Trisha’s long struggle against MS has come to an end. She passed away this morning. I’m heartbroken.
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.
How can you smile when I talk to you? I mean, I’m glad you do: it’s a sign that you’re comfortable, not in pain or distress. Despite what’s happening to you, your body failing you, you can still manage to move your lips into a slight smile. You’re not even fully conscious, yet you seem to understand what’s going on around you enough to react with a smile. At least, I like to think it’s a smile.
I smile. I smile at you, obviously. Only, mine is a weak smile. Not the full lights-up-your-face smile that you’ve always had. That you’re known for by everybody.
These days are a kind of limbo. Is it an adjustment period? Are you being this calm so we have time to process and prepare for what’s coming? That might prompt questions of spirituality. A spirituality I don’t have.
All my rationality tells me is that you’re comfortable, not in pain and not distressed. That this bastard of a disease that’s robbed you of absolutely everything is giving you an easier time at the end. It owes you that much.
For the last 6 years, I’ve only referred to my wife here as MW. My cack-handed way of trying to offer her some kind of protection. Safety in anonymity, that sort of thing. Given the prognosis, I don’t think it’s fair to continue referring to her as MW. She deserves to be called by her name.
Her name is Trisha. We met in York and we’ve been together for nearly 16 years. First, we saw each other on the sly, she was married. Her relationship was violent but she said she felt stuck in it. Once she’d made sure I meant what I said when I told her I wanted to be with her (it took a lot of telling but it was worth it), she left her husband (no small feat but it didn’t end up being the morass we’d both feared – it could have gone horribly badly) and we found a little flat above a hairdressers that was our home until about a year after she was diagnosed and she could no longer manage the stairs.
A couple of years before Trisha was diagnosed, we went on holiday. A two-week Caribbean cruise that took in some of the areas that have been hit recently by Hurricanes Irma, José and Maria. I remember Antigua most of all. We’d been on a sightseeing tour of the island and we’d been taken to a market area afterwards. A stall was selling the brightest sun dresses and Trisha had her eye on a couple of them – one white, one yellow. For some reason, I had all our cash on me (insert something about the patriarchy here). Trisha wanted to buy these dresses and was explaining to the stall owner that her boyfriend was away taking photos of something or other.
I was enjoying looking out to sea and just generally feeling relaxed and content when I heard the stall owner shouting. She was pretty bloody loud, but she wasn’t shouting in anger and I wasn’t expecting her to be shouting me, so I didn’t pay much attention.
“Simon! SIMON! SIMON, WHERE ARE YOU? TRISH NEEDS YOU!!”
Embarrassed (mostly because the owner probably thought I was some kind of control freak), I ran over and gave Trisha the wad of cash, apologising profusely. She bought them both and still has them. Even now, we smile together as we remember that holiday and the woman shouting, “TRISH NEEDS YOU!!”. Funny how some words stick in your mind, and how they gain meaning as time goes on.
“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.
It’s not the despair… It’s the hope I can’t stand.
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.
As often happens with this blog, I don’t really know what to write. I just feel the need to get something out of my head. Sometimes, it’s something that I’ve seen or heard that’s touched a nerve. Others are me trying to make some kind of sense out of the jumble of thoughts and feelings that swirl about me. This post is a result of the latter. I’ll warn you now, a lot’s happened in a short space of time. This is likely to be a very long read. Give it a while and it’ll be serialised over a week on Radio 4, read by an actor whose voice you recognise, but whose name you can’t quite place.
MW is in hospital with an infection. At least the fourth or fifth in a row. She’s been diagnosed as having a urinary tract infection (UTI). This is the risk you run with a suprapubic catheter – one that’s permanently inserted through your skin into your bladder. She’s needed a catheter for a few years now. UTIs come and go with, now nonchalant, regularity. These infections vary in severity – sometimes to the point of requiring an emergency ambulance. This was one of those times.
As I have been informed, MW is a sepsis risk and any time she passes little or no urine either through the catheter or by bypassing the catheter and urinating normally is a real cause for concern. Medical treatment is required immediately. We’d been giving MW oral antibiotics by the bucket recently but she didn’t seem to improve. Confusion and delirium, along with being overly sleepy and/or unresponsive, were the signs that something was definitely amiss.
What I wasn’t prepared for was the conversation I had with a specialist. The specialist. I’ve written before about how I don’t really notice deteriorations in MW’s condition – I see her all the time, so changes are too small to take in – it’s only when there’s a catalyst event that it all makes sense. This was one hell of a catalyst event. The conversation was stark and I wasn’t prepared for it. “We ought to discuss what happens when MW has an infection that they can’t bring round? Do we want them to resuscitate?” Sorry, what?
MW has deteriorated a lot since the specialist last saw her. Swallowing and breathing have both been compromised to a degree. That’s due in part to the morphine patches being administered. But taking away the patch would bring back the pain. It’s a shitty trade off. Also, the MS is making her weaker. Her nerves are increasingly damaged. It would be a good idea to have a PEG feeding tube inserted into her stomach. But only if it’s assessed that she can withstand the surgery.
A PEG would give better access, long term, for administering meds and fluids/nutrition. Explaining this to MW is easy. She’s already agreed that it would be a good idea. She was quite animated when she agreed, but I don’t know how much of that was independent thought and how much was her just going along with the explanation given by the specialist. Explaining something that has obvious benefits is much easier than trying to get her thoughts on whether she wants to be resuscitated or not if she arrests.
Do Not Resuscitate. DNR. I sometimes hate the way that abbreviations can, on the surface, trivialise very important matters. A DNR order. Fucking hell!! Am I prepared to just allow her to ‘slip away’? “I’m not saying it’s going to happen tomorrow, next week or next month…”. No, but we’re no longer playing with hypotheticals, are we? This is a when and not if. This isn’t life insurance for the ‘just in case’. It’s planning for an eventuality expected in the not-too-distant future that I’m perfectly happy to stick my head in the sand over.
This brings with it a ton of questions. Is staying at home in her best interests? Particularly as I can’t watch over her 24/7. What if I miss something? I’m not medically trained. I panic at the slightest thing as it is. I can’t – and don’t want to – make an arbitrary decision about a care home but I’m not sure I’m emotionally equipped to continue what I’ve been doing. I’m fucking scared!!!! I don’t know what to do. What I do know is that people are looking at me for answers. This isn’t a conversation that MW has ever been willing to instigate and, now, I doubt she’s able to.
So, to the crossroads – own home or care home? I’m at a point where I know a decision needs to be made or, at least, a timetable needs to be drawn up for making sure MW gets the best care. Every attempt at drawing a conclusion only brings more questions. And in the middle of it all is a 50 year-old woman who didn’t ask for any of this. A woman who is incredibly vulnerable. A woman who, in her more lucid moments, is probably very scared. A woman who still smiles despite all the pain, all the infections, all the being pushed and pulled about, and never complains. And I don’t know how to have these conversations with her. I just don’t know what to do.
It’s been a while. A lot’s been said since I was here last. And there’s a lot to think about. Because MW has significant cognitive issues now, it’s left to me to be the “memory” and, to all intents and purposes, the “decision maker” for all issues. I have to be the “memory” because MW can’t remember what’s said on a day to day basis, never mind when discussing important issues. I have to take notes and remember what’s been discussed. She was even asleep during one of the consultations. I’m also the “decision maker” because, despite the fact MW has the absolute final say in whatever happens, she relies very heavily on my opinion. She has real difficulty in making decisions, even for something as trivial as deciding what to eat. So I have to “make” a lot of decisions on her behalf, i.e. explain why I think a certain decision is the best one and get her to say yes or no.
We’ve had two important consultations this last month. The first one wasn’t supposed to be that important, it just turned out that way. This was a conversation with an OT at the splint clinic – for MW’s hand/arm contractures. Finally, someone has given me their opinion re: MW’s care. I get that professionals aren’t supposed to do that because all decisions are supposed to come from the patient. But it wouldn’t be so bad if they’d offer advice. No-one seems to want to do that. So, I’m left with the impression that the level of care MW receives is considered appropriate for her very advanced needs. Even though I’m fairly certain that most professionals we’ve seen wouldn’t draw the same conclusion – if they were of a mind to forward their opinion, that is.
According to the OT’s professional opinion and looking at the situation with a cold eye, residential care would be the preferred option now, for quality of care, etc. Hearing that was a bit of a relief. Not that I have immediate plans to move MW into a home. But I now have some kind of gauge to go off so that keeping her here isn’t detrimental to her health. I have a yardstick to use. Although not expressed directly, MW’s demeanour when we talk about her staying at the short-term respite home tells me that she wouldn’t be keen on residential care. What MW and I must do now is discuss the long-term future and find the balance between ensuring quality of care and quality of life. I’m not medically trained. Everything I know is through experience – some more bitter than others – or through picking up bits and pieces from medical staff. And I’m doing this on my own. I can’t do it forever and still maintain her quality of care.
The other conversation was always going to be more serious. MW’s contractures are pretty serious (I’m having a hard time not singing the word “Contra-ac-tures” in a Debbie Harry voice). This is a shortening of the muscle or joint affecting her hands, arms and neck. Her hands are pretty much shut tight now. So much so that the knuckle joint at the end of some of her fingers bend back on themselves due to the pressure of the contracture. I keep thinking it’s going to break at some point. Her arms are permanently crossed and her neck’s at a permanent 70º angle to the right, which makes feeding harder and has knock on effects with swallowing and breathing.
The consultant talked about surgery – under anaesthetic, they’d attempt to stretch and set hand and arm ligaments. Possibly some neck manipulation. Alternative surgery includes the amputation of the fingers at the first knuckle. Again, for hours under general anaesthetic. None of which is guaranteed to work or not to cause pain. Also, any general anaesthetic will be a challenge. Because of the existing contracture in MW’s neck, she may require awake intubation. This requires a tube being inserted into the nose and down into the throat, then a wider airway tube being threaded over that first tube. All whilst awake.
The anaesthetic is a whole other thing. MW is getting weaker and I don’t know if she’d be able to withstand what will undoubtedly be hours of surgery under general anaesthetic. I know that all anaesthetic comes with risk. That’s compounded by these pre-existing problems.
This is all quite a responsibility to bear for someone else. It’s hard being the “memory” and de facto “decision maker”. I’m going to have to walk a tightrope between wanting to respect her wishes, even though she’s not expressed anything directly on either subject, and doing what’s best for her health. I won’t lie, I’ve been going round in circles on both issues and I don’t have any idea what to do. But, now that I’ve had proper, professional opinion on the state of things as they are, I’m all too aware that time is running out to make a decision. I only hope I can help her make the right one at the right time.