Don't know what more to do

[Helenm]

Hi, so my Dad is coming to the end we think. He has done chemos, done part of a drug trial and is pretty ill now. Pain is becoming difficult to manage and getting him to eat is really difficult too. He's obviously lost loads of weight.

This is made worse by constipation that he can't shift even after weeks or even months of sachets and more recently senna tablets.

 

He's been having the meal replacement shakes, but sometimes now he can only manage half of one. He's also dehydrated and now finding it hard swallowing tablets, so no chance of taking creon if the docs would prescribe it. Mum is trying her best to offer food and drink but most of the time he refuses (he can pick up a fork and put it back down again eating nothing) - he says its all down to being constipated and not having 'room'. He also accepts that by not putting food/drink in means not much coming out, but nothing moves at all now. 

 

He also has a pain in his groin that is quite debilitating and none of the doctors have got to the bottom of it. The only respite is sleeping on his side in bed, where he now spends most of his time.

 

So... constipation relief anyone?

And tips for food and drink please?

 

Thank you.

[Floofmom]

Hello, this sounds horribly familiar.  Have palliative been round to visit?  My mum was given a scan when she was like this as she got so constipated it was affecting her ability to wee.  It can be serious so if you are worried get in touch and tell them that it is urgent.  They can give serious laxatives or possibly admit him.  Morphine painkillers can be the main culprit and my mum took quite a lot of laxatives towards the end.  She did get help with the constipation and it helped her along for a couple more months.  If he is having difficulty swallowing then that can also be a warning sign that things are not going well so I would definitely flag that to his care team as he may need intravenous medication.  I send you my best wishes at what I know is a very difficult and worrying time for you x

[Helenm]

Floofmom, thank you for replying. We've been thinking things haven't been going so well. I've read as much as I can about the final days and it all fits. Except, because the groin pain hasn't been identified, there was always the possibility that this was what was making him feel so bad and if the cause of the pain could be addressed, he might not feel as bad.

 

This evening though, we're waiting on a paramedic as his pain is now so bad he can't get out of bed (where he's been all day) without excruciating pain. There's no ambulances available.

[Floofmom]

Goodness.  How frightening for you all.  Does he have his emergency pack?  My mum had two at the house in case of situations like this.  They contain strong morphine that only trained professionals are allowed to administer.  The palliative care team dropped them off a few months ago.  Sadly we lost my Mum this week. She went downhill very suddenly.  I don't know what to say other than I am sending my best wishes to you all and I hope that they manage to administer pain relief to him fast.  Thinking of you x

[broju]

Hello Helen.  I hope the paramedic has been or is there with you now.  It’s the very worst of times and my thoughts are with you and your family. X

[Helenm]

Thank you both. We eventually ended up in a&e on Sunday night transferred to a ward many hours later.

 

Dad passed away last night in hospital, somewhere he only went for pain relief.

 

His inflammatory markers were elevated but he only started on antibiotics yesterday. Most of his regular meds weren't given and he was without any meds from the driver or IV for 3 hours before he died. There's much more to add here but I think its so distressing it would come with a warning. 

Nothing proves just how much the NHS is stretched more than what we experienced over the last 3 days. And don't get me started on why they discussed DNR with a man who couldn't tell you what colour the trees were.

 

Lost my rock last night.

[IMissYouDad]

@Helenmgod bless you at this horrendous time. I completely understand what you experienced with the NHS, it was traumatic for all of us. I wish things were different, I wish we were still fighting the fight, I wish there was a cure.