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.

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.