Sudden Blindness - Frontal Lobe Dementia

[Doggy86*]

Hi,

My Mum has lost the sight in her eyes, she only had sight in one eye to begin with.

The sudden loss of sight was due to a retina detachment and fluid around the eye.

My Mum is struggling and thinks she is in the dark all the time. I'm struggling myself as not sure what to say to her as I can't make it better.
When at home I look at all her favourite things and know she cannot see them anymore.

Can anyone give me any advice on how to help my Mum. She is in the later stages of Dementia heading into end stages.

Thank you

Christine

 

[karaokePete]

I don't have experience of this but I wonder if you would get some benefit out of contacting the RNIB helpline. If you want to give it a try this is a link

https://www.rnib.org.uk/services-we-offer-advice-and-support-services/helpline

 

[Grannie G]

It`s a dreadful thing to happen @Doggy86*

I`m in danger of a detached retina too and don`t know how I`d cope, never mind having dementia as well.

Are there any of your mum's treasured possessions which she could recognise by touch and feel or do you think that would be even more upsetting for her.

If she thinks she is in the dark all the time how would you feel about agreeing with her that it is dark and it`s dark for you too.

I agree the RNIB may have suggestions for you.

 

[Ludlow]

Hi,
I don't know that I can offer much advice, but I can truly empathise as my mum is in the same position, her sight having failed as dementia set in. It is truly heartbreaking when she says she can't see, and with limited capacity to adapt it is so hard.
We try to manage by being very tactile (which we never were before). I will touch her hand before I speak to her to get her attention, will often sit and hold her hand which she finds reassuring as otherwise she thinks she has been left, and give her lots of hugs. I also encourage visitors to touch her hands when they come and go as this helps to establish that they are really there.
I try to be her eyes for her and continue to talk about her belongings and tell her about the flowers and birds in the garden or what we are passing in the car. Also, if she is given something, make sure she is given time to feel it. We also do a lot of singing - just little things like nursery rhymes, lullabies, and old songs as she doesn't need sight for that. Mum was able to listen to the local talking newspaper for a while but she doesn't have the attention span for that now. My mum wouldn't accept it but would yours like a doll or toy dog to cuddle as this might counter the feeling of being alone in the dark.
I found I had to really fight to not give in to despair on her behalf as it were, and just be matter of fact about the blindness as much as possible, acknowledging the loss but not dwelling on it. It's very hard for you as well as her and I wish you strength to cope.

 

[Doggy86*]

I don't have experience of this but I wonder if you would get some benefit out of contacting the RNIB helpline. If you want to give it a try this is a link

https://www.rnib.org.uk/services-we-offer-advice-and-support-services/helpline

 

[Doggy86*]

Thank you Karaokepete, I will look them up.

Mum comes out of hospital tomorrow. I'm hoping she will feel a bit better at home.

Doggy86*

 

[Doggy86*]

It`s a dreadful thing to happen @Doggy86*

I`m in danger of a detached retina too and don`t know how I`d cope, never mind having dementia as well.

Are there any of your mum's treasured possessions which she could recognise by touch and feel or do you think that would be even more upsetting for her.

If she thinks she is in the dark all the time how would you feel about agreeing with her that it is dark and it`s dark for you too.

I agree the RNIB may have suggestions for you.

 

[Doggy86*]

Hi Grannie G,

I have tried saying things like all the lights have gone out and that I can't find candles. But she gets scared as she always slept with a light on.

She is coming out of hospital tomorrow and Im hoping that being at home might make her feel a bit more comfortable.

Thank you so much for your advice

Doggy86*

It's going to hard.

 

[Doggy86*]

Hi,
I don't know that I can offer much advice, but I can truly empathise as my mum is in the same position, her sight having failed as dementia set in. It is truly heartbreaking when she says she can't see, and with limited capacity to adapt it is so hard.
We try to manage by being very tactile (which we never were before). I will touch her hand before I speak to her to get her attention, will often sit and hold her hand which she finds reassuring as otherwise she thinks she has been left, and give her lots of hugs. I also encourage visitors to touch her hands when they come and go as this helps to establish that they are really there.
I try to be her eyes for her and continue to talk about her belongings and tell her about the flowers and birds in the garden or what we are passing in the car. Also, if she is given something, make sure she is given time to feel it. We also do a lot of singing - just little things like nursery rhymes, lullabies, and old songs as she doesn't need sight for that. Mum was able to listen to the local talking newspaper for a while but she doesn't have the attention span for that now. My mum wouldn't accept it but would yours like a doll or toy dog to cuddle as this might counter the feeling of being alone in the dark.
I found I had to really fight to not give in to despair on her behalf as it were, and just be matter of fact about the blindness as much as possible, acknowledging the loss but not dwelling on it. It's very hard for you as well as her and I wish you strength to cope.

 

[Doggy86*]

Hi Ludlow,

Thank you for your advice, I am also trying not to give into despair, but I feel so broken and helpless, things were not good before as she is getting more frail as she is not eating much. How this could happen to her I just don't know.

But I will try everything you said, Mum loves music and I have been playing her music in the hospital.

It's just horrible when she wakes up and shouts is there anybody there, I'm in the dark.

Its just so sad.

Doggy86*

 

[Grannie G]

It's just horrible when she wakes up and shouts is there anybody there, I'm in the dark.

Its just so sad.

It`s dreadful. See if the RNIB can help you.