In February of 2012 one of my good college friends asked me how mom was doing in an email about a different topic. I realized that I hadn’t told him anything about what had been happening, and that he was someone I could trust. So I wrote him a rather long synopsis of things.
From: Gagne, David
Subject: Re: SXSW
Sent: February 23, 2012 10:50 PM PT
re: Is your Mom OK?
Sorry I never responded to you on this. It’s been pretty rough, and I’ve spent so much time dealing with it that I haven’t had much time to update people. Now that I’ve written all this (below), though, I’m probably going to copy and paste it to the three or four other people that have asked me what’s the story.
My mom is currently 63 and has been a raging hypochondriac for her entire life. As far back as I can remember, she was always complaining about some phantom illness or problem. I learned the definition of “hypochondria” when I was still in elementary school. So a couple of years ago — maybe 2, maybe 3 — when she started telling us that she thought she was losing her mind, my sister and I just chalked it up to the same old, same old. She’s also always been tremendously overweight, and I have done my best to convince her to get in shape for at least 25 years. And, just for added fun, she’s battled with depression her whole life, too. (There is some speculation on the part of my father — they divorced in 1979 — and my sister and I that she may have been sexually abused as a child or young adult, and that is what contributed to all her phobias and manias.)
For the last two or three years she has been telling us that she can’t remember things, or that she can’t focus, or that she’s having headaches. We seriously just always blew it off because she’s been saying stuff like that for our whole lives. We also assumed that the real problem was that she was severely depressed because — in addition to losing her job with the State of Florida and having her home foreclosed on (even though [redacted] and I worked for hours and hours with her bank and mortgage company to make sure that didn’t happen; she just never did the simple paperwork she needed to do to avoid it; we didn’t know it but she wasn’t opening any mail for months at a time because she was “afraid” of her bills) — she was also depressed because the sole focus and love of her entire life, my sister and I, had moved far away from her and Florida. My sister moved to Chicago, Alaska, and then Seattle, and I’m here in LA.
I talked to my mom on average five days every week since I left home at 18 to go to UF. I’m not kidding. If I went two days in a row without talking to my mom it was a big deal. Then when [redacted], I told my mom that it just had to stop; that I couldn’t be the focal point of her whole life any longer because I had to put [redacted] first. I thought that she was okay with that, and we cut it down to maybe two phone calls every week. But what I didn’t know was that — because of a combination of high blood pressure (because of her weight, we assume) and genetics, she was experiencing “small vessel ischemia”, which is basically just a different way of saying “lots of little tiny strokes”. She probably didn’t even realize that we weren’t talking every day.
Eventually it got to the point where she had no idea how to use a telephone. Her land line would ring and she’d try to answer her cell phone. She’d go without charging her cell phone for days at a time and we wouldn’t be able to get in touch with her.
The big problem is that she has an unbelievable IQ. She “knew” that something was wrong, but she was scared and embarrassed and didn’t want to tell us, so she did a good job of hiding things from us. Eventually she couldn’t tell me the day of the week or remember what she had for breakfast, things like that. It was pretty bad, but we just kept thinking that she was depressed and that was the real problem, and that once she pulled herself together everything would be okay.
She completely abandoned any rational schedule for her blood pressure medications, which likely compounded the ischemia. A friend from her church visited her apartment — she’d been unemployed for over three years — and told us that her dog appeared malnourished and there was cat and dog urine all over the apartment. My sister flew to Florida and visited her in early November; she replaced the carpet in her apartment and took her to get an MRI and to see a psychologist. But they didn’t seem to think anything was wrong with her beyond depression. (Apparently if you aren’t looking for it, it’s hard to see small vessel ischemia because it looks very similar to just normal aging of the brain.)
My sister returned to Seattle and my mom promised us that she was going to “snap out of it” and try to be happy with her life even though we were living on separate coasts.
Then on Thanksgiving last year, she went to her brother’s house for dinner. ([redacted]) We video-chatted with her on Skype on my cousin’s laptop and she seemed fine, although a little out of it. Nothing out of the ordinary or anything.
The Saturday after Thanksgiving I got a call from a state-funded drug rehab facility. They had my mom there and were holding her under the Baker Act. (As far as I know, the Baker Act is a State of Florida thing and not a national thing.) Basically it meant that they thought she was a danger to herself or others and were holding her against her will. She had been found roaming around the parking lot of her apartment complex, lost and unable to find her way back to her apartment. The apartment manager called the cops because she was scaring the other tenants. (In a bit of bad luck, they were unable to call my sister’s cell phone because when my sister visited in early November I put both my mom and my sister on my AT&T plan, got my sister an iPhone and had my sister get my mom a big senior citizen’s type cell phone with giant buttons, hoping that she’d be able to use that. But AT&T made my mom and my sister get new cell phone numbers and they forgot to update the apartment manager with them.)
When the cops got there, my mom couldn’t identify the day of the week, or the month, or who the current President of the United States is. She was completely petrified by the cops and started freaking out, so they classified her as psychotic and took her into custody. They gave her an MRI at some rinky-dink hospital in western Volusia County and then Baker Act-ed her into the rehab facility.
So she was stuck in a place with a bunch of meth, crack, and heroin addicts. The doctor examined the MRI and told us she’d had a severe stroke and was suffering from incurable, irreversible dementia caused by brain damage. (Later she got another MRI and they told us she hadn’t had a severe stroke; she’d had the ischemia, which is a bunch of mini-strokes. Same thing, really.)
Now … you might remember from my website that her mother — my grandmother — was tragically killed by the incompetence of a nurse at the assisted living facility where she had been living. Because of that my mom is (justifiably, I think) scared out of her fucking mind of being institutionalized. So now she’s both institutionalized AND has brain damage that makes it nearly impossible for her to think straight, so she was screaming and trying to escape and crying uncontrollably the whole time. The doctor there — a guy working for the State of Florida and probably making shit pay with dozens of insane patients, most of them homeless and / or criminals — just started pumping her full of anti-depressants and anti-psychotic drugs to keep her sedated to the point where she was a zombie. And I mean, like, seriously a zombie. She couldn’t even hold a phone in her hand to talk without dropping it. She just stared at the floor and didn’t interact or react to anything. It was awful.
Three or four days after that [redacted] and I had to put our dog Buddie down. And then very shortly after that — on Christmas day, actually — [redacted]. ([redacted])
My mom has no health insurance and no money. She’s not old enough to get full Social Security benefits, and there are thousands of people on the waiting list ahead of her in Florida for supplemental disability assistance.
About a month ago they moved her out of the drug rehab place and into a psychiatric care unit at the hospital in Daytona across from the International Speedway, but as far as I can tell they only did that because the rehab place didn’t want her there any more. Incredibly it’s the same doctor that runs both places, and he’s pretty useless. As far as they’re concerned, she’s a crazy old lady that is never going to get any better and all they can do is keep her medicated / sedated so she isn’t a nuisance to the nurses or the other patients.
I really cannot explain in words how terrible it is. It’s the worst thing ever. (Although [redacted] was pretty bad, too.)
I have called and talked to her every single day — often twice each day — since this whole thing started. They’ve changed her meds so that she’s not catatonic any longer, but she never remembers anything we talk about from one call to the next. Sometimes she’ll just put the phone down in the middle of me talking and walk away down the hallway. All she ever does is tell me how scared she is and how much she misses me and how horrible and crazy everyone there is. I’ve written her a letter or a greeting card every day since this all started, too; I always put in a photo of me or [redacted] or me and her, and the nurses tell me that she is very happy to receive them. But she never acknowledges them to me. And sometimes the nurses will tell me that they found two or three unopened letters next to her bed. Stuff like that.
My little sister — [redacted] — [redacted]. A friend of hers from her church is a pilot at American and he gave her a standby ticket so she flew to Florida about a week ago. She’s living in my mom’s apartment (the rent is covered by the meager amount she does receive from Social Security) and going to visit my mom twice a day during visiting hours. An old high school friend of hers loaned her a car to use while she’s in Florida.
Yesterday I got a box in the mail that she sent me filled with collection letters for my mom. It looks like she wasn’t opening any mail for months and months. There’s a warrant out for her arrest for failing to appear in court for something to do with a car that was repossessed years ago. Crazy stuff like that. There’s thousands of dollars of unpaid credit card bills for medicine that she wasn’t taking correctly, ambulance trips to the ER for imagined emergencies, all sorts of crazy things.
So that’s basically the story.
If I had a billion dollars I’d maybe be able to get her into something like the stroke rehabilitation facility at UCLA or some really nice assisted living place where they’d work with her every day, do brain exercises and routines and try new drugs to help her get better. Nobody — NOBODY — really knows how the brain works, and people DO recover from all sorts of things like this. But I don’t have a billion dollars, and she has no money. So she’s in a crappy little room from straight out of One Flew Over the Cuckoo’s Nest, she’s probably getting WORSE and not better because she’s scared to death and except for the two hours each day that my sister goes to sit with her and read the bible she’s just sitting there crying and alone and confused.
So there you go. It’s not a great story.
David Vincent Gagne