Karen has had a mixed week - Communication sucks!

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I have lost track of the last week. Putting aside Karen’s trials and tribulations, someone trying to break into my hotel room and the person in the room directly above mine having possibly the weakest bladder known to human kind (The toilet flushed at least 4 times an hour from 12.30am!) and some general unpleasantness in the local Wetherspoons, has only added to the stress.

I’ve had meetings with matrons, doctors, dieticians, nurses and therapists. I’ve given fulsome praise to a particular nurse whilst getting frustrated by the fact that nobody, even on teams working ‘together’, seems to talk to each other.

Karen will only do her exercises and interact if I’m on the ward. Sweet, yes, but that doesn’t help her. I then arrange with physio when they will do physio with her… only for them to try to do it without me and get nowhere. Diet supplements that should be given three times a day, I find have actually only been given once in 7 days. There is talk of making her feeding tube permanent, which I vigorously oppose, pointing out that she’s being given unappetising food, and not any of the other options she could eat because shes constantly given a very restricted menu and not the other menu which contains lots of things she would eat, and therefore the system is conspiring against her. It is galling for her to be given unsuitable options then hear nurses offer the perfect option to another patient. There’s no thinking outside a very restricted box.

The nurses all praise Karen for not bothering them, but she won’t use her call bell, even when she gets a headache. I’m having to point out what they need to look for in her behaviour, teach her that she needs to use her bell, and also persuade the nurses that putting the bell on her right side (the side with little movement) doesn’t help her when it needs to be on her left side so she can press it. And I have to keep saying that over and over and email matron who can email another matron who can come up to the ward and tell the staff to think about what they’re doing.

It’s exhausting to be constantly repeating yourself and chasing people, interrupting a very busy matron with emails and arguing with doctors about feeding tubes, and wondering why physio, having been told to only do it when I am there, choose to ignore what they’ve been told.

Don’t get me wrong, there are many amazing nurses doing an amazing job, but communication sucks and I am absolutely exhausted, my fibromyalgia pain is off the charts, my blood sugars doing loop the loop, and I am so tired of repeating myself about the simplest things. Sure, it’s wonderful to be told you’re an amazing advocate for your wife, but does it really have to be so difficult?

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It all sounds far more complicated than it should be. Have you tried complaining to PALS? Getting them to advocate for you a bit? May be worth a try. These days we do have to advocate a lot for our loved ones in hospital. I can only assume the physios are busy with other patients too and may not always be available when you are visiting. That makes it very difficult if Karen won’t participate when you’re not there.

Sadly hotels are often noisy places and will never be the same as being in your own bed in your own home. Not great when you need to stop there for the reasons you are. I wonder if you are able to request a room on the top floor? That’s something I’m always do as it gets rid of the noise above you.

I really feel for you. You need to look after yourself too. If you collapse with exhaustion you won’t be any help to Karen. Make sure you take a break from visiting at times.

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@2Weevils totally agree with @Mrs5K Hospitals are busy places and they can’t always accommodate our wishes and the times we ask for.

But please also think of yourself more than ever. You can’t do everything. You have to have rests in between or you will be ill yourself

Thoughts are with you both at this hard time.

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I do so recognise the problems you have been facing from my own long stay in hospital. I feel your frustration - how can something so easy as staff talking and listening as appropriate be made so difficult? I remeber the call button being placed where I couldn’t reach it time after time, and nobody could commit to therapy times and duration. Please do look after yourself, and though others’ ineptitude is deeply annoying, understand it is being repeated in hospitals everwhere, it isn’t just you and your wife going through this. I wish I could offer a solution- I wish I could be involved in staff training -this will come to an end, and is better looked back on than gone through.

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Yes, I have involved PALs on two occasions. I now have direct access to the Matron on the ward which is useful.

I agree about physio availability, but the Matron told them that they had to do their work with Karen when I was on the ward so I could make sure she engaged with it.

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Thank you. Yes, I just feel that doing the simple things well would result in a lot less stress all around. It seems bizarre that something as simple as listening and taking notes is often overlooked and that seriously affects patient safety.

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I’m normally a very calm, layed back person. But one thing guaranteed to get me losing my patients is if my blood sugar is off balance, which is rare. So get that under control and keep it there. You are no good to Karen if you are a patient yourself.

Get a florescent sticker and write Left Hand Only on it and stick that to the call button or its lead and see if that helps remind them which hand it needs to be near.

Lorraine

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