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

[funnyperson]

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.

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

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.

Oh my goodness Funnyperson, I'm so sorry . 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.

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

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.

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.

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.

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

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 .

www.bbc.co.uk/programmes/b01p0fps

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 .

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.

I mean ITU kept his special mattress.

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.

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

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? ()

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

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 .

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

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

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

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 www.energybulbs.co.uk/products/Day+Light+Bulbs/Daylight+Spiral+Bulbs/DAYLIGHT+Spiral+Bulbs/BioBulb+SAD+Daylight+Bulb+25W%3D100W+ES+/936376506 )

and a jolly good cube that you press and it tells you time and date .
Like this www.rnib.org.uk/shop/Pages/ProductDetails.aspx?category=talking_clocks&productID=CC5301

And these
www.rnib.org.uk/shop/Pages/ProductDetails.aspx?category=tactile_labelling&productID=DL1501

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

I hope he comes home soon .

Very many hugs ,keep strong .

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

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.

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.

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?

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.