Kathie Gagne died 4,704 days ago.

Too Many Drugs
March 6th, 2012 @ 12:20 am

Here is an email I sent to Janis Stovall at Grace Manor Port Orange:

Dear Ms. Stovall,

I received the email below from a friend of a friend who works as a consultant with veterans dealing with PTSD. 1 It’s interesting because she seemed to have a lot of information about the medications mom is being administered. The side effects of the Zyprexa are bothersome because she has been close to catatonic for weeks and weeks now. Her doctor, Dr. Caliendo, and two different “social workers” have told me that they’re giving her the Zyprexa because they “think” that it “might” help to minimize dementia, but they sound like they’re simply giving it to her because it’s just something to do (or — more likely — some pharmaceutical reps are pushing it), because nobody has ever told me anything about Parkinson’s-like symptoms.

Finding out exactly what neuropsych testing has been done since she was admitted to Halifax was high on my list of priorities for our conference on Friday, March 2, 2012 at 8:30am ET. I have yet to be given a definitive answer to this question, even though I have asked several times.

Thanks,

David Vincent Gagne
http://www.davidgagne.net/
http://twitter.com/davidgagne

Begin forwarded message:

1) If Ms. Gagne has been awarded $$ from Social Security as “SSDI” (Social Security Disability Insurance) then she should also be receiving Medicare. They pretty much go together, but there may be an application process that has not been done yet. As court-appointed guardian, David should be able to investigate this. It may also help to ask the social worker, even though she may have already dropped the ball on the Medicaid waiting list.

2) It looks like Ms. Gagne is on a combination of meds for psych (Haldol and Zyprexa) as well as for dementia (Aricept). The Haldol I would be seriously concerned about, as it is a very old antipsychotic medication, and has debilitating side effects, including Parkinsonian symptoms. The Zyprexa is a “new generation” antipsychotic med, and not sure why they are using both at the same time, unless the Zyprexa is intended to counter the Parkinsonian effects, which is possible. Zyprexa has side effects, too, like weight gain and sleepiness, but is not known to cause the Parkinsonian stuff, and can even reverse it to some degree. As far as the Aricept, that is typical for dementia/Alzheimer’s patients. I’m not aware of indications for using it in conjunction with psych meds, but that could be routine.

3) I would be curious if they have done any new neuropsych testing since she went to Halifax? If they are indeed trying to determine any medical cause, that could help.

4) The Mayo Clinic is in Jacksonville, not far away. They have a stellar reputation in just about every area of care….maybe an evaluation option for Ms. Gagne?

5) Suggested resources:
http://www.dcmsonline.org/jax-medicine/2000journals/February2000/guide.htm
http://www.assistedlivingsource.com/memory-care/florida/
http://www.medicare.gov/longtermcare/static/communityservices.asp

1 Post Traumatic Stress Disorder

Timeline
March 6th, 2012 @ 12:17 am

I sent the following email to Janis Stovall <janis.stovall@gracemanorportorange.com> at Grace Manor Port Orange:

Dear Ms. Stovall,

Here is a summary of the details I have. I’ve included a very basic timeline at the end. I have taken extensive notes during every phone call I’ve had with anyone regarding my mother — every nurse, doctor, social worker, etc. — since she was admitted to Stewart-Marchman Act at the beginning of December 2011, so there are a million more details I can provide. (I have called and talked to someone, anyone — a nurse or social worker or someone working for the state of Florida ElderSource program — at least twice every day for three months now, so there are a lot of notes.) But this basic outline should provide enough information for anyone to understand the current situation.

Thank you,
David

——————————————————
(1) Personal Information
——————————————————

Full Name: KATHLEEN ANNE GAGNE
Also Known As: “KATHIE” GAGNE
Maiden Name: [redacted]
DOB: 09/22/1948
SS#: [redacted]

——————————————————
(2) Current Contact Information
——————————————————

Halifax Psychiatric Center, Unit 2500
303 N CLYDE MORRIS BLVD
DAYTONA BEACH FL 32114
(386) 254-4080

——————————————————
(3) Medication
——————————————————

Here are, to the best of my knowledge, the drugs my mother is currently being administered:

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

I know that some of these drugs are prescribed for high blood pressure.

——————————————————
(4) Doctors and Contacts
——————————————————

Dr. Stephen Oh; psychiatrist – (386) 258-6455
Dr. Dahila Fulop; psychologist – Neurology Associates – (386) 673-2500
Dr. Dannie Buck; internist – (386) 676-0505
Dr. Shoemaker; long-time family doctor – (386) 677-0453
Dr. Caliendo; Halifax Psychiatric Center AND Stewart-Marchman Act – (386) 254-4080
Constance Wade, Social Worker; Halifax Psychiatric Center AND Stewart-Marchman Act – (386) 254-4080
Sophia Mas, Social Worker; Stewart-Marchman Act – (386) 236-3260
Rodney Curtis, discharge coordinator; Stewart-Marchman Act – (386) 236-1729
Delia Mcclain; ElderSource – (904) 391-6600

——————————————————
(5) Financial Information
——————————————————

My mother currently receives $1104.00/mo from Social Security, on or about the fourth Wednesday of the month.
She has been receiving these funds since November 24, 2010.
She has no health insurance or savings account. Her checking account contains less than $100.00.
She has approximately $10,500.00 in a state of Florida pension fund from the time she spent in the early 2000s working for AmeriCorps, where she managed all of north central Florida for years. My sister and I are not really sure how to access this, and there is some question regarding the tax penalties for withdrawing money from it before she turns 65.

——————————————————
(6) Timeline
——————————————————

Here is a timeline of significant events to date:

05/04/2007 – My maternal grandmother died from complications during emergency surgery because she was dropped on the floor by a nurse at Indigo Manor assisted living facility in Port Orange, FL; the nurse “covered up” the accident and for three days my grandmother was in tremendous pain until finally someone realized she had a broken femur that had become infected; My mother has since been (understandably) terrified of being placed in a nursing home.

07/31/2008 – Mom lost her job at AmeriCorps when her position was eliminated (layoffs)

03/2009 – Indigo Manor settled my mother’s lawsuit against them out of court; she and my uncle each received a minimal amount of money

10/2009 – Mom was in a pretty serious car accident when she mistakenly made a left-turn into oncoming traffic

12/14/2009 – administered CT-Scan and electrocardiogram at Halifax Hospital in Daytona Beach, FL; was told that there is nothing at all wrong with her brain

01/20/2010 – the last date I received an email from my mother; she discussed attempting to find free psychiatric counseling because she was scared and nervous about her mental state; from this date forward she seemed to completely forget how to use any electronic devices at all

07/02/2010 – moved into The Park apartment complex

08/22/2010 – my son [name redacted] was born

11/01/2010 – my sister wrote a letter explaining that my mom was exhibiting short-term memory loss and difficulty executing daily, routine activities

11/09/2010 – Mom and my sister flew to Los Angeles to visit and meet [name redacted]

11/24/2010 – Mom began receiving $1104.00/mo from Social Security

06/01/2011 – Neurologist Dr. Fulop prescribed 40mg of Citalopram daily; said he wanted to do neuro-cognitive tests to discover extent of dementia

08/18/2011 – Psychiatrist Dr. Oh stated that mom seems markedly less depressed and noted a definite improvement in her cognitive abilities

12/01/2011 – found wandering lost in the apartment complex parking lot; administered CT-Scan at unidentified hospital in Deland, FL; admitted to Stewart-Marchman Act http://smabehavioral.org/

12/??/2011 – first Baker Act hearing

12/08/2011 – requested to speak with Dr. Caliendo; was told he would contact me when he could

12/20/2011 – conference call with Dr. Caliendo and Sophia Mas, social worker at Stewart-Marchman Act; Dr. Caliendo told me that mom has incurable dementia; asked for specific diagnosis and was told “dementia”; Sophia Mas called to say that CT-Scan from 12/01/2011 revealed an “old lacunar infarct of the left thalamus” and “periventricular white matter hypodensities” that were “suggestive of chronic small vessel ischemia”

01/05/2012 – Dr. Caliendo returned from vacation

01/05/2012 – Sophia Mas called to tell me that it was time for mom to “go somewhere else” because there was nothing more they could do for her at Stewart-Marchman Act and they were being pressured by their administration to get her out of there; Sophia Mas told me specifically that she had done all the work necessary to have mom added to the appropriate waiting lists for supplemental Medicaid assistance

01/12/2012 – was informed that Dr. Caliendo agreed to slowly stop administration of Risperdal

01/18/2012 – administration of Risperdal ended

01/19/2012 – Sophia Mas emailed me to apologize and admit that she had NOT done the work necessary to have mom added to Medicaid waiting lists.

01/19/2012 – Rodney Curtis, discharge coordinator at Stewart-Marchman Act, called to say that mom’s condition deteriorated dramatically between 01/16 and 01/19; that she was no longer bathing or dressing herself and not “maintaining hygiene” and that they were transferring her to “Halifax Hospital Geriatric Ward” because no assisted living facility will take her because she can’t bathe or dress herself, and no nursing home will take her because she has no insurance
Rodney asked why she wasn’t receiving Social Security, and I informed him that she was, in fact, receiving Social Security.

01/19/2012 – admitted to Halifax Psychiatric Center in Daytona Beach, FL

01/20/2012 – administered MRI / EEG at Halifax Hospital in Daytona Beach, FL; began taking 150mg Wellbutrin once each morning (I was not consulted or informed of this.)

01/20/2012 – first conversation with Constance Wade, social worker at Halifax Psychiatric Center

01/20/2012 – ElderSource in Jacksonville added mom to “assisted living facility waiver” waiting list

01/25/2012 – administration of Wellbutrin ended; was told for the first time that I am the court-appointed Guardian Advocate of my mother

01/26/2012 – another Baker Act hearing

01/30/2012 – third phone call with Dr. Caliendo, who told me he was responsible for having mom transferred from Stewart-Marchman Act to Halifax Psychiatric in order to rule out potential medical reasons for her dementia

01/30/2012 – received Guardian Advocate forms via USPS

02/01/2012 – returned Guardian Advocate forms via USPS

02/14/2012 – [name redacted], my little sister, arrived in Florida

03/02/2012 – Conference call with Dr. Caliendo, Connie and Marilyn, Chuck (administrator at Halifax Psychiatric); first time I was informed that my mom’s condition has been considered stable enough for her to leave the hospital for at least two weeks

Unbelievable
March 5th, 2012 @ 2:49 pm

Janis Stovall told me she visited with my mother, and that my mother repeatedly asked her for a cigarette. I tried to explain to her that that was impossible, because my mother hated smoking, but she was adamant. I decided to email her a photo of my mom so she could tell me if she was interviewing the right person. I sent her this photo in an email with the subject line “mom.10.26.11.0923”:

Kathleen Gagne

My sister took this photo of mom showing off the new phone I had gotten her.

Janis emailed me this reply at 3:09 PM:

She looks really good in this pic.

She didn’t indicate whether my mom was, in fact, the person she had seen who was asking her for a cigarette! I replied at 3:18 PM to say:

Yes, and that photo was taken on October 26th, 2011 … only about 4 months ago.

Janis replied to me at 7:43 AM on March 6th, the next morning. She wrote:

Unbelievable…. I am on my way to see her at 11:00 today and meeting a family member there.

I replied to her at 8:24 AM and said:

By “a family member” I assume you mean my little sister.

Did you receive the four or five emails I sent you last night detailing some of my mother’s history? I am really hoping you get a chance to review those prior to visiting her today.

Please do call me as soon as you can after meeting with my mom today. I’m very much interested in your opinion of the situation and to discover what happened the last time you visited. My sister said that the woman with whom my mother shares a bedroom is a smoker and thinks possibly this other woman was the one who was begging you for a cigarette. (I just find it very hard to believe my mother would have been asking to smoke; I suppose that could have been the dementia talking.)

Thank you sincerely,
dvg

Grace Manor
March 5th, 2012 @ 2:05 pm

Grace Manor Port OrangeI had a fifty-eight minute phone call with Jessica Butler and Janice Stovall 1 at Grace Manor Port Orange. Jessica told me that both Marilyn and Connie Wade from the Halifax Hospital Psychiatric Unit had called her and told her that mom could be discharged tomorrow (March 6, 2012). 2 Jessica said that Janice Stovall is her director at Grace Manor, which is on Dunlawton in Port Orange, and that they have both visited my mother at Halifax and think she would do well at their facility. (Jessica also said that Marilyn had called Ms. Stovall on Friday, March 2nd.)

At this point Jessica handed the phone to Janice and we spoke for the rest of the call. Here are the notes I took:

  • said they have Skype, etc. & “senior computers”
  • she’s from Tennessee, been living in Florida for 5 years
  • was previously at Windsor in Palm Coast; had 54 beds there
  • security cameras, motion sensors
  • Harry in admissions 3 showed her to “mom” 4
  • EverCare, Tango, American Elder Care 5
  • Dept. of Children & Families – State of Florida
  • one side assisted, one side dementia / memory care
  • $2895 – $3495 / mo vs. $3895

1 I learned later that her name is spelled Janis.
2 She wouldn’t actually be discharged until the 13th.
3 at Halifax
4 I put this in quotes even in my notes because I did not believe she had really been introduced to my mother at Halifax; Janis told me that mom kept pestering her for a cigarette and to take her outside to smoke, and she wanted me to know that smoking was not allowed at Grace Manor. I explained repeatedly that there was no way she had been talking to my mother, because mom hates smoking. I was right, of course.
5 These are the different state insurance companies — if I understood her correctly — that deal with nursing homes and assisted living in Florida.

Still No Fax
March 2nd, 2012 @ 11:45 am

Halifax HealthI called and left a voice message for Marilyn at the Halifax Hospital Psychiatric Unit at 386-254-4080 because it had been five and a quarter hours since I was told they’d get the records to me, “right away,” and I still hadn’t received a fax.

Finally at 1:50 PM (Pacific) I received a twenty-seven page fax from Marilyn.

By this date, mom had been at the Halifax Hospital Psychiatric Unit for at least forty-two days. It was laughable, insulting, and obvious that the twenty-seven pages I was faxed did not comprise all of her medical records even for this most recent stay at Halifax.

Fax Confirmation
March 2nd, 2012 @ 6:30 am

I called Marilyn in the Halifax Hospital Psychiatric Unit at 386-254-4080 to confirm that she had a valid fax number for me. It’s 2012 and not 1989, of course, so I don’t have a fax machine at my house. I had to give her my office fax number. She told me she’d make sure to fax my mom’s medical records to me as soon as possible.

A Terrible Conference Call
March 2nd, 2012 @ 5:40 am

Halifax HealthMy sister and I had a forty-three minute conference call with doctors, nurses, discharge coordinators, and administrators at Halifax Hospital. Dr. Caliendo talked to me as if I was a dumb ten-year old and I felt insulted and embarrassed, at times in tears during the call. Less than six months later, my mother would be dead.

Here are my notes from the call:

0540 — I called Julie @ front desk to ask why I hadn’t been called yet for scheduled 530 conference call; Julie said everyone was in the room, but there was no speakerphone available; [my sister] called me from her iPhone and we used its speakerphone for the call

Dr. Caliendo introduced everyone on the call:

  • Connie Wade & Marilyn – social workers
  • Chuck – Halifax Psychiatric Center administrator
  • Darlene – nurse manager

Marilyn lead the meeting, said point of meeting was to determine what to do next, when mom can be discharged
Marilyn asked me to go over my plan.
I explained about [my friend] and [her father], possibly getting mom into program at Emory, UF, or Mayo Clinic in Jacksonville; possibly getting her into assisted living facility in Sarasota area
Dr. Caliendo basically said I was dreaming; said it was “admirable” that I had such “grand plans”, but mom no longer requires “acute care” and there’s nothing more that can be done for her at Halifax Psychiatric Center; said mom has been thoroughly tested by a neurologist and internal medicine doctor
Said the basic diagnosis is simply “dementia”, and only an autopsy can tell for sure what kind; said effectively Alzheimer’s
said the programs I mentioned sounded good, but it would take too long to actually make any progress on moving her into one of those
Dr. Caliendo said maybe we need to think about “a Ford instead of a Cadillac”
said she needs assistance, but there’s no reason for her to stay in acute care
said we need to look at family member being responsible; said maybe [my sister] could take care of her
Darlene asked about moving mom into a nursing home
Marilyn noted that she has no income or savings; I repeated her financial situation
Chuck asked why she wasn’t receiving Medicaid
Marilyn explained about the $10k pension fund
Darlene said we need to “spend down” the $10k
Chuck said his father-in-law had the same problem
I talked for about five minutes about how stupid this all is.
Chuck repeated that we needed to “spend down” the $10k; everyone said “spending down” was a viable way to get authorized for Medicaid
[My sister] said she visited Emeritus and Grace Manor; spoke about rates and facilities
Chuck said $10k would cover a few months
we all discussed the tax penalties of early withdrawal of pension
I asked about deadline; Chuck said no deadline; we’ll regroup on Friday to discuss
Check said he’s willing to work with us
I asked about specific diagnosis; Dr. Caliendo said “dementia” and that’s all
I asked if I could get copies of all her medical records; Dr. Caliendo said I was allowed to get all her medical records when she is discharged; but then noted that my role as her Guardian Advocate ends as soon as she is discharged (?!)
Dr. Caliendo said having Power of Attorney might not be enough to give me access to her medical records
Marilyn asked about sending referral materials to the two nursing homes; clarified that “referral materials” included all medical records
I said only if I could be given a copy at the same time
Chuck said they would work to find out if they’re allowed to give them to me
I said it didn’t make sense that they could fax everything to a 3rd party, complete stranger, but not to me, her son and Guardian Advocate
Dr. Caliendo said he would have everything sent to me — quick flip-flop!

Questions
March 2nd, 2012 @ 3:41 am

Here is an email I sent to my friend’s father-in-law, who works in the elder care industry and who had been offering me some advice.

 
 
The Side Effects Are Bothersome
March 1st, 2012 @ 10:32 pm

Late at night on the first day of March 2012, I forwarded to my sister and some other friends the email a different friend had sent me regarding a nurse’s opinion of the medications mom was being administered:

 
 
March Comes In Like a Lion
March 1st, 2012 @ 12:40 pm

Halifax HealthI spent a staggering sixty-nine minutes on the phone with a social worker named Marilyn at Halifax Hospital this afternoon. I took over a page of notes, and when the call was finished I was mentally and emotionally exhausted.

Here are my notes from the call:

1240 – called Marilyn, social worker; super nice, smart, compassionate
I asked about the Guardian Advocate program; she said it was exactly what I thought it was
apparently they said I sent an email authorizing [my sister] to make decisions
Marilyn said I should have been informed that they were stopping the Benadryl

couldn’t find evidence of stop order for Benadryl; talking about Tegretol, some other drug; said it was increased on 28th, said medical doctor saw mom on 20th and Tegretol was stopped – then realized she was looking at the wrong chart, all this was related to another Kathleen!

confirmed Benadryl was stopped on 26th
Marilyn wouldn’t tell me who stopped and / or why [my sister] was told instead of me
Marilyn said she doesn’t know why ChamberlinEdmunds contacted [my sister] instead of me; basically just refusing to blame Connie 1 for anything
Marilyn said a few weeks ago mom still hadn’t opened many cards / letters from me
said mom is allowed in the courtyard, where there is a basketball hoop, but she never wants to go 2

1 Constance “Connie” Wade, a social worker at Halifax Hospital
2 My mom is 63 and not really much of a baller.

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