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.

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

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.

Oh Dutchoma your poor DH. You sound so courageous.

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.

Thanks.

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.

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.

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 .

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.

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 .

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 .

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.

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.
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.

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 .

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.

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

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

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.

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.

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

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

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.

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 .

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.

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.

What dressings worked with your family?