EH - Essex > Hebrides...the next step of the adventure?

foxgloves

That sounds like a pro-active intervention, @EH. I'm sure part of the problem is lack of knowledge re IPF. My Dad really struggled to walk halfway across the ward during his physio/OH sessions, but because he was still managing the stairs before he collapsed, he kept being told 'Wow, if you can do stairs, Mr Foxgloves' Dad, you can do this little walk' but he couldn't & it was sad for us to see & demoralising for him to keep 'failing' at something he was simply no longer able to do. The collapse was because his lungs had taken a significant turn for the worse. I hadn't even heard of the illness before Dad's diagnosis. I think it gets lumped with kind of generic lung illness & breathing problems, when in fact it is quite a swiftly progressing disease which severely hampers mobility. 
The right care for the right stage of the illness is so important. It sounds like you've made inroads with this by speaking to the Dr.
Thinking of you.....you know I've been there.
F x

leftatthetrafficlights

Glad you've finally found someone to listen @EssexHebridean! Hopefully things will improve now - I've got everything crossed for you 🤞

savingholmes

Glad you found someone that listened. So sad that your Dad has had unnecessary suffering.

EssexHebridean

Hello all - well, it’s been quite the few days. 

Dad saw the palliative care nurse on Tuesday - once the Dr I spoke with put the referral in place it was incredibly quick. Goes to show how much sooner it could have happened really with decent care. I gather he had a really good discussion with her - and immediately he was put on medication to ease the distress of struggling for breath and to make him more comfortable. I believe she also spoke with him about not needing to continue to fight - something my Mum and I completely backed and agreed with, and which I’d said to the Doctor.  Mum got a call from the hospital on Wednesday morning to say they thought we should try to get there as he was going downhill quite fast - MrEH and I had just got into London so turned round and whizzed back up the motorway, but I arrived just too late, sadly, Dad died before I got there.  He did have someone with him I’m told, and was very peaceful at the end - something which was only made possible by the intervention from the palliative care nurse. 

As you can probably imagine I’m both very sad and very, very angry. The formal complaint against the hospital for neglect is going to continue - while it won’t help Dad now it will mean he can make a difference for others, because I guarantee that it’s not just him that got treated badly, and others may not have people to fight for them. 

There is plenty more I could say, but this is neither the time or the place. I’ve spent most of the last two days with Mum obviously - as many of you will already be aware there is just so much to do, to think about, and to plan! We have a funeral date, I have an appointment to register his death, finances are in the process of being sorted (theirs - mine have gone to hell in a handcart over the past few days aside from a cursory glance to check balances look about right!) and people who need to be told have been told. I keep coming across people who have now heard who probably “should” have been told personally rather than via FB, Twitter etc, but that’s one of those things and I’m not going to be feeling guilty about it. 

This morning mum and I have opted for some “normality” - MrEH and I have been for a walk, I’m just having breakfast then I’ll potter a bit here before heading to the gym. Mum’s going to walk the dog, get her weekly shop sorted, and do some bits round the house, then we’ll regroup this afternoon to think what else needs doing. Probably lots…🤦🏻‍♀️

In other news (yes, there is still some of that!) the hallways prep was finished on Tuesday - we now need to get  a date from the plasterer for when he can come and do the next bit. Bizarrely it feels as though the worst bit is done though - I was so dreading the dust from the prep!  
It’s a veg box week so an extra £15.99 on my grocery spend - all fine, budgeted etc. I need to do a meal plan and also a shopping list - tried to get it sorted last night but just couldn’t make my brain think of what it needed to so gave up - in fairness at the point I tried I’d been at Mum’s from 9.30 - 6.30, then come back, we’d sorted and eaten tea (resisted the brief temptation of a takeaway) and then done an hour and a half on our voluntary role stuff. (yes, that needs to continue regardless of circumstances as there’s nobody who can take over and if we don’t get it done the event as a whole will fail - it’s an event my dad loved and regularly attended though so I’m happy to carry on putting the time in as I know he would have wanted me to.) Probably not surprising my brain said it’d had enough! 

Sun_Addict

So sorry to hear about your dad. 

RelievedSheff

Sorry to hear about your dad.

savingholmes

So sorry to hear your news. Sending hugs and prayers for peace 🙏 and comfort at this time

RosaBernicia

Sorry to hear about your Dad, EH.  Will be thinking of you. 

MrsPorridge

Sending my condolences to you EH x

MeandO

I've only read the last few pages of your diary EH, but I was really sorry to read about your Dad. Sending you and your Mum lots of love. As a family, we've experienced similar issues of neglect and poor care of my Mum at our local hospital over the years so I can sympathise with you on that one too. xx