On Valentine’s Day my sister flew to Florida. Mom’s friend from her church picked her up in Orlando and she spent the night at mom’s apartment.
I was cautiously optimistic that maybe now things would start to get better.
Kathie Gagne died 4,703 days ago.
On Valentine’s Day my sister flew to Florida. Mom’s friend from her church picked her up in Orlando and she spent the night at mom’s apartment.
I was cautiously optimistic that maybe now things would start to get better.
I called and managed to actually talk to mom today.
The phone call lasted fifteen minutes. The first eight were spent on hold and / or waiting for someone to find mom. But I did get to speak to mom for about seven minutes.
Here are my notes from the call:
mom was not really talking to me; only barely answering questions, said she can’t exercise at all, didn’t get to watch the Super Bowl, enjoys getting cards, said she likes my handwriting / cursive — reminds her of Nana, can’t read, though — very sad; said she had to go — very cold — walked away from phone
I received a voice mail from my mom’s friend from her church. Here is a portion of the message:
“… Thought I’d give you a call. Saw your mom today. Looking much better. Just had a couple questions for ya. You can call me back at your convenience. Buh-bye.”
At 8:00 AM PST I called the Halifax Hospital Psychiatric Unit and left a voicemail for Connie Wade. She returned my call ten minutes later.
Here are my notes from the call:
At 9:00 AM PST [name redacted] called me and asked if I would give him mom’s computer since she would likely not be using it any longer; He also said he hadn’t brought her any books yet. He told me he’d visited mom with [name redacted] and [name redacted], and that mom recognized [name redacted] but otherwise was unresponsive.
At 4:37 PM PST I called and managed to talk to mom for about five minutes. Almost immediately she started saying that she had to get off the phone, that she had to go to the bathroom. I was very sad and asked her if she even wanted to talk to me at all. She emphatically said, “Yes!” She said, “I want to talk to you!” and then — as far as I can tell — she placed the phone on the counter and walked away.
I waited a few minutes but it was clear she was gone, so I hung up.
I called the line for the “day room” at the Halifax Hospital Psychiatric Unit. An unidentified man answered and said, “Okay. Hold on,” when I asked to speak to Kathie Gagne. A few minutes later he returned to the line and said, “She’s talking with her social worker now. Can you call back in like fifteen minutes?” I said I would and then immediately called the -4080 phone number to see if I could talk to Connie Wade and mom at the same time.
Someone named Evelyn, though, told me that Connie was in mom’s room — and not the other way around, as I had assumed — and there’s no phone in mom’s room. I thanked her and hung up.
I called the “day room” line again at 1:30 PM PST and mom answered the phone. We said hello and I asked her if she had been talking to Connie. She said that no, it was a new social worker but she didn’t know who it was.
She said, “I don’t like it here,” and that she had to go.
I asked her if she knew who I was, if she could picture me in her mind, and she said she could. Then she said that she had to go eat dinner and hung up on me.
At 4:05 PM PST I called the “day room” line again and another unknown man answered without identifying himself. When I asked for Kathie Gagne, he said, “Hold on a sec. She might be sleeping.” A few minutes later mom got on the phone. She said, “Hi,” and actually sounded okay at first.
I asked her if she had gotten any cards or letters from me today and she said she had, but when I asked her if it was one of the Snoopy Christmas cards I’d been sending for weeks or if it was just a “regular letter” in an envelope, she couldn’t answer the question. She said, “The last one.” Then I asked her if it was a postcard or a Snoopy card and she said, “It was a card.”
Then she said she had to go to the bathroom.
I said, “Oh, mom. It seems like I can never talk to you,” and she replied, “I can’t do this again,” and then simply walked away from the telephone.
Eventually someone else must have found the phone on the counter and hung it up.
Here is a portion of an email my sister sent to me:
[…] Thank you for including me in the email to Connie. […] I just wanted to clarify that Mom went to Stewart-Marchman on Dec 1. She was brought to the hospital in Deland that day where she received the CT-Scan. […] I miss Mom too, and when she sounds like herself, it makes it even harder for me to picture her in a psych ward. […]
I sent this email to Connie Wade:
Dear Connie,
I hope this message finds you well. I’m copying here my little sister, [name redacted], who is the daughter and only other child of Kathleen, and my wife, [name redacted], who earned her Ph.D. in Psychology and has known my mother for twenty years. (Also please note that [name redacted], [name redacted], and I should be the only three people authorized in any way to discuss my mom’s care and condition.)
I left a voice mail for you on the morning of Friday, February 3, 2012, but understand you may have simply not had the time to return my call since then.
I’m sending this message to both the conniewade@halifax.org email address you provided me when we first spoke on Friday, January 20, 2012 and to the constance.wade@halifax.org email address from which I received a response from you on that same day. (I’m not sure which is correct, or if both are correct.)
This message is in regards to:
KATHLEEN ANNE GAGNE, aka “KATHIE” GAGNE, maiden name: [redacted]
DOB: [redacted], SS#: [redacted]Let me begin by saying that I am tremendously grateful that my mother was transferred from Stewart-Marchman-Act (SMA) to the Psychiatric Center at Halifax Hospital. I have a great deal of respect for the caregivers at Halifax, and I have been there many times. [name redacted], the current CFO of Halifax, is a close family friend, and we have a long history of good experiences with the facility.
I have some questions I would very much like to have answered. It may be simpler to have this conversation over the telephone, but I thought presenting the questions to you via email before we talk on the phone might give you a chance to research any of them for which you might not have answers readily available. (Or if you’d prefer to just email me a reply that is completely acceptable as well.)
(1) Since my mother was transferred to Halifax, (almost) every time there has been a change to her medication and / or someone has felt the need to administer medication, I have been contacted to approve it. Do you know why this was not the case for the entire time she was institutionalized at SMA? She was at SMA from on or about November 26, 2011 until January 19, 2012 and at no point was I ever contacted about her medication during that time.
(2) Very soon after my mother was admitted to Halifax Hospital, I was informed that I was to be her Guardian Advocate (GA). Do you know why this was not the case while she was at SMA?
(3) Shortly after being admitted to Halifax, I was told that the best way to contact my mother was by calling the “day room” for the “2500 Unit”. There seems to be some confusion — at the very least on my part — about what the different units are. Sometimes when I call the primary line (254-4080) the person who answers refers to units A and B (and possibly others) and does not know what I mean by 2500. Can you please let me know exactly to which unit my mother is assigned and how I should refer to that unit when I call for her?
(4) The line for the “day room”, I was told, is available from 9:30 AM to 9:30 PM Eastern time. On more than one occasion I have called after 9:30 AM Eastern and the line was reporting as “busy” or would ring indefinitely because it was not connected. I have also called after 9:30 PM Eastern and the line has been answered. Is this because the line is not controlled by an automated system but is simply a telephone that is either on or off the hook depending on whether a technician or nurse remembers to connect (or disconnect) it?
(5) Since my mom was first placed at SMA, I have sent her a card or letter with some photos of her grandson every day. I have also phoned her every day, at least once each day if not more. Unfortunately the line for the “day room” is almost always answered by individuals very poorly-equipped to handle the telephone. Frequently someone will pick up the phone and then start pressing buttons, or simply hang up the receiver. Frequently someone will pick up the phone and berate me or accuse me of harassment. Frequently I will be told that there is nobody named “Kathleen” there, or I will be told she is asleep; though the tone of voice and / or attitude of the person answering the phone would seem to indicate that he or she is not at all qualified to honestly or correctly provide information. I almost always am forced to call the 4080 phone number to get a realistic answer, and it is very frustrating. Is it permissible for me to directly call the 4080 number first and ask someone there to help me get my mom on the phone? I do not want to be a bother to all of the clearly hard-working and dedicated nurses and technicians at Halifax, but I also do not think it’s reasonable for me to have to deal with trying to talk to my mother by going through other residents.
(6) I would really, really like to work out some sort of schedule for communicating with Dr. Caliendo — or some representative of Halifax authorized and qualified to interpret his findings — on a regular basis. Dr. Caliendo has been in charge of her care since Thanksgiving and I have only had two conversations with him in that time, and both of those conversations only occurred after I pressed very, very hard. According to the GA training guidebook I was given by Halifax, I have a right to be well-informed of what is being done for my mother. At this point I do not know that — beyond sporadically adjusting or changing her prescriptions — anything at all is being done for my mother. It seems to me that since Dr. Caliendo gave me his initial diagnosis of “incurable / irreversible dementia” on December 20, 2011, the decision was made to simply find a course of drugs which will keep my mother “under control” without any effort to rehabilitate her or help her psychologically, either with therapy or mental exercises or anything else. With her history of a paralyzing fear of being trapped and institutionalized, and the traumatic experience of the death of her mother while in an assisted living facility, all of which I have explained many times to every employee imaginable at both SMA and Halifax, I firmly believe that she will never be able to get better (or even “stabilize”) without some form of therapy and / or with the only treatment she is receiving being prescription medication.
(7) I understand that a neurosurgeon at Halifax, Dr. Garewal, has been consulted on my mother’s case. Can you tell me if he was given the opportunity to examine her CT scan from Halifax from December 14, 2009 so he could compare them to the CT scan from Halifax from late November 2011 and the MRI / EEG from January 20, 2012? I am very interested to know if there was any indication in late 2009 that something may have been wrong. I am also desperate to understand why I was given such dramatically different interpretations of her condition based on the late November 2011 CT scan and the January 20, 2012 MRI. (Please, please understand that I am asking purely because I want to learn more about what has happened and — potentially — to prevent further brain damage.)
(8) I am also very much interested in determining upon what — exactly — Dr. Caliendo has based his diagnosis of dementia. I do not doubt that Dr. Caliendo is a thorough and excellent physician, but the information I have been given has been sporadic and (apparently) mis-communicated by the time it’s gotten to me, and I would really like to know the exact details. I would like to know exactly which tests were performed which led to this diagnosis. (I know that in California, for example, there is a very specific battery of tests, similar to the ones outlined by the APA, required to make this diagnosis.) And I would like to know exactly which form of dementia it is that Dr. Caliendo had diagnosed. I also think you would agree that as the social worker assigned to her case, and based on the GA guidebook with which I was provided, it is unacceptable that after almost three full months I am still having to ask questions like this.
Connie, I sincerely hope you understand that I am not merely asking these questions because I was appointed her Guardian Advocate. Kathleen Gagne is my mother, my mom, my mommy. I love her more than I can possibly express and the last three months have been incredibly, unbearably painful. At times I have talked to her and she has sounded exactly like the mother I have known for my thirty-eight years, just scared and trapped and wondering why she can’t go home. At other times she has sounded paranoid and delusional, and at other times she has simply sounded completely apathetic, sedated to the point of barely being able to mumble. But every single time I have talked to her, she has been able to say, “I love you,” and to ask me for help. And even if she wasn’t asking for help, I would be doing everything in my power to help her, because she is my mother and I love her.
Thank you sincerely,
David Vincent Gagne
I repeatedly called the “day room” at the Halifax Hospital Psychiatric Unit, but the line was busy. Then I called the “main line” and Julie answered the phone. I talked to her for about ten minutes. She told me that Dr. Caliendo is very well-respected and she really likes him. She also told me that there are five total psychiatrists on staff on the unit.
I called the “day room” about five minutes later, but the line was still busy. So I called Julie again and she transferred me to the “med room”. A tech who answered the phone there told me he had no idea when the phones in the “day room” were supposed to be “activated”.
I called the “day room” at 11:45 AM PST and a crazy woman answered the phone. She said that mom was asleep and she yelled at me for bothering them.
At 12:35 PM PST I called again and managed to get mom on the phone. It was a very depressing call. She said that she didn’t trust me, that she can’t trust anyone, and that she doesn’t remember me. She said she doesn’t remember us living in Holly Hill or Daytona, but then a minute later she said she did. (Although she may have only said that she remembered because she was scared. I couldn’t tell.)
Nurse Patty from the Halifax Hospital Psychiatric Unit called me. She said mom was waiting by the phone, but very restless and anxious today. She switched me to the line for the phone next to mom.
Mom answered the phone. We talked for about ten minutes.
Mom was very sad. She said she thinks that I’m lying to her, and that she can no longer trust me. She’s afraid I’m going to leave her there forever, she said. She repeated several times that she doesn’t believe me any more.
It was a very, very rough call. She’s just paranoid, scared, and sad.
I called to try to talk to mom, but was told that she was asleep. It’s so disappointing to not get to talk to her on a regular basis.
I talked to my mom pretty much every single day for the first 38 1/2 years of my life. To suddenly go for days and days at a time without getting to hear her voice is just terrible. I really, really miss her.