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.

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 .

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 .)

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 .

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.

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. 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.

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

Fantababalooby .

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

What good news. Trust your Christmas was of the happiest.

Christmas was very very happy. 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. 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.

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.

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

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 .

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!

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

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.

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 ?

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.

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 ?

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.

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

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 .