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.

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.

oh funnyperson your posts aren't boring !

they bring tears to my eyes

what a lovely family you sound

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

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!
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.

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.

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.

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.

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.

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

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!

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.

Glad to hear that things are getting better.

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?

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

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.