dementia and blindness

[Clutterbuck]

I joined the forum yesterday as my Dad had vascular dementia..he is probably mid stages at the moment. One of the biggest issues is the fact that he is blind - completely blind. He has had eye problems for most of his life but became completely blind about 7 years ago, so before his diagnosis of dementia.
Dad has had support from RNIB in the past and a local sight supporting organisation, however we have been really stuck when it comes to supporting a person who is blind with dementia.
Is there anyone who has a similar experience or who might have advice??
Any advise or experiences would be really helpful...thank you.

P.S. I am also going to try and put on another thread about moving house as we are looking to help Dad and his wife move into a bungalow...for safety reasons (Stairs!!) and practical reasons...thank you so much.

 

[marionq]

Can't help but will be interested in the answers. My husband's father and grandfather were blind with glaucoma and had dementia. He now has both and we have a regime of drops to try and save his sight. He is occasionally resistant to these drops as they make his eyes tired but so far I have been able to deal with this.

Not an easy task for you.

 

[Grannie G]

Hello @Clutterbuck

The husband of one of our Host volunteers nellbelles was blind and I've sent her a message asking her to post to you.

 

[Clutterbuck]

Hello @Clutterbuck

The husband of one of our Host volunteers nellbelles was blind and I've sent her a message asking her to post to you.

Thank you..

 

[nellbelles]

Hello @Clutterbuck welcome to TP, although I’m sorry such difficult circumstances have made you join us.
I’m glad you have a local sight support group in your area, they can be helpful for befriending and some run day centres if that becomes a need in the future.
My husband was blind for over 40 years and was very independent and could navigate the house really well until the later stages when that independent streak meant that he would set off to go into another room with no memory of the layout of the room or the furniture.
I agree stairs are a potential hazard, the Red Cross installed a drop in barrier at the top of the stairs which helped to lessen the worry about a fall.
A move to a bungalow could be a good option so long as you think your Dad will cope with the change of environment, please bear in mind it will be most unlikely he will retain much information about his new home.
Anything you think I can help with please ask.
Helen.

 

[Ludlow]

Hi, Not sure quite what sort of advice you are after but my mum is almost blind. One eye is completely sightless, the other can see some movement and light but not really anything else. eg if I stand still, she doesn't know I'm there. The main problem I had initially was that mum would wake up each morning not remembering how little she could see. This led to paranoid delusions that a neighbour was causing her blindness and the distress was new each day. Hopefully your dad has been blind long enough that this is not an issue. The only other thing I can think of to mention is that whereas most blind people can find their way around once they know a place, with dementia in the mix they often cannot manage even somewhere they know well. Mum forgets which room she is in, and if she takes a wrong turn has no idea how to find her way again. She has an ensuite to her bedroom and can usually get there and back fine - but if she doesn't immediately get to the door, she is completely lost and I have to go and "rescue" her.
Re stairs, well I always accompany her, but that is in part because she is wobbly on her feet now.

 

[Clutterbuck]

Thanks for your posts. Dad has had great difficulty orienating himself around the house for a while now..he is unsteady on his feet so has to be guided everywhere now in the house.
We have had a few confused conversations where he seems to have forgotten that he was blind but nothing too bad at the moment.
One of the frustrating things is the dementIa aids..many of them are designed for sighted people. Has your mum had any that have helped?
Thanks for your message.

 

[Ludlow]

No, I haven't found any aids that are useful to mum (She doesn't hear well either which doesn't help). As you say, most things are around looking at old pictures, doing jigsaws, visual reminders of the date and labels on doors etc - all dependent on sight. I find it very hard to keep mum mentally stimulated. I have to talk to her about the old days - fortunately she's told me enough of the old stories in the past that I can guide her into talking about them again. We do crosswords (I read out the clues) but that is surprisingly more difficult to do without looking even if your brain is sharp. She won't watch telly (except Eggheads and she never knows who won) or listen to the radio. She will sometimes listen to the talking newspaper. I always ask her to help me fold the sheets, and to grate the cheese as that does at least make her feel that she is helpful in some small way. The best thing we do is a singing group, and we sing around the house too all the time - but everything is dependent on me being there and facilitating things - even a cup of tea with her old friends I have to be there to prompt her to reply.

 

[Darra]

Hello @Clutterbuck welcome to TP, although I’m sorry such difficult circumstances have made you join us.
I’m glad you have a local sight support group in your area, they can be helpful for befriending and some run day centres if that becomes a need in the future.
My husband was blind for over 40 years and was very independent and could navigate the house really well until the later stages when that independent streak meant that he would set off to go into another room with no memory of the layout of the room or the furniture.
I agree stairs are a potential hazard, the Red Cross installed a drop in barrier at the top of the stairs which helped to lessen the worry about a fall.
A move to a bungalow could be a good option so long as you think your Dad will cope with the change of environment, please bear in mind it will be most unlikely he will retain much information about his new home.
Anything you think I can help with please ask.
Helen.

Hi Nellie. My husband has been blind since 2004 and has dementia. Being only 66 and still so fit, healthy and active I want to keep him at home for as long as possible. When he was blind it was easy to put raised dots, I made a braille calendar and he could use note takers and other gadgets to help him to continue to live fully but with the dementia we are struggling. He still wants to be independent as much as possible but how can I help him to remember how to use the toaster, microwave, etc when I can't use tradition methods for dementia of making visual aids. Your ideas and help would be appreciated.

 

[nellbelles]

Hello @Darra and welcome to TP, what a difficult situation.
When my husband was first diagnosed with Alzheimer’s a specialist SW attached to our local Blind Association came out to see him, I wonder if your local area has something similar?
A suggestion that we were not able to take up was a befriender (with the knowledge of how to support a blind person) my husband’s mobility was bad by that time, but as your husband is active I wonder if this would help him?
With regards to him losing skills for jobs I’m afraid I can’t think of anything to help, by the time my husband went into a CH all he could do was put the kettle on!
Now you have found us I hope you will continue to post there is a lot of support here on the forum