18 posts tagged “mum”

My Mum has been in Peterborough hospital for barely a week and already they've forgotten her Parkinson's medication, twice, and allowed her to get into a situation where she could and did fall over, twice.
It is kind of ironic that after doing their utmost to keep her alive in the last few months (against both hers and her family's wishes) the NHS now seems bent on doing her in.
It feels like they are trying to tick a few boxes such as washing (check), walk to the loo (check) etc so they can get rid because she's bed blocking. 'Hello! You kept her alive when nature was trying desperately to end her suffering." 
It is a horrid hospital - grubby, shabby, rigid, oppressive and understaffed - it's surprising anyone gets well. The sooner we can get her out of there the better. She's only on the first floor I might take a rope next time I visit and break her out.

This isn't an easy post to write but it's something I've wanted to record for a while. People ask for updates about Mum and there isn't an easy or succinct answer so forgive the long post.
She would've died several times during the last few weeks, well months really because she's been in hospital since the end of March, had it not been for medical intervention. And, on the surface, this seems like a good thing. While it has bought us some time with her, it is at a cost.
After numerous theories and tests we aren't much closer to really knowing what is causing all of her medical problems the most immediate danger being inconsistent breathing. The doctors change their minds constantly but the latest is that she has three potential problems or combinations of these three: Parkinson's syndrome, slow growing benign tumour in her brain and an as yet unidentified additional progressive neurological condition.
Not suprisingly the prognosis ain't great. The best we can hope for is that she gets well enough to leave hospital and go into a nursing home, although a doctor said this week she may never be well enough to even do that.
Which comes back to my comment about the medical intervention. Modern medical science is a wonderful thing but sometimes the balance is horribly wrong.
My Mum has essentially been kept alive so she can die slowly. Now that sounds melodramatic but it is true. We found out recently that when she was transferred to Papworth they were struggling to keep her alive, so why did they? Just a couple of weeks ago she was critically ill, had to be bagged and ended up back on the ventilator she needed when in ICU at Peterborough. So why do it when this is about the best she is going to get?
I firmly believe that an animal would have been treated with more dignity and compassion than Mum.
A good day for her is maybe sitting in the chair beside her bed for a bit - outside if its warm - a bit of suction ie a tube inserted into her lungs to get rid of the build up of mucus which is a pleasant for her as it sounds, maybe the occasional need to be bagged to help her rid her lungs of a build up of CO2 which she can't always get rid of herself and a mask or venitlator to help her breath when her O2 levels drop. She might even have a panic attack where she feels like she's suffocating. That is a GOOD day. And she is only going to get worse, slowly or get an infection.

Along the way the doctors have agreed to a DNR, we've even had palliative care nurses involved and Mum has planned her funeral only for the doctors to change their minds and intervene when there was a crisis.
They have now stabilised her enough on anti-seizure medication to finally remove the trachy tube but they don't know how long this medication will keep the symptoms at bay. They've talked about not ventilating again (ie sticking a tube down her throat or doing another trachy) if she needs it but then we've been there before.
She still needs an oxygen mask at times and not one of those flimsy plastic ones, this looks more like a second world war gas mask which she can't put on without assistance. She's still hooked up to lots of machines and taking copious amounts of medication.
It's horrible seeing her suffering, she is frail and down to skin and bone. It breaks my heart. And on top I am so angry with the doctors for putting her through this.
Every night I go to bed hoping that she has a major breathing episode, that the doctors can't stop, to put her out of her misery. Mother nature, after all, has been trying to do it for nearly three months now.
When all of this is finally over my sister and I have vowed to do whatever we can to change the system so that no one else has to endure this and no one else's family has to standby helplessly and watch.

Mum asked one of her doctors yesterday if she was going to die. He told her if they couldn't sort out her breathing then yes.
She's been visited by the palliative care nurse who asked her if there was anything she hadn't done that she wanted to. The only thing she could think of was organising her Thanksgiving Service ie her funeral service.
I can't even begin to imagine what it must be like to have such a conversation. To be faced with your own mortality so starkly it messes with my mind.

So here we are in Norfolk - first time visiting this part of the world. Cottage is gorgeous, built in 1895ish and a generous size for the two of us (if Mosh starts playing System of a Down there is another sitting room I can retreat to). Will post piccies later.
Village has three pubs the first of which we are testing out tonight. I think it is the poshest of the lot judging by the menu.
As is usual in the countryside, mobile phone reception is erratic, my mobile doesn't work in the cottage but does in the centre of the village which is a 10 minute walk. Mosh's does have a couple of bars in the cottage - thank goodness we are on different networks as it makes it easier to pick up my sister's daily reports from Mum's bedside.
It was looking a bit barren for wifi in the village until we fired up our laptops in the cottage and hey presto, connection to the world. Quite convenient as it means I can upload pics as we go and a relief for Mosh as he's got some copy to complete and file by Monday morning.
Right better get properly unpacked so we can head to the pub.

What food reminds you of your childhood?

Syrup sponge and custard. Well custard really. Mum made mean custard.

It feels slightly inappropriate to be writing about this in between photo's of tomatoes and Harry Potter trailers but that's the way my life is going at the moment and how my Mum is doing is long over due an update.
I haven't written about it for a while because for every step forward seems to have been followed by a step back and the doctors have had little concrete to say.
But yesterday there was, well I can't exactly call it a breakthrough because that implies something more positive than it is, but we did turned some sort of corner.
Since my last  post she has had a tracheotomy to make her more comfortable on the ventilator and reduce the risk of chest infections. She's also been transferred to the ICU at Peterborough district hospital, which is a grim horrid place after Addenbrookes.
She's has panic attacks and hyper ventilates and so is being sedated regularly but the nurses have got her out of bed and into a chair on occasions and she's eaten some ice cream and yoghurt. Which is definitely progress.
Easter got in the way of her seeing the consultant at Peterborough until yesterday and the best diagnosis they can give is that she has progressive supranuclear palsy (PSP):

PSP is a neurodegenerative disease involving the progressive death of nerve
cells in the brain stem and basal ganglia.

It has some similarities with Parkinson's Disease and Alzheimers but is rarer.
She's being transferred, hopefully next week, to Papworth Hospital near Huntingdon where they specialise in heart and lung conditions and therefore respiratory problems.
If the doctors at Papworth get her breathing for herself, at least during the day or stable on the ventilator she can go into a nursing home with a portable vent.
But it is a progressive illness so there is the risk that if she was off the vent she would stop breathing again at some point in the following weeks or months.
Having a permanant trachy puts her at risk of infection. And it is no life for her. She hates hopsitals and needles and the rest. It was always her biggest dread to end up like this, hooked up to machines.
And so I have had conversations with my sister about her quality of life and her death. A couple of years ago I wouldn't have ever conceived of talking about such things but having seen my Dad die of leukaemia, it all seems strangely familiar.
We've decided that her comfort is of primary importance and any treatment must respect that. We've also decided on DNR.
I can't say what I hope for.

 

One step forward and two steps back. After making some progress yesterday in starting to breath a bit more for herself and generally improving responsiveness Mum has had a bit of a set back today. She now has a collapsed lung and has been sedated because she was becoming distressed by the difficulty in breathing and the ventilator tube. It gives the doctors a chance to clear her lungs as the chest infection is worse and time for the lung to recover.  The result of the lumbar puncture shows that she hasn't got meningitis which is a relief so they've now swapped her antibiotics from ones that treat that to ones that will treat the chest infection.
The doctors admit that they may never know what caused the seizures which in turn caused her collapse on Tuesday.
For now they are concentrating on treating her symptoms and getting her breathing for herself.
The set back is naturally a disappointment but sadly seems par for the course having spent time talking to the relatives of other patients in the ICU who are undergoing similar journeys.
Had a day off today but heading back up for a visit tomorrow although I'm not sure that she'll know we are there.

Mum is making progress. Started to gain consciousness and responding when asked to do things like wriggle her toes and stick her tongue out. Reached over for my hand, albeit very slowly, which tugged at my heart. Mixed messages/views from doctors continues and as I was leaving they'd decided to do a lumbar puncture as they want to rule out meningitis. This comes on the back of them changing there minds several times about the relevant of her benign brain tumour and whether it needs to be removed or not. She still isn't breathing entirely on her own and as she wakens more she is getting distressed about the tube stuck down her throat, which is entirely understandable as it must feel horrible especially when you don't fully comprehend what it is and how it got there.
Sister arrived from Scotland this afternoon which is a relief and I'm sleeping at home tonight which is even more of a relief.
The camaraderie, spirit and generosity of the fellow relatives towards each other is heartening. A little community has quickly developed and everyone looks out for each other. New arrivals are quickly taken under the wing and given useful tips and info to help in what is a thoroughly awful time. It revives your faith in the spirit of mankind and I only wish I could say the same about the corporate money grabbers who have set up shop at the hospital to eek as much money out of a unfortunate capitive audience. In fact I think it's pretty immoral when Costa Coffee can charge around £2 for a tea/coffee when there is little other option for a hot drink in the hospital. If you are an occasional visitor then I can just about swallow it but for those many who are there with sick relatives for the long term it is daylight robbery.
I'm sure Costa and the others that are there - Martin and McColls - could reduce their prices just a little and make a more modest profit in the interest of human decency. It is a hospital for cripes sake not a train station. Unless of course the hospital is charging the earth in rent for the space... perhaps I should investigate.

Mum has started opening her eyes which is a good sign. She reached over and grabbed my hand and my heart just melted. She is having some physio now with David 'nothing strenuous' he says, so not worried that she hasn't got her leg warmers.
On the flip side it is heartbreaking hearing what others are going through. One woman's boyfriend mends trains and the jack broke and the train he was fixing fell on him. He's in a critical condition as you would be if a train fell on you and not surprisingly she's in bits.
It's an emotional roller coaster, feel guilty talking on the phone about Mum's progress in front of others who's loved ones aren't doing so well but the relatives room seems to be the only place in the hospital where you can get a signal.

Feel like I'm a student again living in halls. My relatives room has a sink, bed and wardrobe and the bathroom is shared with three other rooms. I half expect to hear music and the sound of the pizza delivery scooter beeping outside the window.
Mum still hasn't regained consciousness but is starting to move her mouth and hands occasionally which is a good sign according to the nurse, as is the absence of any further seizures since they withdrew the sedatives.
She has developed a chest infection which is apparently normal for people on ventilators and will put her antibiotics - which should please my sister who seems almost obsessive in asking me if she is on them.
The family room gets quite crowded at times and noisy but then can go deathly quiet. No one in their worst nightmare, I'm sure, imagines they will be sitting in such a room on the phone reeling off a list of broken bones like it is the weekly shop. It's surprising how such things stop sounding quite so dreadful the more people you tell.
My ears haven't quite desensitised to it though and I still inwardly wince when somone talks of their husband/son/wife/daughter's broken face, head, chest, legs and how the surgeon is going to drill a hole in the skull.
It's a testament to advances in medical science and things like crash helmets and car crumple zones that people can have the most horrendous crashes and live to tell the tale. Not all make it of course and it is a long road for many of them. One family were talking about a year to recover.
At least Mum hasn't got broken bones to contend with on top of everything else. For the moment the concern is waking her up and what the doctors find when they do.