Kathleen A. Gagne

Kathie Gagne died 4,703 days ago.

February 24th, 2012 @ 7:49 am

Delia McClain, a Medicaid Client Services Specialist with ElderSource, replied to my email from yesterday with this message:

The Dementia program is called Alzheimer's Disease Initiative (ADI). Also, please contact Tallahassee to request the representative for the county in which your mother resides in to address funding. The Department of Elder Affairs in Tallahassee phone # is 850-414-2000.

Good morning Mr. Gagne,

During our previous discussion, you also informed me that your mother had been diagnose with Dementia. I'd advised you that there is a program for clients with Dementia that I would add her name to in addition to the Assisted Living Facility Waiver wait lists. The phone screening you completed with me, resulted to placing your mother on the appropriate wait list, therefore, you have done what was needed to ensure that.

Medicaid is a state and federal health program which provides coverage for people with lower incomes, the elderly and people with disabilities-who Eldersource serves, and some families and children. Anyone can apply for Medicaid. Eldersource can also assist the people we serve apply for Medicaid, among other programs. Medicaid isn't a universal term for assorted programs/wait lists, however, there are different programs under Medicaid. A Medicaid program we manage/fund here at Elersource is Medicaid Waiver. Services under the Medicaid Waiver program can be rec'd in a client's home or in an assisted living facility (ALF)-which your mother is currently on the wait list for. Eldersource will assist you to process your mother for the ALF program when her name comes up.

Hope I've answer your questions. You can find more about Eldersource at our website @ myeldersource.org.

Thank you,
Delia

Another Synopsis

February 23rd, 2012 @ 10:50 pm

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
To: [redacted]
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.

[redacted]

David Vincent Gagne

Following Up

February 23rd, 2012 @ 5:55 pm

I sent an email to Delia to follow up on her last message to me, in which she promised to talk to her supervisor and contact me:

From: Gagne, David
To: McClain, Delia <Delia McClainD@elderaffairs.org>
Subject: Re: Status Update
Sent: February 23, 2012 5:55 PM PT

Dear Delia,

Last week you advised that you were going to speak with your supervisor about funding allocation. I’m just writing to ask if you were ever able to do that and, if so, if there was any news.

I’d also be very appreciative if you could tell me specifically the names of the two programs for which you have added my mother to the waiting list. You previously told me, “A Medicaid program we manage/fund here at Eldersource is Medicaid Waiver.” Is there a specific name for that program? And you also said that she was on a special waiting list for individuals with dementia. Can you tell me the name of that program as well?

Thank you sincerely,

David Vincent Gagne

An Email from My Sister

February 17th, 2012 @ 12:55 pm

I received the following email from my sister today:

David,

I met Connie & Marilyn today. Marilyn thinks that where Mom is at now is what her baseline is going to be. Neither of them seems to think Mom is going to improve, and that at best we can improve her environment. Connie was saying that with some dementia patients they can have moments where they seem to have no problems and then a moment later show symptoms. She did not understand why you were asking her why this or that was not done at Stewart-Marchman. Marilyn was saying that Mom is not very talkative except when she is getting anxious, at which point the only thing they can offer is “supportive” therapy, basically telling Mom it is going to be ok versus another type of therapy where they would try to dig deeper into the root of the problem. I was sitting there torn between whether I did not care for what they had to say because it was sounding hopeless or because it sounded like psycho-mumbo-jumbo talk. Either way, it still came back to her needing to be out of there. They mentioned a couple of places they said to look at, Shady Oaks Rest Home (I hate the idea of anything called a “rest home”) and Garden Manor. Then as they were talking mentioned Lakewood again, saying that Maria might be willing to take Mom knowing she is on the Medicaid waiver list.

Don’t bother asking either of them about meds; you have to ask Mom’s nurse for the day. Mom’s nurse today, Dan, gave me the following information:

She has been on these pyschotropics:

HALDOL 2mg/2x/day since 2/6/12
NAMENDA 5mg/2x/day since 1/25/12
ZYPREXA 5mg at bedtime since 2/6/12
ARICEPT 10mg in the morning since 1/26/12

and these others:

BENADRYL 2x/day
LOPRESSOR 25mg/2x/day
PRENAVIL 10mg/2x/day
HCT2 12.5mg in the morning

Meds are usually given between 8am-9am and at 9pm.

I am sorry I don’t have more details about the conversation with Connie and Marilyn. That is pretty much the gist of it. I wish I were better at remembering all this. I am trying.

I called St. Paul’s and left a message. They called me back, and the first place their minister to the sick suggested was Indigo Manor, where Nana was dropped. Part of their recommendation was based on the food. Um, no. They also mentioned another place Nana lived, Forest Lake. I am not sure if she understood the question regarding looking for places financially feasible, and she was apparently limiting the search to Daytona. I can call her back if you would like, but I do not know if that is worth it. […]

A Response

February 17th, 2012 @ 8:48 am

Delia McClain, the Medicaid Client Services Specialist with ElderSource, responded to my plea for help with this email:

Good morning Mr. Gagne,
 
I am very sorry to say that at this time, nothing has changed regarding your mother's status since we'd last communicated. Also, there is no new information for the Dementia program. If/when her case status changes/needs updating, you will be contacted by the Volusia Council on Aging/Eldersource.
 
Thank you, 
Delia                
 

 
Delia McClain, CIRS
Medicaid Client Services Specialist
ElderSource
NE FL AAA and ARC - PSA4
4160 Woodcock Drive, 2nd Floor
Jacksonville, Fl 32207
Direct: 904-391-6655
Fax: 904-391-6693
mcclaind@elderaffairs.org

 
 
Mission:  To empower individuals to age with independence and dignity by providing leadership, direction, advocacy, and support for a comprehensive coordinated continuum of care.

Note: This email and any attachments are confidential and may be
privileged. Unauthorized access or dissemination of this information may
be a violation of criminal statutes. If you are not the intended
recipient, please notify ElderSource by
replying to this message or by sending an email to aaanef@covad.net and
destroying all copies of this message and any attachments.  Thank you.

I replied to her about ten minutes later with:

Delia,

Thank you very much for your response.  Is there anything at all that I can do to expedite this process?  I am happy to telephone or write an email or letter to any administrative official or politician who has influence over the allocation of funds.

Thank you sincerely,

David Vincent Gagne

And then three hours after that she replied with:

Mr. Gagne,
 
There is nothing that I can think of at this time that can you can do to expedite this process, however, please allow me to speak with my supervisor on next Tuesday and follow up with you about anything else and who to contact regarding funding allocation.
 
Thank you, 
Delia

Kathleen A. Gagne (personal articles)

February 17th, 2012 @ 8:31 am

My sister asked me to send this email to Connie Wade ¹ at Halifax because apparently they were giving her a hard time about returning my mother’s personal items to her. ² It is a fine example of their strict policy regarding the arbitrary enforcement of their other policies. ³

Dear Connie,

This message is in regards to:
KATHLEEN ANNE GAGNE, aka “KATHIE” GAGNE, maiden name: [redacted]
DOB: 09/22/1948, SS#: [redacted]

Please consider this email as written confirmation of my approval to allow my sister, [redacted], to take possession of my mother’s personal articles currently being stored by Halifax.

I know when she was admitted she had on her person her wallet and some jewelry. My sister was informed that as her Guardian Advocate it is my responsibility to inform Halifax of this before they can be released to her.

Thank you sincerely,

¹ I sent the email to both Constance.Wade@halifax.org and to conniewade@halifax.org because I am still unclear which one is correct.
² She never did respond.
³ They draw a hard line in the sand about returning a pair of eyeglasses, but they will change her medication without asking me? How does that make sense?

Kathleen A. Gagne (medications)

February 17th, 2012 @ 8:28 am

I sent this email to Constance Wade ¹ in an effort ² to get an updated list of which medications were being given to my mother:

Dear Connie,

This message is in regards to:
KATHLEEN ANNE GAGNE, aka “KATHIE” GAGNE, maiden name: [redacted]
DOB: 09/22/1948, SS#: [redacted]

Can I please acquire a copy of my mother’s chart and / or a list detailing the medications / prescriptions she’s been administered for the last three or four days?

I’d like to know exactly which medications she’s received, the frequency, and the dosages.

If you are not the correct person to fulfill this request, can you please provide me with the contact information for the person who can?

Thank you sincerely,

¹ I sent the email to both Constance.Wade@halifax.org and to conniewade@halifax.org because I am still unclear which one is correct.
² She never did respond.

Disheartening

February 15th, 2012 @ 5:12 pm

I called mom and was able to get her on the phone for a few minutes. It took me just shy of fifteen minutes of being on hold before someone finally got a phone into mom’s hands.

[My sister] had just left. Mom only talked to me for a minute or two. She was very sad. She didn’t seem excited or relieved or to even really acknowledge that my sister was there. She just wants to get out of the hospital. She just kept repeating that she wants to go home. It was a very tough call.

A Plea for Help

February 15th, 2012 @ 11:55 am

I sent this email to Delia McClain, a Medicaid Client Services Specialist with ElderSource:

Hello Delia,

I’m writing to see if I can get a status update on my mother’s case. You had mentioned that — in addition to the waiting list for an assisted living facility assistance waiver — you were going to add my mother to a waiting list specifically targeted at individuals with dementia.

I am just wondering if any new information is available.

It has been three months now that my mother has been living in very poorly-funded, decrepit, state-run mental institutions receiving no rehabilitative care at all (and only marginal medical care). With every day that passes I am increasingly desperate to get her into a decent facility. I know that she is scared to death every second she spends where she is now and that is undoubtedly contributing to her (possibly justified) paranoia and (likely) making her deteriorated mental state even worse.

Please let me know if there is anything I need to do or can do to help my mother.

Sincerely,

David Vincent Gagne

Halifax Hospital Psychiatric Unit

February 15th, 2012 @ 9:41 am

My sister visited my mom twice today at the Halifax Hospital Psychiatric Unit. She called me at 9:41 AM and we talked for eight minutes and then she called me again at 5:28 PM and we talked for eighteen minutes.

Here are the notes I logged for the calls:

[My sister] called me after visiting mom at 11AM (ET) and 6PM (ET).
She said bathrooms are filthy, day room is very small and overcrowded; said mom looks just like Nana, and that she’s aged 30 years; said mom won’t make eye contact; mom said she was raped the previous night, and that the people there are bad; was able to identify an Uno card as yellow one time; [my sister] said drawer in bedside table where she keeps cards from me is broken and facilities are “old”, psych center is in an old part of hospital
[my sister] crying and scared