested. And well cared for. The home’s very good and seeing S so relaxed helped put MW’s mind at ease about staying there. That’s important for any respite break – but I digress.
The second time was the day before she left. In a hospital side room, in a scene that could have come from any TV show or film. Machinery, tubes, cables – I’m sure you’ve seen something similar, either on a screen or in real life. Her mother had told me a few days before that she was in hospital and was extremely poorly. We visited her while MW was in hospital for an appointment. Spent a little of what we now know was precious time with her. S had been given some glass butterflies. Her mother gave one to MW while S had another in her hand. They were linked. Like two wings of the same butterfly, I guess.
The MS that S battled was similar to that which MW has. She was the only person I know or know of in a similar position. I know what her family had to do on a daily basis. Which is why I wished with every fibre that S would recover. That life wouldn’t be so cruel to someone so young who didn’t deserve to leave so early, or to a family who shouldn’t have to face the prospect of losing a daughter or a sister in her prime. I also know that S didn’t deserve to suffer as she did, nor did her family who saw the effects every day. She’s no longer suffering or in pain.
I’m no altruist in this regard. It didn’t take long for her family to realise what was going to happen. But I wished and willed S to recover, partly for selfish reasons. Not to prolong any suffering but for reasons of hope. Because her passing plays on my fears of inevitability. Of a taboo subject and thoughts that we can’t – daren’t – articulate.
Meanwhile, we fondly remember a beautiful butterfly who has now spread her wings. And, if the music at her funeral is anything to go by, is head-banging to her heart’s content.
I made tonight’s evening meal and brought it through to the bedroom, ready to feed MW (she spends 18+ hours a day in bed so, inevitably, some meals are taken in the bedroom). As I walked into the room, I called MW’s name and told that her meal was ready. No reply. I called again, louder. No reply. MW was lying there, eyes closed, unresponsive. No word of a lie, reader, I almost shit. I thought the worst.
MW has MS. A common symptom of MS is fatigue. MW was merely asleep.
A Husband For A Carer 