Hi! I’ve been lurking here throughout my mom’s battle with vascular dementia. Thank you all for contributing such personal and helpful vignettes—I can’t tell you how much it helped.

My mom passed on Friday, September 13 at the age of 68. Her birthday was last week. She was a brilliant and prominent public finance lawyer who helped millions access affordable housing as a bond lawyer here in NYC.

She grew up destitute in public housing in the west village and single-handedly cared for her mom, who had early onset dementia in her 40s. She got into Harvard Law so she could support her mom and gave up her dream of becoming a history professor as dementia care was (and still is) prohibitively expensive. She eventually moved her mom into long term SNF care, but her mom lived another 40 years.

My mom had a lot of spinal and other health issues for the last 12 years. She had a DX of what they used to call Asperger’s and ADHD, so this made things hard to untangle. She had a fusion surgery in 2012, a DX of epilepsy around the same time, type 2 diabetes, glaucoma/exfoliation, and in 2015, had a scan that showed increased T2 signals. She always had one of those beautiful minds, so she was good at hiding her illnesses and you could write off most of her early symptoms as eccentricity.

I had two moms—but my birth mom died before they could be legally married back in 2015, so I’m legally an enigma, as I’m in my 40s and she never adopted us (but has been my second mom since 1990.)

My birth mom’s death is what really started her downward spiral. She was alone and already struggling with executive function.

Her health issues were further exacerbated by the pandemic, and she fell behind on appointments. In 2022, after a fall, she was rushed to the hospital where she was found to have acute to early subacute infarcts within the posterior right centrum semiovale/corona radiata, significant atrophy, and severe SVID. Aside from word finding, she was ok. She was still working and a partner in her firm until her death (though the last year of her life she wasn’t doing much of anything.)

Headaches and other ailments revealed that she needed a cervical spinal fusion as well, so once she was home from that, her health took a nosedive. She became quadriplegic (not because of the surgery—because the surgery didn’t help as much as it was supposed to). She landed in the hospital in October of 2023 and had a 60 day stay at NYU for sepsis (she didn’t know how she got there—she thought she was there for her eyes.) I hadn’t seen her since the pandemic began. She was still talking fully, though she got names wrong. She had issues with her hands, so I didn’t think much of her inability to manipulate utensils.

Because she couldn’t properly articulate her death with dignity needs (which is not just assisted death but also hospice, interventions, and stopping eating and drinking,) they took her convos as a want to die, and put her in a 1:1 hold. Her psychiatrist and I got into it because her psychiatrist thought she was totally ok and “just bipolar,” (a DX from 30 years prior that was likely actually seizures) so I fought them on institutionalizing her and on putting her on antipsychotics, something clearly stated as a no in her proxy. I told them she was likely having strokes. I was correct, and since she was face blind and they kept losing her glasses, they were conflating access with psychosis. While I got an apology from them, I also got them to do the following: MRI, CT scans, EKG, PROTEIN TAU/THETA (14-3-3), CSF check, and I let them put a NG tube in her temporarily so we could get answers. Her tests came back as CSF positive for 14-3-3 and Tau protein markers, and I had fresh test results to work with, and I’m glad I was able to get these done while she was cooperative.

She developed bedsores at NYU and got sent back home. We had a nice Thanksgiving at the hospital and I noticed she couldn’t chew her favorite cookie. She carried on cogent conversations, so I assumed this was ok and that it was all part of her having to retrain her brain post-stroke. I had her on 24/7 home care (EXPENSIVE) and this is when she became fully incontinent. She developed another UTI and then sepsis, so she spent another 40 days in NYU’s telemetry unit.

She now had echolalia and was sundowning, and putting the TV on was confusing her and making her think she was on the run, as news was once her thing. Her bedsores got worse. I was told she only had a few weeks to live, and this happened several times. She always rallied. After this stay, her ability to swallow and speak was curtailed, and she moved to all purée.

She kept telling stories about her childhood as if they were in present times, and kept calling my husband her cousin from childhood. Every time they’d say she only had a few weeks, she’d freak out on them and prove them wrong. She begged me to help her get better. Doctors kept trying to convince me to let her die, but she was still totally there and very against it.

After she left that place, we were finally able to get her on Medicare and found a place that would care for her 24/7. We also had an aid with her from 8a-8p which was super expensive but necessary. Another UTI landed her in the ICU, but I changed her hospital. They figured out where the bacteria was coming from (growing on kidney stones-not the external catheter), and she again rallied and was using her phone again with assistance and socializing. I got a weird call from her in March of this year right before she got out, and she was congratulating me for a photography award I was apparently receiving in England (someone left the TV on again.) I didn’t correct her.

She rallied once more and was able to get through a few calls with her firm to discuss long term disability. In mid July, she landed in the hospital again for a week for another infection. She got out, and I sent my kids and husband to go see her. She responded a little to my husband’s gossip, but mostly stared blankly and didn’t respond. I had prepped the kids so they knew. Right after this, my other partner went in for emergency gallbladder surgery, and two days after he got out, my daughter went in for her VBT surgery and stayed in the ICU for 11 days. Not a week later—my mom was back in the ICU, but this time an aid noticed she was having trouble breathing.

She hadn’t eaten in a month and was barely drinking. This is when I knew. A chest x ray revealed a collapsed lung, likely aspiration pneumonia, and they had her on BiPaP and vasopressors. The head of the ICU and I spoke for a while. He told me she was only alive because of the BiPaP machine, and that her body could no longer expel CO2, so she was now facing Hypercapnia. They asked me if I wanted to put her on hospice (removing the BiPaP) and gave me great advice: don’t do it til I return in the morning. She will be left here for hours until morning. He told me intubation would likely kill her, and that the BiPaP was on for 50 hours and was becoming cruel.

Overnight, I played her music and at some point, she started gasping and looked at me and I asked her what she said—she very clearly mouthed pain. I convinced nurses and docs to give her pain meds despite them telling me she wasn’t in pain (they were wrong.) It dropped her respiration super low, but she wasn’t feeling pain. We got her another bolus when needed and it did the same. The overnight doc remarked that he didn’t feel right contraindicating ICU care with respiratory depression, but I told him I wasn’t doing diddly squat til they got that chaplain. They listened.

The next morning, my ICU head came back and told me I’d made the right calls. He told me her labs were exactly the same, and that I should put her on hospice. I made the call. He said CO2 wasn’t a bad way to go, and that they’d give her any drugs she needed. They took her BiPaP off and put her on O2. They put her on a hydromorphone drip and told me she was allowed to have extra boluses, O2, and benzos on demand. Her final wish was to pet a dog, so my friends helped me find the Good Dog foundation, who came to the hospital and brightened her life.

We’d been up for 30 hours at this point, so we eventually got her settled and slept in the room with her. I woke up at 6am and she was in full party mode. Eyes wide open, very inquisitive about the room around her (nonverbally), and I played some music for her and she was trying to move her lips along to the music. It was so weird seeing her like this! The rally is real. Palliative care stopped by and I asked them about the prognosis—they’d told me it was the same and that she had maybe days.

At around noon, we noticed her breathing become labored, and I asked her if she was in pain and she tried to mouth words but couldn’t. I had told palliative we needed faster drug response care and she assured me we’d have it. I told my mom that we were getting her drugs for comfort and that there was a chance she wouldn’t return from them as they inhibited breathing. She looked at me and I had to interpret it as —do it. The wonderful nurse brought a bolus and told me he had a benzo in his pocket for whenever I was “ready”, and I told him I’d call him when we were so we didn’t have to wait. Another hour went by and I saw her breathing was labored and asked her again. She looked at me and I knew. I buzzed the nurse, told my mom what we were doing, and told her not to worry … I had her affairs under control. I told her I loved her, and I gave her head scritches. We gave her that dose and both her eyes went in different directions. She looked so peaceful! Her mouth was slightly open and she wasn’t reacting to external stimuli. My partner went out to get us coffee, and her doctor came in to check on her. I told him I heard what I thought was a death rattle, and he told me probably not—but that her breathing had definitely changed. His notes said “she is transitioning.”

He left and my partner came back and took a nap. I put on a nice playlist behind her head and kept watch. At around 2 pm, I noticed her breathing was far more shallow and she started skipping breaths. I started counting. She’d take four breaths, and randomly skip. This happened for a little longer and then I woke my partner up. He counted with me and told me to take a shower cause I probably wouldn’t have another chance.

Once I got out, I stood with her and stroked her hair, and noticed she was no longer responding at all to my touch. The breaths got more and more shallow and at around 2:15 pm, the external catheter container on the wall filled slightly with urine that made the entire thing fog up. I’ve never seen that before and knew it meant something. I kept telling her she was doing so well and that I was so proud of her. Her breaths moved up into her chest and then throat, and the pauses between breaths grew lengthier.

At 2:30, she stopped breathing for 30 seconds, and then took a few more breaths that seemed to be in her throat. Then she stopped breathing entirely at 2:37. We watched her carotid continue to pulse for another two minutes, and then it stopped. It was barely noticeable but not scary like I thought it would be. We took a few minutes and then got a doctor in there to confirm. He confirmed, and then we spent the max allotted time in there saying goodbye. I closed her eyes and took her mask off. That revealed yet another pressure wound on her nose, so I’m glad we got her off that machine.

I have no regrets. She died within 24 hours in hospice, and I’m glad I pushed back on doctors every step of the way. I am glad we put her in when we did, and had I listened to the NYU docs, I would have put her in hospice way early and regretted it. It was tough putting her in there while she was still there (aphasia doesn’t mean gone!)—and it was tough not scaring her while also doing the thing I knew she wanted which was not lying to her. I found a happy medium between her proxy and a dignified death that didn’t break her wishes nor lie to her (cause she was vehemently anti lying and wanted to know the truth even when it was awful.) I got the hospital to bend all sorts of rules for solidarity.

I’ve shared this in full cause it’s very very hard to get a real view unless you’re there for it.

I’m starting the process of estate probate now. I’m offering myself as a resource should anyone have any questions about my navigation as a pay it forward for the info that helped me here. <3

Here’s a bonus list of stuff I wish I had done/done differently:

• Gotten a list of her most favorite songs (but hours and hours-not the same five.

• Read to her more aloud.

• Had her passwords written out somewhere.

• Checked on her phone earlier. Each time she was in the hospital or a SNF, she’d wind up helping out her roommate a little too much (like a 1k check for food or use of an Amazon account).

• Known more about in hospital hospice (actually great). I learned palliative works in tandem with the regular docs, so notes on files are extremely important.

• Connected to her hospital notes more quickly. You can see them well before doctors can. It was super helpful having questions ready for the docs. Also—the more you know, the less they bullshit or baby you. Similarly, if you change hospitals for shitty reasons, don’t connect those charts out the gate. Some docs are willing to do different tests if you can make the case.

• If you say to docs “this is an off the record question,” they’re more likely to be honest with you.

• Be super kind to nurses—they know more than docs a lot of the time.

• Know who is wanted at the funeral and who isn’t, and honor that.

• Before they die, make sure you have those bank accounts in trust to you, that you have a will or a trust set up to avoid probate, and that there are designated beneficiaries for death benefits.

Here’s a bonus video of her last wish (Thank you again to the Good Dog Foundation. They were such a bright spot in a gloomy end.)

I’m open to answering any questions as I can.

Thank you again for allowing me to share in your stories.

In solidarity <3 🖤🖤🖤