Dementia and now Blindness

[Lynette]

Dear TP Members
This is the first time I've posted - but I have been taking comfort from your discussions for a couple of years now. My Mum is 76 and has been in a Dementia home for 12 months. Just before Christmas she had a bad fall at the home and banged her head. She was taken to hospital for tests but there were no broken bones. The hospital was a bad experience - short staffed and no idea of how to deal with mum's dementia. Fortunately we managed to get her back to the security of the home within a few days but she was very ill and we thought we might lose her. Due to her deterioration at the time we didn't realise she had other complications - a suspected case of Temporal Arteritis - or inflamation of the temporal arteries. This condition is very serious and if left untreated causes blindness. Unfortunately because my mum has poor communication skills, we had no idea at the beginning and only a passing comment by the Doctor about the possiblity of this condition sent us to the internet to find out more. By the time we'd googled it and gone back to the doctor insisting on a course of Prednisone (the only cure) it was too late. Now mum is a shadow of her former self - very frightened of being moved in the slightest way, finds walking impossible , has developed a pessure sore from all the laying down and is on soft food because they took her false teeth out after the fall and we can't get them back in. I am gutted as her quality of life is so poor now. I just wanted to know if anyone else has experienced Arteritis or if you have a loved one with Dementia and Blindness can you recommend things we can do to reassure her or give her back some quality of life. I feel so pretective of her and try to touch her gently, talk to her and hold her hand as much as possible to let her I am there. Any other suggestions would be great appreciated.
Warm regards
Lyn

 

[Brucie]

Hi Lynette

welcome to Talking Point.

It is good to hear that you have gained benefit from the forum even without posting.

Blindness and dementia - a horrible thing. My wife Jan has both and her dementia is mixed - partly vascular. We were never given reasons for her loss of sight, but now you make me wonder.

All water under the bridge for us, unfortunately, so I focus on how to help her cope with it.

I feel so pretective of her and try to touch her gently, talk to her and hold her hand as much as possible to let her I am there.

To be frank, there is not a great deal that we can do - what you practice is what I have done for some time as well.

In our case, Jan's dementia is so far gone now that movement is not really an issue. Naturally talking is something I can do, even while never quite knowing if she understands me. Occasional responses make me feel it is worth while for her - I already know I need to maintain some level of communication for my own benefit.

Jan is now 67, but her sight loss came about 3 years ago, the start of dementia 14 years before that.

I'm afraid I'm not helping much, but there will be other I hope who will be able to suggest helpful things.

 

[Grannie G]

Hello Lynette.

I think the problem your mother has with walking and movement is loss of balance.

I am blind in one eye. I was due to have cataract surgery in the other eye, but had a migraine. The consultant refused to begin the surgery because I was to have a general anaesthetic, and generals and migraines are incompatible.

I had already been given the pre-surgery drops to dilate the pupil and because I was so light sensitive, had to be blindfolded in order to get home.

With total blindness I had no balance whatsoever. In order to be able to leave the hospital and get to the car, my husband and son had to support me on both sides and even so I walked like a drunk. It was a horrid experience.

I suspect this is the same for your mother, but because of her dementia she would not be able to articulate her fear. All I can suggest is you ask if she can have some occupational or physio therapy to give her some confidence.

Losing sight gradually gives you chance to adjust, but losing it suddenly is a trauma.

I hope this helps.

Take care xx

 

[Lynette]

Dear Bruce and Sylvia
Thank you very much for your thoughts - I have read your posts many times and even though we are about as far away from each other as its possible to get I feel amongst friends. I agree mum's balance is probably completely gone (sometimes I close my eyes to try to image what it's like for her) When we do try to walk her it takes two people, sometimes three - every step must feel like walking into the abyss. If I come up with any good ideas for mum I will certainly share them.
Thanks again
Lyn

 

[Skye]

Dear Lyn

I just wanted to welcome you to TP.

What your poor mum has gone through is horrendous. I've no experience of blindness, but I'm sure Bruce's and Sylvia's posts have helped you.

The loss of balance I do have experience of. My husband went from being a very fit man to having total loss of balance in the space of a week as a result of a UTI. He too needs two or sometimes three people to support him, and even then can only manage a few steps on a good day. On a bad day he can't stand at all. He too hs no communication.

It's very hard to bear, but really, all we can do is show them in any way we can that we love them.

Sorry I can't be of more help, but I do know how you feel.

Love,

 

[Grannie G]

(sometimes I close my eyes to try to image what it's like for her)

Dear Lyn.
Please don`t take this as a criticism, I used to do the same, just in case my surgery went wrong. There is no comparison between walking with closed eyes and total blindness. I have no idea why, but it`s a fact. I think that`s what made my experience so traumatic.

every step must feel like walking into the abyss.

That is exactly how it feels.

Love xx