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.

Wishes

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.

Crossroads

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.

The first rule.

The first rule of (Not Being A) Dad Club is that you never talk about (Not Being A) Dad Club.

Did you know it was Father’s Day this weekend?  Every shop you see has some Father’s Day angle or other. It’s on TV – adverts and programme spots -, in magazines, newspaper sites, all over social media. It’s everywhere. Tonight, MW said, apropos of not very much, that she’d like a child “even at 50”. Yeah, I’d have liked a family, too. It can’t happen though. And that hurts.

Long time readers here will know that my Dad died before MW was diagnosed with MS (Father’s Day is the same week as his birthday). MW’s Dad died earlier this year and we don’t have children. So, Father’s Day no longer applies in this house. It’s a closed shop – a club that I’m not a member of anymore. And won’t be. I might have written about this before and I might write about it again. Because it crops up every year, and I don’t remember what I’ve written before. And I’m not about to go trawling through to check.

One of the things that parenthood inspires is the thought of the future; that a) your family is continued, and b) gives you reason to look forward, with the assumption that you’ll have your children around you as you get older. That you won’t be alone in your advancing years – not necessarily from a practical perspective but from an emotional one. I can’t lie, the idea of being alone as I get older isn’t one I relish.

By alone, I mean absolutely alone. My mother is nearly 80 (don’t tell her I told you! She doesn’t know this exists.) and, as active as she is, I can’t assume that her health won’t deteriorate. I assume, as nature generally goes, I’ll outlive her. And the odds that MW and I will, at some point, no longer live in the same house seem to be getting shorter and shorter. I don’t begrudge others their happiness with their family. That’s not fair. I just feel wistful. Sad. Scared. Uncertain. A mind full of what if’s. And jealous. A real envy that my life has taken this path and not the one I’d set out for myself in my formative years. When I was actually thinking about the future and not busy obsessing over records or furiously obsessing over photos of Beatrice Dalle and Michelle Pfeiffer.

Actually, this time of obsession was the closest I’ve come to being a Dad. My first girlfriend unexpectedly fell pregnant and decided to have a termination. In the aftermath, I assumed that I’d have a family of my own “at the right time”. Obviously, I had no idea how things would pan out. I lost contact with her years ago but I do know that she went on to have a family of her own. I didn’t know whether to include this piece of information but I’ve written about it before, so I suppose there’s no real reason to leave it out. As I look back, I don’t really know what I’m supposed to feel about this now – shame? bitterness? regret? I don’t know. But it does hurt.

I guess it’s the same jealousy and wistfulness that seems to hit MW when she has a more responsive moment and says that she laments not being a mother. I used to think that Father’s Day card and gift buying was a bit of a bind. Because it coincided with his birthday, I’d have to do twice the spending. Our relationship wasn’t great (to massively understate the case), so I thought the cash could be better used on more exciting – and obsessive – stuff.

I get it now. I get what it’s supposed to be. It’s supposed to be a celebration of being part of a family. And the cards in the shops are a reminder of a club that I’ve joined against my will. (Not Being A) Dad Club. A reminder of a past that’s gone and a future that never will be. But if I have to be a member of this club, I’m bloody well going to talk about it. A bit.

Decisions, decisions…

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.

Dear Dad, 

When I was
small, you held my hand.

When I was
growing up and needed you, you held my hand.

I left home
and started my own life, you were holding my hand.

When my
life took me further away from you and Mum, you were holding my hand. 

My life
changed, and I started afresh. There you were, holding my hand.

Time and
again, you led me around the Railway Museum…..by the hand!

When I got
ill and grew weaker, you were holding my hand.

Then.

Illness
came for you. So, I held your hand.

When distance
came between us, I held your hand.

As I heard
your voice on the phone, I held your hand.

When all I
can do is think of you, I’m holding your hand.

For the
rest of my life, Dad, I’ll hold your hand.

And I’ll
never let go.

I love
you.  Your daughter.

Milestones

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.