Partial sight and registration?

[Brucie]

My wife Jan can, I'm sure, no longer see.

I believe her eyes could function, but that the dementia has destroyed the neural connections that feed images to her brain - which can no longer interpret them anyway. Also, physically there are problems and her left eye appears lazy. She can never focus on me [or anyone else] when I am [they are] anywhere near her.

Very occasionally, for a few seconds only, her eyes will seem normal and she may suddenly appear to be able to see the person in front of her, then her eyes immediately drift off again.

The eye people have accepted that there is no way to determine what or whether she can see, since she has also lost speech that is recognisable, or comprehension of what they are trying to do.

The question is - has anyone else come upon this, and have they ever managed to register such a person as either partially sighted, or blind?

Terms of the EPS I have for Jan say that I need to invest what little money she has to best effect. At the moment, she pays a little tax, mostly because of a small occupational pension. She would receive additional allowances if she were registered blind.

 

[CraigC]

Hi Bruce,

Although I cannot answer you specific query, I have had dealings with the RNIB and found them to be very knowledgable and helpful. You can find their website at:

http://www.rnib.org.uk/

I have also contacted their helpline, again highly recommended. Hopefully they can put you in contact with someone who has experiences in this area.

RNIB Helpline 0845 766 9999

I find the visual loss very disturbing and until recently was unaware the Alzheimer's also affects part of the brain that is responsible for vision.

Good luck and kind regards
Craig

 

[Brucie]

Thanks Craig.

Here's an update.

This morning the home had asked if I could accompany Jan to the local hospital to see a consultant in the Eye Clinic.

It is interesting to see how something seemingly simple like an out-patients appointment can be challenging.

I arrived at the home at 9.00 to find Jan all washed and dressed, but still seemingly asleep in her reclining chair. Hmm... interesting, I thought, how the ophthalmologist is going to make any sort of judgment here!

Before we could leave, we had to decant Jan into her 'normal' wheelchair. Because of her spine curvature [another side effect of the dementia] I had to keep the wheelchair tilted back to stop her bending double all the time. Staff at the home are not allowed to do this because of Health & Safety rules. Me, with a bad back, well I can.

We used the same taxi there and back and the driver was really helpful - I think the home uses him a lot because he can accommodate wheelchairs.

When we arrived at the hospital they pointed to a remote corridor full of people and asked us to wait there. At first I had the wheelchair on the ground normally, and I held Jan back with my forehead against hers, so I could also talk to her. It must have looked weird and people maintained their distance.

She was still more or less asleep, though I had the occasional whisper in reply to something I had said. We were awaiting our 9.55 appointment until 12.00, so partway through the wait, I tilted her chair back and held the handles on my knees to keep it secure.

At 11.00 a nurse arrived and said "oh dear, I'm supposed to put drops in her eyes". I told her there was no point [and no way!] and suggested we simply see the consultant.

We were then led to another holding area where all the seats were full. I stood there, awkwardly holding the chair tilted and trying to control Jan who was wide awake by now. [there was a time when the child at the end might have offered their seat, but one look at the portly young mother filling a second chair told me there was no way this would happen. Apologies for a Meldrew Moment.]. A nurse brought a chair from elsewhere, and later offered us some water, which was observant and kind.

When the consultant called us in he apologised profusely and said it should not be like this. He tried to examine Jan's eyes, but initially gave up and asked me what was the problem. I explained, and he then took a look in each one in turn. He then said that she was not organically blind, but was effectively so because of the dementia. He will recommend she is registered as blind.

In all, it took over 2 hours for a 5 minute consultation. I really think it is a shame that the GP for the home couldn't simply have been allowed to make the diagnosis [as I had hoped would happen] rather than putting a dementia patient through additional confusion.

But if that's what it takes.....

 

[karen_white]

That sounds terrible Bruce.
It always leaves me speechless how people can look on and not offer any help - only if it may be a chair to sit on!

Good outcome though in that Jan should receive some additional allowances.

Take care.
Karen

 

[CraigC]

Hi Bruce,

What a day you've had.

I find it absolutely shocking that they were not prepared to visit Jan under the circumstances and that they treated you like this.

The wait doesn't surprise me as I've spent many hours waiting for eye appointments, over five hours once at Moorfields Eye hospital - luckily I was fit enough to pace up and down for the duration :-}

My guess is that the drops would have been used to dilate the pupils so he could examine the retina. You did the right thing holding off as the reaction is very disturbing (it stings like hell and then your eyes are so sensitive to light you just have to keep your eyes closed for a while). This would have been very disturbing for Jan. When the doctor says that Jan is not organically blind, does he mean that if it were not for the dementia her eyes would still function i.e. its the connections between the brain and the eyes as oposed to the eyes themselves.

Really glad you got it sorted (hopefully), but you probably need to get your feet up for the rest of the day!

Kind Regards
Craig

 

[Brucie]

Hi Craig

I think the need to go to the hospital is probably more due to non-joined-up working by the NHS than anything deliberately stupid. The out-patients is 2 minutes across the same site, so a quick trip would not have been a problem for the consultant, had he known the situation. In the circumstances, and in ignorance, he may have believed he needed his special gear at the hospital.

Perhaps I make too many allowances!

You are correct about the drops, though I didn't even think that far as I was more concerned with causing Jan problems in even applying them, let alone what the reaction would have been.

You are also correct that it is the deterioration of the neural connections for the eyes that is squiffed; otherwise she would be able to see just fine. [by the way, this is my diagnosis - no medical person ever seems to tell me anything without my having to threaten murder and mayhem. The consultant just agreed when I told HIM what the problem was]

Get my feet up? Well, not quite. Even after all this time looking after Jan, I felt really guilty that I had not been able to stop her eyes getting in that state. I still feel responsible, and I know it is stupid. Only hits me occasionally, but it is not nice.

So, to take my mind off it I have been mowing the lawns, doing some more decorating, etc. As I write this I'm having tea, scones, clotted cream and jam, and if that doesn't work, nothing will!

 

[Kriss]

Hi Bruce

Chocolate works for me! Having lost a stone and a half after we lost Dad (previously gained while he was ill) I have now put it back on in the 6 months since Aunty started to have problems.

No seriously this sort of thing just shouldn't happen should it - like you I constantly make excuses for people as it must be the system at fault but I cannot condone poor manners and inconsideration.

Aunty had an eye test quite early on as we, her friends and her neighbours were convinced her sight was very poor. However after a consultation (eyedrops included) the specialist pronounced she had very good eyesight and therefore the problem must be neurological (so back to her other consultant we went - another non committal diagnosis as usual). The test itself was virtually impossible as she did not seem able to process the instructions to follow his finger/touch her nose and would read lines at random from the chart (even the smaller letters) but occasionally struggling with the right word - e.g. sometimes "n" wound come out as "9".

Oddly though, since the eyetest we have not witnessed any more problems with sight? Maybe it is because her physical health is much improved now she is being looked after in the home?

Good luck with the allowances - the Inland Revenue might have a bad press but I bet you get better service from them than the NHS!

Kriss