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.
It’s not the despair… It’s the hope I can’t stand.
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.
There’s been an elephant in the room for the majority of this year. A subject I brought up in Taboos and touched upon in Loss. It’s something I know I have to prepare for but I don’t know how to. I can’t even say it out loud very often – or, in this case, type it. I’m not one of those people who relies on euphemisms to describe it. I know what it is. I’ve dealt with it before. But this is different. To be able to think about it in terms of what’s going on here, I have to ‘switch off’ my emotions. Not an easy thing to do.
I’ve not raised the subject with MW. Nor has she mentioned it. I don’t know if MW has ever thought about it. If she has, then I suspect it was some time ago, before her cognitive skills were starting to impair. She has a certain sense of ‘not being with it’. I don’t know if that’s the meds or the disease that’s caused it. I’m not saying that she’s not aware of anything that’s going on around her but it all seems to go over her head. She smiles a lot but it’s the smile of someone who doesn’t really understand everything that’s being said or done. So I don’t go there. I don’t want to be the one to introduce this into her train of thought.
I say that this has been hanging around this year, but, if I’m being honest, the subject’s occurred to me over the last couple of years. It’s always in the background because MW’s MS is constantly deteriorating. That’s a fact. Right now, there’s nothing that can be given that will arrest the decline of the disease. Symptoms are merely managed. People have said to me “oh, but you’re years away from that, yet”. They don’t know that. I don’t know that. The healthcare professionals who have spoken to me about the subject can’t make any predictions regarding time. All I know, deep down, is that there is an inevitability. The practical part of me knows I have to deal with it; I have to be prepared not only for the event itself but what happens leading up to and after it. I know I’m not prepared for it. Either emotionally or practically. I know I’m burying my head in the sand, and I’m not the slightest bit embarrassed to admit it.
Today, a friend made comments about honesty, and how, when things are less than perfect in life, we shy away from the harshness of reality and mask it with the shine of things that are, relatively speaking, superfluous. We can apply this shine either outwardly or inwardly. Sometimes, it’s just as important to fool ourselves into thinking that everything’s alright. And this is what I do. Because, if I don’t, I’m afraid it’ll be the death of me.