I'm Simon. I was the husband and carer of a woman with progressive Multiple Sclerosis. Warning: very blunt and frank content.
It’s been four weeks since you had any food, yet I’m absolutely astonished by your resilience. I don’t know how you still have the strength to open your eyes.
I can’t help but assume that this is going to be a long, drawn-out decline. And I’m undecided whether this is a blessing or a curse. I can’t let you go but I hate seeing you suffer. We’re on your time now, sweetheart. I’ll take as much time as you want to give me.
“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.
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.
Continuity announcer: “Next on Radio 4: more from the A Husband For A Carer series. Today’s episode: ‘Wishes’ – read by Tom Hardy” (What? I thought an A-lister might keep people interested.)
The conversation has started. The subject of “24/7 care in another setting” – not my choice of words – is out in the open. I keep being asked whether I’m prepared to carry on my role as informal carer. I don’t know. I really don’t know. It’s not just a question of my being prepared to do it. Is it in MW’s best interests? What if I’m not prepared to? What if me not continuing to care goes against MW’s wishes? Are my wishes more important? Do they carry more weight? What about the guilt if I stop? What will the future hold – either way?
The PEG nurse visited this week and spelled out the situation regarding the ins and outs – well, just the ins – of having the tube inserted. MW’s dystonia means any insertion would have to be carried out radiologically, i.e. by using x-ray guidance. Weak cough effort means she’s a sedation risk. Her cognitive impairment is a poor indicator for the PEG tube – “dementia patients don’t do well with PEGs”. Whilst MW does have some – and no real measurement has been made of just how much – cognitive impairment, she does still retain the capacity to communicate her wishes. There are four criteria set out by the Mental Capacity Act 2005 to measure an individual’s ability to make an informed decision regarding their own welfare:
• to understand the information relevant to the decision
• to retain the information relevant to the decision
• to use or weigh the information, or
• to communicate the decision (by any means)
MW is OK at numbers 1 and 4. Numbers 2 & 3 are a bit sketchy. This is the professional assessment of a nurse, not my hot take. There’s a sense that information is heard but not really understood to any great degree. There is a lot of information to be taken in about the PEG and whilst MW said that “if it helps, then it’s worth giving it a go”, I’m not at all sure she understands the risks connected to the procedure itself that were explained to her.
It’s the same with the conversation about care. I know she hears the words and she’s expressed her opinion but, again, I’m not sure whether hers is a rational decision or an instinctive, emotional one. She woke me up in the early hours of yesterday morning, panicked and shouting “I’M DYING! I’M DYING! I’M SWALLOWING SO MUCH SICK!!”. She’s woken up screaming many times before but this is the first time she’s shouted anything coherent. I comforted her and got her off to sleep again. This tells me that something’s playing on her mind but I don’t know what. When I asked her, later in the day, what had scared her, she couldn’t remember anything.
This could be the talk of care homes or the fact that recent conversations about her condition (conversations taking place around her as well as with her) have taken a very serious, almost sombre tone. Is she scared of going into a home? Or is she scared of dying? From a procedure or from the MS? When I ask her how she is, she replies with her usual “I’m fine”.
The memory loss and personality shift is so disturbing that I’ve stopped comparing today’s MW with the woman I met and married. Earlier this month, I had to remind her who I am and how we met. She also keeps asking if she’s lost her Dad (who died earlier this year), as though she’s just heard the news and is reliving the experience. Forgetting a bad dream/sequence of thoughts is one thing, forgetting important parts of life is another. She also shows a liking for things that the MW I knew would have hated and, frankly, would have taken the piss out of. There’s a kind of infantilisation occurring (that I’ve written about before) that has changed her completely. I just have to accept that MW is a totally different person now.
The care MW requires is no longer the same as it was before she went in hospital. It was probably not enough for her then. I now know what deterioration has occurred and what interventions are advised. It all feels so surreal. I feel like I’m drowning in responsibility. I just don’t know if I can safely deliver what’s required. Bear in mind that, carers aside, it’s just me. I see this vulnerable woman and I wonder if, after 12 years of caring for her since diagnosis, I’ve reached the limit of what I can do. Scared of making the tiniest error that may have far-reaching and devastating consequences. I already feel guilty because of how things have progressed (yes, I know, it’s not my fault. I know there’s nothing I could have done.). I couldn’t bear the guilt or the grief of getting something catastrophically wrong.
The conversation – and my swirling head – continues.
They don’t teach you about this in carer school – how best to manage an acute, chronic condition on a weekend when frontline health services are either unavailable or greatly reduced?
If you’re eating, you may wish to look away now.
MW has an issue with her bowel, i.e. it doesn’t function properly at all. Her MS-affected nervous system causes her intestine and bowel not to move correctly and the medication she takes to counteract pain – opioids, etc – list constipation as a side effect. It’s touching cloth…sorry, touch and go as to whether I enrol her into Constipates Anonymous, where she can say “Hello, my name is [redacted] and it’s been 14 days since my last significant stool”.
I’m not taking this lightly. I’m trying to make light of a situation that, frankly, is making me fucking seethe.
You see, she takes a lot of medication to deal with her bowel problem. Oral softeners and laxatives by the shovelful. None of which seem to have made any difference at all. In the last few days, community nurses have given an enema and a suppository. No effect. Last Friday, the nurse team asked for a stronger enema to be prescribed. I had to go out, leaving MW in the capable hands of the carers, expecting to return home to a card from the chemist asking me to pick up the item the following morning. Got home. No card. Hmmm…..fair enough. I’ll just go to the chemist in the morning and see if they’ve had a prescription faxed through.
Later that night, I get a message from the carers telling me that the GP rang while I was out and spoke to MW. Bear in mind that this is MW’s named GP and that MW has little understanding of conversations or memory. And that this GP – who has access to her full medical history – should be fully aware of this. I ask MW about the call and, sure enough, I was met with a blank look. From what the carers know, a prescription was sent to a chemist which I should pick up. So I did. Yet another oral laxative.
Long story short – I’m sitting here on a Sunday night, waiting for an ambulance to take MW to hospital on the recommendation of an out of hours GP. MW still hasn’t shit. It’s making her extremely sleepy – more so than usual. I rang 111 (non-emergency out-of-hours NHS line) at 3pm. I’ve been triaged twice, explained the situation to a nurse for half an hour, gone through the whole bloody thing again for a further half hour to a doctor and told that MW should be taken to hospital for an X-ray to see if there’s a blockage. An ambulance has been requested. MW has been waiting in her wheelchair for five hours. Not as comfortable as she’d be in her recliner chair or bed. I’m expecting a third call apologising for the delay and telling me that the ambulance service is under extreme pressure due to emergency calls. Fair enough. I get that they’re underfunded and overstretched. But my main concern is that even if the ambulance arrives right this second, MW is going to have to wait for another 2-3 hours in A&E before being seen by a doctor. There’s little prospect of an X-ray being carried out tonight. The GP already told me that there’s no bed available for her to be admitted. So, in effect, she’s going to go into a 15th day of no bowel movement.
The thing about this is that it’s not trivial. Any exacerbation of one symptom has a knock-on effect on everything else MS-related. Particularly fatigue. That’s the beauty of a condition that affects the entire nervous system. Something seemingly innocuous can have a severe knock-on effect on everything else MS-related, e.g. fatigue, breathing, regurgitation of food/liquid and subsequent choking/aspiration.
There’s no guidance for carers on what to do in these situations. We make it up as we go along and hope to fuck that we don’t make a mess of things. It’s a matter of trust. And I’m running low on healthcare professionals that I *can* trust.
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.
I’m tired of all the responsibility.
A Husband For A Carer 