Tag: sclerosis

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.

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.

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.

This is the hundredth post I’ve put up on this blog.  In the run up to Carers Week, and the 5th anniversary of starting to document life as a carer, I’ve been posting pictures of items necessary for daily life here.  Here, this is me lifting MW into a car so we can go shopping.  I’ve done this hundreds of times but never seen myself do it.  So I asked the carer accompanying us to take this video.

Yes, I know you can get Wheelchair Accessible Vehicles.  But MW hates being “shoved into the back like cargo”.  This is an argument that will have to be resolved soon.

Responsibility

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.

Taboos

Following on from the last post, and those fears I touched upon, I had a conversation with my GP.  He’s not just *my* GP.

Out of the blue, he asked me a question that made me freeze a bit.  He wasn’t being cruel.  Just realistic.  He said he recognised the bluntness of what he was saying.  The conversation was vague but it’s out there now.