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Post stroke blues and coping with devastating visual loss- how can I help when I am not near?

(5 Posts)
magso Tue 01-Oct-13 09:23:42

My father had a stroke nearly 3 months ago. He has lost almost all his vision (left hemianopia with macula loss) and cannot see to do any of his hobbies.

I suppose in the early weeks there was a little hope of recovery, but there has been no improvement and the realisation that this is permanent and unfixable is hitting. He cannot drive and as he is frail and has limited mobility due to other health issues (breathless, little energy), he feels useless. Walking is extra difficult because he cannot see.

On his first trip out alone (he was dropped off from a neighbours car to avoid a short walk) he fell over after tripping into a post he didn't see. He has lost confidence, and my mother (also elderly) feels she cannot leave him alone in case he falls or gets disorientated.

I feel they both need support, and although DF has residual vision, he needs help leaning to adapt to his visual loss. Has any one any idea who I can contact to arrange support. DF is not registered with a visual disability and of course it is his brain that was damaged by the stroke not his eyes so he feels the eye department cannot help? Also what can I do to help him (and DM) with the inevitable depression?

DS said he is not useless he can still tickle him! But DF feels useless because he feels he cannot do the things he used to do ( like drive elderly neighbours to the shops, read, help my DM)

It is all complicated by his disinterested GP retiring and the new GP is several miles further away. The (lovely) stroke nurse no longer visits as DF can make tea and toast and manage to use a rollata.

Really I need to be there!

Needmoresleep Tue 01-Oct-13 09:47:53

Does you last sentence say it all?

Could you look at sheltered living options, eg flats or bungalows with 24 hour warden etc, somewhere near you? Having the right support might give your parents more, not less, independence - and for longer.

CMOTDibbler Tue 01-Oct-13 09:48:07

The Stroke association will be able to help - if you look on their website you can search for groups local to them.

I'm sure if theres a local group for people with visual loss they'd be very welcoming (a friends dad is involved with one and loves helping new people) and they don't worry about why you have visual loss just that you have.

With reading, his local library will be able to loan him audio books, and I think they are free if you are visually impaired.

magso Tue 01-Oct-13 10:32:59

Oh Needsmoresleep, it would be so much easier if I (or they)was living locally!

It is probably time to start thinking of other living options. At the moment DF is better in his familiar home. He knows where everything is. He gets a little lost occasionally - switching on the wrong plug where there are 2 next to each other for instance, but generally he manages inside the house. I think he needs to adapt to his loss before moving him.
I feel I have made progress in that his referral to sensory services has been moved up the waiting list ( because of his fall) although tears blush may have helped!

Thanks CMOT, I contacted the local sight impairment club. You are right they are very welcoming. They can provide transport for social events so that is a very good contact. Just to persuade DF he is allowed to go even though he is not registered sight impaired.

hooochycoo Sun 29-Dec-13 08:56:32

Get in touch with the local RNIB. They will have lots of advice, support and communities for him to be part of.

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