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dad went suddenly blind at 83: advice please on how to help him

(245 Posts)
funnyperson Wed 17-Oct-12 03:47:28

I would really like help on where to go for advice on how to support my dad who went blind yesterday. He has been admitted to hospital, very ill, for septicemia which is improving with iv antibiotics but he suddenly lost all sight in one eye and most of the sight in the other yesterday morning. We managed to get the eye specialists to see him urgently they say he has vitreous haemmorhages.
What do we do when he gets home? How best to cope? What will he need? Who do we ask? Help, we are lost here and very sad for him.

WereTricksPotter Wed 17-Oct-12 15:29:38

Message withdrawn at poster's request.

gingeroots Wed 17-Oct-12 19:38:17

funnyperson how dreadful ,I'm so sorry .

Where I am in South East London the local authority had a home visitor who came and suggested things ( aids and adaptations ) and supplied some aids free of charge . This was for my mother who is partially sighted .

We were referred by Social Services .

The RNIB are very helpful ,hopefully the social workers/OT's at the hospital will know more about what is available .

Keep strong . x

CMOTDibbler Wed 17-Oct-12 19:43:50

Firstly, vitreous haemorrages do not need to mean your dad goes blind - they can remove the 'jelly' part of his eye with the blood in and replace it. But it does depend on why he has had the bleeds. The consultants will be able to tell you what they plan.

But if his sight is permanently affected, then the best place to start is with your local group for the visually impaired - I know my friends dad is very involved with a group in Merthyr that supports people and signposts them to all the help available

funnyperson Thu 18-Oct-12 01:20:10

Thank you for your replies. We have had a very tiring day. They made dad wait for 4 hours in the eye clinic, on oxygen, with his drip and catheter in a wheelchair. The consultant this morning said its not haemmorhages, he has pus in both his eyes, and has an enophthalmitis. He said its very rare and he wasnt sure what to do but has a bad outcome( his words). They grew a bug from dads blood- beta haemolyic streptococcus. THey said they wanted to transfer him to a teaching hospital where he could get more expert treatment. Eventually dad was allowed back t the ward. After another 2 hours sitting he looked exhausted and was helped into bed and fell asleep and we went home. The minute we got home the phone rang and the hospital said come back, dad is refusing treatement. It turned ut the eye doctors decided at five oclock they wanted to take

funnyperson Thu 18-Oct-12 01:26:46

him back down to the eye clinic to take some fliud off his eyes and inject some antibiotics into them. He said I am too tired and can I go down on the beed. They said no. He said he was toot ired t have it done nd could it be done the following day and why didnt the do it in the morning when he was down there for 4 hours. He was very very upset. It took ages to cal him down . The consultant had left by the tim ewe arrived. He did want any food and eventually fell asleep .

funnyperson Thu 18-Oct-12 01:27:23

sorry about the long post and spelling.

funnyperson Thu 18-Oct-12 01:28:36

He got upset at lunchtime because he couldnt see the food and sometimes there wasnt any on his fork when he took the fork to his mouth and it kept falling off.

gingeroots Thu 18-Oct-12 08:49:33

Oh funnyperson I don't know what to say but didn't want to say nothing .

Complain now if you have the time and energy or keep notes and complain later .

Can he be transferred to a teaching hospital ?

Can you be with him today ? Can you make sure you drink lots of fluids ( hospitals are so dehydrating ) and try and eat ,you must be exhausted .

Thinking of you and him .

funnyperson Thu 18-Oct-12 21:06:33

went in at 7.30 am today left at 8 pm. got old he ight die and asked about a living will. fed him trifle which he likes a lot

WereTricksPotter Thu 18-Oct-12 21:10:32

Message withdrawn at poster's request.

gingeroots Fri 19-Oct-12 09:04:33

Hang on in there funnyperson , good about the trifle .

Thinking of you . x

megandraper Fri 19-Oct-12 09:09:17

He is entitled to assessment and help from his local authority.

Does he have any hearing problems as well?

RNIB are a good place to start.

I am sympathetic. I am in my 40s and almost blind (due to a genetic condition). It is hard to get used to (and I imagine more so when you are elderly) but everything is still possible - just needs different work-arounds.

Housewifefromheaven Fri 19-Oct-12 09:12:27

Hoping for a better day for you all today

funnyperson Sat 20-Oct-12 22:08:30

Thank you, Dad is now on ITU ventilated, dialysed and with tubes up his nose and in his veins and arteries. Oddly enough he looks comfortable. he has multi organ failure. Heaven knows what he will be like if/when he wakes up. The nursing staff have been fantastic.

funnyperson Sat 20-Oct-12 22:09:32

We sang to him as we think he can hear even though he is ventilated.

funnyperson Sat 20-Oct-12 22:10:09

Its a streptocccus infection.

funnyperson Sat 20-Oct-12 22:11:16

I keep thinking of all the amazing times we have had and then I think, its Ok I can stick with you in an ITU too as well as on a lovely holiday.

CMOTDibbler Sat 20-Oct-12 22:12:33

I'm so sorry to hear that your dad is so ill. Talking and singing to him is great as people can still be aware of familiar voices when sedated.
Thinking of you and your family

harbingerofdoom Sat 20-Oct-12 22:20:12

I am so sorry to hear this funnyperson.

My thoughts will be with you and your father.XXX

HappyTurquoise Sat 20-Oct-12 22:25:24

Bless him! What an ordeal! am cross they put him through so much unnecessary uncomfortable waiting and disturbance.

My friend who was blind in hospital said listening to taped novels and personal stereo was good (an older gentleman might prefer the older technology to an ipod, etc) and pressed flower cards (The ones from John Lewis, iirc) as she could feel the texture, and picture them when the colours were described (she later learned how to make her own.)

I am guessing that if you were in Surrey, you would have been referred to SAVI already, but the people there are great. Deaf and blind people among trustees, employees etc. too. I thought of them when you said about his eating - I am sure they would help with any questions if you called them, but it can be hard to get through at busy times.

chixinthestix Sat 20-Oct-12 22:38:37

Oh funnyperson, I'm so sorry for you and your poor Dad. I hope he has a better night tonight and you all manage to get some rest. xx

swooosh Sat 20-Oct-12 22:40:47

So sorry sad

HappyTurquoise Sat 20-Oct-12 23:11:53

Still catching up. thinking of you and your father, Funny. xx

funnyperson Sun 21-Oct-12 05:20:06

It is so nice to have messages from you all. I am trying to keep the faith and hope that he will recover. Though I cannot help but feel that he is dying and that a lot of the medical treatment has simply come too late.Seeing him with all the tubes I can't help wondering if he is in pain and feel so much sorrow that he might have to die this way. Part of me just wants to bring him home so he can be in his own bed with my mum and his family around him. The other part thinks maybe just maybe all the machines will help his body tide over the infection.
He is sedated so I don't know if he can see. But I am reading to him.

HappyTurquoise Sun 21-Oct-12 07:23:32

Hoping you managed to catch some sleep last night, Funny. Make sure you look after yourself.
You can ask the nurses what the tubes are for, and whether he has pain relief. I should think they would be giving him some morphine, but ask them and put your fears to rest.
It's lovely that you read to him, I'm sure it is a comfort.

megandraper Tue 23-Oct-12 09:12:40

Are you able to touch him or hold his hand? When your eyes/ears aren't working well, touch is a very important (and comforting) sense. Just a gentle hand on his arm or over his covers, could be very reassuring.

gingeroots Tue 23-Oct-12 18:20:08

Thinking of you funnyperson .

funnyperson Wed 24-Oct-12 05:04:47

Dad is off his ventilator. We had a horrible lecture from the doctor who wanted to keep him ventilated even though he could breathe on his own and clearly found the tube sore. Tears were coming out of dads eyes even though he could not talk and he was mostly paralysed. In the end the doctor didn't put the tube back. Now dad is talking with a very hoarse voice and is just beginning to move his hands. He cant open his eyes yet because he is too weak. He is swollen all over. Apparently when people are paralysed to be ventilated they swell up.
I dont think he can see us but he can hear us and we hold his hand which he can now squeeze a bit.
He has 2 tubes in his nose- a gastric feeding tube and a suction tube. Its all quite daunting to see and it must be really daunting for him. I'm not sure how t go about getting the support he will need at home.

funnyperson Wed 24-Oct-12 05:07:52

We are all quite tired and the hardest thing is shopping or cooking because all we want to do is be by dads side and when we are not e keep seeing him in our minds eye lying all swollen up with tubes everywhere crying. Mum is staying with me and she can't sleep.

gingeroots Wed 24-Oct-12 08:56:14

Oh funny how absolutely terrible .
Thank goodness he has you there ,it must mean everything to him .

Just get through each hour and day ,don't think about arranging support for him when he gets home yet .

When they're considering discharging him there will be help and advice to get you started ,not least the initial 6 week discharge package of carers ,if that is appropriate .

For now just try and keep yourself as well as you can ,hold your dad's hand .
What a fighter he sounds !

harbingerofdoom Wed 24-Oct-12 22:05:42

Where are you? in Oxford? will get a meal for you and your mum.

funnyperson Thu 25-Oct-12 00:59:00

Thank you. I am not sure if we are managing. Dad is off his ventilator and less puffy all over but still paralysed. The good thing is he can talk, though his speech is slurred and he can be difficult to understand. It was lovely to hear him say he slept well though! He cannot see much beyond the colour of our clothes. His heart, kidneys and blood pressure have recovered. The doctors have stopped one of the antibiotics and his central venous, arterial lines and vascular catheter are out.
They don't know why he is weak all over.
He is not able to swallow.
I hope they send him home soon. He has been having hourly eye drops day and night for 6 days and he is exhausted

funnyperson Thu 25-Oct-12 00:59:33

We are not in Oxford, harbinger but thank you

gingeroots Thu 25-Oct-12 07:38:46

Oh poor man .

One day at a time funny , it sounds as though he's improving .

It's a priority that you take some care of yourself ,because ( though I know you know all this ) you'll be no good to anyone otherwise .

stitch Thu 25-Oct-12 07:51:05

Im glad i came to this thread late, and your father is much better from the way you describe.
take one day at a time. dont worry about how you will cope when he comes home. YOu sound like a loving close family, and will all manage. It sounds like the machines and that have helped whilst your dad fought off the infection.
positive thoughts for you.

funnyperson Thu 25-Oct-12 22:32:58

Dad is improving! He is off the ventilator, eye drops are 2 hourly and he is no longer in heart failure or kidney failure!
He has had some sleep and is able to talk, and wants to come home and more than anything he would like a cup of tea!
He is not allowed to eat or drink anything till the speech and language therapists have seen him tomorrow.
He still can't see- they will transfer him to another hospital on Monday for an eye operation.
Mum is very very tired.

chixinthestix Thu 25-Oct-12 23:18:48

Really glad to hear that funny. Lets hope he can get his cup of tea tomorrow and you and your Mum get a bit of rest to keep you going.

straighttohellymelly Thu 25-Oct-12 23:28:14

I read through the thread holding my breath for your poor Dad who sounds lovely and very loved. I am SO glad he is picking up. I hope he is on the mend now. unmumsnetty (((hugs))) for you.

funnyperson Sat 27-Oct-12 04:14:14

Thank you for the hugs. We need them. Dad has gone back to being very sleepy. The speech therapist said he wasn't allowed to drink or eat as he cant swallow properly. He says he is thirsty the whole time. The x rays of his hips show he has another fracture. The nurse says he has to 'do it all himself' (what all?) The doctors don't talk to us anymore. Three people died on ITU yesterday.
Dad has been given special immunoglobulin to help him recover, so there is hope but it is terrible to see him so fragile. My sister comes into ITU looking ready for war with her arms firmly planted on her hips and I don't know whether to laugh or cry but I feel weepy a lot now.
Mum is getting very tired- it was their wedding anniversary yesterday.
We just want him home.

funnyperson Sat 27-Oct-12 04:15:44

One of the consultants asked us if I had a pretty daughter as she has a son she wants to introduce to someone nice. Dad laughed and coughed.

funnyperson Sat 27-Oct-12 04:20:39

Mum stays the night at our house so at least I know she has supper and breakfast and company and I drop her round to her home after breakfast so she can potter about and bath and stuff before going to the hospital. The whole family mucked in last weekend and cleaned Dad's bedroom out- hoovered the walls, even. The curtains are drycleaned and the mattress is new and all the old bedding has been thrown out.

funnyperson Sat 27-Oct-12 04:21:33

But I think he will die in hospital all alone with needles in and thirsty and it is hard to bear.

gingeroots Sat 27-Oct-12 09:23:56

Oh dear .
This may not be possible I know but could you set up a rota so that one of you stays with him at night ?
Is he allowed those little sponges with water on - don't know what they're called but nurses gave them to us for wetting persons lips and mouth when I accompanied v.old frail lady in hospital .
If he is you could maybe even add a little lemon to the water they are moistned in ?

funnyperson Sat 27-Oct-12 21:27:41

The days are so up and down. Today the nurses and doctors on the ITU were excellent and with their care, dad has improved steadily. Mum and I went home reassured and slept the whole afternoon!

straighttohellymelly Sat 27-Oct-12 21:42:56

Hoping your Dad continues to improve and is feeling properly better soon.

harbingerofdoom Mon 29-Oct-12 19:46:54

Funnyperson, hope your Dad is getting better. He has been sounding stronger.

funnyperson Wed 31-Oct-12 02:34:37

Thank you- it really helps to know someone is out there

Dad has fewer tubes in and is no longer in renal failure but still in serious heart failure. He is getting black spots in his good eye, the other eye is still blind. The hospital are being very very very slow about treating his eyes or transferring him to a specialist unit. It has been so distressing as each consultant just seems to wash their hands of him because he is old. Yesterday evening he was transferred from ITU to the ward and the ward have now got him on hourly observations because he is so ill, so he isn't getting any sleep at all and is exhausted.
No consultant or senior doc appears to be in charge any more. They decided he would not be transferred to a specialist eye unit (because he is old nad his blind eye has been written off) and instead want him to go down to eye clinic in a wheel chair tomorrow. He cant it in a wheelchair as yet as he is too ill and is still in a lot of oxygen. I think he is simply going to loose the sight in his 'good eye' . Worst of all is watching him suffer and in pain.
Yesterday, to cap it all, the speech therapist said he could have something to eat and the ward gave him meat- he is a Hindu vegetarian. So are his children and grandchildren and his entire family for thousands of years. It was clearly on his records. Matron gave me a written apology after I complained about the smirking staff nurse who did it - but the apology was 'at your request' so clearly through gritted teeth.

funnyperson Wed 31-Oct-12 21:15:14

Different tortures are devised for dad everyday
today it is very high flow cold oxygen via facemask which bubbles loudly and dries up the nostrils and throat. freezing the face and making the voice so hoarse one cannot be understood.
After 2 weeks the family and he are so tired of him being seriously ill, watching him gasp for every breath, while people do endless blood tests and x rays and washes and always always seem to be t him so he has had no rest.
He wont eat any hospital food at all now.

funnyperson Wed 31-Oct-12 21:16:26

I dont feel grateful any more. I should, but I dont.

WereTricksPotter Wed 31-Oct-12 21:26:29

Message withdrawn at poster's request.

straighttohellymelly Wed 31-Oct-12 22:36:20

Oh funnyperson, your poor Dad, he is having such an awful time. How terribly upsetting about the meat, that is just rubbish of them to not have upheld that, they must be used to kosher diets etc, and vegetarianism is so common. Not a mistake they should be making. I do agree that hospitals don't pull out all the stops when someone is elderly, but DH's Grandma had eye surgery in her early 90's , so old age doesn't always rule things out. Could you ask to have a family meeting with his consultant and team? My own Dad died a few weeks ago but when he was in hospital we had a few meeting like that which helped to get everyone's perspective and to clarify what was happening. If I were you i would try and push for that tomorrow, and see what their reasons are for the treatment (or lack of) that he is having.
The hourly obs must be horrible. I was on two hour obs in hospital after having dd1, they woke me each time to take my blood pressure and it drove me demented with tiredness.
I am wishing your Dad better soon, you sound such a loving daughter, he must be so proud of you.

gingeroots Fri 09-Nov-12 09:24:41

funnyperson how are things ?

funnyperson Sat 10-Nov-12 21:42:51

Dad is still on a ventilator in ITU. His chest is getting better but his heart in infected.
The latest torture has been to stop the sedation and pain relief and make him wake up with his ventilator tube stuck down his throat. He has been coughing and gagging and tears coming out of his eyes, all day, and the saddest thing has been watching his head twist and turn and his weak hand come up to try to move the tube, and his tongue coming out to try and push it out. He is triggering all his breaths himself .The nurse says and the consultant says he cannot have the tube out, and the nurse has refused to give him any sedation and refuses to accept that he is in pain and discomfort and is suffering and we have watched him suffer for 10 hours today and I have argues with the nurse to no avail even when the consultant said to sedate him because the tube wasnt coming out today. He must be so tired and it is so sad and distressing and inhuman.
I dont care how many degrees or courses they have been on, or how clever they think they are, I think the nurse today was one of the most inhuman persons I have come across in my life.

funnyperson Sat 10-Nov-12 21:44:10

They stopped the sedation yesterday morning and for pain relief put him on oral paracetamol. I made a fuss and they (after an hour of arguing) gave the paracetamol iv as per prescription but it is smashing his liver to bits.

gingeroots Sat 10-Nov-12 23:43:33

What a terrible terrible time for you all .

I wish I had some wise words but my only advice is to complain .

I am so sorry .

At least your father knows you are there .


hellymelly Sat 10-Nov-12 23:59:08

OMG that is unbelievable, I am so sorry you are all going through this, your Dad suffering, you all having to watch. Why are the nurses going against the consultant? I do think you need to complain higher up. Would age concern be any help I wonder? I would call them and ask for advice as his "care" sounds terrible. He can't go on like this and nor can you. Complain as high up as you can, and be very vocal. Threaten to contact your local paper etc. I hope things improve.

Mollydoggerson Sun 11-Nov-12 00:07:28

I am so sorry your Dad is in so much pain and distress and that your family are going through this.

Keep screaming and fighting for him, surely something can be done. Threaten solicitors/media. I am thinking of you and wishing you strength.

funnyperson Sun 11-Nov-12 14:56:54

Thank goodness dad was sedated last night and this morning when they woke him up the consultant on today said he was clearly very active and uncomfortable and recommended pain relief. I could have cried with relief. Thank goodness.

Mollydoggerson Sun 11-Nov-12 22:47:20

That's good to hear x

funnyperson Mon 12-Nov-12 21:54:59

Wonderful news today: the eye doctors have been and say that dad can see light with the blind eye! His eyes are improving with all the drops!

CMOTDibbler Mon 12-Nov-12 22:00:37

Brilliant news ! Hope he's getting some better care too.

gingeroots Tue 13-Nov-12 08:32:52

Delighted to hear that funnyperson .

And what Dibbler said .

How are you yourself ?

funnyperson Fri 16-Nov-12 05:36:16

Dad is stable on his ventilator and, thank goodness, they have been sedating him.
He is stuck because he has a different nurse every day and they don't want to /can't be bothered to wean him off. Its bizarre- the consultants will say that the tube will come out tomorrow and ask the nurse to change the settings, and it simply doesn't happen. There is a lack of nursing will to progress him, in case he deteriorates, and the doctors, who are more confident, simply aren't around enough.
The nurses are dead keen for dad to have a tracheostomy- it makes it easier for them. But dad didn't want anyone to cut his throat so we've told the staff in writing that he and we don't want that. They are cross. Families and patients shouldn't have opinions. We have been hauled up before a panel of 5 tomorrow, only one of whom is actually involved in dad's care.
Mum and I are shattered.

funnyperson Fri 16-Nov-12 05:37:46

In three weeks he has only ever had the same nurse twice.

funnyperson Fri 16-Nov-12 05:38:26

They rotate because 'the nurses like variety'.
Nothing to do with the patients then.

gingeroots Fri 16-Nov-12 08:56:28

I am so sorry you are all going through this .

Well done for expressing your wishes and for putting it in writing .

I'm desperately trying to think that the meeting might be a good thing ? If you can just get one senior person to see sense things might alter .
Can you take someone to support you ,would PALS help ?

I'm wondering which hospital this is ,I imagine you can't say .

Thinking of you .

funnyperson Sun 18-Nov-12 05:41:43

We had a good meeting. Everyone agreed that dad needed pain relief, and since then he has been prescribed some and is more settled. He is very very weak now and even with the best nursing and medical care I fear he will not survive.
We would so like to scoop him up and bring him home.

gingeroots Thu 22-Nov-12 09:21:43

How's it going funnyperson ?

Could you take him home ?

funnyperson Fri 23-Nov-12 05:35:47

To our happy surprise dad has turned a corner! He is sitting up, alert and breathing, though the tube is still down. He has a marvellous nurse, has had the same one for three days which has been fantastic. His pain relief is about right. He is coughing and gagging on the tube though which is very worrying. But they turn the pain relief off to help him wake up for a short time every day. This will strengthen his muscles. His eyes are better- he is alert and looking around and taking in all that happens in the ITU. He is signing because he can't talk with the tube down. So happy.

botandhothered Fri 23-Nov-12 06:00:07

So glad to hear such good news about your Dad, funnyperson. I hope he has another good day, today.

CMOTDibbler Fri 23-Nov-12 07:38:06

Brilliant news ! Sending him strength to keep going, and to you too

gingeroots Fri 23-Nov-12 09:25:20

Fantastic news .

Look after yourself funnyperson ,IME it's when the pressure relents that one is inclined to collapse !

hellymelly Fri 23-Nov-12 16:29:54

Funnyperson that is very very good news. I check the thread for updates and often think of your Dad. Here's hoping he is home again soon.

BeerTricksPott3r Fri 23-Nov-12 16:34:50

Message withdrawn at poster's request.

funnyperson Fri 23-Nov-12 18:51:59

Brilliant news- dad is off the ventilator! They took the tube out this morning. He and we are reeling from mental shock because it has been in so long. Poor old mum nearly had hysterics. He is breathing great, just looking a bit - well- chuffed/surprised/nervous. wine. The poor fellow has been dried to a crisp with water medicines and so is very very very thirsty. His eyes are all sunken. To get through ITU doesn't just need physical stamina it needs mental stamina to be able to tolerate the treatment they have. I am worried they will dry his brain out or that he might have a relapse. But today we went back home and looked around his room and began to plan about how we might change the layout when (tentative when) he comes home. I will ring the RNIB on Monday.

BeerTricksPott3r Fri 23-Nov-12 18:56:48

Message withdrawn at poster's request.

funnyperson Fri 23-Nov-12 19:00:31

I am sure one of the factors has been having the same amazing nurse for three days.
We have been keeping his grandchildren away because they got so upset seeing him on the ventilator. Then each one of them got ill in turn. Now everyone is better but we don't want to tire him out with visitors - we are allowed 2 at a time which seems reasonable really. I and mum are tired. I have had one day each week when I don't go in to visit and this has been very good because otherwise it feels like the ITU has become my whole world even though I have been at work during the day on weekdays. Mum has visited every day and this weekend for the first time she has agreed that she will not visit on Sunday so as to give herself a break and reorientation towards (hooray hopeful hooray) home.
He wont be the same when he comes back. he is very poor sighted and paralysed down one side and weak and so nothing like before he became ill. But at least- oh thank goodness- at least he will be home.

funnyperson Fri 23-Nov-12 19:03:08

Also- and how human- it is marvellous to be able to say to those members of the family who have been counting their hopeful pennies IYSWIM- that he is getting better!

BeerTricksPott3r Fri 23-Nov-12 19:07:36

Message withdrawn at poster's request.

funnyperson Sun 25-Nov-12 05:47:55

It now seems that dads jaw was dislocated when he was intubated so he cannot close his mouth.

funnyperson Sun 25-Nov-12 19:43:52

Ghastliness today with blood streaming from dads mouth after the registrar gashed the inside of his cheek whilst trying to put his jaw back on the unit (unsuccessfully) Dad now has an open mouth with a tongue shrunk to a chickpea and blood caked inside.
To cap it all the nasogastric tube came out yesterday afternoon wasnt put back by this afternoon so he got no fluids or food for over 20 hours so he was frantic with thirst when we saw him and instead of putting the tube back and giving him some fluid they gave him some haloperidol for delirium. He is now half comatose and thirsty.
The only good thing is he is breathing by himself in room air.

CMOTDibbler Sun 25-Nov-12 19:47:55

I hope you are documenting all this and making PALS aware of the situation - 20 hours without fluids for someone in your dads situation is totally unacceptable.

I'm so glad to hear that he's breathing on his own now - thats huge progress

funnyperson Sun 25-Nov-12 19:52:00

CMOT there has been so much which is unacceptable that I now feel lost and frightened. How my dad feels is beyond imagining. But I am in despair. I do not think we will ever get through to the staff on this unit and he will simply die a most horrible prolonged and avoidable death.

BeerTricksPott3r Sun 25-Nov-12 20:00:43

Message withdrawn at poster's request.

Selks Sun 25-Nov-12 20:07:35

Your poor poor Dad; this has all been so traumatic for him - and you all. I'm shocked with the poor standards of care that he has recieved sad angry.

I hope he continues to make a good recovery....wishing him strength x

Selks Sun 25-Nov-12 20:09:47

Link for PALS

ComeIntoTheGardenMaud Sun 25-Nov-12 20:34:42

Oh, funnyperson, I had no idea of the scale of what you and your dad have been going through.


hellymelly Sun 25-Nov-12 22:11:32

I am really horrified by the way your Dad has been treated. He must be as tough as old boots to have got through all of this. Please do complain higher up, 20 hours without fluid could have been fatal. It really is negligent. There was a post on here a while ago linking to a story where a man had died from not being given fluid, he became "aggressive" i think, due to the lack of fluids, it was a harrowing and shocking tale and I can't believe your poor Dad is being treated much the same way. I really hope he is at home soon.

funnyperson Mon 26-Nov-12 00:46:20

It probably will be fatal. I am feeling really low. I am beginning to hate myself for not being able to do anything about it. He was given fentanyl and haloperidol and we were told he wasn't short of fluid even though he was begging for water and had not had any. He is curled up. I am distressed beyond belief. The nurses just want a passive body they can suction and turn without hassle. He has lost 23 kg in 45 days.

funnyperson Mon 26-Nov-12 00:46:49

I just dont know what to do.

funnyperson Mon 26-Nov-12 00:48:37

The consultant didnt speak to us at all. He just walked straight past.

echt Mon 26-Nov-12 06:19:17

Oh, funnyperson sad I've just popped over from Gardening.

Also just googled "elderly dying of thirst". Print off any one of many articles, wave it in their faces and threaten to sue their wretched arses. So angry for you.

My DM was allowed to dehydrate in her care home. Keeps them quiet.
I wish you strength to give them hell. Thinking of you and your Dad.

musicalendorphins Mon 26-Nov-12 06:43:01

funnyperson My heart is breaking for you and your dad and mother ,and the rest of your loved ones. Thinking you you, be strong.

gingeroots Mon 26-Nov-12 08:45:07

funnyperson -have you made a formal complaint ?

gingeroots Mon 26-Nov-12 08:46:40

Please complain ,it will make a difference .

ComeIntoTheGardenMaud Mon 26-Nov-12 09:21:55

Still thinking of you and your dad, funnyperson.

funnyperson Mon 26-Nov-12 21:19:51

Well I sent off a complaint in the early hours of this morning. Mum held the fort during the day and when I got into the hospital in the evening dad was sitting up, jaw neatly bandaged and in place, hydrated to perfection and breathing air and looking sprightly. He wanted to know if I had the car keys and when I was taking him home. Three consultants had spoken to mum during the day. Either the complaint worked or else the hospital themselves had sorted their own team out. So happy.

funnyperson Mon 26-Nov-12 21:22:24

The last consultant came p and said she was really pleased dad was better and said he was tougher than he looked.
In my complaint I did mention about dad loosing over 20 kg in 4 weeks in hospital and the dietician saw mum today and upped his nasogastric feed by 30%.
I'm not an advocate of formal complaints but this one worked.

gingeroots Mon 26-Nov-12 21:24:21

Phew !
So glad to hear better news .
So angry about his care .
Every time I've complained ( not that I do it without good reason ) things have improved .
But it shouldn't be necessary !!!!

CMOTDibbler Mon 26-Nov-12 21:24:43

Sounds like you've really kicked them into touch. I hope things stay positive

Selks Mon 26-Nov-12 21:26:16

Crikey that's really good. Hopefully they will buck up their ideas now and continue providing good quality care. Glad to hear that your Dad has had a better day smile

funnyperson Mon 26-Nov-12 21:26:17

I hadnt slept at all - the images of him in hospital will haunt me to the rest of my days I think. Just need to get him home somehow with a care package which makes it doable while he recovers even more.

WynkenBlynkenandNod Mon 26-Nov-12 21:29:40

Oh my goodness Funnyperson, I'm so sorry sad. Agree with everyone else, please do complain and go high up. This thread is a summary of what he's gone through with dates which you can use.

CMOTDibbler Mon 26-Nov-12 21:34:48

Is there a community hospital near you that he could maybe go to while he needs some nursing care? I know the one in my parents town often does that, and dh's gm was very happy in the community hospital after stays in the general hospital

funnyperson Tue 27-Nov-12 03:44:55

I'm not sure whether it is better to ask for support to get him home (where he and we will be much much happier tbh) or the community ward. After a certain point care isnt really nursing care as such - its more basics like keeping someone clean and helping them mobilise. The last thing we want is for dad to fester in a community ward. At least at home he is in familiar surroundings with familiar people and familiar food.

echt Tue 27-Nov-12 06:27:01

I'm glad there's been a turnaround for your dad. If you get him home, are there supports for Social Services you can draw on? I'm In Oz so no longer au fait with all this.

DutchOma Tue 27-Nov-12 07:30:50

Home any day and ask for support from district nurses at your GP's practice in first instance. He should get funding under Continuing Health Care and they can facilitate that.

CMOTDibbler Tue 27-Nov-12 08:01:20

I see your point, but the community hospital should be able to offer much higher levels of physio and OT than you'd be able to get as an outpatient, and in my experience, were much better at organising realistic care at home than the big hospital as being more local they knew it. And in the cases I know of, the GPs take more of a role, so get to know just how someone is before they are at home

gingeroots Tue 27-Nov-12 08:44:23

I think it varies CMOT ,my experience of community hosp/rehab has been different .
Very overstretched ,certainly not much in way of physio .
I'd opt for home as well .

gingeroots Tue 27-Nov-12 18:45:39

Listened to this on Radio 4 today - about poor nursing care , it's causes and what can be done - and thought of you funnyperson and your dad all the way through .

Conclusion seems to be good leadership - who'd have thought it .

funnyperson Wed 28-Nov-12 04:17:10

Does anyone have any advice as to the logistics of how to get the best support to get father home? I am thinking for example he will need a bed a bit like the hospital one which can bring his head up to sit up and a special mattress so that he doesnt get bed sores- how to we get one on loan for home?
How do we organise or request physiotherapy at home or is that too big an ask and should we simply aim to try and find a physio privately. How can we best manage his nasogastric feeds at home till he is well enough to swallow? Some one suggested up thread that we contact the district nurse- very good advice- thank you.
ITU kicked him out discharged him to the ward at 8 pm this evening with no doctors handover. I suppose its because I made a formal complaint. Mum says she saw the nurses tearing up his notes and re writing them this afternoon. I'm really not sure whether to believe her. Anyway they kept his special air mattress which he had come up with from the ward. He has something called 'wet lesions' on his bottom apparently. Tbh it is so amazing to get out of there it feels like a big step nearer home.

funnyperson Wed 28-Nov-12 04:17:58

I mean ITU kept his special mattress.

funnyperson Wed 28-Nov-12 04:29:55

Poor mum lost it and went suicidal today. The ITU had kept her in the waiting room for 2 hours while the senior consultant did a teaching session on dad. (demonstrating his dislocated jaw and 'delirium' causing him to have more and more pain and distress) Dad was frantic saying he wanted to go home. Perfectly reasonable it seemed to me. We had been told on Saturday he would have a ct scan of his head and a neurology opinion for his one sided weakness but needless to say that hasnt happened. His antibiotic levels are toxic but needless to say they are still being given even though it could make him deaf as well as blind. I am so shocked. It just takes one bad registrar ( and I mean bad) and consultant decisions are not implemented and patients suffer. It also takes a really really callous clinical lead and the whole unit becomes - well accepting of bad practice. I am so so sorry to moan constantly on this thread.
Anyway after I got there after work I calmed dad down, calmed mum down, got hold of the nurses for an update ( which consisted of the usual 'your dad refuses treatment' excuse for neglect- he is the most co operative person you could imagine) and asked to see the doctor ( who was very shifty-eyes darting all over the place I am not joking- and said he would hand over to the new doctors on the ward but didnt.) and sat with dad till he went down to the ward and shook the hands of the ITU senior sister and cheered silently as I went out the door (I am sure the nursing fraternity cheered too- they must have been so pleased to see the backside of us) and sat with him till he fell asleep on the ward and took mum home and gave her a cup of tea and some supper. She is staying at mine. What a day.

echt Wed 28-Nov-12 06:47:33

I've got tears in my eyes reading your last two posts, funnyperson sad

I'm so far away from knowing what is on offer by way of support in the UK, and sure someone more knowledgable will come along soon.

Nothing is too big an ask. Be demanding. What I DO know is that SS will happily lean on the relations to provide support until the cows come home, so you will have to insist at a level which might make you feel uncomfortable, that support from SS is needed.

Photo the notes every time you go there, every time, that way you can track the arse-covering.

I've never offered an internet hug. Is this one? ()

DutchOma Wed 28-Nov-12 07:35:13

They are obliged to inform your father's GP surgery and you should have a visit within 24 hours from the GP or the district nurses. Never mind it is the weekend. You should have a visit every day if necessary and they will direct you towards further help.
MacMillen nurses will help, Marie Curie nurses will help. They can stay overnight to give you a break.
Make sure they make a claim for continuing health care from the PCT.
Yes be demanding, calmly.
At one stage I went down to the surgery for some tablets towards their closing time and refused to leave until I got them.
Everything can be provided at home. Physio, dieticians, opticians we have had the lot, the only thing that is a pain is the dentist, we had to make a Mount Everest journey (three times) to the surgery, but that is the least of your worries.
You can refuse to go back into hospital. You can refuse any kind of intervention and the fact that there was a two hour training session on your dad appals me.
Haven't read very carefully, as I wanted to share information

gingeroots Wed 28-Nov-12 08:27:26

Reading in haste and horror .
The DN team will supply the bed and mattress - air with pump .
Profile bed .

Please complain . Again . This is beyond outrageous .

So distressed for you all .

funnyperson Wed 28-Nov-12 20:06:44

Needing all the (( )) and really feeling quite low and tired.

funnyperson Wed 28-Nov-12 20:07:42

The Ophthalmologists have put in the paperwork registering him blind today.

DutchOma Wed 28-Nov-12 20:13:07

Have ((hugs)) galore. And thanks and brew. You must be beyond exhausted.

gingeroots Wed 28-Nov-12 20:42:09

What Dutch said .

The registration means he should be visited at home by someone from your local authority - either general disablement or ,if they have it ,low vision team .
They will advise on aids and adaptations -
my mum had some extra lights put in ,

a free floor standing light ( which wasn't terribly good design and I've replaced with Anglepoise with this bulb )

and a jolly good cube that you press and it tells you time and date .
Like this

And these

Registration also makes applying for "blue badge /disabled parking thingy " really easy .
And a Taxi Card .

But I realise all the above is a bit by the by at the moment ,it must be a shock actually having the blindness officially registered sad

I hope he comes home soon .

Very many hugs ,keep strong .

WynkenBlynkenandNod Sat 01-Dec-12 17:46:27

Thinking of you all Funnyperson and hoping things are as OK as they can be at the moment.

funnyperson Sat 01-Dec-12 19:41:43

Well dad is out of ITU onto the ward as I mentioned above and today when we visited he was sleeping like a baby on his side with his hands under his head looking very peaceful and breathing clear as anything. Just sat and watched him for an hour. So relieved. No ventilator noise. No tube down his throat. He had on his own night clothes. Some amazing nurse had shaved him, his linen was clean and starched. He had 2 pillows, a nasogastric tube with feed going in, a drip with antibiotics going in. Dear readers, tears of gratitude came into my eyes and I thought 'my dad is in hospital'. You know- with all the nicest possible connotations that being in hospital can possibly have- of being looked after, being treated, getting better. Of having that level of care which we could not possibly have provided at home.
Poor old mum has lost it though and is wandering around in a shocked daze with her concept of time all haywire. I suppose it is reaction.

DutchOma Sat 01-Dec-12 19:50:50

That sounds an awful lot better Funnyperson. Sorry to hear about your mum though.
I can remember how pleased I was when an 'amazing' nurse shaved my husband. His name was Kingdom.

WynkenBlynkenandNod Sat 01-Dec-12 20:56:55

Am very relieved, that all sounds a lot lot better. Your poor Mum, her nerves sound shredded unsurprisingly. Hopefully a couple of days and she'll be back on a more even keel.

Can you fit in something to treat yourself at all or is that one of those nice ideas but just not going to happen things?

hellymelly Sat 01-Dec-12 23:07:36

That does sound much better. My Mum fell at home a few days ago, and spent about 20 hours on the landing as she couldn't move, she's broken her leg. Luckily a neighbour spotted a parcel on her doorstep and after calling by a few times 'phoned my brother who lives half an hour away (I'm well over two hours away). He wasn't going to call in for another day so she might have died there, but although cold and delirious she was ok, and her care so far has been really good, she is happy with the nurses and she's recovering well from the surgery to pin the bone. She's 81. So there can be good care for the elderly but it is very hit and miss. It has been really painful reading about your Dad, and (even more so for having lost my own Dad so recently) I have really been rooting for your Dad to turn the corner and improve and I'm so glad that is happening now. Very touching last post op. Wishing him continued strength and recovery.

funnyperson Sun 02-Dec-12 09:59:46

hellymelly sorry to hear about your mum. Sounds like she has good neighbours and a great hospital nearby though. It also sounds as if you are coping. Who will look after her as she is mobilising?

Dad is frightened of anyone who comes near him now unless it is me or mum or my sister. He puts his hand up and flinches. He hates being touched now even by us. To the nurses he puts his hands up and prays to them not to hurt him. The ward nurses are upset (in a compassionate way) to see it. Little by little he has managed to accept brushing his teeth. Otherwise anything near his mouth is upsetting him a lot. Now he can talk he says he is constantly frightened that a 'boy' will come and put something in his mouth (we think it is the memory of suction when he was intubated). He relaxes when we are near as he feels that then no one will come and hurt him. We have explained that he is not on ITU anymore and tell him little by little what has been happening to him. He wants to come home and this morning in his typical way said he was 'perfectly all right' (music to our ears) so I don't think it will be too long! Just his swallowing isn't normal so he is fed by nasogastric tube and he still needs antibiotics and he cant really move very much because he is so weak but it will come. Sorry to be boring but it helps to post.

Mum is tired out. I made her stay at home with the gardener and not visit one of the days but other than that she has visited every day for 50 days. And I have driven her in for all but 3 of them. I bought rose plants for her a fortnight ago and she planted them in front of the window. We don't feel like shopping. Its mostly been the 7/11 store. Yesterday I went to Waitrose and it felt odd to be back in the land of the living.

gingeroots Sun 02-Dec-12 10:21:34

oh funnyperson your posts aren't boring !

they bring tears to my eyes

what a lovely family you sound

DutchOma Sun 02-Dec-12 12:58:39

So glad it helps to post. You are not boring at all, I keep looking for your posts and hoping things are better than the last time you posted.

Once your dad can swallow again, make sure you have proper thickeners for his fluids. The speech and language therapists (SALT) will insist on thickeners and if not done properly all drinks will taste like wallpaper paste.
You need Nutilis thickener for hot drinks and Resource Clear for cold, water based drinks.
You make them up differently and it took us a while to get them prescribed, but especially the Resource clear has made a lot of difference to his fluid intake.

BeataNoxPotter Sun 02-Dec-12 13:15:15

Message withdrawn at poster's request.

echt Mon 03-Dec-12 07:08:57

You are NOT boring, funnyperson - sorry for the shouty capitals. It's good to hear of your dear dad's progress.

All good now, I see, so <thumbs up emoticon>

musicalendorphins Tue 04-Dec-12 04:27:49

So glad your dear old dad is improved so much. And that your mum stayed home and relaxed. My fil goes to see my mil, (in a nursing home in the Dementia floor) almost every singe day, since July 1, 2011. First he went twice a day, after a few months the personal aids convinced him once a day would be good enough. He is in his mid 80's and the aids and nurses all adore him. He did go away for 3 days but got us to visit for him those 3 days. He takes her for a walk outside daily.
So I know it was hard for your mum to not go in for the odd day or two but she has to keep her strength up.
And you also need to keep your strength up. Now that your dad is doing so much better, maybe you can relax your mind and rent a film or spend an evening doing an activity that is relaxing and fun for you.

funnyperson Tue 04-Dec-12 17:38:23

Dutchoma thank you for that advice you must be a mind reader as mum and I are wondering what best to take in for dad to eat when the nasogastric tube comes out. We have been told he will only be able to have very smooth stuff with no bits in at first so your suggestions are really helpful. The speech therapist is going to assess his swallowing tomorrow and we are really hoping she is going to say that he can have sips of water at least. Poor man he hates the nasogastric tube with a passion.
But the good news is that the antibiotics have stopped and the infection has gone! Dad is still breathing in air with a clear chest, and today (after a couple of phone calls in the early morning admittedly to prompt the nurses) We arrived on the ward to see him sitting up in a chair in his own pyjamas, clean shaven, teeth brushed (he did it himself) and looking around like an alert old bird with a long beak of a nose.
Now that he is better we can no longer stroke his white hair ('I am not a child' he says crossly) and he wants to know everything about his condition from the junior doctor.
The new sister on the ward said today 'oh, is he blind?' Sigh. The lack of communication doesn't fail to surprise me.
The next step is to try and sort out a discharge plan. It feels like a very big mountain to climb. The district nurse and local physio say the hospital will refer to them but he isnt having any physio, though perhaps he should be, and sister just wants to send him to another ward.
It is lovely to hear from you all who read this - I feel bad about telling my work colleagues every minute detail though there have been some amazing friends around holding our hands.

WynkenBlynkenandNod Tue 04-Dec-12 19:50:39

Funnyperson, how fabulous he wants to know everything. I've no experience about discharge from hospital but emailed Social Services about my Mum last week and she started daily visits yesterday to help her with her legs as shevhas her second bout of cellulitis and clearly hasn't been coping with her medical regime, despite daily calls from me and her saying she's been doing it all. She's being seen by the Reablement team for 6 weeks and I think they said they are often called in when people are discharged from hospital, could be wrong though. I have been really surprised and grateful as to how quickly it all happened.

Also our surgery has just employed a 'Tracker Nurse' who is there to keep people being admitted/readmitted and I think to make sure people are getting help from the various different agencies. I spoke to ours today and she was really fabulous, I sorting an OT assessment and referral to memory clinic. I'm sure others will be able to advise you much better than I can but thought that might be a little help.

DutchOma Tue 04-Dec-12 20:41:39

It's wonderful to hear that he is 'sitting up and taking notice'.

I'm so glad that you were helped by what I wrote, it's just from my own experience with my dh.
I don't think your dad will be allowed plain, unthickened fluids, if he does there is a risk that it gets into his lungs and creates another infection. The speech and language thrapist will advise.
I think you need Occupational Therapy to get him home. They should do a visit now to see you and your mother, assess what equipment he needs (bed, stairlift, ramp to the front door if he is going to be in a wheelchair, grab rails etc.) and provide it quickly. It can be done: we decided on Friday that we wanted a stairlift, it was in by the following Wednesday.
I have found a Kenwood Chefette liquidiser indispensable. All manner of things can go in: it comes out looking awful, but tasting really nice. Whatever you are having, stick it in the liquidiser with some broth, and whizz.

The one thing that was discussed with us when dh came home was the 'Do not resuscitate' notice. It was explained to us that, should dh collapse at home and we called an ambulance they would be legally obliged to try and thump him back to life unless this DNR notice was in place. It was the GP who signed it off after the district nurse filled it in. Very distressing for both patient and onlooker. It is something you must of course discuss with your dad, now that he is a bit more aware of his surroundings. He may want to be kept alive at all costs, but from what you have said that seems an unlikely scenario. We have also said that we will not go to our local hospital again, whatever care dh needs will need to come to us, to the hospice or a nursing home, not the acute hospital.

It must be so hard for you to keep it all together and do a job as well.

MariscallRoad Wed 05-Dec-12 15:04:11

Funnyperson it was painful for me too to read about your dad. Encouraging he is making progress. It takes a long time for recovery and it is good he has you and tour mum by his side and the whole of his family.
Keep a diary of the hospital days. I am glad you have friends to hold your hands.
hellymelly I am so sorry about your mum. She has caring and observant neighbours and the I was glad to hear the hospital care was v good. I hope she will recover from the trauma.

funnyperson Wed 05-Dec-12 21:45:38

Thank you for the very helpful advice about OT and social services- especially about emailing social services -I hadnt thought of that. Ot on the ward can only see dad if he is referred by the nurses who have been too busy to refer him.

The great news today is that the speech therapist has given dad the go ahead to have food : eff oh oh dee. Wonderful news. The staff nurse told me when I got in after work. No one had told dad. The speech therapist still has to write down the detail for the nursing plan as to what exactly dad is allowed when. Just by chance I had been to Waitrose and bought vegetarian organic baby puree from Ellie's kitchen so I left some on the ward for dad in case the therapist thinks it is suitable to give him tomorrow. Thanks for the Kenwood cheffette advice- I am going back in my mind to when the children were weaned and I am thinking of freezing stuff in ice cube trays.

His drip is out. All the signs are pointing homewards!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Poor dad is getting post traumatic stress disorder and paranoia though. He is convinced the nurses are going to kill him or alternatively that they are ignoring him and that he is going to die and he wants me to stay by his side all the time when I go in. After a while he calms down and then after a nice normal chat and some pain relief he falls asleep. I do so hope he will be better emotionally when he is home.

I manage work by doing as much admin as I can from home. I am an early riser and hospital visiting hours are not till the evening so that helps. Mum does the afternoon slot. It is easier now that he is out of ITU of course. smile

funnyperson Wed 05-Dec-12 21:49:58

Staff nurse today also asked me if dad was blind. And there was me hoping she might be able to point me in the direction of helpful advice and, well, a bit of support for him and us coping with the shock and the practicalities of the blindness. Instead I was made to feel like a liar as if I had invented his blindness for personal advantage. It made me want to curl up into a very tiny ball and disappear. Sometimes the distress caused by the lack of communication is indescribable and unbearable. sad

DutchOma Thu 06-Dec-12 08:17:01

When all this is over and your dad safely home, you will have to name and shame this hospital and the ward(s) he has been on. It is just appalling and that when there is so much on the news about poor nursing care.
I don't think I would say anything at the moment as there have been reports of victimisation after complaints and nothing would surprise me after what you have said.

Yes, I too remember making baby meals with ice cube trays in the fridge. These days it's all about baby led weaning, so the grandchildren have had neither ice cube meals nor the pots of baby food.

The hospital should provide pureed vegetarian meals, but under the circumstances I would take everything in and feed it myself. Does he like yoghurt?

Have you been in touch with his surgery yet? Obviously the ward cannot be relied on to do anything. We have not needed to be in touch with social services (yet) but I have heard that this can be a bit of a curate's egg, depending on the local authority.

funnyperson Sat 08-Dec-12 12:14:20

Services are beginning to come into place.
The RNIB advice service has rung back and will be doing a 'quality of life' check and offering detailed telephone advice on Monday- we have an allocated voluntary advice officer! This seems wonderful.
Apparently there is a sensory support service within social services that may also visit the house to offer advice on how to lay out and light his room at home. We have already this week given the white ceiling a new coat of paint so that it reflects more light.
On the ward, the OT, physio, speech therapist and dietician have all visited and are giving us and dad really useful help and advice.
Dad is getting used to the idea that he is no longer on ITU, that anything near his mouth is not an endotracheal tube, and is gradually calming down and .....eating! smile
The discharge planning meeting is early next week.

Now that the nurses realise that dad is frightened rather than naturally bolshy they have been very kind indeed, and when necessary I have gone in to help with medicines and eating and reassuring (ie most of the day).

I feel awful about complaining - the story of the poor nurse who died at the King Edward Hospital has really upset me. I would never ever want to be the cause of misery to staff to that extent. So we are trying to be very very positive, and it is easier as well now that dad is improving.

DutchOmainthestable Sat 08-Dec-12 12:41:52

So very glad to hear that Funnyperson. It does seem all to come together now.

About making a complaint: if you have the energy to do so, do make it for the sake of the patients that follow your dad onto the ward. It is the system you are complaining about, the consultant who subjected your dad to a two hour teaching session, the four hour wait you mentioned at the beginnning of your thread, the things we have been open mouthed in horror about.

I must admit that I did not have the energy to complain when dh got home, I was simply to tired to do it. I feel bad about it, but it is now two years ago. and my husband has made the decision that he will never go back there.

funnyperson Sat 08-Dec-12 20:30:20

The issue of going back is an important one. It is our local hospital and we are a stable local family so other family members might get sick in future and need treatment there. Next door neighbours of my parents are consultants there. Very tricky. A complaint is probably best handled by a third party IYSWIM.

Furthermore with dad not actually home yet he is still very vulnerable.

The pain relief saga is interesting. He was put on Fentanyl skin patches to help him feel less pain when coming off the ventilator. Now he has been off the ventilator for 10 days and can talk, so his mouth and throat are healing. He is still on the skin patches though I suspect he may no longer need them, and is also possibly becoming dependent on the additional morphine which has also been prescribed. When the morphine wears off he gets grumpy and I don't know if it is due to pain or the euphoria of morphine wearing off.

I find that we have to be quite proactive in discussing all the details of his care and just thinking of everything and talking about it to the doctors and nurses gets tiring.

funnyperson Sat 08-Dec-12 20:47:07

Bought some knitting from a local wool shop. There are modern 'net' wool yarns which one can knit up into interesting curly scarves. Will sit and knit while he grumps tomorrow. Got the idea from DD. One ball of wool= one fashion scarf. Autumnal colours: rust and burgundy and purple. Haven't knitted for years.

BeataNoxPotter Sat 08-Dec-12 20:58:34

Message withdrawn at poster's request.

DutchOmainthestable Sun 09-Dec-12 11:02:12

Yay for knitting. I like the slogan: Keep calm and carry yarn and follow it to the letter. There is no greater (k)nit than Oma.

Could you print out this thread and give it to someone to write that carefully worded letter that BeataNoxPotter suggests? All the dates, all the worries are there and you would not have to revisit the whole time again, but could conserve your energies to look after your dad.
Very glad to hear that the RNIB are being helpful, I do hope that you will muster all the help you can get.

Thinking of you and hoping that your dad will soon be home where he belongs.

echt Fri 14-Dec-12 06:34:09

How's it all going, funnyperson? Well, I hope. Thinking of you and your dear dad.

funnyperson Fri 14-Dec-12 09:01:16

Dear all it is very kind of you to ask.

Dad is still in hospital. His tubes are all out, he is eating and drinking. He is having physiotherapy and occupational therapy from some absolutely brilliant therapists. The nurses are patient and kind, the doctors are conscientious. The nutritionist and dietician advise daily. The ward has just won best ward of the year from the hospital and one can see why. It is well deserved and cannot be faulted and is the nhs at its best. I can't get over how it is that two places in the same hospital can be so different but they are.

The only slight problem is dad wants to come home so badly that he intermittently goes on hunger strike and doesn't want to eat or drink until he gets home because he thinks the docs wont let him go home. Not sure if the fentanyl patch is making him feel sick.

Just waiting for the docs to approve his discharge and for the therapists to fax the relevant referrals to community services to put his package of care in place.

Mum is better. RNIB have sent some very useful info. They suggest we ask for a care assessment when he is home. So far using brightly coloured bowls/crockery/glass has really helped as well as encouraging him to use the not so good side. Simple games like ball, lego and playdoh also help fine motor skills so we have been digging round in the garage for old toys to play over Christmas!

hellymelly Fri 14-Dec-12 11:59:39

I'm so glad things are improving, it is all so much better than it was a few weeks ago. My Mum will be in hospital over Christmas, but she is comfortable, clean, not in pain and safe, thankfully.

DutchOmainthestable Fri 14-Dec-12 19:52:49

Glad to hear that things are getting better.

funnyperson Sun 16-Dec-12 20:27:42

hellymelly its nice to hear that your mother is looked after.
Dad is coming home in 3 days!!!!!!!!!!

He isnt upto his full potential as they say, but is definitely at the stage when he will be happier at home. The occupational therapist, physiotherapist and doctor have sent off some recommendations for a care package. We are nervous in case it all will be too much even with help, but are definitely up for it and although it brings home to us how frail he is, still when we look back over the last month and how we planned last rites day after day and watched him suffer on the ventilator, we can see that he has come a long long way and we are so so happy. We think it likely that the therapy support in the community will be thin, especially over Christmas, and the worry is he might take a step back, but hey, everyone has agreed to rotate at putting in an hour a day of exercises till the new year at least.

Does anyone send their sheets off to the laundry?

CMOTDibbler Sun 16-Dec-12 20:36:32

I'm so, so, so glad to hear he's going home grin

Get the physio and OT to write down just what they want him to be doing so you can make sure it all gets done - and find out where your local OT/disability supplies shop is so you can nip out to get things as they suggest them.

DutchOmainthestable Sun 16-Dec-12 21:40:33

No, but I bought a tumble dryer two years ago when dh came out of hospital and it is one of the best things I ever bought. The other one was a stairlift.

DutchOmainthestable Sun 16-Dec-12 21:43:16

Oh, and I found out that AgeUK do a sitter service: 8 hours a month for free, which you don't have to take all at once.

funnyperson Tue 18-Dec-12 20:43:01

It was all too much to hope for. The referrals for the home based equipment and carer and therapists didnt go off, the hospital thinking is that nothing will happen before Christmas. Dad is now refusing to drink because he thinks he will never get home and is beginning to slip into a coma. The fairly junior nursing staff dont really realise how ill he is and how fragile and how much it means to him to come home. They left him sitting in a chair without a cushion or pillow in pain for 7 hours today (he has both hips fractured) and wondered why he didn't want to drink. It is hopeless because we cannot possibly be there 24/7 to supervise the staff. Yet they cannot see that the best thing is get him home as quickly as possible before they kill him out of sheer neglect.

DutchOmainthestable Wed 19-Dec-12 09:59:53

Urgently speak to your MP.

gingeroots Wed 19-Dec-12 11:17:44

I agree with Dutch .

Is there any way you could manage him at home without whatever equipment was to be supplied ?
Thinking maybe you should just take him home ?

gingeroots Wed 19-Dec-12 11:24:21

funny have PM'd you .

CMOTDibbler Wed 19-Dec-12 11:45:53

I'd be sitting in the ward office until they sorted it out, ringing PALS/MP etc if necessary. Its not acceptable to have this kind of delay.

Could your family afford to rent a suitable bed and hoist privately until it was sorted? From somewhere like this it looks like £100 a day, which is a lot, but would get him home fast

gingeroots Wed 19-Dec-12 11:51:50

A cricket hoist is fabulous if he can he weight bear a tiny bit .
Much less scary for both person and carer ,small and easy to use .

OT recommended - she said they enable person to retain more muscle strength than the body hoists .
She said they are not standard items for SS and OT depts and have to be ordered in .
So people invariably end up with full hoist because they need them quickly and full hoists are in stock .

funnyperson Wed 19-Dec-12 18:23:34

Thanks all. Am trying to hold down a job so sitting in the ward isn't an option. I suspect this is all a ploy to avoid nhs/social services paying for the bed/mattress/care etc. You know the sort of ping pong - its not health, its social services, its not social services, its health, oh dont worry the hospital will sort it oh dont worry the GP will sort it etc etc etc.

I am strongly minded to ask the govt to refund my parents and my taxes and ni contributions as they would have paid for top class private care and follow up many many times over.

Apparently dad needs a rotunda which is better for standing but ot/physio say he cant have it because they havent got time cant be arsed to train the community physio to use it.

funnyperson Wed 19-Dec-12 18:26:09

This was all so predictable, it is a fortnight since I first contacted social services and the OT to say that a bit of advance planning for going home would be good only to be fobbed off with them saying as they didn't have a discharge date there wasnt any point doing anything.

DutchOmainthestable Wed 19-Dec-12 19:33:29

It is totally infuriating and I really don't know what to say any more. It should come under Continuing Health Care, as your dad has spent such a long time in hospital. The GP, through the district nurses should organise it.
As far as we were concerned social services did not come into it and we have never had any contact with them. So far.

gingeroots Thu 20-Dec-12 22:13:59

Thinking of you and your dad funnyperson .

echt Fri 21-Dec-12 20:28:23

Hope all is well funnyperson

funnyperson Sun 23-Dec-12 07:05:46

Drinks left out of reach on his blind side.
Catheter taken out then no urine bottle within reach or any buzzer then left in a pool of urine with a bedsore . Prostate medicine stopped.
Blood pressure medicine stopped. He was on it for years prescribed by a cardiologist at a world centre which happens to e local.Has now got high blood pressure. He has a headache. We are told by the nurse assistant that it doesnt matter if his blood pressure is high. This in spite of the fact that he will go into heart failure.
He is not given his toothbrush or toothpaste in the morning. It is on the bed table untouched. He now has severe oral thrush.
He says the nurses beat him up.
We cant afford £100 a day for the hospital bed and mattress he needs and which has been ordered for the 31st Dec.

funnyperson Sun 23-Dec-12 07:06:48

Forgot to say that yesterday a drip went up because he 'wasnt drinking'
Drinks left on blind side.

funnyperson Sun 23-Dec-12 07:10:59

CMOT dibbler that link was for stuff for very overweight people. Dad now weighs 53kg.

funnyperson Sun 23-Dec-12 07:11:52

Nurses are having revenge because we complained.

VestaCurry Sun 23-Dec-12 07:22:54

sad sad awful awful awful.

Can you secretly film in the room? You can buy pens now with a camera in them. Not sure how long they run for.

DutchOmainthestable Sun 23-Dec-12 07:45:35

I think the only recourse you have at this point in time is either the police or the papers. Will you have to work over Christmas? Can you 'camp out' a bit more?

gingeroots Sun 23-Dec-12 09:24:53

Beyond dreadful . It's a scandal .

Complain again .
IME more likely to be bad nursing than revenge .

Drinks left beyond reach etc IME is the norm . Friends elderly mother was left on a partially inflated mattress all night . Own mother left on commode and told by nurse that she wouldn't help her off it ,it had to be the nurse who'd helped her on to it .Put on IV diueritics , no monitoring of fluid intake ,no drip ,given nothing to drink ,I could go on and on .

I feel saying this will only add to your pressure but I agree with camping out at hospital .
Or take him home without the provision of a bed .

funnyperson Mon 24-Dec-12 01:25:27

Dad left in own urine. No urine bottle in sight. We were told that nurse had 'changed his pyjamas' . Nice, except that he was not wearing any pyjamas.

Came to find cheery assistant sitting on his blind side calling him a monkey feeding him gloopy Ensure. Dad sitting in own urine in tears all the while. Dietician had previously said no need to put gloop in Ensure. Thrush and blood pressure medicine still not prescribed. We were told that doctors were busy and medicine cant be prescribed till Monday.

At our request, sheets changed, clean pyjamas (which we had left on the top of the cabinet the previous day) put on, dad sat up in bed. In the end I put my foot down and asked them to call the doctor straight away to prescribe his medicine as I was very angry. Blood pressure medicine and thrush medicine arrived within minutes. Nurses go into office in a huddle to write up notes doubtless saying how bolshy I am.

All this is routine. Will be familiar to most who read this thread. Yes to iphone filming btw . Would have been very useful especially in ITU. We don't have an iphone though.

We plan to ask if we can take him home tomorrow. He can make do with a home bed till his hospital bed arrives after Christmas. The care package was put into place on Friday and the hoist has arrived which is the main thing. Wish us luck.

echt Mon 24-Dec-12 01:34:11

Oh, funnyperson, so sad and angry for you.

Is there email, so you can say: this is what we agreed at X date/time. Those buggers will be writing it all down, so you should. Possibly this thread constitutes a legal document. Bolshy is good.

I want to wish you merry Christmas, but will go for contented.

Thinking of you and your dear dad.

funnyperson Mon 24-Dec-12 01:40:05

I am off work over Christmas so will be camping out whether with mum or in the hospital . Cheery if you see what I mean. Will be so much nicer to have him home surrounded by the family as all the DD DS are home from uni. We live a few minutes away so if he is home the plan is for me to stay with mum and dad at night and alternate meals at home/dads which thrills the grandchildren.
Watching the nurses go off to their families is making me grind my teeth. i never thought I would think their break was undeserved but I do. The permanent staff are taking the NHS for a ride. The ratio of nurses to patients is excellent but they spend a lot of time chatting, esp this time of year. I think I am undergoing a personality change.

Anyway the tree is up, the food is in, the house is clean, the laundry done. No cards done, no presents bought, no wreath on the door as yet but there is a warm bright home for the DS and DD to come back to, and for dad to come back to at mum's home. I am shattered but reasonably happy. Dad looks well and that is the main thing. smile

funnyperson Mon 24-Dec-12 01:50:19

echt thank you . Any suggestions for indoor flowers at home this Christmas?
I'm not sure if this thread does constitute a legal document. Its only really for me to moan when things seem really too much and sometimes I haven't even put the worst stuff down because it is really too horrible. Like the time in ITU when he bled from his neck line for days so that he had to have a 4 unit blood transfusion and we would come in to find blood oozing down his neck through his dressing day and night. Eventually the consultant stitched it up. After we told him. The nurses has said not to worry for 5 days. Luckily it was on his blind and paralysed side so he didnt feel anything.
Or the time when his drip was down in ITU for over 48 hours and he was on a frusemide infusion through the central line and his tongue the size and texture of a chick pea and I rang 999 to say he was dying of thirst before they resited the drip. (doctors had previously been 'too busy')
Or the fact that when cross they press on his fractured leg to hurt him.

funnyperson Mon 24-Dec-12 01:53:32

It is true. Sometimes I feel surreal and as if this cannot be happening in this day and age in the nhs which previously I had thought generally got things right. But the extent of the neglect and the extent of the cover ups and the extent of the crossness when one dares to remonstrate has been a real eye opener to me. One thing is obvious: Consultants haven't got the first idea of what really happens on a ward.

gingeroots Mon 24-Dec-12 09:17:02

I expect the nurses will be rewriting their notes to show what excellent care they've delivered . Falsifying entries re drugs ordered and given .

It will be so much better with him at home .

Cyclamens and poinsettas for flowers at home ?

I know you don't need any advice but ...make sure hoist is charged .

BeataNoxPotter Mon 24-Dec-12 09:20:38

Message withdrawn at poster's request.

gingeroots Mon 24-Dec-12 09:26:22

Again ,I know you don't really need any advice but be prepared for difficulties when you're getting him off the ward tommorrow .

There'll be no one to discharge him ,no prescribed drugs for him to take home ,no porters and no wheelchairs .
( I speak from experience .)

gingeroots Mon 24-Dec-12 11:04:49

funny ,I don't mean to sound the way I suspect I do ,so apologies if I'm coming across as bossy/know it all/playing Top Trumps .

I just mean be prepared tommorrow as much as you can - I struggled with discharging my mum and was scared by the ( whoever the intimidating male was ) person who was telling me "it's on your head " and wish now I'd gone off and grabbed the wheelchair abandoned in the corridor rather than waiting 3 hours for the porter .
But she was far better out of the hospital and away from their uncaring ,beauracratic ,institutionalised neglect .

Next time ,prepared it will be easier .

DutchOmainthestable Mon 24-Dec-12 11:13:35

If I hadn't myself experienced the inadequacy of our local hospital or read the dreadful things in the papers, I would have thought you were exaggerating. I don't think so now and I am dreadfully sorry about it all.

When we went through it we were in touch with the lady who was the local MP but got de-selected at the last election. She begged me to make complaints and, had she still been the MP, would have taken up cudgels for me, just so that other people would not have to go through it. I did not have the energy to do so and feel that you may not either. But you have this record and so I would hope you could simply transfer it to a Word document and edit it without fear or favour (or have someone edit it for you).

I'm praying that you have a peaceful and very happy Christmas.

funnyperson Mon 24-Dec-12 20:44:44

Dear all
thanks to an amazing district nurse and ward sister dad is home safe and sound and sleeping like a babe in his own brand new hospital bed with its retro dorma country duvet cover (replica obtained from ebay).

Everything went smoothly- DD and I went to collect him, the nutritionist gave us a week worth of supplements, the nurses gave us bed pans and wee bottles, the pharmacist gave us medicines, the OT gave us exercises, the Drs gave us a discharge summary. The ambulance man and woman came early, Mum greeted him with sweets, DS helped her move furniture, the carer came after he had settled in to wash and change him and now all is well and the family have had the bestest bestest Christmas present ever. Thank you to all the NHS staff in the community and hospital who came up trumps in the end to nurture him to be well enough to come home. smile smile smile and thank you to all of you who helped me to keep the better side of sane whilst going through it. I'm afraid I cried like a baby when the phone call came at 1 o'clock just as DD came through the door back from sailing, to say he was coming home. There really must be a God.

DutchOmainthestable Mon 24-Dec-12 20:49:18

There is a God and my prayers as well as your were answered. Happy Christmas.

gingeroots Mon 24-Dec-12 20:50:30

Fantababalooby .

smile smile smile

BeataNoxPotter Tue 25-Dec-12 16:18:40

Message withdrawn at poster's request.

MariscallRoad Thu 27-Dec-12 14:02:33

Very wonderful news for Christmas funny: joy to you and family! They do very well when at home. smile

echt Fri 28-Dec-12 01:17:39

What good news. Trust your Christmas was of the

funnyperson Fri 28-Dec-12 20:07:31

Christmas was very very Though quite quiet so as not to disturb dad too much.
Mum and I danced in the kitchen.

We postponed the big family get together which is now going to be tomorrow. The venue has moved to mums house this year instead of mine as dad can't be left. The table is laid, the menu determined, three generations have all committed.

Just needs me to do the cooking in the morning......gulp. shock Dad will be in the next door room while we are eating, but in with all the music making and poetry and charades- if he can stay awake! Most likely he will nod in the armchair.

It isn't easy having someone frail at home. The help is wonderful but still, it means strangers in the house, and with them coming 4 times a day at unpredictable hours which suit them, its worse than the gas man. The laundry and ironing is something else. Even mum now knows how to operate the washing machine.
The kit (bed, hoist etc) occupies a lot of space. Mum got depressed yesterday because dad wont eat much, and we can see that his personality has changed and that he is in pain some of the time. But on the whole we are managing and he is managing and the district nurse approved of our medicines and 'nappy' cupboard so we feel reasonably competent.

funnyperson Fri 28-Dec-12 20:16:08

The community nhs staff have been wonderful. The district nurse has been, the physiotherapist has been, the chiropodist is due.

The carers have needed gentle house training re wiping muddy shoes but have been pleasant and kind.

I'm glad I have had this week off though. Coping with the number of new people coming to mum's house (what with the various bed and mattress deliveries as well) would have been very daunting for my mother alone. We are also really really glad that while my dad was in hospital the family blitzed mum's house one weekend and decluttered the room he is now in. We feel very very lucky.

DutchOmainthestable Fri 28-Dec-12 20:37:52

It sounds as if it is as it should be. Best of luck with the cooking tomorrow.

Message withdrawn at poster's request.

gingeroots Sun 30-Dec-12 09:09:19

Hope you had a lovely day and that everyone is getting used to the new arrangements .
It takes major adjustment I know .

Carers are a whole other dimension . Hope that you can get the visiting times sorted .
They shouldn't be arriving at unpredictable times that suit them .

funnyperson Sun 30-Dec-12 20:11:46

11 round the table, pulled the crackers with dad, lots of jokes, loads of family photos, a brilliant time was had by all. No arguments for the first time ever. 5 course meal. Fabulous day. DC helped with the washing up.

Carers are a bit odd. They are meant to come 4 times but today only came twice.

Dad is fine though not eating or drinking v much at all.
Mum is cheering up and beginning to be more confident.

Wishing everyone a happy New Year!

echt Thu 10-Jan-13 10:38:08

How are things, funnyperson? I hope your new year is going well.

funnyperson Thu 10-Jan-13 17:07:53

Dad is getting stronger. He is happier because he sleeps in his own room with his own cosy duvet, listens to music he likes, watches his favourite programmes, and can chat politics and current events in a loud voice to his hearts content without worrying about the next door bed. I visit regularly and chat and do his exercises with him and listen to loud classics together- its a very happy time with a slow and gentle pace like having a baby.

But he still isn't eating much and is frail and survival is by no means certain. He gets nightmares from time to time. He still gets upset putting a spoon in his mouth (the memory of the breathing tube).

Mum, oddly, appears to have mentally abdicated. Having 4 sets of carers coming in at times which suit them has been very stressful and she feels she doesn't have control of her daily routine and she is also unhappy that dad isn't eating much. I dont know if her lack of will is tiredness or old age or both. I am not worried about dads slow progress but she doesn't see that there is light at the end of the tunnel so there are still dark times at home. Mum has found a lovely cleaner though, to help with the interminable laundry, which is nice.

gingeroots Thu 10-Jan-13 18:21:30

funnyperson I'm so glad that your father is home but it must still be very stressful for you all .

Carers are a whole new ball game to cope with and I hope the random timing of their visits won't be on going .
It's horribly intrusive having even just one carer once a day at an agreed time ,so to have them coming any old time must be unbearable .

Even with the 6 week rehab package on discharge from hospital ,I've never heard of carers just coming when it suits them .

If they're coming as part of a long term care package the time of their visits should have been agreed with regard to what meets your father's needs .

Maybe your father is still in the 6 week period before the care is re assessed handed over to SS and a more long term package is put together ?

funnyperson Thu 10-Jan-13 22:05:52

We havent got a written care package. All the professionals put their hands up and say thats terrible but no one seems to be responsible for writing one.

gingeroots Fri 11-Jan-13 09:15:12

Someone must have decided on some sort of package for the 4 visits to be provided .

Unless your family have arranged it themselves ?

As far as I remember ( I'm sure others on here know more ) there is 6 weeks of care/reenablement at home on discharge from hospital .Then an assesment by SS and a care package put in place .

Who are the carers managers ? Can you phone them to discuss the situation and the future ?

funnyperson Fri 11-Jan-13 10:07:15

Think it was recommended by the hospital Occupational therapist.
In the three weeks since discharge , the community occupational therapist never materialised as our district doesn't have one, the speech therapist visited once, the physio has visited twice. Given that its has been Christmas/New year that hasnt surprised us. Of course it doesn't even touch NICE guidelines ( 45 mins of each therapy per day) but it was apparent he wouldnt have got that in hospital either. TBH it took at least a week just to get used to being home.

Dutchoma Fri 11-Jan-13 10:15:15

Is there any benefit/possibility in contacting your local hospice? This could be done via district nurse who would speak to the Gp or to MacMillan nurses direct. He doesn't have to have cancer to be referred to MacMillan nurses and local hospice. After what happened, I would think that your dad would flatly refuse hospital admission again.
We have avoided carers' visits so far, but have had lots of support by way of the local hospice. Occupational and speech therapist and physio has been provided in the amount we wished for. None of it has come from the hospital or social services

gingeroots Fri 11-Jan-13 11:31:32

Sounds like good advice Dutch ,so many areas don't have OT or speech therapists ,or share them with other areas and are hugely over stretched .

So brilliant if such services can be accessed another way .

As far as service ( excuse my pause for laughing as I know how patchy and poor the provision can be ,and no surprise given the pay ,training and organisation ) from carers go I would try and talk to carers and find out who their manager is and phone them to try and work out if it's a temporary arrangement ( and not worth the considerable energy needed to sort out ) and if it is ,how the next stage is planned .

funnyperson Fri 11-Jan-13 13:07:00

Don't you have to be dying to be referred to a hospice?

Dutchoma Fri 11-Jan-13 15:19:32

No, not a bit of it.
When my dh was referred for palliative care (care but not cure) the Mac nurse said:"Don't think that you will be dead in six months time now you've been referred to us. I have patients that I've had for two or three years and they come to us for a bit of care and then they go home again and they can do that several times." Dh went in for a fortnight to have his machine adjusted as he could no longer travel to London and when he got a chest infection over Christmas the out of hours GP phoned them (at our request) rather than the general hospital. They would have had them, could have done intravenous antibiotics and patched him up and sent him home. Only they thought he would be better at home and so we did.

funnyperson Fri 11-Jan-13 20:39:53

Oh Dutchoma your poor DH. You sound so courageous.

Dutchoma Fri 11-Jan-13 20:43:59

Not really. Only when I read about how they (mis)treated your poor father I couldn't help posting my own experiences in the hope that they might just help you help your father.
And the hospice has been so lovely to us that I wanted to share that with you as well.

funnyperson Sat 12-Jan-13 14:11:00

Thanks. thanks

WynkenBlynkenandNod Sat 12-Jan-13 20:24:43

My Mum is on her last day of Reablement tomorrow. She's got a book they all have to sign nd it has the Care Manager's number on the front. In addition she's got a Social Worker who is finally going to show up on Wednesday as I have asked her to come to a meeting.

I'm backing all phone calls up with emails now as I've found it's very easy for things to be overlooked. I think in your position I'd email the Adult Access Team and say you are very concerned not to have seen a formal care plan, that your Father is a vulnerable Adult and it is important to have a plan in place for safeguarding purposes. That you're worried about the stress of not having a proper care plan in place is having on your mother and you are noticing she is starting to withdraw.

funnyperson Sun 13-Jan-13 02:34:47

Thanks wynken v helpful. What kind of meeting have you organised for your mother?
I was there yesterday at 5 ish and was shocked to see they stripped dad completely (why?). Mum says they give her 3 sets of pyjamas to wash daily as they take his clothes off each time. (?????). They took the sign up sheet away and no longer record or sign up their visits. I intend to stay a whole day tomorrow to find out exactly what is going on.

gingeroots Sun 13-Jan-13 09:19:02

Have you tried asking the carers who their manager is and how to contact them ?
It's perfectly reasonable to want to know details of the care provided .

My guess is that it's the standard 6 weeks provision after discharge .
The hospital should have their own Social Workers who will know and can advise on the next step .

I suspect you find my input less than helpful but IME one of the issues with care has been use of equipment by carers ( their training ,lack of training and disagreements between care agencies and local authority OT ,when that very scarce commodity is available ) .

If your father is going to move onto a more permanent care package and will continue to need a hoist of some kind then you may wish to try to forestall problems by asking about ability to use particular equipment now .

But none of this is easy and must be even harder for your mother and for you not wanting to step on her toes .

Never mind have a life of your own confused .

WynkenBlynkenandNod Sun 13-Jan-13 09:35:46

I'm said to the SW I'd like her to meet Mum and myself at Mum's to discuss the situation with her surgical stockings and to work out a way forward with her care. I guess if you were ringing you'd probably say you want a Care Plan meeting?

I've made that up but I bet such a thing exists. Maybe try to get someone from Social Services to come out, say on the phone the sheets the carers were signing have disappeared and that you are concerned about Safeguarding as your Father is a Vulnerable Adult and as such Social Services have a duty of care. Then anything said follow up in email to SS and cc his GP.

No idea if that's the right way to go about it , someone hopefully will ? But I noticed as soon as I got across to the SW that she'd just let an old lady in the process of a Dementia diagnosis and who is supposed to be wearing surgical stockings be in the position where she'd have no Carer for at least 3 days, she started to sound worried. I've been reading the Alzheimer's forum and I know your Dad's situation is different but it's 'vulnerable adult, safeguarding, duty of care' which apparently gets action quickly. Your poor Dad, why on earth are they changing his PJ's each time.

Gingeroots is right about the disagreements about various parties. We has SS trying to push the OT assessment over to the GP.

gingeroots Sun 13-Jan-13 09:48:11

I don't think you need to know the name of a meeting - just say that you have concerns and want to discuss .

Actually thinking about it - I would phone your parents Local Authority SS ,speak to duty SW ,say father discharged from hospital on X and that you have not been given any info about his current care arrangements ( who provides it ,who you should talk to if concerned ,how it was agreed on ,how long it will continue ) and ask them who you need to speak to .

IME ( sorry ) the LA SW's can give clear details of the procedures - who does what and for how long when someone like your dad discharged .

It's ridiculous to change his pyjamas unless they need changing . Tell them not to do it .

gingeroots Sun 13-Jan-13 09:51:43

Perhaps the authorities are less concerned because your mother is present ?

You may need to stress impact on her ?

And that she would like to be part of a team caring for your dad ,not someone given no information , watching carers turn up when they like and giving her instructions to help them carry out an unknown and unagreed care plan .

Dutchoma Sun 13-Jan-13 10:00:11

You need to be back to the district nurses at your dad's surgery. Ask for an urgent visit as you have a lot of concerns. They should come the same day.

funnyperson Wed 16-Jan-13 23:28:58

The care company manager visited today and went through a care plan- all seems sensible with no disagreements.

Except that if the morning visit doesn't go up to 45 mins, dad will be expected to be hoisted onto the commode in the morning and be washed while he is having a poo as he can't poo first on his own if the morning visit stays a the current 30 mins apparently. shock
Odd, I really never conceived of the indignity that the frail are subjected to. It is killing my soul = even though things are much much better than in hospital.
Till the morning visit goes up to 45 mins, we have opted for dad to stay in nappies pads so that he can have a wash without being expected to poo at the same time.

We do have happy moments like when he smiles but the smile is coming less and less now. Mum is getting very sad because he doesn't eat. When other peoples parents die, the pain of their loss is what i Have always commiserated with. But this pain of dying -- this prolonged frailty and its loneliness- is hardly mentioned perhaps because it is so painful people don't like to talk about it. Seeing him makes me so wish we had a large family so that he could be surrounded by company and laughter.

That said, he has been out less than a month and he is improving.

gingeroots Thu 17-Jan-13 10:35:08

Sorry it's so hard funnyperson .

Glad you're getting things sorted and that your dad is at home .

As you say the life of a frail vulnerable person is heartbreaking .
They don't get the care they need .
You're right ,it's not discussed .

So sorry you and your family are going through this .

Dutchoma Thu 17-Jan-13 10:36:48

I do so feel for you. This is why I am very, very grateful that I can still cope with my husbands needs and that he can still make it to the toilet on his own.
I know what you mean about the loneliness too, but at the same time dh can't cope with a lot of noise around him.
I know what you mean about the indignity too, I saw that happening to a friend with Parkinson's.

funnyperson Thu 17-Jan-13 14:55:36

Thank you for your posts.
Yes, dad likes to be calm and quiet.

ComeIntoTheGardenMaud Fri 18-Jan-13 19:38:20

I had lost sight of this thread. I'm sorry you're still struggling to make things better for your dad, funnyperson.

echt Fri 25-Jan-13 07:18:04

How's it going, funnyperson? I was sad to see you say your dear dad didn't smile as much as he used to. Hope you are all well.

funnyperson Sat 26-Jan-13 16:09:56

Everything stable. It is clear his intelligence was affected by hospital. He has difficulty finding words. He loves music and when he laughs the sun comes out.

I am looking for some wide straws so that he doesn't take so long or so much effort to drink. He isn't eating. The memory of the endotracheal tube has proved too much.

Dutchoma Sat 26-Jan-13 17:06:14

Try places like Kentucky Fried chicken or Burger King where they sell slush puppies. That's where I found mine.

funnyperson Mon 28-Jan-13 01:43:43

Thank you- do you know I have never been inside either of those so now I have a reason to go! I might just rush in and rush out though- perhaps the local cinema might have some too - perhaps I'll check the cinema out first wink

OK - dad has a bed sore- the district nurse is now going to come twice a week. The carers haven't been changing his position it seems. I read the NICE guidelines on bedsores and the Royal College of Nursing guidelines and it seems we should be given a regime for positioning. I wait with bated breath and very little hope for this. Isnt it dreadful that I have such little hope of getting such a basic thing as advice to pass onto carers?
I will also ask nurse what dressings she uses- apparently hydrocolloid ones work best- much better than gauze and saline.
Dad has a special bed with a special mattress but I wonder now if the electric position changing thingy is working. Possibly not. I will ring the company tomorrow to ask someone to come and check it over.

The bed is truly wonderful- it can go high up so that dad can look out of the window at the garden and as it is the front garden he has a good view of anyone coming in and out of the house. We planted roses in the bed outside his window in the winter and clematis and a magnolia and it will be lovely if he is able to see them. When adjusted to be low, the bed is perfect for watching tv- today we all watched the programme on wild life in Africa together and chatted about when mum and dada went on safari. Dad cant see the tv very well but he can see the bright colours and the commentary is always evocative.

gingeroots Mon 28-Jan-13 10:05:29

Isnt it dreadful that I have such little hope of getting such a basic thing as advice to pass onto carers?

Oh funny it is dreadful .

And here I go again - good luck with the "district nurse" .
My experience is very ,very ,far from good .
A merry go round of health care assistants ,no continuity ,missed visits ,visits when not expected .

Pressure sore on sacrum progressed to a grade 4 hole while district nursing team visiting 3 times a week .
How stupid and naive we were to trust the DNT ,I would never leave them to it again .

And getting the dressings !
Not ordered ,ordered but wrong ones delivered ,ordered but no one has told you that you need to collect them ,on and on .

You're much better off reading up and buying the expensive dressings yourself .
I think most elderly people have very fragile skin and that makes the hydrocolliodal ones not suitable .

Would depend on skin and stage of pressure sore of course .

Constant use of diprobase helps in prevention or before pressure sore is an open wound .

Services vary ,perhaps your DNT will be great . I'm sure some are .

funnyperson Mon 28-Jan-13 20:56:15

District nurse didn't turn up-off sick- she will come tomorrow apparently along with

-physio assistant for physio-wants him in his chair for 40 mins +me there
-district nrse-wants him in his bed
-carers-want to wash him
-council finance assessor-wants all finance details+talk with mum
-GP-wants to do rectal examination

All want to come at the same time ie mid morning- none can change

hahaha I bet they all turn up.

Co-incidentally I have a hospital appointment-mid morning. But nobody checked whether it was convenient. They just rang mum up and told her they were coming.

I suspect this is going to go pear shaped. I have rung the physio assistant to ask her to change her day if possible and will ring the council to ask if the financial assessor can change his day. I hope they will change- though everyone is trying to get their reports in for the care package (which dad still doesn't have in fact) as the funding transfers after 6 weeks.

Dad is fine but has 2 more sores. The carers took the district nurses dressing off. It is all getting out of hand.

Poor mum. Of course she thinks she is about to be robbed by the financial assessor. Which she probably is.

funnyperson Mon 28-Jan-13 21:00:56

gingeroots yes I read up on pressure sores- NICE guidance and Royal College of Nursing guidance but am not much wiser as a result except to think he probably needs dressings on them- alginate followed by collagenase or colloid- but will ask her tomorrow if I'm there.

funnyperson Mon 28-Jan-13 21:02:00

What dressings worked with your family?

gingeroots Mon 28-Jan-13 21:48:29

Oh Funny it sounds awful - and so familiar .

The lady ( my friends mum ) that I helped care for was always piggy in the middle between the carers and DNT .
The carers hated the DNT .

What worked for her was continuity ( we eventually ,after formal complaints ) managed to get the same people dressing the pressure sore .
And improved diet .

Specific dressings were mepilex and also acquacel secured with tegaderm or mepore film .
IME DNT don't like using film dressings - they are very fiddly .

Honey helped . ( though my own mother reacts badly to honey so obviously not very everyone ) .
Silver mepilex worked when it was a bit pussy/infection suspected .

And not changing the dressing too often as it disturbs the wound bed .

I'll be thinking of you tomorrow . Your poor dad .

gingeroots Mon 28-Jan-13 21:50:50

PS The lack of continuity was only a small part of a large number of issues - I didn't make a formal complaint just over that .

Dutchoma Tue 29-Jan-13 08:40:20

You need to get your district nurses to apply for Continuing Health Care, not social funding. CHC is not means tested.
Not a lot of time to reply we are off to an aapointment with the consultant at the hospice, who were a bit 'meh' about the lack of input from the DNT. We will see what happens.

gingeroots Tue 29-Jan-13 10:19:44

That sounds interesting Dutch - tell us more when you have time .

Good luck at hospice .

Funny these
were used a lot on friends mum ,not terribly sure about them ( the adhesive is a bit irritating ,and my mum can't use them at all ) but everyone is different .
And says you can use them to help prevent sores which is useful .

Friends mum we used to use very small cushions ( IKEA have good cheap range ) to wedge her slightly in different positions ,keep her heels from touching bed ( which had air ,ripple mattress ) .

And Cavalon spray on her bottom rather than diprobase because carers couldn't be disuaded from idea that the thicker they applied diprobase the better .

Dont know if any of that helps ,sure I come across as know it all /see your horror story raise mine - but I don't mean to ,just sharing my own hard won experience in case it helps .

Dutchoma Tue 29-Jan-13 10:36:23

We came out of the Royal Brompton Hospital with the recommendation that dh use a VPAP machine (Similar to CPAP but with variable, rather than continuous positive air pressure), that he use 2lts of oxygen, that we thicken all his fluids and liquidise his food and that we seek referral to the palliative care team, who were asked to sort some respite care for me. I had no idea what that meant, and was surprised to find they were hospice care and MacMillan nurses. Just to clarify: this is not cancer, it is an unidentified lung disease.
Between the Mac nurses and the district nurses they applied for funding under continuing health care. We made it clear we would not want to apply for means tested funding as we would not qualify and so we never have.
I am still dealing with day to day care myself, but we had a fortnight in a nursing home for dh and there is still funding available if we want it. That is one of the things which we will no doubt discuss with the hospice this morning.
So we have not applied for carers to come in, frankly, Funnyperson's experiences are enough to put anyone off.
From time to time I see adverts on Facebook which say: make sure you do have to pay for the care you get. There is a difference between social care which you have to pay for if you can and health (nursing) care which you do not.
Hope this helps.

gingeroots Tue 29-Jan-13 10:44:18

Oh Dutch what a lot to cope with ...

I'll have a google about continuing care as I have a friend whose husband has PSP and it might help them .

funny sorry ,it was sudacream that was being trowelled on with not too clean gloved hands ,not diprobase .

And apologies to all the excellent members of DNT and carers that exist . I know you're out there as well battling on with less informed colleagues .

funnyperson Tue 29-Jan-13 17:04:27

Terrible day. Non stop visitors. Even though I managed to cancel physio.

Finance person was terrible. No info before hand as to what it was all about. Wanted mum to sign practically a blank cheque even though she cant access dads accounts. He grudgingly agreed to give us a written estimate and we didnt sign anything on the spot.

Have asked the dept to look into continuing care.

dutch you sound amazing. The problem is that mum cant care for dad as she is too old and frail herself and I am supposed to have a job <bitter laugh>. I can cope with dads physical illness.

Mums Alzheimer's really really really bugs me. Today for some completely inexplicable reason she asked me to beat her. OMG OMG OMG. I have never laid a finger on her. No one has. Never threatened, nothing. What is that all about? I'm a total pacifist anyway. I just want to walk away from her and never ever ever see her again in my life. I had only just spent the day with her helping though all the visitors.

The doc says dad should go into hospital 'if the family want' . What does that mean? Dad doesn't want so I will stay the night at their house and give him sips of water. Which is what mum wants all along- someone else to look after him who is not her. Why? Why cant she give him sips of water? Why is a frail old man always someone else's job? What kind of marriage is it that ditches a frail husband?

Dutchoma Tue 29-Jan-13 19:39:58

No, of course your mum can't care for your dad, if she is old and frail. I'm only just doing it by the grace of God and the skin of my teeth, the former more than the latter.
If they want your dad in hospital, say you will only consider a hospice.
It's your GP that needs to apply for the continuing health care, emphasis is on the 'health' as opposed to social care.
I had another look at the criteria and from what you have told us he qualifies on all fronts.
Marie Curie nurses can do overnights, have you looked into that?
Well done for dealing with the bullying finance person, don't sign anything before you have looked into the continuing health care, hospice care and Marie Curie nurses. All these things are not only for cancer but for anyone who needs end of life care.

gingeroots Tue 29-Jan-13 19:49:18

You sound almost at end of your tether funnyperson .

You need some time out , not a night without sleep sad .

Very understandable reaction to your mum's remark ,I would ( and sometimes do in response to much lesser remarks ) feel the same .

Why does your dad have to have water at night ? Is there no way round that ?

And what is the doctor on about ?

Sending you strength vibes .

funnyperson Wed 30-Jan-13 08:43:55

Thank you so much thanks the online support really really helps isnt it strange?

I stayed the night so poor old mum got some sleep which I think was the problem. It wasn't any trouble for me really and I think I will stay the night at least once a week from now on. They both looked so much better and happier this morning. Her weird comment must stem from something in her childhood- my grandfather was strict apparently though from all accounts she had a very happy childhood.

Thank you for your suggestions re funding - all very useful.

I am so glad we didn't sign anything- I am still reeling from how the finance person tried to make mum sign stuff -wanting payments from us to start from 4th Feb (ie less than 2 working days ahead) and nothing in writing about how they were calculated, who they would be to, what exactly they would be for, how long for, etc and as mum didn't know what info was needed we didn't give him all the info asked for anyway.

All very odd, considering its supposed to be a financial transaction. I would have thought he was a con agent except he showed us his ID. We have also asked the council to look into something called direct payments.

I am knitting a lovely jumper, gardening, and at the weekend going to see DD and a very good friend, sticking to my exercise programme, listening to classical music and -most important- working. Sanity and happiness are paramount. Thank you all again for not slating me.

funnyperson Wed 30-Jan-13 08:46:32

I forgot to say - I had a discussion about the quality of the care services with the social services which commission them, and now they arrive to schedule and do the job they are supposed to do. So much better.

Dutchoma Wed 30-Jan-13 09:00:49

Oh my goodness, how glad I am to see your post Funnyperson.
One more thing I thought of:
It took us a month for the GP to refer us to the Community MacMillan nurse. Once he had done it she was in touch by phone within 24 hours and visited five days later. The reluctance is of course a funding issue. It drives me potty that everything is money,money,money related and that you you have to beg and wheedle to get what is there.
But that's the way the cookie crumbles.
I am a knitter too and that is what mainly keeps me sane.

gingeroots Wed 30-Jan-13 15:53:59

Oh funnyperson why on earth would we slate you !
Award a medal more like .

I might be wrong here but my whole instinct is to avoid direct payments .
As far as I know this is where they pay the care budget to you - and you employ the carers .
But you need to employ an awful lot of carers to cover sickness ,hoildays etc - seems really hard ,a cop out by the authorities .

But I might be wrong .

Worth a seperate thread on peoples experience of direct payments ?

Hugs to you .

WynkenBlynkenandNod Wed 30-Jan-13 18:23:29

Oh FP, sorry it's all so difficult sad. You are doing a brilliant job and good that you are getting a bit of time to yourself. Know very much about the supposed to be working thing, thought I was going to manage this week but haven't. Make sure you look after yourself, I managed to ignore a UTI for a fe weeks as I was too busy to notice and just thought it was all due to stress.

Is your Mum getting enough fluids herself ? When there's so much going on it would be easy for her to forget to drink. Someone said to me about the direct payments and having all the hassle when someone is off sick. Mum's care package has started with a new agency and they seem pretty professional. I'm a bit worried about the financial assessment now though, she can't even find her latest bank statement and refuses to ring for a duplicate.

Dutch Oma, you are doing a fantastic job. I'm sorry that all your excellent knowledge has been learned the hard way. I had a German Oma when I was young. Gingeroots, hope you and your Mum are doing ok. Off to the gardening thread now to think calm garden thoughts.

Dutchoma Wed 30-Jan-13 20:02:54

You are not wrong WBandNod, it has been a tough time, but it is good to share and being able to support others on their journey.
No idea about direct payments, I'm afraid.

echt Thu 31-Jan-13 09:56:42

Wow, funnyperson, that financial deal sounds little better than cold calling double glazers. No written details, no sign, I'd say.

Good to see you're getting some you time, but why would we ever slate you?

What you're doing is the ordinary heroics of an everyday life. Good on yer.

Dutchoma Wed 13-Feb-13 10:24:40

How is it going funnyperson. Thinking of you and your family.

funnyperson Thu 14-Feb-13 20:10:54

Dad is fine- frail but fine. Two hospital admissions have been prevented so far by encouraging him to drink more.
He still has nightmares from the Intensive Care Unit and still gags if anyone puts anything in his mouth (in memory of the suction) he can just about manage to put a toothbrush in his own mouth, and occasionally a spoon with some food in.
Mum is frail but fine.
I have post traumatic stress disorder from his hospital admission. I get nightmares and flashbacks. Who would have thought it.

Dutchoma Fri 15-Feb-13 10:54:54

Thank you for updating funnyperson. You do realise, don't you that nobody can force your dad to go into hospital, don't you.
Have you heard of 'hospice at home'? If not, it is another thing that your surgery can organise although they are reluctant as it is expensive.

I can well imagine that the stress of it all has made you all feel ill, the story is really awful.

Best wishes to you all.

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