Kathie Gagne died 4,642 days ago.

Social Security Disability Benefits
December 29th, 2011 @ 12:52 pm

I asked my sister if she would do some research into applying for government assistance — e.g. Medicaid, Social Security — for mom. She sent me this email just before the end of the year:

 
 
CT-Scans and lease
December 23rd, 2011 @ 1:40 pm

My sister sent me this email:

What Dr. Fulop‘s assistant, Helen, told me is that they saw the results of a CT-Scan that had been done at Halifax Medical by Dr. Lopez on Dec 14, 2009 and that Dr. Shoemaker received a copy, as well. She said that Dr. Fulop would be happy to look at the CT-Scans themselves if we can get the cds to her. She has only seen the results and would like to see the scans themselves and the results. If we can get both CT-Scans, we can have them sent to:
ATTN: Helen
8 Mirror Lake Dr
Suite A
Ormond Beach, FL 32174

I called and left a message with Dr. Shoemaker’s assistant because I am pretty sure I have been authorized to speak with them about Mom’s information.

Dr. Fulop: (386) 673-2500
Dr. Shoemaker: (386) 677-0453

I also spoke with Jessica at the Park at Countryside because I was not sure if you had, and I talked to her about paying January’s rent and moving her things then. She has emailed me the forms to release us from the lease, but we need Dr. Caliendo or Sophia to send a letter stating Mom’s inability to live there anymore. Can you request that from them and have them send it to them at [redacted], or fax it to them at (386) 756-2891? Jessica said she would ask around for homes for the pets too. We have to get that to them so they have a 30 day notice.

I replied to her a few minutes later (at 1:46 PM PDT) with:

I don’t want to move too quickly on this, [name redacted]. We aren’t yet 100% certain that you and / or I will be able to get to Florida and find her a new place and pack everything in her apartment and have it relocated by the end of January. I am not overly concerned about mom paying for February’s rent, is what I mean. I don’t want to cancel her lease and then have to worry about being rushed, you know what I mean?

Holiday Schedule
December 23rd, 2011 @ 6:58 am

Just before the holidays I emailed Sophia Mas at Stewart-Marchman Act to ask about how I would be able to talk to my mom on Christmas:

Dear Sophia,

Thank you so much for all your help with my mom these last few weeks. We do sincerely appreciate it, and I hope you know that.

Is there anything special that we should know about the holiday schedule at Stewart Marchman ACT? Will the facility be staffed as usual? Do you do anything to celebrate with the residents at all?

Can you also please confirm Rodney‘s email address so that I can contact him easily when he returns from vacation? Or, if you know that Rodney does not regularly use email, can you let me know that so I will know to primarily try to connect with him by telephone instead?

Thank you very much,
Merry Christmas,

David Vincent Gagne

Not About Money
December 22nd, 2011 @ 2:49 pm

My mom’s friend from church called me and left me the following voice mail:

Hey, David. It’s [name redacted] on Thursday evening, about ten to six. Wanted to see how you were holding up. I know the beginning was just really rough. Wanted to talk to you about future plans for your mom and whatnot. And I also wanted to let you know I was chatting with one of the nurses in our church and she really didn’t want you to think that … This is not about money. Money would not have prevented this happening. Just be relieved in that. And I’ll talk to you later. Bye.

Likely Mistaken
December 21st, 2011 @ 11:36 am

I sent this email to Sophia Mas at Stewart-Marchman a day after a very long and difficult phone call with her and Dr. Caliendo.

Dr. Caliendo was only on the phone for a few minutes and then Sophia called us and explained in detail what he had been saying. It wasn’t until many, many months later that we learned that almost everything she told us was apparently grossly incorrect.

Sophia,

Thank you very much for calling yesterday after our conference call to further explain the results of my mother’s CT scan.

I think that many of our conversations over the last three weeks, and our approach to all of this, would have been dramatically different if we had known that my mother had had a stroke (or multiple strokes).

Yesterday both you and Dr. Caliendo indicated that the CT scan to which you were referring was performed on December 1. Do you know why it took almost three full weeks for someone to explain to us the results? My sister and I — and others — have been overwhelmed with grief and confusion for almost a month now because of my mother’s sudden negative change in personality and cognitive function. Because nobody explained the findings of the CT scan to us, we have (likely mistakenly) assumed that my mother’s condition was psychological and — hopefully — temporary, or at the very least something which could be in some way managed with some combination of therapy and drugs.

To learn that we were so terribly misinformed has been heartbreaking and difficult. I’m just trying to understand why nobody told us anything weeks ago. 1

Thank you,

David Vincent Gagne


1 As of July 28, 2012 and even after repeated attempts, I still have not been given any explanation at all of why it took them three fucking weeks to tell us all this. And I still have not had anyone explain how they could have been so dramatically wrong about it all. A half dozen doctors have all analyzed my mother’s brain in the months since then and they have all told me that there are no signs of her ever having experienced a stroke and there is no evidence at all of brain damage. The most likely answer is that Dr. Caliendo and / or Sophia Mas were looking at the wrong chart during this conversation, which is a mistake that multiple people at Stewart-Marchman did multiple times during mom’s stay there.

One of the Worst Calls
December 20th, 2011 @ 12:15 pm

Today I managed to actually talk to Dr. Caliendo for about twenty minutes. My sister and I had a conference call with him and Sophia Mas from Stewart-Marchman ACT. Mom was in the room with them at the beginning of the call. Pay close attention to the footnotes I’ve added below.

Here are my notes from the call:

1215
Mom in Dr. Caliendo’s office @ SMA w/ Sophia Mas;
[my sister] conferenced on call by me 1
Mom said she was excited to see [my son]
Sophia said mom misunderstood the cards I was sending, then took mom out of the room
Dr. Caliendo says mom displaying basic confusion, significant cognitive problems, but that she’s cooperative, says she is “developing dementia”
said mom is not competent to live alone
said mom “speaks in approximations”, such as that [my son] lives “with people out in California
Judy the nurse said mom is forgetful and nervous, and that she asked for a job application 2
Sophia said mom thought it was 2005, and she didn’t know what month it was, even though there is a Christmas tree in the lobby and I keep sending her Christmas cards; she doesn’t know where she is
Judy the nurse said that mom is not paying attention to her own hygiene, isn’t showering, repeating that mom doesn’t know where she is
Sophia said mom needs to be reminded to eat, and that she gave mom a journal because mom asked for it, said she loves to write
Sophia said she tried to read mom’s journal entries, but they are confusing and rambling
Dr. Caliendo said he knows this is difficult, said mom should be on the west coast
said mom needs to be in a group home with no way to leave
(I asked Dr. Caliendo for his diagnosis and he simply said, “Dementia,” which led to previous comments)
[my sister] asked about a potential tumor, but Dr. Caliendo did not respond (he may simply have not heard her)
Sophia said mom has not asked about her pets since the middle of last week
[my sister] said mom seemed paranoid when she visited; Sophia said she was confused and fearful but not really paranoid
I asked about recovery.
Dr. Caliendo said “recovery” was a “tough term” because dementia is incurable
He said giving mom drugs “may help”; said having family nearby helps alleviate symptoms
Sophia talking about this experience as a “journey”
Sophia said mom says she has memory loss but not dementia 3
Dr. Caliendo said Rodney is on vacation this week, but that I need to talk to Rodney about placement
Dr. Caliendo said he’d mail me a brochure 4
[my sister] said mom received $1100/mo from Social Security
Dr. Caliendo said I need to search for group homes, and that he’d send a pamphlet
Rodney returns on 27th
Dr. Caliendo said dementia is a horrible disease
We scheduled a call w/Sophia

— end 5

called [my sister]; we were talking about how much this sucks, when Sophia called again
I joined the calls so all three of us were talking

1245pm
Sophia said she wants to fax info about homes to [my sister]
Sophia said the results of the CT scan showed “loss of brain matter”, and a “stroke”
Sophia started reading directly from mom’s chart
“preliminary report, no evidence of intracranial …”
“old lacunar infarct of left thalamus”
CT scan performed on 12/01
“periventricular white matter hypodensities suggestive of chronic small vessel ischemia; CFF spaces prominent, consistent with volume loss, hyperostosis frontalis interna identified”
“prominent arthresclerotic calcification” 6

Anna, the Team 2 nurse, said mom is always crying and very anxious


1 Sophia asked me to call my sister from my iPhone because they did not have the ability to make a conference call from their office.
2 Knowing my mom as well as I do, I would guess she was being sarcastic with them. But I can’t blame anyone there for not recognizing mom’s dry humor.
3 That’s what I kept trying to explain to people, too. Nobody ever seemed to care or think there was a difference.
4 Dr. Caliendo, of course, never mailed me jack shit. Sophia at one point mailed me a 50+ page batch of photocopied lists of assisted living facilities in Florida which was completely useless.
5 The conference call ended at this point.
6 It is very important to note that multiple doctors analyzed multiple MRI results and CT scans in the months to follow and I was repeatedly told that my mother’s brain was physically fine and they could find no evidence of any trauma or a stroke at all. And on multiple occasions while my mother was at Stewart-Marchman ACT, people there gave me horribly misleading information because they were looking at the wrong person’s chart. I have documented on this website at least three times when someone there told me something which scared the hell out of me and then later we learned that he or she was viewing someone else’s chart and not my mom’s. So there is a very good chance that all of these details were not from my mom’s chart.

An Email from Sophia Mas
December 19th, 2011 @ 12:36 pm

I received this email from Sophia Mas at Stewart-Marchman:

David & [name redacted] 1

Dr. Caliendo will be available between 2:00-2:30 to 3:00-3:30 pm our time – I can call you around that time to give you the phone# you need to call & we’ll be ready – I am afraid I do not have the capacity to get you both at the same time, I believe you do so it will be best that you call w/[name redacted] and we can all discuss your mother’s condition.

We’ll talk tomorrow

Sophia

I replied to her (and copied my sister) at 12:42 PM PST:

Dear Sophia,

Yes, that is fine. Call my number — [redacted] — and I will handle conferencing my sister onto the call.


1 I’ve removed my sister’s name, but feel it is important to note that Sophia again spelled it incorrectly — even though by this point she has seen it spelled correctly at least a dozen times — and she didn’t spell it the same way she spelled it incorrectly in the previous email.

Trying to Schedule a Call
December 19th, 2011 @ 8:58 am

I sent this email to Sophia Mas at Stewart-Marchman and copied my sister:

Hi Sophia,

I spoke to my sister, [name redacted], this weekend about having a conference call with Dr. Caliendo. We would both like to be on the call, and we would both very much like to hear what Dr. Caliendo thinks about our mom’s condition.

Can we schedule a call for Tuesday, December 20? Please let us know what time works for both you and Dr. Caliendo and we will both be prepared.

Thanks in advance,

David Vincent Gagne

A Call from a Friend
December 16th, 2011 @ 10:03 am

My mom’s friend from her church called me. I couldn’t get to the phone, but here is a transcript of the message she left me:

“David, it’s [name redacted]. About one o’clock Eastern standard time. I’m on my way out to Stewart[-Marchman] to bring your mother some of her clothes, like, y’know underwear and undergarments, and her own clothes, hoping that will make her feel a little bit better and I just … It was really hard to visit her the other night. She seems to be very much over-medicated. She seemed very out of it. I mean, very out of it. If you could talk to her doctors about adjusting her dosage or whatever they have her on, she’s like, almost zombie-like, it was just … not a good thing to see. It was very heartbreaking. I couldn’t get her to look up. She stared at the floor the entire time I visited her. She talked to me but she talked to the floor. It was really difficult. I’ll talk to you later. […] I’m going out there now to take her some clothes. […] Talk to you later. Bye.”

RE: Kathleen Gagne
December 15th, 2011 @ 1:59 pm

I received a copy of the following email from Sophia Mas at Stewart-Marchman, which was sent to my sister:

[name redacted], 1

I sensed today’s call was very difficult for you – I encourage you to reach out to your familuy, Church & friends for support – This is a difficult time and we will do our best to help & direct your Mom towards a safe/approriate discharge – Let me know on Monday when & what time you & David can call so Dr. Caliendo can be available – Dr. Caliendo usually gets here by 1pm (eastern standard time) however sometimes gets here ealier or later – 2

This is the website that I hope can give you some information regarding your mother’s journey – http://washingtoneldercare.org/ 3

Take care of yourself

Sophia X. Mas, M.A. LMHC
Pinegrove/CSU
1150 Red John Drive
Daytona Beach, FL 32124
386-236-3260
smas@smabehavioral.org


1 I’ve removed my sister’s name, but I feel it is important to note that Sophia typed it incorrectly.
2 It’s good to know he’s consistent.
3 As far as I can tell, there was absolutely no worthwhile information at that website.