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.

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.

Futility

“Medically futile”. I’ve never heard two words that have cut through me more than those. No matter how warmly they are delivered, they are the coldest of words to use in connection with a human being. Particularly one you love. I’ve heard them twice recently, in the same meeting. Both instances regarding the use of artificial means of providing food or other nutrition to MW.

She will not be given a PEG tube – it would be “medically futile”, i.e., it won’t make any difference to the final outcome. Now she won’t be given a nasogastric tube for feeding, either. Bizarrely, she’s already had one which she took to rather well but, for some reason, it came out. They won’t put one back in. It, too, would be “medically futile”. She’s not taking food or fluid orally, she’s lost the ability to swallow. And it all frustrates the hell out of me.

I used to be a civil servant. We had an abbreviation that we applied to a case that cost more to work than its maximum forecasted result: NWFP – Not Worth Further Pursuit. It feels like this has been written on MW’s file. That she’s no longer worth the effort. Rationally, looking at it with cold logic, I get it. Emotionally, it can fuck off: she is infinitely more than an effort/benefit ratio.

People keep asking me how I am – the medics in that meeting, family, friends, neighbours. They already know how I am. Or can guess. How am I? I’m hurt. Angry. Frustrated. Sad. Empty. Numb. I am in mourning. For an event that hasn’t happened yet but is going to. Pre-grief grief. A few days ago, half undressed and ready for the shower, I had a meltdown. A full-on, hands and knees, snot and sobbing meltdown. “I just want her back”. Repeatedly.

Twelve years ago, just before MW was diagnosed, we were waiting for the results of her MRI scan. Her vision was compromised and she was struggling to walk. The options on the table regarding possible diagnosis were MS and a brain tumour. I remember vividly the words of a colleague – an MS sufferer. “If it’s MS, it’s not a death sentence.” I know she was trying to reassure me that her experiences with MS proved that the disease wasn’t so much of a curb on her life. That the alternative option was worse. I know that she couldn’t know what was going to happen. Maybe one day I can accept what she said at face value, but today is not that day. Today, I’m bitter and resentful. Today, to save MW, I could murder the world.

At times, I’ve wondered if me being frustrated while caring meant that I was cold. No. I was just stopping myself from feeling what I feel now. Utterly helpless and desperate for things to go back to how they were. Before, the frustration could be tamped down by doing something practical, to enable us to go on. Now I can’t do that. There is no going on. There is no practical thing I can do to make things easier. I can only watch, stupid and helpless, while this disease slowly and sadistically steals everything that’s left of MW. I just want her back.

A couple of numbers

Four thousand five hundred and seventy-two. That’s the number of days I’ve been providing care for MW in some form or other. Right from the first symptoms of her MS: a bit of a limp and eyesight problems. Back then, it was just guiding her around as much as I could. There have been many stages of gradual progression of symptoms.

The first year following diagnosis: coping with blackouts and begging her to eat because she stopped eating, thinking she’d get fat from being immobile. Dealing with her continence issues, including stopping a London – Edinburgh train at Doncaster so I could take MW to the disabled toilet and change her clothes, as there was no disabled toilet on the train and she’d had hot coffee spilt on her. Her gradual loss of mobility: lifting her in and out of cars, on and off beds, chairs, etc. Feeding her for the first time: an unsaid but mutually acknowledged sense of a loss of dignity.

There have been good times post-MS. My 40th birthday year. The year we went on holiday to Europe. We met friends and had fun gadding about the continent’s fashion capitals. Getting giddy because we were ushered past the velvet rope in the Louvre to get that bit closer to the Mona Lisa (one of the few advantages of being a wheelchair user). Having a private tour guide to show us around the Vatican and Sistine Chapel. Shopping together in Milan and the hotel’s delicious chicken sandwiches. My eyes get a little more misty each time I look at the photos. Of how things were.

One. The first. Today was the first day I told someone official that I can’t cope any more: I can’t keep going to the well of strength because it’s almost dry. MW is in hospital after her swallow became compromised. I couldn’t tell if fluids were going down properly or not. There was no evident deliberate swallow. She’s due to have a PEG tube fitted and that operation has been brought forward. The risks involved are scary: more so given MW’s progression.

This hospital admission has been the most upsetting because she seems so weak now. I think I’ve cried every day bar one. Tonight was rough. Her breathing rate was a real cause for concern as it had got so low. Every conversation seems to have that sombre tone – do you want us to resuscitate in the event of…?; do you want us to ring you during the night if her breathing rate falls below…? I can’t even bring myself to type the words.

Those of you who know me already know that I lost my Dad to cancer two months before MW and I were married and five months before her symptoms began. What you may not know is what happened when he died. I was all set to go across from where we lived to my parents because the Macmillan nurse had said things were getting towards the end and I’d said I wanted to be there. I’d also started with panic and anxiety symptoms and had a doctor’s appointment that same day. I’d travel across the next morning.

You’re probably way ahead of me already. I did travel across the following morning, thanks to a lift from a friend of my Dad’s (now no longer with us. Brian was one of the kindest, most selfless men I’ve ever had the privilege of knowing). A journey of 110 miles, give or take a mile or six. Twelve miles from their home, my mobile rang. He’d gone. I’d not seen him at the end. I got to their house to see his body lying in a hospital bed in their front room. Shock, sweet tea, grief.

Looking back, I preferred it happen that way. I couldn’t watch him take his final breath and go. I know I will have to be there when MW takes hers, whenever that will be. I know she needs the comfort. I know she needs the reassurance and love that we – her family and I – will provide. I’m just not ready for this to happen now. This deterioration just seems so sudden. There seems to have been no time at all between listening to her giggle with her Mum and a carer and seeing her in hospital, reduced to being made up of hourly observations, fluid balance chart, IV fluid intake rate…

This pretty much all boils down to me saying that it’s not fair. She doesn’t deserve this. Why her? Why does this thing keep making her worse? Why is it going to take her from me? Screaming won’t change anything, I know that. I’m scared. I’m struggling. People keep telling me that if I wasn’t this way, I’d not be human. It means I care. That being with her despite this also means I have strength. Somewhere, I know this – I just wish that strength didn’t hurt so much.

Confession.

Forgive me, Tumblr, for I have sinned. It’s been two months since my last post session. And woe betide any Tumblr that isn’t updated regularly.

I’m not clearing the path for an announcement that I’ve suddenly had a conversion to faith. I haven’t. I’m a quiet atheist. Which is to say, if you have a faith, good for you. I don’t share it but I won’t have a dig at you about it. I don’t believe in spirits, ghosts, fairies, etc. either. Which is a good thing because MW has had more ‘sightings’ of things/beings that has unnerved me a bit. Not in the sense of “what might there be in the house?” but in the sense of “what effect is MS having on her?”. When you’re asked to “stop the dead people from moving me and picking at my sore”, it’s hard to know how to react. I don’t want to make her feel stupid or humiliate her – these things are evidently very real to her. But I can’t help her with what is plainly not there. All I can do is reassure her that she’s not being moved, there’s no-one picking at her sore, and there’s no-one/nothing in the house that has any intent to harm her. So far, she’s believed me. What’s caused her to see these things? I have no idea. She does have a susceptibility to urinary tract infections, and she had one earlier this year. But the frequency and repetitiveness of the sightings can’t be down to just that. My next guess is that they are either side effects of the interstellar array of pain medication she’s taking or there are MS lesions affecting some part of her brain that is responsible for governing her perception of reality. I had a chat with the MS nurse. She reckons that side effects would be a likely explanation. Right now, the benefits of the medication outweigh the risks of the side effects, so we carry on.

Other issues include: an overzealous care company employee who looked to impose a hospital bed on MW. Apparently, the bed’s too high and is causing problems for one of the carers. None of the carers had mentioned this to me, nor had they written about it in the daily log. My insistence that current sleeping arrangements are more than adequate was met with, “I’ll have to take this to social services as a ‘safeguard’ issue”. This sent me into a bit of a spin. The idea that, out of the blue, someone can, de facto, impose a change on your living arrangements with little or no regard for how it would affect you is pretty frustrating. I suggested a compromise but that was refused by said minion. A compromise that was accepted following lengthy consultation with social services and an occupational therapy visit. In future, I’ll be extra careful of the influence of care companies.

Right, I’m off to do my Tumblr penance. Go in peace.

First foot.

Threshold. I’ve heard or seen this word a few times this week. It’s New Year and my Mother belongs to a generation for whom the tradition of ‘first footing’ is still alive – crossing the threshold with items to bring good luck for the year ahead.

The same word cropped up in a couple of other conversations over Christmas/New Year. I was talking about MW’s condition with friends who I’ve not seen or spoken to for a while. It struck me that a progressive condition like MS* can be looked at as a series of thresholds that have been crossed. That is, each new symptoms felt or each lost ability to do something independently is viewed as a threshold crossed. Or, in the most recent case: each new, more powerful medication required to alleviate the effects of symptoms on her body.

This year has already seen MW cross another threshold. The neuropathic pain she feels has been so bad that she’s exhausted what the specialist nurse considers her first line of attack for pain relief, i.e. a combination of tramadol and pregabalin. MW has now been prescribed buprenorphine patches – a very strong opioid analgesic. In essence – morphine.

To me, morphine brings with it connotations of palliative care. Not the kind of phrase that instils positivity, despite the fact that palliative care is something that is intended to help pain relief in a wide range of chronic conditions, not just those towards end of life. The morphine is helping but the pain is tolerable rather than eradicated. No-one’s actually said as such but the demeanours of both the nurse and GP, and the way the drug is handled by pharmacists, tell me that this is a fairly major development in MW’s condition and medication history.

Other “thresholds” have been crossed in the last few weeks. MW is suffering more from weakness and tremor in her hands/arms. Increasingly, there are times where she can’t hold/control cutlery and cups – particularly when tired – and I have to feed food and liquids to her. I also have to “feed” meeds to her as she can’t hold and control anything as small as each tablet she has to take. And MW’s inability to move is causing new pressure sores on her legs/feet. Inflatable “boots” have been ordered to try and alleviate them thanks to a fortuitous surprise visit from a district nurse.

So, we first foot into another year of MS. With a bit of luck there won’t be too many thresholds to cross during the year ahead.

*Disclaimer: Yes, I know that MS isn’t an automatically progressive condition but this blog pertains to MW’s condition which *is* progressive. Why didn’t I clarify it? I am doing. This is the clarification!

It’s NOT better to burn out…

It’s been a hell of a week. Some friends came to visit last weekend so I took them back to the airport on Monday. I was very sad to see them go – tears at departure and all that. Then straight home to get my wife dressed and ready for her recreation time. It’s becoming increasingly difficult to lift her as her weight is deadweight because she can’t feel her legs, let alone move or use them. Still no prospect of a hoist on the horizon.

Woke up on Tuesday with a pain in my chest. A visit to the doctor and I’m diagnosed as having a muscle strain. It makes my “lifts” painful to do. And I’m ITCHING to get back to my exercises.

Yesterday, I’d pretty much reached tether’s end. I was having another secret weep in the kitchen and I was all set for opening the door, running away and not looking back. I was tired, fed up, and in desperate need of a break. A proper break – proper respite. Not a couple of hours here and there. A rest.

I had an hour with a counsellor yesterday afternoon ( a coincidental appointment ) and felt a little more relaxed at the end of it. I’ve also been able to chat with friends on Twitter, whose help and support has been invaluable.

I am now talking to my wife about the prospect of her taking some time in residential respite. And it can’t come a moment too soon.