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Elderly parents

Sudden visual loss due to stroke - who can help?

9 replies

magso · 31/07/2013 17:49

My father has had a stroke (PCA embolis) which has left him with hemioanopia and total macula loss - basically he has only a little peripheral vision on one side and no central vision. He may also have some short term memory difficulties - it is not clear if this is due to exhaustion (no sleep on the ward) or the stroke. Obviously he can not drive or see to read. He is quite frail with breathing difficulties that stop him walking more than a few steps, so not being able to drive is devastating (my mother doesn't drive). He has just come out of hospital and the stroke nurse has visited, and will organise a hand rail for the bathroom. Both my parents are fiercely independent.
What best can I do to support him (and my mum)? DF is totally exhausted at the moment so it is probably too early to start visual rehabilitation. How long does the exhaustion last?
Thier first need will be transport to get essentials. They live on a very steep hill. DF used to take my more mobile DM shopping and wait for her in the car or café. I will organise internet shopping and delivery from a local supermarket. I know the GP can organise transport for hospital appointments (DF also has cancer and other conditions that needs regular follow up)- or is this only for those on benefits? This is all new to me, not helped by being several hours away which means I cannot pop in as regularly as I would like. Can any one point me in the right direction for information? Thanks

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barleysugar · 31/07/2013 19:45

Has he had a referral to Opthalmology yet? If not, I would push for this, as he may be able to be registered as sight impaired, which can be helpful. It might be worth phoning your eye clinic to see if they have a designated Low Vision Aid person or liaison service. If your area has a local Blind Society, make contact with them as well, as they will have charitable funds available to help with buying visual aids like magnifiers, heat alarms, talking watches etc. The RNIB may be able to help out with getting audio versions of newspapers and periodicals for free.

There is help out there, thankfully he has you to go out and find it for him.

I wish you well x

iliketea · 31/07/2013 19:56

Contact social services - they may be able to direct you to local voluntary services who your parents can call on for help (e.g if they need extra shopping / medication collection) even if your parents don't need social care. SS should also be able to check that your parents are claiming any benefits they can (e.g attendants allowance).

The hospital transport system is normally for those peole who would find it difficult to get to hospital any other way (would struggle to get in a taxi alone) BUT some will only take the patient, not anyone else and if your dad has short term memory loss, it may be better for him to have an escort for hospital appointments so for remembering what was said.

Age UK also have a lot of local offices and have huge amount of knowledge about local services - it may be worth contacting them for advice.

mmmmsleep · 31/07/2013 20:18

Hi sorry to hear about your father. just to say the RNIB are great and have lots of services and products that help massively eg talking clock/ watch large print weekly newspaper and books/talking book library.

speak to gp about carers grant. some areas still have funding and they can help with respite/help.

good luck with his recovery

magso · 31/07/2013 20:25

Thank you both. I will contact AgeUK and the RNIB, for details of the local offices close to DPs. DF was seen first by the eye clinic and was sent from there to the stroke ward. I will try and find out what follow up if any has been organised. I suspect none as his visual loss is due to the stroke not any eye problem. However they are the best people to organise visual support.

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magso · 31/07/2013 20:27

Sorry thank you all, missed a post.

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CMOTDibbler · 31/07/2013 20:30

The local carers centre if there is one may be a really good place to start as they will know what is available locally. For instance, locally to my parents there is a volunteer drivers scheme where they will drive you to the shops/gp/hospital just for the cost of petrol - and take both people. Local to me theres a dial a ride thing which is wheelchair accessible and thats very low cost again - run by AgeUK

Would your mum use a mobility scooter? If the hill is safe to use one on, then they can be a godsend as it means a non driver can still get out and about.

My parents have taken a lot of persuading to use taxis, but are discovering that they can make a lot of sense and a lot of time actually easier than driving as you are dropped and collected from the door. I researched the cost of going places they needed to be and that helped - dad had thought it would be an outrageous cost.

The whole remote internet shopping thing is working well for us - dad gave me his bank card details and I have various shopping profiles set up for them so they/he (mum has dementia) can call and ask for things to be ordered.

magso · 01/08/2013 09:24

Thank you CMO, I had not thought of a mobility scooter for my DM. That's a very good idea. They have storage space for collecting shopping, so that would help with local things such as the pharmacy. It seems their local pharmacy does not collect prescriptions from the GPs s (both a mile away from DPs) , but will home deliver. Mum learnt to drive many decades ago when we were small, but never really had the chance to develop her skills or confidence, but a scooter might be small enough to handle.

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CMOTDibbler · 01/08/2013 09:46

I don't know where your dps live, but the mobility store local to me in Worcs have a test track and does 'driving lessons' on the scooters to build confidence. But if my mum can manage one, anyone can!

Some supermarkets do a 'shop and deliver' service, so your mum could go round and choose then get it dropped off, which would give her more control over the shopping. Usually costs £5 I think. But dad seems to get a suprising amount on the scooter by use of the basket, a rucksac on the back of the seat, and a bag between his feet. He likes to bootle round the market on it as then he can stop and chat in comfort.

Another thing dad has found really great (he gets very breathless when walking) is a three wheeled walker that has a seat - its v lightweight so goes in and out of the car very easily, and the seat means he can sit down as much as he likes

magso · 03/08/2013 11:45

Thanks CMO, I will explore shop and deliver services. I think a seated walker might work well, so will look into that.
I have made contact with the local visual impairment club which is fairly close to my DPS, and the local Age UK branch who have a visiting friends service. It seems the pharmacy does collect from the GP and the new medicines advised by the hospital ( to use when the others are finished)were delivered! I made contact with a specialist researcher on field loss visual impairment so feel I know a little more and what might be helpful in the future. Neighbours are rallying around to help with shopping and company. Friends from a club my DF attend can collect him when he feels well enough. My brother has set up an online shopping account.

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