Trust the Experts?

Why didn’t I speak up? “Please stop, look at all that blood. That’s trauma!”

That’s all I needed to say, but I stayed silent for far too long. What the hell happened to me? Why didn’t I speak up for mum when I should’ve done? I knew something was wrong, but I held my tongue, stressed, tired and worried about people being offended because they’re the ‘supposed’ experts. I’m still crying, thinking about it, but also so angry with myself.

But I’ve jumped ahead. Warning, this may be TMI for you but there’s no point in this blog if it isn’t warts and all!

Dementia and Infections

Mum is ill, we still haven’t found out whether she has an infection or not. The laboratory results didn’t come back before the world closed down for Easter weekend, and then when they did this week they were inconclusive for a UTI and show no infection for her other issues. So after several weeks, the doctor decided to prescribe antibiotics for it.

But she is definitely ill. She’s lethargic and sleeping a lot. People don’t realise how scary it can be when your loved one is so sleepy that they fall asleep at the drop a hat. Dementia and infections don’t mix.

One minute we’re chatting whilst she eating lunch, the next time I look over, her head is down, her eyes closed, and she still holding the spoon of food on the plate. I raise my voice to rouse her and ask if she’s asleep.  

Mum always responds with “I’m just resting my eyes” but of course it’s more than that.

Anxiety Rising

I haven’t slept this week, my anxiety & stress are on full alert. I can’t imagine how bad mum is also feeling. Three catheter blockages over the last few nights have taken their toll. We both haven’t had a full night’s sleep. Her cough has worsened, keeping her awake and affecting her at night and mum gets very upset. That’s so hard to see. We also have a new moisture lesion wound that started so small and now increased in size, becoming an open weeping wound that is so raw, and must be extremely painful for mum.

My anxiety keeps increasing, worried for mum, how she is feeling, and whether she can tell me when she’s in pain. I can’t sleep worrying about why these things are happening and what I can do to help her. I marvel at mum’s strength, how she puts up with all this pain, manhandling by me, carers and nurses. I don’t think I could be as magnanimous as mum is.

Calling in the Experts

It was time to call in the experts. Today was madness,trying to get mum all the medical help she needed.

The first stop was to call the doctors to check her chest. The doctor wanted to just prescribe antibiotics over the phone without confirming a chest infection. Apparently, (so the doctor said) you can’t always hear by listening to someone’s chest if they have an infection. (I had no idea, I thought you could). But I’m scared of too many antibiotics so I push for them to check mum before prescribing. You see, I can speak up, but clearly not when mum really needs it.

I call the district nurses to confirm they’re coming to do a wound check today, as the moisture lesion has gotten so much worse. Nothing of course, runs smoothly. The district nurses have no record of the need for a visit today, but agree to visit once I explained the severity of the situation.

Conflicting Medical Advice

Finally, I need to know why mum’s catheter keeps blocking, so I call the incontinence clinic for advice. The incontinence nurse advises us that mum has to have her catheter replaced if she has a UTI. It’s contaminated with the infection and should be replaced.

This is in direct contradiction to the district nurses’ previous instructions to me. They’ve refused to change a catheter if mum has a UTI.

So who am I supposed to believe. Which expert is correct? Wtf?

The incontinence nurse trumps the district nurse as it’s her speciality. She arranges for the DN to remove the catheter. 

The Incident

The district nurses arrive just after the doctor has left. He heard a crackle and arranged a prescription for antibiotics for her chest infection. They arrive as I’m trying to organise a family member to come and get the prescription for me. There are 3 nurses (2 nurses to support mum and a trainee watching), I leave them to do it for the first few minutes to sort the prescription for mum.

On my return, I find them trying to insert the catheter but are failing to determine if the catheter is in the bladder. Normally with a blockage urine starts to drain from catheter immediately, but this time it wasn’t blocked and there isn’t the normal urine drain into the bag, so the nurse keeps trying.

I come to assist holding mum’s other leg, shining a phone light and reassuring mum. I’m shocked to see the catheter tip is covered in blood.

Never has this been a bloody procedure ever!

But I didn’t say anything except in my own head.

Why didn’t I speak up? I should have. Instead, mum had her legs straddled by me and another district nurse, while the other district nurse tried again and again to get the damn thing in.

The nurse kept repeating that she’s never had a problem inserting one before with mum, and “that’s why we don’t change a perfectly good catheter when you have a UTI”

I know that the UTI is not causing that much blood. It’s clear that it’s trauma from the multiple insertions.

But…..I don’t stop her. I don’t know why I didn’t stop it.

All that blood and I forgot to pipe up and say “you know mum is on warfarin as well“. All I kept saying was that was a lot of blood. It took me too long to say maybe let the other nurse try and to do a bladder washout.

The first nurse was definitely tense, saying she couldn’t see that the light was bad. Throughout it all, mum was doing so well but it must be hurting her. The other nurse tried and got it in, but as no urine was rushing out they were still not sure. Thank god, she suggested that they leave it for a while. They tended to the moisture lesion wound instead.

Mum is quiet. I think she’s had enough, and it’s all too much. She tells me she just wants to be left alone. Thankfully, within the hour, the catheter did begin to work.

Trust My Instincts

It was so much blood in the end. Too much. It was a trauma, not the UTI. I’m worried about the impact of that trauma and pain for mum. Mum did complain of pain much later, but she couldn’t verbalise it properly, but she pointed and it was because of the catheter insertion.

I don’t know what stopped me from challenging the district nurse. I’ve had a week of having to confront people, worried about being seen as difficult or rude has been in my mind this week, but still that’s no excuse. I’ve always stood up for her, but I haven’t really challenged someone properly when the stakes were so high in a long time.

I didn’t protect mum; I deferred to the experts and not my intuition, and mum suffered.

And that’s what keeps going through my mind. Mum suffered. I should’ve known better, I should’ve been better. I will be better.

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