Kathie Gagne died 4,582 days ago.

Trying to Talk
August 7th, 2012 @ 4:43 pm

Mom’s friend from church called this afternoon while in mom’s room at Woodland Terrace. She counted down, “3, 2, 1 …” and put mom on the phone.

I said, “Hello? Mom?” and tried to engage her over and over again, but it was just ninety seconds of her labored breathing … gasping really. She didn’t respond to me at all.

Mom’s friend took the phone from her and said, “She’s probably had enough. She’s more agitated than usual.” She told me that Nurse Cheryl was going to be calling me in a few minutes because she wanted to tell me what the “local doctor” had recommended. I thanked her and we hung up. The entire call was only about three minutes.

A Call from a Friend
August 7th, 2012 @ 2:46 pm

Mom’s friend from church called this afternoon. She began by asking if I had talked to anyone at Woodland Terrace lately. I told her that I called them or they called me just about every day. She wanted to know if I knew anything about progress with mom’s application for Medicaid because the night nurse told her that mom had been approved to see a psychiatrist.

I explained to her that Shelly had told me she’d talked to Dr. Oh and he agreed to see mom even though her Medicaid status was still pending. Mom’s friend from church said she thought it was good that it was Dr. Oh because they at least have a history together.

Here are the notes I wrote during our thirty-minute phone call:

  • mom is completely “non-communicative” now
  • she visited mom yesterday and brought her some “house dresses” so she’d “be presentable in the common room at least”
  • her “normal mode” now seems to be just non-stop up-down, up-down; she is constantly standing up in her wheelchair and then sitting down again, exhausted, almost immediately
  • she seemed to like one of the three dresses more than the other two, but didn’t really express anything
  • every time she sees mom, she tries to get her to talk
  • she believes if mom “dug deep and tried, she’d say something”; for example, mom got her wheelchair wedged between her bed and the dresser and mom’s friend said, “You got in there. You can get out of there if you ask me for help.” About five or six minutes later, mom very quietly said, “Help.”
  • “there’s something behind this”; hoping Dr. Oh knows how to get her off this point
  • this weekend Nurse Dawn told her that Woodland Terrace was not a mental rehabilitation center
  • she can’t seem to get a straight answer when asking whether mom is getting regular physical therapy
  • she doesn’t necessarily put a lot of stock in Dr. Oh, but hoping that he has an idea of how we got in this place now
  • the last couple of times she’s visited, she’s tried a different tactic each time to try to get her “out of it”
  • asked two different nurses if she is walking, can she take care of her personal needs (bathroom, shower, etc.) and they both said they didn’t know; the nurses didn’t think mom is self-aware enough to do that
  • Mom is “most agitated when her diaper needs to be changed, yet she won’t vocalize it.” She talks to mom about it, “but it doesn’t seem to matter.”
  • It’s “mind-boggling and frustrating at the same time,” because, “she’s not doing anything to help herself.”
  • Mom’s friend questioned Dr. Oh’s bedside manner, but added, “He was the one who really felt like your mom’s dementia was depression-related.” But at least he was familiar with her before she “went down to this level.”
  • She said she was going to see if she could get down to see mom this evening, and if she does she’ll let me know.
  • I asked her if she would let me talk to mom on her cell phone if she does make it down there, and she said she would try to call me, yes. She said sometimes mom is not cooperative and sometimes she is.
  • She asked me if I was planning on any trips to Florida again this year.
  • I asked her if she knew if mom was receiving the letters and photos I’ve been sending. She said that there was a box of letters next to her bed, the most recent letter was always on her bedside table waiting to be read to her, and there is a bulletin board next to her bed full of photos.
  • She said most of the CNAs visit mom in twos and threes, because her grip is amazingly strong and “she’ll pull you down.”
  • Most of the time mom is just up-down, up-down; when you go visit her, if she’s awake, she’s parked next to a nurse because she won’t just sit still in her wheelchair. If she was doing it with a goal, it would be good exercise. She said that an RN or LPN is the only one available to keep their eyes on her.
  • Mom’s friend said that she got the “distinct impression” that someone thought when she left the last time — when they sent her to Fish Memorial for the day — that she wouldn’t be coming back; they took everything off the walls. But everything is back now.
  • Except for her constant agitated state, she’d be on level with who is already there; one nurse said she thinks mom should be in an “Alzheimers lockdown unit”, because if she had more of her senses together, she could “roll on out of there”.
  • She said that she would love to get mom “across the street” at the Towers, which is more like a dormitory. She said the Towers is “a very nice facility,” and it is literally across the street from Woodland Terrace. She said that getting her there would be a great thing to shoot for, but, “I don’t think your mom is thinking more than five minutes into the future.”
  • I told her that I would call first thing tomorrow morning to see what Dr. Oh might have said today or yesterday, since I was told he would be visiting mom but hadn’t heard anything from anyone at Woodland Terrace yet.
Hospitals and The Cheesecake Factory
August 7th, 2012 @ 10:17 am

I highly recommend this article from The New Yorker, “Can Hospital Chains Improve the Medical Industry?”:

In medicine […] we are trying to deliver a range of services to millions of people at a reasonable cost and with a consistent level of quality. Unlike the Cheesecake Factory, we haven’t figured out how. Our costs are soaring, the service is typically mediocre, and the quality is unreliable. Every clinician has his or her own way of doing things, and the rates of failure and complication (not to mention the costs) for a given service routinely vary by a factor of two or three, even within the same hospital.

Level of Care
August 7th, 2012 @ 8:40 am

This morning I received a phone call from Michelle Cofano from the Florida Department of Elder Affairs. 1 She was calling to let me know that she does Medicaid eligibility approval, which is apparently another way of saying that she is responsible for submitting the “level of care” data to the state. (Yes, this is the same “level of care” that I was just investigating earlier today.)

Michelle was calling me from Woodland Terrace, where she was reviewing mom’s chart. She said that her job was to check to see if people meet the criteria to qualify for Medicaid, and that mom does. She also wanted to let me know that this call from her would likely be the only call I received from anyone in the department. She said that in order to qualify for Medicaid, one had to receive approval from a financial standpoint and a medical standpoint, and that she was approving the medical. Michelle also told me that there were state and federal regulations and legislation that mandated every potential Medicaid recipient acquire both of these approvals before being granted Medicaid.

I gave her the long-form summary of mom’s story to date, including telling her several times that she should visit this website for more information. She assured me that she would.

I asked her why this was the first time this “level of care” was being done, since we’ve been trying to get mom approved for Medicaid for about nine months now. Michelle said that according to her records the first and only request to have a “level of care” assessment performed was on July 27th, 2012. She guessed that the reason it hadn’t been done yet was because none of the previous places where mom has been since December 1st, 2011 was an actual “nursing home”, 2 and only a nursing home would have requested it.

That’s sort of troubling and annoying, of course, because Janis Stovall 3 at Grace Manor Port Orange and Sophia Mas at Stewart-Marchman and Sofia at Coastal Rehab told me on multiple occasions that they were very familiar with the process, that they were doing everything necessary to acquire Medicaid for mom, and that I should trust them to handle things. 4

At one point during the call, while I was describing to her how frustrating the last nine months have been, that even something as simple as getting to talk to mom on the phone is a huge hassle, Michelle — who was talking to me on a cell phone — walked into mom’s room to attempt to let me talk to her. It was very sweet of her, but I guess they had just recently gotten mom out of bed and so she was almost completely unresponsive. If she said anything while Michelle held the phone to her ear, I didn’t hear it. I said, “Hello? Mom?” several times, and, “It’s me, David,” but there was nothing but her near-silent whimpering cry on the other end of the line. After less than a minute Michelle (who clearly felt like she had made a terrible mistake) came back on the line and said that mom seemed to be agitated at the moment.

I told Michelle that mom has been like that for weeks and weeks now — since at least when I visited around Mother’s Day — and not to feel badly. At least mom got to hear my voice today.

Michelle promised me that she was going to submit the “level of care” to the state tomorrow, and that I should feel a little better knowing that we are at least one step closer to getting mom approved for Medicaid.

Michelle was incredibly patient, understanding, caring, and just plain nice. We talked for almost exactly one hour.

1 During the call she also said that she worked for C.A.R.E.S.; I’m not really sure if C.A.R.E.S. is a department in the Department of Elder Affairs or what. It’s all pretty confusing.
2 except for Coastal Rehab, but she had only been there for one week
3 and / or the “other” Janice at that facility; I can never remember which was which
4 And of course I didn’t trust them, and I was correct to not trust them, because they all failed miserably at making any progress in getting my mother approved for Medicaid. Trust no one. Ever.

Confirmation from Shelly
August 7th, 2012 @ 6:30 am

Early this morning Shelly from Woodland Terrace responded to my sister’s email from last night:

Yes, all the information was forwarded on 7/23/12. I re-faxed the consents and 3008 again this morning. We are still waiting on the Level of Care and will forward that once received.

Shelly

(My sister replied with, “Thank you,” about an hour and a half later.)

So basically Shelly is saying that over two weeks ago she had sent all of the information that the State of Florida Department of Children and Families claims is missing except for the “Level of Care”. And she’s saying that she sent all of that again this morning.

At about 8:40 AM PDT I replied to both of them with this question:

Shelly,
What exactly is a “Level of Care”?
Is it a form?
Who is responsible for providing that to you?
When was it last requested?
Is there anything I can do to encourage that person to send it?

Thanks,
David

At 10:21 AM PDT my sister replied to me and copied Shelly, saying:

I believe Shelly has said that the Level of Care is an assessment that someone from ElderSource or Council on Aging (one of those type of agencies, I do not remember off the top of my head) does on Mom to determine if she does, in fact, need to be in a nursing home.

Then at 1:17 PM PDT Shelly replied to us and said:

Yes Jennifer, you are correct.

RE: Kathleen Gagne Medicaid
August 6th, 2012 @ 7:27 pm

My sister sent this email to both me and to Shelly Sparace 1 at Woodland Terrace:

Hi, David and Shelly.
I received a notice in my email that linked to this letter from Medicaid 2. Shelly, have these forms been sent?

Attached was a 2.2MB PDF named “Medicaid Letter 8.7.2012”. It is another perfect example of how shockingly, insultingly, stupidly idiotic the Medicaid application process is in the State of Florida. I cannot imagine how anyone in the State of Florida Department of Children and Families could possibly think that a letter like this would be informative to a senior citizen attempting to get approved for Medicaid. It’s almost — almost — like the state doesn’t want its citizens to receive financial assistance. Take a look:

Dear Kathleen Gagne,
The following is information about your eligibility.

Your application received on July 06, 2012 has not been processed because:
You have not returned everything we need to determine your eligibility. Please return or fax the information to the return address or fax number listed above. You still need to return:
Other – please see comments below 3
Please complete and sign the Authorization To Disclose Information Form
Please complete and sign the Informed Consent Form
Please complete and sign the Affidavit for Designated Representative Form 4

case is pending: placement in nursing home. level of care. completed and readable 3008. 3/12 to current bank statements. 5

Requested items with an asterisk (*) must be provided if you are applying for food assistance.

If you do not return this information by September 04, 2012, we will deny your application because you did not provide the requested information and you will not receive a separate denial notice. This is your denial notice. 42 CFR 435.912

If you think you already returned this information, go to your MyACCESS Account and it will tell you which information we are waiting for.

If you do not already have an account, you can set one up using your case number listed above . Go to www.myflorida.com/accessflorida to activate your MyACCESS Account and check the status of your application.

Please contact our office at the number listed above, if you have questions, need additional information, or need help getting this information.

AE44 P1 FORM: CF-ES 160 06 2012

1 using wtsocialterr@wterrace.com
2 The letter isn’t from Medicaid, of course. It’s from the State of Florida Department of Children and Families.
3 I love the “other” line item.
4 There is no way to know how to acquire those three forms.
5 A “3008” is a form which needs to be returned. That’s not exactly clear from this, do you think?

Psychiatric Therapy Approved
August 3rd, 2012 @ 10:30 am

I just received a call from Shelly Sparace at Woodland Terrace. She asked how I was doing and I said that everything was going well aside from spending the last nine months dealing with the most horrible, traumatic thing that has ever happened to my family. She said she understood and sounded very sympathetic.

She was calling with good news, though. Shelly told me that she finally heard from the psychiatrist who regularly visits Woodland Terrace, and he agreed to see mom even though she has not yet been approved for Medicaid. She said that she hadn’t returned my call yet because she had wanted to wait until she got confirmation from him first. I asked if she knew his name and she said it was Dr. Oh!

Now, I know that my mom has seen a Dr. Stephen Oh in the past, but Shelly did not know his first name. I suppose that Oh is a common last name, but I can’t imagine that there are many psychiatrists in Volusia County named Oh, so there’s a good chance it’s the same doctor.

I asked Shelly if she knew what his schedule was, how often and on what days he visits Woodland Terrace. She said that she didn’t know, but that she would email me when she does.

I asked her if the same protocols would be in place as far as prescriptions are concerned, and she confirmed that they would still need my approval before giving mom any new medications.

The entire call lasted about four minutes.

Update: About three hours later — at 1:23 PM PDT — I received this email, which displayed Social Services Director <wtsocialterr@wterrace.com> as the “from” address, and RE:Psychiatrist as the subject line:

Hi David,

According to nursing the psychiatrist comes weekly, usually on a Monday or
Tuesday.

Have a good weekend.

Shelly

Calling Woodland Terrace
August 2nd, 2012 @ 8:50 am

I called Woodland Terrace this morning hoping I would be able to get mom on the phone. 1 After a few rings, the line was answered, “Hello. Woodland Terrace. This is Rosa.” I asked if it was Rosa Rivera and she said it was. I identified myself and she said that “they” had received my emails, but hadn’t had a chance to reply. She said that she was busy and asked if she or Anthony 2 could call me back.

I told her that was fine, but then she started talking about the forms I had returned and we ended up talking anyway. She said that it was important for me to return the “Financial Responsibility Agreement” 3 for the pharmacy in Tampa, because without it if mom was ever given a prescription, they wouldn’t be able to do anything without that form. 4

Rosa said that she understood that many of the forms can look intimidating, specifically the ones about living wills and do not resuscitate orders. She said that I shouldn’t be worried because they (the forms) are not “holding you down to anything.”

I asked her who Anthony is, because I didn’t know, and she said that he is in the admissions department and that he came from the Daytona Beach office. 5

She said that she “turned in” everything that I had sent, but that “a lot of the paperwork is mandatory.” She apologized for not getting back to me yet, but that they’ve had, “lots of admissions the last few days.”

I asked her if she understood what I meant when I wrote that the two sets of paperwork (the PDF scans) that she sent me were completely different. She said that they were the same, that she pulled them from the same file. I insisted that they were not. Rosa said that she resent me the pages which required signing and didn’t resend the whole packet again because most of it was just things to read. I explained that no, the two sets of documents were completely different and that none of the documents in the second scan existed in the first.

At this point Rosa apologized and said she would need to call me back. She noted that she had my cell phone number and would call me on that soon. She asked if there was anything else she could do for me, and I said I’d like to speak to the nurse assigned to mom today. Rosa said she could do that and asked me to hang on.

About three minutes later the line was answered, “Luanne, West wing.”

I said, “Hello, Luanne. It’s me, David,” and she recognized me immediately. I told her that Shelly 6 never called me yesterday and she told me that Shelly is really behind in calling people back. Luanne said that Dr. Peele had “changed it back” because I said I didn’t want mom to be given Haldol, so now she’s back on Ativan.

I asked her if Dr. Peele had been there today, and she said he had already come and gone, but she did not know if he’d seen my mom because she hadn’t yet had time to look at mom’s chart. I asked Luanne if she knew who I could contact to get a list of her current medications. She said that she would have to check with Susan 7 because she was unsure if she was able to give that information over the phone. I explained that it was good she was being careful, but that I am actually the only one to whom she was allowed to give any information, period.

Luanne asked if I was “on the list” and I said that I should be the only one on the “face sheet”. 8 She said she needed to see hwo she could get me the list and I told her she could just read it to me. She said that “each nursing home has its own policies regarding HIPAA,” so she needed to check. I said that I hated to ask her because I know how busy she probably is, but she said that, “No, it’s fine. I just need to check to make sure I’m allowed to do that.”

She asked me to hold and after a minute or two of listening to the strange hold noises, she returned and read me the list of mom’s current medications:

I asked her if she’d seen my mom today and she said that of course she’d seen her. I asked how she was doing and she said, “She hasn’t been too, too bad today.” Luanne said she slept through her breakfast so they had to wake her up so she could eat. She also said that they were getting her into her chair for lunch right now.

I said, “Do you think it would be worth it to try to talk to her?” and she said she would check to see if she was in her chair yet so she could bring her to the phone.

After about three minutes Luanne put mom on the phone.

I said, “Hi, mom!” and she said, “Hello.” That was just about it. We were on the phone for about five minutes, but it was really just me saying, “Hi, mom. Can you hear me? How are you? Are you doing okay?” and getting no response other than labored breathing. In the background I could hear Luanne saying, “It’s your son, David. Say hello to him. Can you say hi to him, Kathie?” over and over again. I told her it was okay, she didn’t have to say anything. I told her I missed her and that I loved her. Luanne came on the line and said that mom had dropped the phone. I thanked her and said goodbye.

The entire call lasted twenty-six minutes.

1 It’s been nine months since all of this happened, and it’s still pretty hard for me to deal with not being able to talk to her every day. A dozen times this week alone I reached for the phone because I wanted to talk to her about something and then had to deal with the fact that it would be a Herculean task just to get her near a telephone, much less to get her to talk. We haven’t had what any sane person would call a conversation in months and months now. Heartbreaking is the only word that is appropriate.
2 I have no idea who Anthony is and this was the first time I’d ever heard his name.
3 She did not refer to it by that name, of course; but that was certainly the form she meant.
4 This is a little confusing, because obviously they are fulfilling her prescriptions now even though I haven’t signed anything.
5 I had no idea that Woodland Terrace had a Daytona Beach office. I also have no idea what that means in regards to Anthony.
6 Shelly Sparace, the social worker that Luanne repeatedly told me yesterday would be calling me to discuss psychological counseling / therapy for mom
7 Susan Mackelfresh, director of nursing
8 I really have no idea why everyone uses the term “face sheet”, but apparently it’s common to refer to the list of people allowed to get information about a patient as a “face sheet”.

Nurse Luanne
August 1st, 2012 @ 10:38 am

I called Woodland Terrace to see if I could get an update from Nurse Luanne since I hadn’t heard from her in over an hour. A woman named Marty answered the phone. I told her that I had talked to Nurse Luanne in the West wing about an hour ago and wanted to know if I could speak to her. Marty said that she needed to check to see where Luanne was. Marty returned and told me that Luanne was in the West wing and asked me to hold.

A few seconds later the line was answered by someone named Angelique. I asked for Nurse Luanne and she said she’d get her and put me on hold again. (I couldn’t tell if there was some sort of interference on the line or if I was listening to something they were intentionally piping into the hold music, but it sounded exactly like Rush Limbaugh talking about something from very far away, with lots of interruptions by static.)

Luanne answered and I said who I was and she told me that she hadn’t been able to get in touch with Dr. Peele yet. She wanted to let me know that she had spoken to “the social worker” about getting mom psychological therapy and she was going to call me. (I asked her if she was referring to Shelly Sparace and she said that she didn’t know her last last name; she only knows her as Shelly. I can’t imagine there are multiple social workers named Shelly employed there, though.) She repeated that Shelly was going to be calling me, because she didn’t know anything about psychological counseling or what her facility offers in regards to that, and she didn’t want to give me any wrong information.

I told her that I certainly appreciated that, because wrong information sucks, and we both laughed. Nurse Luanne was very, very nice.

I asked her how my mom was doing, if she was still very anxious. She told me that she was waiting for Dr. Peele to return her call about the Xanax and that right now mom is laying down. She said she didn’t know how long mom would be down, that sometimes she’ll go down for a half hour and other times she’ll stay down for several hours. Nurse Luanne said that mom was exhausted from walking up and down the halls and standing up and sitting down repeatedly, so she is very calm.

I asked Luanne if she was from Boston, because she has a very distinct accent. She laughed and said she was from Massachusetts and then we talked for a minute about how mom was born in Providence and how I was born in Pawtucket and spent several summers in college loading trucks in Seekonk, which is right near where Luanne’s hometown.

She told me that this was her first day with my mom and she’s trying to get her patients settled. She again told me that Shelly would be calling me and I thanked her and we hung up.

The entire call lasted about six minutes.

Update: My sister emailed me at 1:28 PM PDT to say, “Really?!? This is the first I have heard of Mom walking at all in months! That’s awesome. I know it seems trite maybe compared to her psychological needs, but I think that it is beneficial to her psychologically to be able to walk. I think it helps as an outlet for her anxiety. It has not quite been 4 months since we were told she had fractures in her pelvis. Have they done any x-rays or has it been long enough we can assume they have healed?”
A Request to Administer Haldol
August 1st, 2012 @ 9:21 am

I just received a phone call from Nurse Luanne at Woodland Terrace. She introduced herself and confirmed my identity and then said, “We’re going to be stopping the Ativan and starting her on Haldol.”

I asked her why and she told me that she had talked to Dr. Peele and he had approved Haldol because mom is being very anxious today and they cannot get her to calm down. “She’s roaming up and down the hallways,” she said.

I told her that I was opposed to switching from Ativan to Haldol. Luanne was gracious enough to allow me to explain to her the five-minute, condensed version of mom’s history; then I explained that I would much prefer her to be given Xanax — or even just let me talk to her on the phone for a few minutes — rather than giving her Haldol again, which is just going to knock her out and make her a zombie.

Nurse Luanne said she would call Dr. Peele and ask him if it was okay to give mom Xanax instead of Haldol. I told her to please, please call me before doing anything and she said that that was exactly what she had just done, and that she would call me and let me know what Dr. Peele says.

The entire phone call lasted eight minutes.

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