Cataract surgery for someone between Stage 5 and Stage 6?

Mariyke

Hi all,
My mom has advanced Alzheimers and Vascular Dementia. I guess it is between stage 5 and stage 6. She gets full time care in a skilled nursing home. She can´t do any daily tasks without assistance (though the nurse sets her up to wash her own face and brush her own teethI, can´t walk, needs a machine to take her to the toilet, and has trouble eating on her own though she still does it with her hands. She is only 77 years old and was diagnosed with dementia a few years ago. 2 years ago I found out she needed cataract surgery but I could not proceed at the time because she kept getting infections and then couldnt swallow. About 10 months ago her swallowing abilities returned and she is actually doing better physically. She has become more social. In the mornings she knows who most people are and knows where she is, she sings, recited some poetry and songs from memory, and can hold conversations about 50% of the way through. She still has her identiy but sometimes she things she is in her childhood and remembers a lot of details from her youth though not so much that is recent. She still jokes, picks out clothes, and likes to look nice. She enjoys music and poetry. In the mornings, I can clearly discuss cataract surgery with her and she wants it. In the afternoons she sundowns and doesn´t always know where she is or where I live, is crying a lot and agitated and is very disoriented and gets words confused. However, she is so social and would like to see people and see the food on her plate. Her PCP thinks she could really benefit from the cataract surgery. The surgeon was hesitant because he said its rare to do cataract surgery at this stage of dementia, but said he could try it on one eye. The idea is to start it with an IV sedative and local numbing. He said he would only switch to general anesthesia if he absolutely had to and it would be brief. Surgeon says even 1 eye would be helpful. If she doesnt have the surgery and lives another year or two she will be blind by then and it will probably be too late from a cognitive perspective to do the surgery. The idea of condemning her to blindness on top of everything else is too hard to bear. But what if she doesnt recover well from this surgery or needs the general anesthesia? I am afraid of a decline or other complications. She also has an underlying mood disorder which I also don´t want to trigger. On the other hand, if she could see people and food, she might do even better and she wouldn´t suffer as much. I just fear if I don´t do it in this time period, it will be too late. Even my mom said ``it would be a missed opportunity.`` In the nursing home, they can do eyedrops and make sure the shield is being worn but they cant closely monitor her every second so I was thinking I might need to have someone with her a few days to make sure she isnt scratching her eye and to help her calm down. I am not sure I can be there. I was just visiting her for 18 days and needed to get back to work. Has anyone been through cataract surgery at this stage of dementia? What do you think? What kind of questions should I be asking the surgeon, nursing home? How could I prepare for this? Am I doing the right thing? This is so hard on me. I am in my early 40s, live far away, and am her only family involved though I have a friend visiting her. I am feeling a lot of weight from this decision and would be so grateful for insights.

JulietteBee

I just wanted to say, I am sorry for your inner turmoil, doubts, and fears.

I am currently where you are. Mom wants to have heart surgery for her pre-existing condition. One surgeon already told her the surgery has the greatest risks in octogenarian women, which she is. I am terrified that the general anesthesia is going to push her Alzheimers over the cliff. She is currently super confused. I fear the outcome after next week's surgery.

You said your mom, while lucid, wants to do the surgery. I say support her in HER decision. That is what I did with my mom. I told her I do not feel comfortable making that decision for her, but will support her in whatever decision SHE makes.

All the best!🫂

H1235

Welcome. My mom had cataract surgery at a solid stage 4 and it went fine. It was a tough decision and I was very concerned. They did use anesthesia, but very little. Mom did well. I think I would be most worried about her rubbing her eyes. I think the eyes are itchy after. I also worried about how mom would do with the eye drops. They are so important. I worried she might refuse them or decide she didn’t need them or that she could just do the drops herself. She can be very stubborn and independent, but I don’t think there was any way she could do drops herself. She was in Al and if she refused the drops there was not much they would do about it. Even in a nursing home you might want to ask what they would do if she refuses the drops. The eye drop schedule was crazy and I paid extra and got the combination drops to make things easier. I’m thinking it was 4 times a day she had to have drops, for about a month. It was also a lot of driving her to appointments. Mom was an hour drive from me and the doctor was another hour from her (we are very rural). I think there were at least 6 appointments total in a 2 or 3 week period. Do you think she will cooperate with all the appointments? She also had to lay in a bed waiting for the surgery for quite a while. Thankfully they allowed me to be there with her. Overall I’m glad she had it done and it did go well. It’s a really tough decision. I don’t believe most people with dementia have the ability to weigh all of the potential problems necessary to make this kind of decision, especially if they are not able to recognize their own dementia symptoms. You may also want to consider how your mom will react if you choose not to have the surgery done. Will she get angry, violent? I would suggest you consider what she wants, but make the decision you feel is best. There is no right answer here. You just do the best you can.

Michele P

https://alzconnected.org/discussion/76384/cataract-surgery-for-someone-between-stage-5-and-stage-6

I recently had caterac surgery. I was awake for the 7 minutes of surgery. The anesthesia was to calm me, not put me to sleep. If the nurses can handle the drops, I would do it. Maybe hire a private nurse for a few days if necessary. The alternative could result in your mother becoming blind if it isn’t removed, and it progresses too far.

harshedbuzz

@Mariyke

This is a tough one. I don't envy you this decision. Would it be possible to move mom nearer where you live? Long distance caregiving is incredibly difficult.

In advanced stages, I'd be inclined to pass unless I had boots-on-the-ground for the recovery period. The procedure is generally done with conscious sedation which requires patient cooperation. And the pre- and post-op care and drops schedule is critical. Can you 100% know that she'll be cooperative for the 4 weeks or so she'll be getting drops? Could she potentially refuse them? Are you comfortable with the facility's promise that they can be 100% compliant on maintaining the schedule or drops? (DH who doesn't have dementia, had them done a few years back and I had to make a spread sheet to track each eye and the 4/5 prescribed drops) Could the surgeon use Dextenza insert instead?

One caveat, as the disease progresses, visual processing becomes an issue eventually. Even with 20/20 vision and perfect lenses, a PWD will not recognize and process what they see.

HB

Victoriaredux

Will just having one eye done make distortions? Falling is already a hazard . And she probably won't understand why her eyes aren't the same.

SusanB-dil

Hi Marikye - This has come up before and I believe the decision was a no-go, simply because the person would not leave their eyes alone, nor would they have tolerated the pre-op and post-op eyedrops.

So sorry you are dealing with this.