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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.

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.

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 Wed 13-Feb-13 10:24:40

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

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 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.

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.

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 .

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.

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.

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.

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 .

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.

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?

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 .

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 10:19:44

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

Good luck at hospice .

Funny these www.molnlycke.com/Mepilex-Border-Sacrum.aspx
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 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 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 .

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 .

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

What dressings worked with your family?

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 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.

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 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.

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.

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