Getting cataracts done

[sapphire turner]

My husband is mid stage Alzheimer’s and was offered to get his cataracts done to help his vision. He was keen to do this, especially as he wouldn’t have to wear his distance glasses.
We had the pre-op appointment and I thought he had understood everything. Unfortunately the actual operation went a bit wrong and his lens capsule tore (a 1 in 100 event apparently) so a 10 min op under local anaesthetic lasted 45mins. When I came to pick him up he didn’t say anything about the op. We had to wait to see the doctor before we went, which I thought was just standard. But when the doctor came he told me what had happened and that he had to take tablets to stop his eye pressure causing damage, and come in for daily checks.

I had made it quite clear to all the doctors and nurses involved along this journey that he had dementia. They had no idea (? Joined up NHS?) but seemed not to believe me. The consultant put down mild dementia (that ship has long since sailed) and another doctor poohooed my idea that his reticence in giving answers to the letters eye chart could be due to him trying to process the question rather than not seeing the letters. Apparently even people with advanced dementia do not forget the first things they learned (thanks Mr Mansplainer). My husband hasn’t forgotten his letters, his interpretation of the chart is just like Eric Morcombe (all the right letters, just not necessarily in the right order).

It turns out that the operation was terrifying for my husband. The local anaesthetic must have run out and he was in a lot of pain. But nobody spoke to him or asked him if he was okay. He was under a sheet and he didn’t know anyone was there. He thought he was in a machine (he had recently had an MRI).
He has an appointment to have his other eye done in March but is understandably very apprehensive. I feel like I let him down and need to make more noise next time.

Anyone else had a similar experience? Thanks all

 

[Rayreadynow]

In my experience there was quite a long form to fill in to establish the medical condition of someone at pre-operation stage.

 

[Louise7]

Hi @sapphire turner what a terrible experience for you and your husband. From experience of frequent hospital admissions and procedures, for myself as well as mum, there seems to be quite a few areas that are still not joined up and not a great deal of dementia knowledge/experience either so please don't think that you have let your husband down. My dad (who does not have dementia) is due to have cataract ops in both eyes, with the first op due next month, and I do worry about how things will go. I hope that your husband recovers from his ordeal, maybe contact PALS at the hospital to let them know of your experience?

 

[Anthoula]

My OH was told 6 months ago that he has an advanced cataract but the optician was extremely reluctant to put OH forward to have it removed because such an operation, and post-op requirements, can badly affect anyone suffering with dementia.

 

[ShivyDevon]

My dad had his cataracts done. First one under local anesthetic and similarly he struggled with the op.

I think second op was done under heavy sedation but I cannot 100% recall - I'd have to check with my mum.

I've been to a few appts with my dad (and mum as his carer) and many of the medical professionals have been frustratingly blasé about the fact my dad had dementia. My mum had a terrible experience at a diabetic eye check for my dad where the professional became so frustrated it put my mum off taking him to any other medical appointments. It was so traumatic for them both. Thankfully I was able to go to the most recent diabetic eye check and rather assertively advocate for both my mum and dad.

Could you enquire if you can accompany your husband next time or could heavy sedation or general anesthetic would be an option?

I totally sympathise with you and your poor husband. He must have been terrified ☹️

 

[sapphire turner]

My dad had his cataracts done. First one under local anesthetic and similarly he struggled with the op.

I think second op was done under heavy sedation but I cannot 100% recall - I'd have to check with my mum.

I've been to a few appts with my dad (and mum as his carer) and many of the medical professionals have been frustratingly blasé about the fact my dad had dementia. My mum had a terrible experience at a diabetic eye check for my dad where the professional became so frustrated it put my mum off taking him to any other medical appointments. It was so traumatic for them both. Thankfully I was able to go to the lost recent diabetic eye check and rather assertively advocate for both my mum and dad.

Could you enquire if you can accompany your husband next time or could heavy sedation or general anesthetic would be an option?

I totally sympathise with you and your poor husband. He must have been terrified ☹️

Thanks that’s helpful I hadn’t expected it to be so hard! ❤️

 

[ShivyDevon]

Thanks that’s helpful I hadn’t expected it to be so hard! ❤️

❤️❤️ take care

 

[Helen CW]

@sapphire turner I'm so sorry about your husband's experience in surgery and the doctors and nurses' response. I know he was terrified. I've seen my husband appear frightened but he won't admit it. I am so sorry that dementia exists and that our family or friends are afflicted with it, My husband's eye doctor is excellent and all of his MDs know about his dementia which is in his medical chart and can be seen by the expressionless face he has on most occasion. Try to ensure that you are allowed to accompany him on all doctor visits and can be near during surgery - although hopefully he won't need another surgery. I truly understand your frustration regarding this condition and how it affects your husband. My husband has early dementia (doesn't seem early to me) but has had glaucoma and cataracts in both eyes for many years. Cataract in the left was removed several yrs ago because the glaucoma in that eye is advanced - with no problem. His ophthalmologist said it was time to remove the right eye cataract, but since the onset of dementia, my husband doesn't seem to understand the difference between the two. I explain it, show him pictures, the doctor explains it on every single visit for years. He still says he can't wait for the surgery on his eye to get his eyeball back to normal (he means his left eye which has end stage glaucoma with only hand motion vision). We explain that the surgery is for the right eye, but he keeps going back to thinking it's the left eye. Now his doctor will not perform surgery on the right eye cataract because he doesn't think my husband will understand informed consent and will have unreal expectations. He believes, and so do I, that my husband will be upset post-surgery when he realizes the surgery is to be done on the cataract in the right eye. When we discuss the surgery, he listens, then says he wants his left eye vision to come back to normal. No matter how much we tell him that this will never happen, he can't seem to understand it. His eye doctor asked his primary doctor for his opinion, but his primary MD also knows my husband doesn't get it. At every visit, they direct their comments to me even as I try to get him to participate in his own care but asking questions and trying to ensure he hears what they say to us.

 

[Lawson58]

Both my husband and I have had cataracts removed in recent years. I had mine done early because I have glaucoma and the results have been very successful. OH had no problems but now complains that his eyes are getting bad. I think it is more of a dementia thing as he seems to be able to read the eye chart quite well.

I do know that there were masses of pre admission forms that we had to complete prior to surgery and no doctor should have been unaware that my husband has dementia. In pre op, a nurse went through all the forms asking a question or two to clarify something. I am sure that other hospitals do the same thing. After all, the legal implications of not checking are pretty scary.

It is pretty sad that your husband could eventually lose his sight if he doesn’t have the right eye done so I suppose the question now arises is about PoA. Do you have one for your dad for Health and Welfare because then you could perhaps avoid the issue of informed consent.

Having had cataracts removed myself with excellent results, I think it would be very beneficial for your dad to have the procedure as that may improve his eyesight sufficiently for him to forget about his left eye.

 

[sapphire turner]

Thanks all for your thoughts and kind wishes. Consent is a tricky one isn’t it? I thought my husband had clearly understood what was going to happen during the operation- it was emphasised to him that there should be no pain and he should let the surgeon know straight away if it was hurting- but in the actual situation it all went out of his head and he froze. I am hoping that we can get his other eye done but I am worried that they may not be happy to do it now. I have got a health LPOA for him but I suppose with it being done under local anaesthetic will need his cooperation.