Kathie Gagne died 4,702 days ago.
Incredibly I was able to talk to mom for about fifteen minutes this afternoon. She was scared out of her mind, scared to pieces, really. But we did talk — about my son (her first grandson), about the Super Bowl, about how scary a place Stewart-Marchman was, etc.
Maybe she is going to pull out of this soon?
A good friend of my little sister’s emailed me to ask how mom was doing. At first I started writing a long reply, but could never manage to finish it. Here is what I did send:
Dear [name redacted],
Thank you so much for your sweet note. I have tried to write you (and [name redacted]) several times since I received your note, but I keep finding it very difficult to be concise.
I’d like to send you the full story of what’s happened so far and what the status of everything is right now, but I’m also very much aware that once I start writing, I end up with a twenty page document.
Yes, mom is at Halifax. I’ve primarily been talking with Connie Wade, who — as far as I can tell — is a social worker assigned to mom’s case, who works specifically in the psychiatric ward. Dr. Caliendo is the main physician assigned to her case. (Dr. Garewal is a neurosurgeon who has also been consulted a few times.) Dr. Caliendo was also the main physician at Stewart-Marchman-Act, and he appears to be somewhat overwhelmed by his dual responsibilities. I’ve only been able to talk to him twice (Dec. 21, Jan. 30) even though I have made repeated attempts to get in touch with him. When I talked to him when he called me at 5 o’clock Monday morning — I was already awake, luckily — he told me that he was an old man who often forgets things. He may have intended that to be funny, but I didn’t think it was.
Right now I think that mom is simply being “managed”; nothing is actually being done to help her, or to determine what happened. They are merely trying to get her to a point where she is “stable” enough so that they can get her transferred to a long-term facility (like a nursing home or assisted living facility). The fact that she spent two months at Stewart-Marchman-Act, ostensibly under the care of Dr. Caliendo, and absolutely no effort was made during those two months to do anything to *help* her (other than keep her sedated so she would not be a nuisance), does not instill much confidence in me that the same doctor is going to do much more while she is at Halifax. As far as he is concerned, she has “dementia”, which is incurable, and all we can do is give her enough drugs to keep her sedated and keep her from being scared to death of being institutionalized.
I disagree with that prognosis, and I disagree with that course of treatment. I don’t even really consider it a prognosis — I know that she hasn’t received the battery of tests required to medically diagnose “dementia” — and I certainly don’t consider keeping someone stoned all the time any sort of “treatment”.
So that’s the very, very, very quick and dirty summary of the situation right now.
I’ll write a more detailed synopsis as soon as I can.
Thank you so much for caring. I realize there may be nothing you can do — or nothing that can even BE done — but it is sometimes very helpful just to have someone that listens.
I called and talked to a nurse named Dan for about a half-hour this morning. He told me that her doctor is Dr. Caliendo, although I already knew that. We discussed her current medication schedule and he said that Dr. Caliendo had recently prescribed:
When I told him that I was in Los Angeles, Dan told me that he had visited Culver City last year.
Dan asked for my approval to give mom 50mg of Benadryl twice each day, which I granted.
He said that mom is very calm and relaxed today.
At this point I am seriously starting to think that Dr. Caliendo really has no idea what he’s doing and is simply throwing every psycho pharmaceutical he can imagine at her.
The NIH website says this about Zyprexa:
Olanzapine is not approved by the Food and Drug Administration (FDA) for the treatment of behavior disorders in older adults with dementia. Talk to the doctor who prescribed this medication if you, a family member, or someone you care for has dementia and is taking olanzapine.
I started to write this email, but never finished and never sent it. I was sending it to my little sister’s good friend, and her older brother:
Hey, [name redacted] and [name redacted],
Thank you, [name redacted], for sending this email. I really appreciate it.
I don’t know how much of the story you two know, so I’ll try to give you a quick overview of the current situation. I apologize in advance for how long this is. I’m trying to keep it as short as possible and not include every little detail while still providing enough information so that you’ll understand.
On the night of (or the night after, I am not sure) Thanksgiving, the manager of my mom’s apartment complex called the police because my mom was wandering around the parking lot unable to find her way back to her apartment. A few weeks prior to that I had added my mom and [name redacted] to my cell phone plan, and I guess [name redacted] hadn’t let the apartment manager know her new number. (And they simply didn’t have my number at all.) Since they were unable to contact anyone, they called the cops. Because mom was unable to identify the month or the year, or who the current President is, the cops “Baker Acted” her. They took her to Halifax for a CT scan and then immediately took her to Stewart-Marchman-Act, which is the only other facility in Volusia County other than Halifax where they can place someone on a Baker Act hold.
Stewart-Marchman-Act is basically, as far as I can tell, just a place where they stick cocaine and heroin addicts and the truly psychotic. They’re held there on a short-term basic; the average stay there is only three or four days. Because mom was scared to death, and I’m sure she was suffering from panic attacks, they started sedating her pretty much constantly so she wouldn’t be a problem. After the first or second day there, she was pretty much a zombie. I called to talk to her and the nurses and Sophia Mas, the social worker there, every single day. (I also started sending her cards and letters every day, too, including photos of my son and the family.) I learned that Dr. Caliendo is the doctor in charge of everything over there. He is also the doctor in charge of the Psychiatric Ward at Halifax.
After THREE FULL WEEKS we finally managed to get to talk to Dr. Caliendo on Dec. 21. He talked to us for about 20 minutes, and based on his analysis of the CT scan she was given right after Thanksgiving, he seemed to think that she had some brain atrophy, but there was nothing tremendously wrong with her brain, so he was just calling her condition dementia. He said it was incurable and we would need to find long-term care for mom.
When that phone call was completed, we immediately got a phone call from Sophia Mas, who explained that I had misunderstood Dr. Caliendo and that in fact what he was trying to tell us was that mom had suffered a major stroke at some point in the last year to eighteen months, and that she had suffered many “mini” strokes since then, which had caused irreversible brain damage. I was, of course, shocked and devastated, and more than a little angry that it took them three weeks to tell us this, especially since I called every single day, and repeatedly asked to be able to talk to Dr. Caliendo during those three weeks.
Sophia explained that she had started the whole process to get mom on a wait list for assistance with funding for an assisted living facility (basically Medicaid).
Mom became more and more like a zombie, eventually to the point where every time I called they told me she was sleeping. After about two weeks of that I became very upset and told Sophia that I insisted on speaking with Dr. Caliendo again, and that I wanted them to stop giving her so much Rispirdal (the main drug they were giving her).
On the 12th of January Sophia told me that Dr. Caliendo had agreed to stop giving her Rispirdal, and that they were going to slowly wean her off of it. By the 18th she was completely off of the Rispirdal and was able to talk on the phone and no longer seemed like a zombie at all.
Also on the 18th, almost a month after my phone call with Dr. Caliendo, I called Elder Source and C.A.R.E.S. to see what mom’s position was on the wait list. Both of them said they had no record of mom at all. When I asked Sophia about it, she admitted in an email to me that she actually had not done any of the things needed to get mom on the waiting list; she had forgotten about it. So I spent two days on the phone with multiple agencies to make sure mom was in line to get whatever funding Tallahassee decides to release this year.
On the 19th, the discharge coordinator at Stewart-Marchman-Act called me to tell me that they were transferring mom to Halifax so she could receive medical care. I was very, very upset that it took them almost TWO MONTHS to decide this, but I was glad because I have tremendous respect for Halifax Hospital and I knew she would receive better care there. (This was before I learned that Dr. Caliendo was in charge of both places.)
She was transferred to Halifax on the 19th and on the 20th a neurosurgeon named Dr. Garewal there ordered an EEG and an MRI to see if they could determine the cause or source of her dementia.
It is important, I think, to note that from the 19th to the 22nd, I had several conversations with my mom in which she sounded as lucid and competent as she had prior to the event in the parking lot. She was scared out of her mind, and understandably anxious and worried, but she was able to communicate that she understood she had had a stroke and that she was at Halifax where they would take care of her. She talked about the Patriots going to the Super Bowl and sounded infinitely better than she had at any point at Stewart-Marchman-Act.
The day after she was admitted to Halifax, I received a call from Constance Wade, the social worker there who would be managing mom’s case. She sounded much more competent and intelligent than Sophia Mas.
I called the Halifax Hospital Psychiatric Unit to talk to mom again. Some random man answered the phone but didn’t tell me who he was.
I waited, listening to the sound of people shuffling around the room, for three full minutes and then mom got on the phone.
After I said, “Hi, mom,” and she replied, “Hi,” I told her that I just wanted to talk to her. She repeated what I said like she was a zombie: “I just want to talk to you.”
Then she said, very clearly, “This place is horrible.”
I started to ask why, but she just said, “I gotta go,” and then I could tell she put the phone down and walked away.
I waited for a minute or two, yelling into the phone in case someone could hear it, but there was no response. So I just hung up.
My good friend emailed me in response to something he saw me write about how the “hold music” was nicer at where she is now. He asked me:
What do the doctors say? Can you eventually visit?
I sent him a very long reply:
Ah. I hadn’t told you about the previous place. When she was at the other facility — Stewart-Marchman-Act, the other “Baker Act” facility in Volusia County — the hold music there was inconceivable. It was this terrible, awful trance sort of dirge on a loop. It sounded like something they’d play in a horror movie about a mental ward. It was traumatic to be put on hold there.
Now she is in the psychiatric unit at the county hospital, which is infinitely better than where she was.
The doctors are mind-numbingly bad. It’s just devastating how unacceptable the care is for the uninsured in this country. She is basically receiving no treatment at all, and hasn’t been for almost three full months now. They medicate her to keep her stoned out of her mind so she won’t “cause a nuisance” or “make the other patients anxious”, but that’s about it. Without anyone there to police her caregivers, she is just wallowing. I finally forced them to stop pumping her full of anti-psychotic drugs on the 12th. They weaned her off them slowly and she was done with them by the 19th. Then on the night of the 19th they transferred her from Stewart-Marchman, which is simply a halfway house / rehab place for cocaine and heroin addicts and the truly psychotic, to Halifax Hospital, presumably for some political / budgetary reasons. That was fine with me, though, because that place was a disaster. At least at the hospital there is a CHANCE that she will receive medical attention.
But, sadly, she isn’t. They gave her an MRI and that’s about it. Once the anti-psychotics were flushed from her system, she miraculously became lucid again and you could have a conversation with her.
Then without talking to me, they put her on Wellbutrin and she immediately became paranoid delusional again. After three days I flipped out and learned about them starting her on Wellbutrin and got them to stop, but she’s now just completely frantic and scared to death.
The doctors just say, “She has dementia.” It’s a bullshit diagnosis. It’s not even really a “diagnosis”, because I KNOW they have not performed any of the battery of tests that are used to make that diagnosis. And the primary doctor simply says that it’s incurable and the best we can do is attempt to stabilize her until we can get her moved out of his responsibility and into some other long-term facility. Pass the buck.
I can visit any time I want. But […] I don’t even know what I could possibly accomplish other than yelling at the doctors there. And, really, how much can you yell when you aren’t a paying customer?
So, it sucks.
I just called my mom. I thought maybe if I talked to her in the middle of the day instead of at night she might be more alert / rational.
A man answered the phone in the common room at the Halifax Hospital Psychiatric Center, and said, “Hello?”
I said, “I’m calling to talk to Kathleen Gagne,” and he said, “Okay. Hold on.”
After about a minute she picked up the phone. She said, “Hello?” and I said, “Hey, mom. It’s David.”
She said, “Hi. How are you doing?” I sort of laughed and said that I was fine and asked how she was doing. She asked, “When are you coming to see me?” I told her that I would be there as soon as I could.
We talked for about four minutes, and almost the entire time she was just frantically repeating, “I gotta go. I gotta go.” I told her she didn’t have to go, and that she could talk to me. I asked her if she wanted to talk to me and she said, “Yes.”
I asked her to try not to be scared, because she sounded petrified. She just said, “I am scared. I gotta get out of here. I’m so tired. Please take me out of here.” Then she said she had to go because she was naked (which I know isn’t true because a nurse brought her to the phone in the common room to talk to me, and he wouldn’t have let her do that naked) and she needed to put some clothes on.
She said she was in a bad place, and I tried to explain to her that she was in the hospital, and that they were taking care of her, and that I call every day, several times every day, and I know all the doctors and nurses and I make sure they are taking care of her. I asked her if she was getting the photos of [name redacted] I send; I write her a card every day and put some pictures of [name redacted], or of me and [name redacted], in each one. She said, “Yes, they show them to me to tease me.” I told her that I sent them, and that the nurses aren’t trying to tease her, but she just kept repeating, “I gotta go. I gotta go.” The line went dead for a second and then I heard the on-hold music for about ten seconds, some nice classical piece. I thought the line would be disconnected, but she returned and said, “Hello?” I said, “It’s me, mom. I’m still here. It’s okay. You can talk to me,” but she just returned to repeating, “I gotta go. I gotta go,” and then the line went dead.
For some reason that I cannot explain, it actually helps to write that.
Nurse Brian called from the Halifax Hospital Psychiatric Unit because mom was apparently acting really crazy. He said they had to move her to another unit because she was making all the other patients anxious — grabbing at them, going into their rooms, etc.
He wanted to get my permission to give mom Haldol “as needed” for anxiety and start her on a twice-daily regimen of Zyprexa. I agreed, but said I really wished they’d simply call me and let me try to talk to her before giving her more drugs.
The call lasted just about thirty-five minutes.
I tried to call the Halifax Hospital Psychiatric Unit to talk to mom, but was told she was asleep. Nurse Pat said she’d make sure to call me if mom woke up at all in the night.
Dr. Caliendo called me at 5:15 AM PST and we had a thirty-five minute conversation.
I gave him permission to administer Zyprexa to try to stabilize mom. I tried to give him a history of mom’s medical and psychological issues, but he made it clear that he was spending much too long on the phone with me. I noted that mom was / had been competent to live alone right up until she was admitted to Stewart-Marchman and he started her on the Aricept and / or the Namenda, and that I was concerned about the fact that he seemed to be keeping her on a “drug cocktail” that seemed to be making her worse every day and not better.
Dr. Caliendo apologized for frequently forgetting to call me, despite my repeated message for him. He blamed it on being “an old man” and the time zone difference.
He said that he decided to transfer mom to Halifax from Stewart-Marchman because he wanted to rule out any potential “medical” reasons for her dementia. Dr. Caliendo said I needed to face the fact that she was “incurable”.