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 My father was baker acted 
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Joined: Mon Mar 21, 2011 11:26 pm
Posts: 49
Location: St Pete Beach, FL
Post My father was baker acted
Dear fellow caregivers,

Over the past two weeks my father has been having steadily increasing rage episodes that resulted in him threatening to kill his daytime caregiver. This resulted in her calling the police, who arrived, witnessed the behavior and then took my father to a psychiatric hospital under the baker act (actually an ambulance with paramedics took him). My father's delusions had grown to a point where he believed neighborhood men were coming into his house and having sex with his ex wife, and at other moments that his ex wife was living with these neighbors. He had concocted in his mind elaborate stories about these men (one was a fisherman, for example, who seduced her by giving her fresh fish). He had been demanding that his caregivers drive him to the neighbor's houses (he can't walk that far). Of course they were instructed not to do that, which would set him off and he would rage at them. He never attacked them physically, but after weeks of this behavior and then the threats of violence, one of his caregivers felt she had no choice but to call the police.

We had been working closely with his doctor to ramp up his medication when these outbursts began; the day before the incident we doubled his depakote. He started taking 500mg twice a day. Unfortunately, the seroquel made him worse, and we did not have a chance to begin the zyprexa before this happened.

It should be noted that my father has suffered from intermittent rage episodes his whole life. These would usually last 20-30 minutes and then he would calm down and be his usual jolly self, as if nothing ever happened. "Intermittent rage disorder" is an actual diagnosis in the DSM. So what I believe is happening is that the LBD delusions are frightening him and he has lost control of his life and all this is exacerbating this prior-existing mental illness.

His doctor (a geriatric psychiatrist at the Byrd Center at the University of South Florida in Tampa) says my father is a complicated case because of the combination of his dementia with his mental illness (he also has borderline personality disorder).

The last three days have been a hectic and emotionally stressful time. We succeeded in getting my father into Arden Courts, an assisted living facility that specializes in dementia care. Basically, he calmed down once he got to the psychiatric hospital (probably because he was removed from the environment of his home which had all the triggers for his delusions). The doctors at the hospital felt he was ready to be discharged, and we (my sister and I) had already been talking to Arden Courts because we were anticipating having to place him in a facility and we felt this was the best one out there.

He arrived yesterday at 4PM, and was calm and jovial, joking with the staff. But then when I arrived he wanted me to take him home and could not understand when I told him I wasn't able to do that. He became angry and started yelling at me, at which point the staff took me to another room and he eventually calmed down.

This is so heart-wrenching I have been crying multiple times a day. I am trying to see light at the end of this tunnel, and I truly believe if there is any chance in my father finding peace for the remainder of his life it is going to be at this facility, where the staff are excellent and the environment is safe and comfortable.

Thank you all for listening.

Emanuel


Fri Oct 28, 2011 7:12 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My father was baker acted
Emanuel, you have done what had to be done. I totally understand the anguish you feel but it was necessary. Hugs and prayers for you and your father. God bless!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Oct 28, 2011 9:21 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: My father was baker acted
Emanuel, Pat is right. It sounds like he is in the right place at the right time. That is all any of us can do under difficult circumstances.
Be gentle on yourself.
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Fri Oct 28, 2011 1:20 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: My father was baker acted
Emanuel,

You are doing the best you can for your father.

I hope Arden Courts has lots of experience with similar cases, and that your father can adjust to life there.

Did his meds get changed at the psychiatric hospital? Is he taking Depakote and Zyprexa now?

Robin


Fri Oct 28, 2011 3:06 pm
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Joined: Mon Mar 21, 2011 11:26 pm
Posts: 49
Location: St Pete Beach, FL
Post Re: My father was baker acted
Thank you everyone.

Robin, let me tell you what happened around his meds and the hospitals. I am so outraged I am filing a formal complaint against the doctor he was assigned at the second hospital he arrived at.

First the background: we have an excellent doctor, Dr. Ryan Estevez, at the Byrd Memory Center at USF in Tampa. Here he is. I cannot praise him enough.

http://hsccf.hsc.usf.edu/clinicaldirect ... id=2841084

We had been working closely with Dr. Estevez to get my father's medication adjusted to reduce his delusions and calm him. We had a good plan in place. We were ramping up the Depakote and trying out atypical antipsychotics. As you know the Seroquel did not work. So we were ready to start the Zyprexa, and had just doubled the Depakote when my father was baker acted. He was taken to St. Anthony's hospital in St. Petersburg. I arrived an hour later and relayed to the pharmicist the meds he was currently taking. We had not started the Zyprexa yet so I did not tell them Zyprexa. Perhaps I should have because the plan was to start him on it the next day but in any case I didn't. He stayed one night at St. Anthony's and the doctor there did not make any medication changes.

At that point I requested he be transferred to Windmoor psychiatric hospital in Clearwater, FL, because they have a long-term (3 week) program in their geriatric unit where my father could be stabilized. I had been researching facilities for the past few weeks already where my father could go temporarily to get his behaviors calmed down, and Windmoor was highly recommended by a number of people. Dr. Estevez was supportive of this plan too. The idea was since home care was breaking down due to his rage episodes, we were going to have to remove him from his home environment, get him to a place where his behaviors could be managed via medications, and then decide whether to attempt home care again or place him in the ALF. We were on the verge of admitting him to this 3-week program at Windmoor when he got baker acted and taken to St. Anthonys.

So St. Anthony's transferred him to Windmoor the next evening. He was assigned a doctor and the doctor saw him the next morning. I had been emphasizing to the admitting nurse and the nurses in his unit (geriatric unit) that I really wanted to speak with the doctor and get him in touch with Dr. Estevez so he understood my father's history and what the plan had been. All they could do was give me his office number, and I had to fight to get them to page him for me. All they said they could do was give me an appointment a month away. I said, "my father is in his care right now at a psychiatric hospital. I can't wait a month." So they paged him and when he called me back I tried explaining to him the plan Dr. Estevez had in place and he cut me off and said rudely, "I don't take orders from other doctors. I have removed your father from Paxil and Depakote and am starting him on Seroquel." I tried explaining that the seroquel did not work for him and actually made things worse, and that he should watch some of the videos I took of his behaviors before and after the seroquel and he again cut me off and said sternly, "Your father has been baker acted. He has a court hearing on Wednesday. Maybe you can show the videos to the judge in court." Then he hung up on me.

I was stunned. Fearing for my father, I immediately called the hospital and requested a new doctor. I called the director of clinical operations, the case worker assigned to my father, the executive director of the hospital herself. I was a 200% advocate to say the least. Here was a doctor refusing to work with the family, refusing to listen to the patient's history or even talk to the doctor who had been caring for him prior to his hospitalization. And he was about to take my father off both his mood stabalizing medications and put him back on one we know exacerbated his agitation! And he hung up on me!

Basically what happened then was I was on the phone constantly for the entire day while the nurses were trying to find another doctor to accept my father as a patient. The process was slow and by the end of they day they had not found anyone. When I went down there the next morning they still had not been able to get a hold of another doctor to take my father on, and the rude incompetent doctor was about to see my father again. So that's when I facilitated his immediate transfer to the ALF. Fortunately the jerk doctor signed his discharge papers; probably because I had made such a stink he realized the best thing to do was get my father out of his care.

This was 10AM or so, and at 4PM he arrived at Arden Courts, the ALF. By the time he arrived Arden Courts had already contacted Dr. Estevez, who re-ordered the Paxil and Depakote, as well as the Zyprexa. They had also already contacted his primary care doctor and his diabetes doctor and had his insulin plan ready to go. I can't speak highly enough of the professionalism of Arden Courts.

When my father arrived there he was calm. Then he became agitated when I arrived, but all day yesterday he was fine. I feel relieved that he is in good care now, that his geriatric psychiatrist is back in the picture and we are moving forward with his medication plan.

One side note... the doctor *is* planning on weening my father from the Paxil and replacing it with a different SSRI. This is because Paxil has anticholinergic properties. But when we tried to remove the paxil about six weeks ago cold turkey, he had an extreme reaction due to the withdrawal. We also don't want to make multiple medication changes at once, so we are waiting to see how the zyprexa works first.

Emanuel


Sat Oct 29, 2011 6:34 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: My father was baker acted
Emanuel,
Wow! All of us would do much better if we had someone like you advocating for us! I'm amazed that you can see the rude MD's actions so clearly. And that you didn't take "no" for an answer. Your "case" is a great learning opportunity for many.
Robin


Sat Oct 29, 2011 11:35 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: My father was baker acted
Emanuel- Great job! With this disease, especially, we have to stay right on top of what's being done to our LO, and make sure that they aren't given any new medications or any meds changes without our knowledge. You did exactly what I would have done. When my mom is hospitalized, I'm sure that the medical team in the hospital gets tired of my questioning their every move, but I would rather have them a little put off by me than have the wrong meds given to my mom, etc. I can't believe the nerve of that doctor and you did exactly the right thing by asking for a different physician for your dad.
Kudos! Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Sat Oct 29, 2011 12:13 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: My father was baker acted
Emanuel,

Thank you for the long explanation…please share these things….

This is of great interest to me….I know I am having behavior issues already….

I will make sure that this incident is printed and given to my children for their reference…..Thanks again…

………..

is there a way to flag posts for quick future reference on the the forum?

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Sat Oct 29, 2011 1:40 pm
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Joined: Wed Mar 02, 2011 1:11 pm
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Location: Michigan
Post Re: My father was baker acted
What an incredible story. I hope you and your father do well. I had to put my husband into a nursing home this past week. He can't (or won't) move, even to roll in bed to help in changing his briefs, and while he still has lucid moments, they're further in between. I simply couldn't handle him anymore. It wasn't safe for either of us. To think it was just two months ago that I posted here that we weren't anywhere near needing full-time care.

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Wife of a 60-year-old LBD patient who was diagnosed in 2003.


Sat Oct 29, 2011 4:40 pm
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Location: WA
Post Re: My father was baker acted
Behavior issues can be a major problem. We thought my husband's issues had been taken care of with a medication change but last night he threw hot coffee in an aide's face at the SNF. He has days where he's just angry with everyone, myself included--he was angry at the restorative therapist yesterday, too, and tried to hit her. No s/s of infection and denies pain--who knows? I guess it's the disease, as anger has been prominent in him since its onset.

Craig, do you have any clues to this? Do you believe that all of your anger is externally induced or do you think it's part of the disease process? Could it be the Sinemet? Do you take a carbidopa/levodopa medication? [Looking back, though, my husband was having serious anger issues before being diagnosed and taking Sinemet]. :cry:

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Oct 29, 2011 7:28 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: My father was baker acted
Pat,

It seems that the anger is agitation triggered at this point….If I remove the agitation or myself…the anger subsides…quickly…

….it also escalates quickly…..

so….it is scary stuff….

especially when I read this stuff…

so…..I am trying to prepare those around me, to keep us all safe….

I am prepared and going to set things up…so if this becomes a big problem…..no one will be expected to handle this in their home.

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Sun Oct 30, 2011 2:13 am
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Joined: Mon Mar 21, 2011 11:26 pm
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Location: St Pete Beach, FL
Post Re: My father was baker acted
BayouCajun,

First, I think you are an amazing person that you have accepted your diagnosis and are taking steps to prepare yourself and your family for possible behavior problems in the future that you may have no control over. One thing to know that might put your mind at ease is that my father has always been an angry man. He has had intermittent rage episodes most of his life, and likely has had "borderline personality disorder" most of his life too, a mental illness with a lot of despair and anger involved. I believe the LBD is bringing out the worst aspects of my father's mental illness, and his behaviors are a mixture of LBD and these other things, perhaps mostly the other things.

So if you haven't been a generally angry person most of your life, you likely won't experience the degree of rage and disruptive behavior my father has experienced. I say this cautiously, because I also want to recognize other people's experiences, as reported in this discussion, of their otherwise peaceful LOs becoming violent after LBD progression. That said, I really cannot imagine anything quite as bad as my father's recent behavior. Before being baker acted, he was having full-on rage episodes every day that would last hours at a time. Again, I believe this is more of his mental illness than it is his LBD.

Thank you again for being an inspiring example of someone with wisdom doing all the right things for yourself and your family.

Emanuel

PS - Day three in the ALF my father is doing much better already.


Sun Oct 30, 2011 3:06 pm
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Post Re: My father was baker acted
Emanuel, you should feel satisfied and proud that you took control and did the right thing for your dad. Way to go!!

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sun Oct 30, 2011 9:36 pm
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Post Re: My father was baker acted
Emmanuel - sending you lots of positive thoughts and congratulations for being such a strong advocate for your dad. BTDT - there were several times I had to stop everything in my life and spend hours and hours, sometimes days and days on the phone trying to get issues solved with my dad's medical personnel. Egos can really get in the way of proper treatment for our LOs. It is a tough job and people who have good drs. & CNPs & CGs are very lucky they don't have to fight that additional battle. I can really empathize with what you've gone through. Hang in there! Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Nov 14, 2011 4:07 pm
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Post Re: My father was baker acted
Emmanuel,
I was just read through what has happened and all's I can say is Wow! You are one heck of a advocate and I am so glad that you stuck to your guns in this issue, Arrogant doctores really are the one's that ruin it for other doctors and I am glad you have a good one for your Dad. We lived in that county when my husband was sick and it took me a long time to find a doctor, his name is Dr Vazques down in St Pete, he was a really informative , caring doctor too,
I am glad Arden Courts is taking good care of your Dad's needs

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Irene Selak


Thu Nov 17, 2011 7:40 pm
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