ideas on vision and dementia

[mums daughter]

I have a couple of I think very valid points here I'd like to just talk about, as I feel sure it might be of help to some people, as we're all unfortunately here for the same reason.My mum is in the mid stages of AZ, so I understand how there seem are so many things and feelings to deal with, sometimes you just feel overwhelmed and desperately feel the need to just walk away. I have found a pattern developing with this concerning myself, and I realise that close to menstruation, I am a lot more fragile. Now that I see a logical reason, my hormones are upside down, I cope better by telling myself to get a grip, as I know the feeling will pass. Is anyone else like this?

Second is, I haven't heard mention of AZ and all dementia sufferers and maintaining the quality of their vision for as long as possible. I have an opticians practice myself, so understand perhaps better than most the necessity for a certain level of understanding to be able to carry out an eye examination to get an accurate prescription. My mum can still read, and writes birthday cards etc with a little help, but is unable to make a simple cheese sandwich without prompting from us as to what what to do. I have arranged a carer for mornings as she forgets to wash, and would wear her bra back to front and six pairs of pants left to her own devices. I think you get the picture of how advanced she is. I have just had her eyes examined so that I can make her some new glasses with the most up to date prescription, simply because I know that in a couple of months she will be incapable of distinguishing the difference in lenses during an eye exam. She will still be able to say what letter it is for a while, but she would need to say which lens was clearer. This can be very confusing for anyone, so for someone with dementia, almost impossible. If I hadn't had mum examined, the reality would be that she would be wearing glasses that would make her vision blurred next year, adding to her confusion, causing possible headaches, and isolating her further still in her blurred world. A couple of years ago a lady brought her AZ sufferer mum in for new glasses. We managed to do a test to the best of our ability, but I was dismayed when the daughter said just do mum distance glasses as they're cheaper as she doesn't read now. As a bifocal wearer for years, her mum was used to having clear near vision as well as distance vision for walking about, TV etc. I explained that the near vision part of her glasses wasn't just for reading with, and that her mum still needed to see her food when she was eating, objects that she might pick up, and most importantly photographs of past times to remind her of happier past times etc. Rather than concentrating on spending as little as possible (as it seemed that just because she forgot things and got confused, her needs weren't as important, so just get the cheapest possible), concentrate on getting a good pair as these would probably be the last they needed to buy, and that they would probably be needed for a long time. Generally a lot of people with AZ etc don't look after their glasses as well as they used to, they get sat on, scratched in the bottom of a bag, left in all sorts of unsuitable places, ( ruined in a hot wash of a dishwasher on one occasion I remember well), so get a good strong pair, and if you can afford it, get a spare pair as well. Keep a copy of the last prescription safe, as you might need it at a later date. If glasses get broken and an up to date prescription is then impossible get as an examination cannot be done due to the further advance of this dreaded disease, glasses would have to be made to the last prescription. A prescription is only acceptable up to 2 years old normally, but in these circumstances you can only use the latest prescription you have.
I hope I haven't sounded like I'm preaching here, I just wanted to help in any way I can as I've had so much help from TP and thought this a very valid point that a lot of people might not have thought a lot about, but can made such a difference to our dear loved ones that we're all here about.

Sorry to go on, once I start about optical health, I'm so passionate about it you can't shut me up. I even started a home dispensing service in my area especially for AZ sufferers, as I know how distressing choosing glasses can be on top of an eye examination.

Take care everyone, I'm going to shut up now as you've probably had enough of something as boring as glasses compared to the bigger problems we're facing every day.

Catherine

 

[Jo1958]

Catherine, hi
Fascinating post, thank you.
I agree about irritation just before and during periods, very common and makes perfect sense to me, as you say it is also easier to wait a minute before responding when you know you might be more irritable than usual. Menopause is the same as it has your hormones all over the place, usually hot places with me!

The visual problems, well I totally agree about eye tests and making sure that all specs are as up to date and useful as possible, we've been through it recently and I have to say the optician was good but not great, seemed to think it didn't matter much because hubby can't read, well!!!!
We paid a lot for hubby's specs. and got reading ones and prescription sunglassess too, I waited 6 months for mine because we didn't have the money and his need was urgent and mine wasn't.

Seeing, hearing, well keeping all our senses as efficient as possible is so very important.
Best wishes, Jo

 

[Jancis]

Dear Catherine,
This is a wonderful post and I am sure it will be a great help to many people. Thank you for taking the trouble to explain the vital importance of keeping up to date with good glasses. I was quite surprised when I took my uncle to the optician as he was very co-operative and was perfectly happy to have all the various tests. He had no trouble reading the letters on the chart even though we thought he had lost the ability to read. I decided he should have two separate pairs for long distance and close distance although the optician suggested bifocals. As he had never had bifocals before I was concerned that he might find them confusing and that he might have difficulty looking down when climbing stairs (at that point he was living at home and had a horrible staircase to contend with).
Major problem was that he kept getting the two pairs muddled up and within a couple of days he told me they were no good at all and he refused to wear either pair. Did I make the wrong decision? My uncle is a very unusual case and his condition has made him very contrary (that is a mild word to describe how he is but I couldn't think of another). The long distance ones were expensive too as the optician recommended light reactive lenses as he had early signs of cataracts. She didn't try and persuade me to go for the bifocals although she knew about his condition.

Perhaps we were just unlucky with our relative - maybe his condition is too advanced. But now I am worried - did I do the wrong thing? Should I get him a pair of bifocals - he doesn't have the staircase to deal with any more because he is in a nursing home but he is very frail and has already had one bad fall.

Best wishes and I understand and agree totally about hormones and our emotions!

 

[PostTenebrasLux]

Dear Catherine,

Thank you for your interesting thread. Hormones and glasses?! Great!

My questions are reactions to your post: what do you do for people who cannot read (different alphabet for example (Greek, Arabic etc) or who are too young to have started reading and writing?

How do you go about "diagnosing" a correct prescription for say Autistic or severely impaired individuals or those who suffer from similar disabilities, also severe Dyslexics?

Do you use images e.g. coat, banana, trousers, house for individuals who still retain the concept?

Posterior Cortical Atrophy is a rare variant of Alzheimer's (as brought to attention by Terry Pratchett). Memory remains intact for a considerable time though vocabulary recall becomes poorer gradually. The visual perception is distorted, a face looking to them like the face of a Picasso portrait. Though they will tell you that they are laying the table with the fork on the left, knife on the right, spoon above as they are doing it, the cutlery is incorrectly positioned. Gradually vision loses pixellation, like a moth eaten sweater and the holes progressively diminish any identifiable perimeter. However, the actual eye may remain healthy, strong and with 20:20 vision!

What options do you have then?

Thank you for sharing an oft forgotten aspect of care.
Hope the hormones behave for you.

Martina

 

[AlsoConfused]

A very few opticians have kit which automatically assesses the right prescription for patients without needing any input from them. The Geoff Wilson Contact Lens Clinic (Birmingham - does sell glasses but is set up as a specialist contact lens clinic)has this kit, so has Moorfields Eye Hospital (I speak as an ex patient). Can't remember anything technical about it but on the ones I used, I had to concentrate on a picture of a yellow plane.

If you can find out what this "thing" is called from our forum optician(!!) or either of the organisations mentioned, it might be worth while checking whether there is one in your locality.

 

[Feezee]

Hi Mums daughter,
Very interesting. I could have substituted "glasses" with "Hearing aids" in your post. I've just had fun trying to organise replacement hearing aids based on old prescription as my father is way beyond being able to do a hearing test.

And a few months ago, I went through the same regaring his glasses. He sits on them regularly so it's quite a challenge. ;-)

Feezee

 

[Onlyme]

Mum seems to be collecting glasses from around the home. She wears anyones so having her own seems to be a bit pointless at the moment.

 

[PostTenebrasLux]

Dear AlsoConfused,

what an interesting bit of technology! How "exciting" and hopefully something that will lead to better adjusted care for difficult situations.
Sadly my cousin is in the very late stages of AD and just about surviving, but it is good to know for others.

Many thanks,

Martina

 

[PamD]

Thank you for this, Mumsdaughter. Isn't it wonderful the way people on TP can offer such a range of knowledge and experience!

I haven't got to grips with Mother's optical needs since taking over caring for her when Father died in December, but she's very shortsighted and wears bifocals and I really must find out which optician she goes to and get her a checkup. At present she can probably cope with the tests (though I always find it really difficult myself at the "is it clearer with this lens or with this lens" stage!), but thank you so much for reminding us all of the need to keep prescriptions up to date in anticipation of the time when someone can't answer the questions at all.

Perhaps at 93 her eyes are pretty stable? But I know how important a regular sight test is for all sorts of health reasons (cue for saga of neighbour who went for a new pair of glasses 'cos his wife had a tax rebate and they were feeling extravagant, and ended up with surgery within a week on the tumour which was pressing on his optic nerve which he didn't know about.)

Pam

 

[sleepless]

Thanks, Mumsdaughter, for this post.
Dad's glasses are often bent out of shape, very grubby-looking (I don't know how he sees through them sometimes) and at present one of the nosepads is broken, so they are cutting into his nose.
Fortunately he has another pair (bi-focals) but I inadvertently left him without glasses in hospital by bringing the bi-focals home with me (80 miles away) and I forgot to pick up the broken ones for repair....it's an ongoing task to keep up with glasses somehow.
We took Dad to a national chain of opticians in March as he lost his glasses. Went there in the belief he might have a pair to wear the same day, but not so. I now wish I had tried harder to find out the name of the optician he used to go to (he couldn't remember) as I don't feel happy about how he sees with the new glasses. But maybe he wasn't able to give adequate responses to the opticians questions?
It's just one more in a long line of difficulties with dementia.
sleepless.

 

[mums daughter]

Hello, thank-you for your kind replies, I'm so glad my thread was of some help and raised the vision issue to some people who might not have been aware that it is an issue that specifically needs addressing for people with any type of dementia.
Jancis, no you didn't make the wrong decision as there is no right and wrong as all people cope differently with different types of lenses. The key is finding out whats right for the person concerned, and being given as much advice as possible to make that decision. Two separate pairs of glasses can be a good option as it is easier to walk around in distance glasses, on stairs especially, as the bottom of the lenses are clear to see the ground clearly. Near vision glasses are excellent for seeing anything close which includes eating, reading, looking at photos and pictures etc, so separate pairs are safe. BUT, older people very often get confused with separate pairs as they don't understand what to wear each pair are for. A popular misconception is that near(reading) glasses are for reading any type of reading, so they wear them for TV as you read the writing on TV. So, when they have their near vision glasses on because they are watching TV, everything is a blur, they try to walk around with blurred vision complaining that their glasses are no good, when they actually have the wrong ones on. Obviously, this is dangerous, especially if they are climbing stairs. Unfortunately it rarely occurs to them to try the other glasses. With bifocals and varifocals, the near vision area is at the bottom of the lenses so they are very practical as they avoid confusion. Once again there is a big BUT. As the near vision is at the bottom of the lenses, it will be blurred when looking at the ground. Anyone already used to these type of lenses can still cope with them for a long time. At the time of dispensing the glasses, special care and patience is needed to explain all the lens options available, as well as an explanation of any expected drawbacks to the person accompanying the person with dementia.
So as you can see, there is no perfect solution, just finding the best one that the person concerned will be best be able to cope with. Optometry is a very complicated subject to try to explain or advise on, but one thing I would say is that if it is decided to go with varifocals, then get the best quality you can. With over 600 on the market, some excellent, many not so good, opt for the best. These will give much better vision by having less peripheral distortion, be balanced so they cause less sway as people tend to call it, and generally be much more comfortable to wear than basic varifocals. This applies to anyone wearing varifocals, any age. Don't forget these glasses might have to last a long time so the more comfortable the vision the better.

Hope this isn't too confusing, I think we're all confused enough already!!!!!

Take care
Catherine