I sent this email to Connie Wade:
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 firstname.lastname@example.org email address you provided me when we first spoke on Friday, January 20, 2012 and to the email@example.com 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