My poor Dad...

[BUG4LIFE]

Just a bit of a rant really. My poor Dad is currently in a Birmingham hospital, where he's been since early November. He was original admitted due to symptoms of a stroke which led to two weeks of quite aggressive seizures [as many as 6/7 a day].

The docs did get a handle on the seizures but after many scans and procedures, they haven't got a clue what caused them! Dad was cleared for a transfer to a rehab centre to help him get back on his feet [it took nearly four weeks for a bed to become available] but the seizures returned last Thursday after spending a couple of weeks in rehab. Unfortunately he's back at the original hospital

My rant is concerning his physical care. My family and I were getting pretty cheesed off with the lack of physical care Dad was receiving while he waited for a rehab bed to be come available. He has Parkinson's so days/weeks in bed really do him no favours. Although it was frustrating that the docs couldn't work out what caused the seizures [or why Dad is massively confused and suffering from hallucinations], we were pleased when he finally moved over to the rehab centre as their job was to focus on his physical condition.

Now that he's back to square one, there's no plan to offer him access to a physio to try to prevent an ever decreasing physical state. He currently can't stand unaided, never mind walk! I appreciate they're trying to get to the bottom of his seizure/confusion issue but to ignore his physical needs and potentially 'allow' him to become immobile permanently is maddening. The docs we've spoke to blame lack of available physio's, but I'm bored of hearing the 'over-worked' excuse. He neesd help, now!

The whole experience has really highlighted how frustrating the NHS can be, when you need a lot of it! On top of all this, my Dad also had total kidney failure last year, so has dialysis three times a week. We're very thankful for the NHS but my god it can be slow! Don't get me started on the lack of communication between departments, hospitals and us as the family. Getting info can be like getting blood from a stone - which isn't great when you have a worried Mother wondering what the hell is going.

Rant over, thanks for reading!!

[BUG4LIFE]

Hi guys. Thanks for the messages. I now wish we only had my Dad's physical health to worry about...unfortunately he had a cardiac arrest while having dialysis yesterday afternoon. He was revived and, I believe, came around quite fast. This is first time a seizure has caused something so extreme and the outlook isn't looking great at the mo. It seems each of the seizures [since Thursday] have been during or just after dialysis, so his body is struggling with the toll of the treatment. The next time he has dialysis is going to be a very stressful day

Edited by BUG4LIFE on Wednesday 7th February 11:53

[BUG4LIFE]

Bill said:

Oh arse! Sorry to hear that, fingers crossed for him.

Thanks man.

[BUG4LIFE]

Thought I'd update this...my Dad is still with us. Can't believe it was early Feb that I started this thread. Unfortunately he's not in a good way and his health has declined massively. He's so so frail and now under 10 stone. He's just not eating enough [understandable as he's feeling so ill] but the docs are reluctant to 'feed' him via a tube in the stomach or up the nose as they feel he's too weak to handle the procedure. As he's so confused and lacks the ability to understand the importance of eating and drinking, there's not a lot we can do if he refuses.

To add to him problems, he's now got a quite severe bed sore [quite upsetting as they can be avoided with the correct amount of movement] and months in bed has caused his Parkinson's to accelerate to a point where he is so stiff and it's very painful for him to be moved. Oh, and he keeps getting various infections due to being in hospital.

The docs have managed to control the seizures [he's been seizure free for about four weeks] but the high level of meds is attributing to his sleepiness. He'll sometimes sleep all day and it's impossible to wake him, making it impossible to help feed him.

Annoyingly all of the test have come back clear. They can't work out why he's having the seizures. They don't know what neurological issue he has.

As he's continues to decline, we have been told to prepare for the inevitable. It would take a miracle for him to improve. Obviously the thought of being without my Dad scares the st out of me, but seeing him so ill and frail is equally as hard.

It's my Mum and Dads 50th Wedding Anniversary in May. This will be a tough day.

[BUG4LIFE]

Thank you all. I understand their current conundrum - all the tests have come back clear [no infections causing the seizures, no unusual brain activity on the EEG] and although we have repeatedly questioned if he is in the right hospital, would we really get any answers to what caused the seizures at a different hospital?

I guess it's just hard for us to wrap our head around the fact that, even today in 2024, they have no answers....can someone really have seizures to the scale Dad had and there isn't an obvious cause? There is always hope and I am clinging to that but news from Mum today is that he hasn't really touched any of his food yesterday or today - they weigh him on Friday and it's likely he'll lose even more weight.

We have been unhappy about elements of his care [especially in Nov] and the sore is a bit unacceptable. I think we are at the point of no return now though, unfortunately ;(

[BUG4LIFE]

K77 CTR said:

Has he been referred to the dietician and parkinsons nurses. I'd be asking for supplementary drinks, access to the picky food menu and taking in any food that you can and know he likes. Make sure he's getting his parkinsons drugs at the right time as they often don't follow the typical drug round times in hospital.

Ask the physio to show you how to mobilise him and try to do it on a regular occurrence throughout the day. Get them to set goals to achieve.

Yeah, he has been repeatedly seen by a dietician and Parkinson's specialists. He has been having supplementary drinks and we always have snacks available to him.

The problem is, as of the last week or so, he's just sleeping the majority of the day. Sleeping is the wrong word for it really, as it's more serious than that. He's not in a coma but it's somewhere in-between. We can call his name, move him, give the bed a shake...nothing will wake him. He's just in another world.

Obviously this means dieticians/physio's etc can't really help.

[BUG4LIFE]

Big Rig said:

If it’s the Q.E he’s at I feel your pain. Our family suffered a terrible few months of care there when they were looking after my Nan.
I wouldn’t willingly go back to that hospital for any kind of care for any of my family now.

Not the Q.E. [though the neurologist team work from there I believe]. He's in Heartlands. I imagine it's the same at every hospital up and down the country. As someone said above, the NHS are great and saving lives but long term care is massively lacking. I know money is thin on the ground and nurses/docs are worked to the bone but I only accept that to a certain point. We have witnessed too many examples of a lack of common sense...my Mum having to step in a number of times to tell a so called professional to do their job better!

[BUG4LIFE]

super7 said:

Tom8 said:

The NHS is utterly shambolic. It is disjointed, uncoordinated and in some respects dangerous. My mum has been treated since June last year and had numerous miss diagnoses and now she is dying. She has had some really poor care, some great care and she has been subjected to endless messing around and failure as have we in trying to offer care and support.

We will be making a formal complaint with records of the entire episode. I feel sorry for those with no one to take on the system or help them as we have had to fight tooth and nail every step of the way which surely should never be the case.

For the mega billions spent on it, it really isn't worth it.

You won’t be saying that when YOU need it……

I don't really appreciate that kind of comment on my thread about my dying Father, trying to belittle Tom8's terrible experience with the NHS. I'm sure if Tom was in need of NHS care himself and it was not up to scratch, he WOULD be saying exactly the same.

My family and I have been unhappy with many aspects of my Dad's care. It's the little things, but little things matter. As he was wasn't sufficiently moved around early in his second spell at hospital, he has developed a very bad sore on his lower back. The skin doc essentially blamed the nurses as sores can be avoided. He now has to spend all day on his side, which in turn is causing problems with his ankles and feet. It's noted that he must be turned every two hours during the day and four hours at night...do the nurses follow this important instruction, do they f**k! We have to mention it time and time again. Being busy is not an excuse. Situations like this have happened time and time again during my Dad's four months in hospital.

Unfortunately he has continued to decline and will be moved to a nursing home in the near future for end of life care. Seeing him decline as he has is heartbreaking. My 6'3" ex-rugby playing Dad is now well under 10 stone, has next to no movement in his limbs, won't eat and barely knows who we are. Just utter sh*t.

[BUG4LIFE]

There you go again mate, belittling bad experiences. Please do not post on my thread again. All because you've been happy with the care you and your family have received, doesn't mean others don't have a right to complain. I fully appreciate the effort that has gone into trying to save my Dads life and we have dealt with lots of very caring docs and nurses...but that doesn't mean we can or should ignore the frustratingly bad situations. As I said, I don't want you to make any further comments on MY thread. If you want to post about how great the HNS has been for you, please start a new thread. Thank you.

[BUG4LIFE]

To kind of wrap up this thread...my Dad passed away on Sunday morning, with my Mum by his side. It could have happened any time during the week, so Mum, my brother, our wife's and I spent most of last week at the hospital [Mum slept there for five nights].

I started this thread as I was unhappy with the care Dad was receiving, to help him get back on his feet. None of this really contributed to his decline and eventual death. Dad unfortunately had seizures they couldn't really stop, on top on Parkinson's which became massively worse and dialysis knocking him for six [the crazy thing about the dialysis is that it stripped out the seizures meds with each session, making it impossible to control].

I don't doubt the docs did all they could with try to save Dad's life, even if the bits in-between were questionable. I do want to say how happy we were with the palliative care he received. They made him comfortable and pain free. He was unconscious/unresponsive for the last 4/5 days but get to the call from Mum to say he had stopped breathing was obviously tough. 74 is no age. Just over a year ago, he was in great shape, controlling his Parkinson's amazingly well, and then he had the year from hell

Thank you all.

[BUG4LIFE]

Fermit said:

Condolences on your loss B4L. Speaking as someone who's father also has Parkinsons, I can only hope the same sudden decline doesn't hit him in due course.

Thank you for your kind messages guys.

Fermit; my Dad's Parkinson's only became dramatically worse due to the impact of his other illnesses and spending months bed-ridden in hospital [part of the reason I was unhappy with the lack of physical care back at the beginning of the year]. Before all of this, he managed his Parkinson's very well. In the eight year since his diagnosis, it only progressed very slowly. He made sure to keep active, playing walking football three times a week as well as using an exercise bike at home. I'm sure looking after his grandkids helped too Fingers crossed your father has the same slow progression.