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.

Movement – or lack thereof

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.

Coping

For the first time, the thought “I can’t do this any more” fleetingly entered my head.

The “I can’t do this any more” thought came into my head last week.  MW had two choking fits in one day.  The latter of the two being more acute.  I’m holding her upright while she’s struggling to breathe, unable to move, and trying to cough up the foreign object – a stray bit of regurgitated food or drink.  I pressed the button to alert the carers and one of them came to help.  Neither of us could do anything practical.  We can’t go into MW’s airway/lungs and pull out whatever it is that’s caused it.  The warning sign is always a gurgling sound in her stomach followed by a quiet ‘burp’ sound and frantic coughing.  Sometimes it’s not very bad.  A few coughs and it’s out.  Other times, it’s more serious.  Breathing becomes a problem and I can do nothing to help.  On more than one occasion, I’ve had the phone in my hand, ready to call an ambulance.

I had another panic attack last night.  Not as bad as a couple of weeks ago.  Probably a build up of stress coming at me from all sides.  I suspect that this post will elicit some advice along the lines of “you need to reduce your stress”, “is there anything you can do?”.  I know I need to do something about my stress.  Or it really is going to have a lasting, drastic effect on my life.  After the choking incident, I had a quiet moment to try to forget the sound of MW gasping to catch her breath and the feeling of utter helplessness.  That’s when it popped into my head.  “I can’t do this anymore”  “My best isn’t good enough”

So, I’m coping.  At least, I think I’m coping because I’ve not dropped any of the plates I’ve got spinning, but maybe my body is trying to tell me otherwise.

D-Notice on the D-word

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.

Is it possible to lose the ability to smile?  I don’t mean not smiling at all as a result of mood – I get that but this isn’t about that.  I mean that even when I do smile, it doesn’t seem to be received a smile.  As if my smile has altered to the point that people aren’t sure if it’s a smile or not.

Maybe I never had a very good smile at all.  I don’t know.  🙂

Another regurgitation/choking/coughing fit this morning from MW left me in bits.  Again.  I’m starting to hear occasional wheezing, too.  I can’t do anything about it save lift her torso up for a few minutes and try and rub her back at the same time.  Not an easy feat, I can tell you.

I try not to let her see me upset.  I try to reassure her and not let her see that I feel like I’m helpless.  She’s deteriorating, and it always seems like she’s one coughing/choking episode from pneumonia.  All I keep being told is “there’s nothing we can do about it”.  And I’m not OK with that.

Totally unrelated: where the hell did this broody feeling come from?  And can it please sod off, I’m busy.