My poor Dad...
Discussion
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!!
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!!
I can see why they don't want to get him up if he's confused and having seizures. Falls are a very real risk and, frankly, could kill him.
The best approach (given the staff shortage) may be to ask for some advice of what you as family could get him to do and then get some sort of rota going so he's getting moving on a daily basis. It's not ideal but it's likely they don't have enough staff at the best of times and this time of year is always busy.
The best approach (given the staff shortage) may be to ask for some advice of what you as family could get him to do and then get some sort of rota going so he's getting moving on a daily basis. It's not ideal but it's likely they don't have enough staff at the best of times and this time of year is always busy.
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
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 s
t 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.
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 s
t 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.
It sounds like my father-in-law is having the same type of journey as your Dad at the moment. It's terrible to watch and the feeling of powerlessness is so frustrating especially when dealing with the NHS who certainly haven't covered themselves in glory in his case.
My thoughts and sympathies are with you.
My thoughts and sympathies are with you.
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 ;(
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 ;(
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.
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.
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.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.
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.
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!I wouldn’t willingly go back to that hospital for any kind of care for any of my family now.
BUG4LIFE said:
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!
Amen to that.....it puts patients and family in a terrible position at the worst possible time. BUG4LIFE said:
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.
Sounds like he could be over medicated which could be due to dehydration and his kidneys not filtering the meds correctly. Could you ask for a medication review? 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.
Gassing Station | Health Matters | Top of Page | What's New | My Stuff