Last week was occupational therapy week and I decided that we should take the opportunity to celebrate five years of collaboration between the Vision Impairment Charitable Trust Aotearoa (VICTA) and the school of occupational therapy.

We had two separate events. The first was a public talk at the Dunedin Library. This was entitled: “So, your eyesight is failing….now what?”

The wonderful Niishahn Taan from HumanWare made a special trip down from Auckland to demonstrate electronic magnifiers. There were also occupational therapy students presenting briefly about the vision screening project at Leslie Groves rest home (Rebecca Mirfin and Taryn Fletcher). Sarah Drummond also presented very ably about the vision screening project at Tahuna.

Here are some pictures:

I gave a talk about my mother. There has been so much learning for me over the years from this experience of having a visual impairment in the family.

This is something like what I said:

People don’t always get where occupational therapists ‘fit’ in the overall picture about vision impairment. There’s so many professionals involved: ophthalmologists, optometrists, orthoptists, occupational therapists…..on the health side; then there are vision rehab teachers on the education side. Because occupational therapists are able to work with the whole visual system

We work from the front of the eye to the back of the brain (to the occipital cortex, and consider the ventral and dorsal pathways that deal with the what we see and where we are)

Why are occupational therapists special:

• Because we are concerned with how people do everyday activities and
• our whole society is built on the capacity to see,
• vision is the most dominant of our five senses
• 60% of our brain is involved in vision at some level (20% dedicated to vision)
• we need vision for education and sport (when we are young), for the workforce and for aesthetic enjoyment (when we grow a bit) and for social engagement, mental health and managing our conditions (as we get older)

• Because everyone (if they live long enough) will have a visual problem
• Because visual problems are increasing because of an ageing population, more time indoors and unhealthy eating

• Because we are already acknowledged as the experts in US and Canada
• Because there is enough of us already trained to integrate vision into our generalist practice
• Because timely input of quality care can make all the difference to how a visual impairment will impact on your life

So – your eyesight is failing….what do you need to know (what did I need to know)

Picture this

Here is a woman in love with life. She has raised her children and worked hard. There are tough things, like losing her husband too soon and not having a pension. But she fought back and made a life for herself. She got back to her golf; started painting; got into reading about deep ecology and spirituality for the first time since her youth.

She’s in her 70s now and things are looking up.  But then there’s a diagnosis of cancer. It doesn’t look good; She has to do property development if she’s going to have a pension, so this is the priority. She talks to doctors, but even getting the diagnosis for cancer was difficult. Nobody seems to take her seriously, now she is old. She’s worried, and it’s hard to find a doctor who listens or cares enough to put the pieces together.

She’s got high blood pressure. Her grandmother went blind. But she doesn’t put two and two together when something starts happening; there’s a wavering in her vision; some lines of distortion; she doesn’t know who to talk to about it. She’s an intelligent woman, a pharmacist, but she doesn’t know what to do. Suddenly the vision in one eye is almost gone. She doesn’t want to tell anyone. The family would just worry.

Who can she talk to? She organises herself to get to an ophthalmologist.

But by the time she gets to the ophthalmologist, the vision in the eye is gone and she can begin to feel that the second one is going.

She’s well insured, so the injects of avastin start immediately. No waiting  It’s hard to hide something like this from the family. But they are all more worried about the cancer. A friend takes her to cancer appointments, and now she also takes her for her eye injections. But gradually it gets harder to hide the loss of vision. Nobody really understands about the visual thing, so nobody much asks her about it. She certainly doesn’t talk about it. It’s not what you do.

The first thing that the family really knows is when she gets a new car and there’s lots of scratches on it.  She’s always been a really competent driver. She’s competent at everything that she does – which doesn’t stop the family from teasing her. Somehow nobody wants to talk about the scratches on the new car.

Nobody asks her about her driving, but she’s got it all planned out. If the doctor takes her driving license off her – then she’s get a mobility scooter – even though she’s living up a steep hill. She forgets that it’s not just her eyes that are aging. And anyway, the doctor doesn’t tell her to stop driving. She’s still got one eye, and that seems to be enough. The optometrist tells her she’s okay to drive also. She presents so competently and is so independent….nobody thinks to ask her whether she is worried.

She needs to drive: to take out her friends for coffee (she’s the last one driving), and to get to mass and to her weekly prayer group. The trouble is that now she can’t hear the group. Somehow they all seem to be speaking more quietly, with a holy gentle kind of voice that she can’t pick up anymore. The leader of the group does try – they say they will speak up – but they keep on forgetting and she decides it’s just too hard and she feels a bit disruptive in the group.

She drops out. The leader of the group writes to her and she struggles to write back. Bit by bit every line that she writes is getting wavery. She can sign things, but sentences start to get skewed.  Christmas comes, and she wants to write 100 cards as usual, but each card is torture. She allows her daughter to write the cards for her, but it feels undignified and people won’t really understand that it is because she can’t see. Maybe they’ll think that she’s got dementia.

So how could we have done this better – it’s my mum I’m talking about here. 

Let’s look at: Physical, emotional/social and spiritual elements of care

Physical:

We could have got to know her condition. Helped her to keep screening as she got older: Her grandmother was blind – and it is likely that she had macular degeneration. Yet there was never an amsler grid anywhere in sight.  We could have kept it somewhere handy in the kitchen, or in a folder in her bedroom if she wanted it out of sight. We could have helped her to monitor her own condition. She depends on the ophthalmologist. But quite honestly, there are some days when the testing feels careless and random (she notices disrespect always and loses faith in doctors rapidly). Why should she depend on this alone?

Getting friendly with her digital device: she did get a computer, but the grandchildren tended to mess it up. We got her an ipad. She uses it to get her mass on the ipad, and now she’s also connected with Alexa. This allows you to talk to your device (a bit like siri) and it does things like turning on the radio and her audio books. But it’s hard to learn when you cannot see. Now we are reading chapters of her favourite books and sending her these to listen to.

Magnification: she got a hand held magnifier, but it never seemed to be bright enough and it was too small. Eventually she got an amazing HumanWare magnifier – 8 inches. But by that stage it had really got to be too much trouble to read. She should have got it much earlier.

Writing Christmas cards: she could have done a lot better if she was prepared to use a black pen and a line guide. Simple things might have taken a lot of the worry away about what people would think.

Lighting: she went out one day and I changed all the bulbs to LEDs. This was done for a total of less than $200 (actually 60 euros). I moved the lamps so that they were shining over her left shoulder when she was doing things. She was delighted with this – but would have absolutely refused to throw out a light bulb before it was finished, no matter how gloomy. There was no way she’d do this voluntarily.  

Emotional and social:

How could we have done better with this:

Denial: this went on for a long time, with the hiding from the family. She didn’t share her grief with us, and we didn’t understand what was happening. I have found families bursting into tears when we show them a vision simulation of the condition that their loved one has.

This driving as the biggest thing: I said to her:  you’ll know yourself when to stop. It’s like a veil  lifted and she remembered that she was in charge. It took another year, and she holds onto the car….but she stops driving it. She says that this was the one thing – the giving her permission to give up but in a way that she had control of the decision. It seems to be a good thing for family to give permission in this way – in a way that enables self-regulation for their loved one

Emotionally, everything seemed to come at once. The vision loss. She can’t drive. She’s in a lot of pain from the cancer site, and she’s also blind. It’s tough to have so many things come at once. Her habits of a lifetime start to splinter. She no longer can take her friend for coffee – in fact her friend has dementia and has moved into a rest home.

At this time there was something like guilt, shame or disgust: there was a kind of anxiety / panic about being in this place. It was hard for her to hear words like : you’re strong, you’re a fighter. But this is what she needed to hear.

Gradually, the anxiety started to recede: there are worse things that can happen. She found an arrangement where my sister was happy to care for her.

She can’t go out so much, so she needs to be in the centre of family – and visits by family and friends are precious. The phone can actually be tiring. We need to spend time just holding her hand at times and this is good for everyone. Children and grandchildren included.

One things that we have not managed to persuade my mother to do :

Use all the money you save by not driving your own car on other means of transportation. If the transport service is unreliable—call a taxi and use your tax reduction or whatever social system you have in your country for supporting visually impaired persons. on a cab company you like. You can survive without a license.