Wet Macular Degeneration shots

Quilting brings calm

Last month Mom was diagnosed with wet macular degeneration. She had dry and it suddenly turned wet. She only got a few minutes notice that she was going to see a specialist upstairs and get a shot. The specialist turned Mom’s chair so that she was flat on her back, with her knees still bent. He didn’t didn’t walk her through each step in the process( numbing drops, and then betadyne and then the shot). I’m not sure he even told her to hold still, but he might have. He just did his thing and when he did the shot, she jumped - a startle reflex.

Today I took her for the second shot. She’s still having to repeatedly go over the fact that these shots will continue ad infinitem. She was anxious when we left the AL, and more so in the waiting room- wanted to come home before her name was even called.

So I talked to the medical assistant about her needing some warning about the shot. Mom didn’t remember the process from last month. So we went over it. The doctor came in and told her the process, and to hold still.However he did not stop after the betadyne and expressly say here comes the shot. She jumped worse than last time.

The doctor said that if she jumps again next month, she can’t have the shots because that’s dangerous. Ups the risk of infection for one thing. He also commented on her forgetfulness. I pointed out that she has been diagnosed with at least MCI. I had to translate that acronym for him. Which makes me wonder because I saw a lot of elderly people on the waiting room ( big practice, multiple doctors).

So, my question : have any of you encountered this issue with startle reflex and what if anything can be done so she can continue the shots? This is her good eye, her bad eye is 20/100 distance even with glasses. The bad eye has never had central vision due to a defect in the blood vessels

Iris L.

QBC, are you in the procedure room with your mom snd the doctor? Tell him that he needs to go slower, step-by-step.

Iris

Quilting brings calm

https://alzconnected.org/discussion/comment/182667#Comment_182667

Yes, I was, both times. I know the medical assistant talked to him about our concern before he came in. However, you are right.He needed to explicitly stop before the shot and say that the shot was ‘now’. Rather than telling her the three steps all at one time, and then expecting her to understand.

harshedbuzz

@Quilting brings calm

A couple of thoughts-

You say "at least MCI". This is a situation where having a better idea about what kind of dementia and where on the progression continuum she currently lands. Both my parents have/had AMD. With dad (PWD), who had dementia, we backed off active surveillance in the middle stages using the test "what would you do with that information?" knowing he'd probably pass from dementia, COPD or heart disease before he lost his vision. By this point, his visual processing was pretty impacted anyway and we knew from previous eye surgeries that the shots would not be easy for him if he became a candidate.

That said, I would ask her neurologist if there was a short acting medication to prevent the reflex so you can continue the shots.

Also, the waiting room of elders doesn't mean this medical team is trained to or even interested in dementia-informed care. You might want to look around if you live in a community where you have options.

When I first moved my folks north, I found them a PCP who gave me referrals to the specialists my parents would need. Out of 10 specialists we got 8 great docs, a turkey and an a-hole. A-hole was the retina specialist at a big eye practice. I never liked this practice, they treated their patients like cattle-- scheduling batches of people all at once so appointments could take upwards of 4 hours, they dispensed eye drops in the waiting room going person to person, and once when dad fell, no one helped my mom get him up. Not long after dad died, mom had an eye emergency and an associate turfed us to the ER of the teaching/eye hospital-- it was a completely different experience. I asked mom's new neuro-ophthalmologist who'd they'd recommend and changed her to that practice. It's still a big place filled with many elders, but the care and respect shown from check-in to check-out is impressive.

HB

JJ401

Another vote for a different doctor. I realize that not every place has multiple practices, but if there are any near you, I'd try another practice.

Quilting brings calm

This retina specialist is in the same clinic and building as my parent’s optometrist. The appointment last month was an emergency call from the optometrist to the retina specialist to get her in right this minute. It’s a huge multi speciality clinic - everything from PCPs to cardiologists, gastroenterologists etc. my parents don’t use anything there but the eye doctor. There may still be a retina specialist at one other practice in town. My spouse’s retina specialist was at a third practice in town, but he switched locations and we now drive 30 miles from our house to see him. We may have to transfer her there - which would make my drive to get her 35 minutes and then 55 minutes to that doctor. It may be my only option- and even then she has to stop jumping.

Their PCP is in the same town as my spouse’s retina specialist ( they used to live there). As is step-dad’s cancer doctor, so I do that drive several times a year already. It’s just that the AL could transport her to the local retina doctor if I couldn't, but not the one 50 minutes away from the AL. So things like me having a knee replacement this winter could cause an issue.

I am going to call her PCP on Monday to see about something she could take that morning to calm her. Will call the neurology NP or her psych resident if PCP prefers it.

HB- I hear you about needing a better diagnosis. Unfortunately we live near a town of 120,000, not 500,000. The neurologists here don’t seem to do PET scans or spinal taps. We see a NP in the neurology clinic of the local teaching hospital. She’s had an MRI of her head a few years back ( won’t sit still for one now) and a CT scan. NP conferred with the neurologist about it. She’s got some frontotemporal lobe atrophy and some ischemic changes. They just won’t call it more than MCI even though I tell them it’s more. Because of the MMSE scores - and she showtimes. They won’t even say that she will eventually go the FTD route.( I asked). I can guarantee you that she’d get a stage 4 non specific dementia diagnosis if she sat through the 2-3 hour neuropsych testing. I sat through those tests with my step-dad.

harshedbuzz

@Quilting brings calm

Your situation is way more complicated than mine.

Even here, at the university medical center memory clinic, not everybody gets a spinal tap or PET scan. My dad only got one to 1) settle the debate between alcohol-related WKS and Alzheimer's and 2) because mom has stellar health insurance. Even in my medically well-served community, we traveled an hour to have the test. I feel you; it's hard when there are 2 and they're both challenging.

I wonder if your mom is headed towards a FTD diagnosis. The one PWD I know (2nd hand via my DH) was a brilliant (earned his PhD at 21) research VP who initially presented as brilliant but flaky before starting to do things that were stunningly stupid. Initially, he remained quite charming in his public-facing roles but his wife divorced him and his kids and hers all distanced themselves. We were told by someone who knew the situation that he retained the ability to do reasonably well MoCA, MMSE and SLUMS until 6 months before he died.

HB

Quilting brings calm

@harshedbuzz

I asked about FTD because of the atrophy in that area. However, her behavior seems more like Alzheimer’s so far: memory loss, confusion, loss of executive function. She’s been using a walker for about 4 years. Her behavior problems are limited to anxiety and depression. Plus she’s been pretty much in the same stage for almost 4 years now. The only major change seems to be some fecal incontinence in the last few months. Which I think is due to donepizel. I sometimes wonder if she has vascular dementia and if there will be a sudden step down ( or if the incontinence is the step down).

My step-dad was diagnosed last fall with stage 4 non specified dementia with behavioral issues. Mostly based on the 2.5 hour tests by a neuropsychologist and my input about his behavior and a delusion. I think he may have FTD but he’s refusing to go to the neurologist so that we can get some medication and get the scans ordered. He’s the type of person that you can’t tell has cognitive issues if you don’t know him well, you just think he’s hard of hearing and stubborn. He walks leaning forward with his arms by his sides and shuffles along. Refuses to use a walker outside the AL

Regarding the shots- I may try to stand next to her and use one hand to lightly press on her hands and my other hand on her scalp somewhere to help her stay still - if the doctor will let me.