New to this and afraid...

[Lovemypresley]

Hi all,

I just registered tonight and am glad I found this site. I am 39, only child of my dad, who just turned 69.

Dad had a routine chest xray early last month and was diagnosed after having a ct scan (3/6) and bronchoscopy with NSCLC, stage 4. Also, his vocal cord nerve is paralyzed from it and the reason why he lost his voice. Also the cancer has encased pulmonary artery and narrowed it by 50%, so there's a chance it can rupture.

He had his first appt. with oncologist on 4/7 and was offered a clinical trial. He had to have tests done prior, so he had a brain scan, which was normal, but his EKG came out bad, so they admitted him on 4/19 and was found to have Atrial Fib. and Pericardial Effusion, (fluid around the heart). They thought about doing surgery to drain the fluid, but istead gave him his first dose of chemo, Docetaxel and Carboplatin, on 4/21. He's supposed to have chemo once every 3 wks. x 6 cycles. He had no sudden side effects, and they discharged him on 4/24. We had to call 911 last Wed., because he was having a hard time breathing and I couldn't find his pulse. They found out in the ER that he had more fluid around his heart and was in heart failure, his bp was 60/40, high potassium and high blood sugar. So they did emergency surgery to drain the fluid. He seemed so much better the next day, but since then things have changed...they did say the cancer had spread to the pericardium, fluid and even saw tissue on his heart....

A few days ago, he started having hallucinations. He's not on pain meds in there. He kept hearing a song, kept seeing things, then on Sun., he ripped his IV out and the hallucinations were more. He called mom to ask if she was in the hospital and that she would never find him, etc. Also, Sat he became neutropenic, and they moved him from cardiology to oncology. They gave him a sleeping pill last night after he became violent and hit my mother, very next second, didn't know he had done this. Last night he walked down the hall sans clothes trying to leave. I went to visit him today, and omg what a shock in just 1 day. He doesnt look like dad. He's incoherent, his breathing is so labored and wheezy, and his eyes are foggy and crooked. He didn't even know me or where he was. It was so shocking, I had to leave and just broke down. I can't believe it's so fast. He was fine up until a few days ago, as far as his mind. The nurse told me "oh he has sundown syndrome. Some elderly patients get confused at night." Well, maybe, but it's all the time now and he's incoherent! I left and went over to speak with his nurse at the cancer dr and she said it may be his heart meds or maybe the cancer has spread to his brain, although the MRI was normal 2 1/2 weeks ago. She said she would get the dr. to order an MRI. Well, she called and said he didn't think it was necessary, that he felt it was...sundown syndrome! I explained that no one but us knows the difference, b/c his weekend nurses are not there today, his dr. was on vacation and just saw him this morning, so they can't see the difference. Also, a case worker came in and asked if we wanted him home after discharge with home health care/hospice or a nursing home. Well, we can't take care of him like this, but I wish they could find out why he's like this. Also, he choked on food this am, so they did a swallow test, because he cannot aspirate, and they have to give him thickener in his liquids now...not that he's drinking or eating..and they haven't put an IV in since he pulled it out yesterday morning.

Has anyone had experience with the above when the patient is not on pain meds, patch , etc which could cause hallucinations and esp being incoherant? I am so afraid and so shocked...I can't believe how he's changed in just a couple of days...I cant get him out of my head. I swear if I had just walked by him not knowing, I would not have recognized him.

[Stephi]

Debbie, I am so sorry about your Dad. I don't have any medical info for you. Is he being treated in a Comp Cancer Center?? You may want another opinion. My husband's cancer is next to the aorta and on the pul artery also. He is being treated successfully. Your dad may have had a reaction to a med they gave him. I do know he should be on an IV..insist on that now. They may have to restrain him to keep him from pulling it out, but he needs to be hydrated.

Please know that this place is a wealth of information..and compassion. Sending you prayers of courage and strength and hugs of comfort

Stephi

[karenl]

Hi Debbie

I know how awful this is.....I hope the doctors are able to find out what is causing these symptoms. When Mum was in a similar situation, we asked the doctors to check for things like hypercalcemia, urinary tract infection, dehydration.....all can cause cognitive symptoms like you have described.

It is such a scary thing to be going through for all of you. Your Dad is lucky he has you to advocate on his behalf.

Love Karen

[cindi o'h]

Debbie,

I understand now. But, really I don't. I agree that an adverse reaction to a med is what may be causing his psychosis. And like Karen said, it may be his electrolytes.

He needs a doctor who will take notice. Is there a hospitalist in his charge at the hospital? An internist assigned to care for him?

It sounds as if he needs immediate attention.

I am not a nurse or doctor.

Do not let the medicals ignore your pleas. Be persisent. It is okay at times to be impolite if you must. This is one of them.

You must get to the bottom of this. You sound like a very intelligent woman. I would be livid if someone asked me to swallow sundown syndrome. Let's get real, folks.

We have others here from Va.

I am here with the others to rally around you. Will be checking your posts regularly.

Cindi o'h

[tatlyn]

Hi Debbie and welcome. I'm so sorry you are having to go through this. *Sundown syndrome*, *elderly patient*, and your dad is 69? Urrgg....you must find someone at that hospital with some common sense who will investigate the cause of this sudden behaviour change. Is there a patient advocate at the hospital that you can speak to? Please let us know how you make out. God Bless.

Lynda

[michelepal]

Oh Debbie,

I am so so sorry that this nightmare is happening to your family. I could totally relate to what your going through, my Dad lost his voice and then was dx with LC. I really don't have to much info to offer but please know how sorry I am..(((HUGS)))

Love Michele

I miss my Dad so much!!

[momo]

Your description of your Dad's symptoms brought memories of my Dad back to me in

a flash. Your Dad's diagnosis and timeline and his age are all the same. My

Dad became incoherent very quickly as well. The staff tried to tell me it was

sundown as well or possible brain mets. I didnt' buy it! My Dad had lost his

voice as well so I was his voice and I stayed night and day with him at the

hospital for 5 weeks. Please have the hospital check your Dad for a staff

infection. My Dad contracted a staff infection in the hospital and from that

point on we were on a very quick downward spiral. The doctors admitted the

infection was contracted in the hospital and that the infection caused tiny

clots that errupted and caused a stroke. There were no brain mets! I was

devastated. If you can not be with your Dad at night please arrange to have a

nurse with him. You would be surprised at what goes on in the hospitals at

night. (And we were in what was considered a top hospital in Fla.) It is truly

frightening and for those who cannot speak for themselves, their families must

fight even harder for them.

My Dad was diagnosed on 03-01-06 and passed away on Memorial Day,just a few short weeks later. I am still dealing with what happened but I have come to believe that the infection that my

Dad caught kept him from enduring a lengthy fight with chemo and radiation (he

had only had 2 rounds of radiation when he was admitted to the hospital for

dehydration).

You must be your Dad's voice and his advocate. I wish you well on your journey.

[Linda661]

Oh, I absolutely hate what you are going through -- the brush off from the medical community is frustrating and, I find, humiliating for patients over 65! Yes, I have had similar experiences and others I know locally have had these experiences with LC dx'd loved ones -- including the walking around in the birthday suit, incoherent, violent and hallucinating big-time....yet the doctors don't seem to acknowledge that this ever happens or want to deal with it -- they leave it to the family to just deal with: it's a source of great suffering for the family and friends of the patient.

This untreated set of symptoms left a good friend of mine (I didn't know her well then) destitute when her significant other began spending huge amounts of money in his hallucenogenic fits and noone would help her by questioning his odd behavior!!!! It was much more bizarre than that too and he was only about 50 years old (i.e. sundown syndrome??????? who are they probably kidding??)

You say, meds aren't involved....any kind of steriod can be a part of the violence. There probably was more in those IVs than just saline -- might want to check what else was administered then to be certain that no drugs are involved in the symptoms.

The incoherence and hallucinations can be from any number of infections as folks have already said or from really out-of-whack bloodwork: high calcium level, low sodium level, high potassium .... haven't heard so far of sugar-levels contributing. Calcium, sodium, and potassium levels and how they are balanced in the bloodstream are critical to proper brain functioning and cognition.

In my experience, you are going to have to insist that they get to the bottom of this and address this behavior. Keep us posted.

Linda

[dadstimeon]

Welcome Debbie--Sorry to hear about your dad but glad you found us. Rich

[DebsSky]

Hi Debbie:

My Mom had her electrolytes bottom out on her and she went into seizures and I swear, I did not know her either! She was talking nonstop and didn't know who I was.

The doctors at the ER we took her to had said the same thing, that the cancer had spread to her brain and that we had a few hours with her at best. They transfered her to a big hospital in the city and did an MRI and found out the cancer had not spread and that she just needed fluids. After getting us to sign a DNR already! They admitted her in the city, but I'm telling you, it was a nightmare previous to it.

Dig in, I am sure you can find out.

Good luck and I will be praying for you and your Dad,

Deb

[Stephi]

Posted: Tue Apr 25, 2006 11:24 am Post subject: be firm

Debbie, something you will learn here quickly is that you MUST be aggressive...the Drs. and nurses and hospital work for YOU>>>question them, if you have any trouble go to the patient advocate ASAP..do not leave her alone, as someone said...ask for a consult with another Dr. demand to see her test results and that they are doing the right tests...when she comes out os this make sure you have a durable power of atty. for her healthcare.

sending prayers of strength and courage and throwing in a bit of "bite" for ya

Stephi

[ma's kid]

You may want to ask if he was on any meds to help him sleep or to calm him down..prior to his episodes of confusion, etc. The sleeping pill Ambien has some similar side effects.

Agree with what everyone else said as well...have them check for infections, electrolyte imbalances, etc.

Best of luck and praying for your Dad

Hugs,

Libby

[Lovemypresley]

Thank you all so much for responding. Wow...dad's story sounds almost identical to a couple of yours.

I left a message last night at the nurse's station for his dr. to call me this am, since I cannot be there that early. He called me this am and said "your dad's a very sick man." DUH I explained to him about his cognitive symptoms and he said that was the least of his worries right now, that the Atrial Fib is kicking in full force, heart rate was 180, bp low, and he said he's not out of the woods and I asked if he could go today and he said hopefully not, but yes...

So I flew up there and he's not is his room. I freaked then was told he had been put in ICU. Thank you Lord! The dr. who called me is an associate of his reg. oncologist and was there and talked with me. Weird he was the one ordering everything, yet I saw his reg. dr. sitting at the nurses' station and he did not say one word to me. Yeah tell me again Sundown?!? So dr. said this is very uphill, the cancer is all around the heart causing this, and although he hates doing radiation to the heart, if he doesn't, he won't make it, b/c the chemo would take to long if it worked. He said the bad side effects of it to the heart wouldn't be for 9-12 months, and that he wouldn't be here in 9 months. I told him what I told about sundown, and he said his low oxygen level could play a part on his brain, along with a medication problem, but all he was taking were heart drugs and only Ambien the night after he went a little nuts. Also, his heart could be doing this, too. So he walked me up to ICU and omg...he looks bad...they said at least he wasn't gray, he had color now. The dr. also called in his cardiologist..you would think with the heart surgery, they would have called him by now?? He said this AF will happen over and over.. So they started him on new heart drugs via IV and yes, I told them to give him an IV and the dr. said he should have been on one. He can't eat because they need to do more swallow tests and he's out of it, but said he will prob. get a feeding tube. His reds are low so they gave him a blood transfusion..a little and more tomorrow, so not too much fluid at once, since that's a problem, + Lasiks.

Dad did grab me and pull me to him and hugged today, so I hope he knows who I am... I am happy that they finally are being proactive, although they should have done this yesterday! It's so hard to watch...I would give anything to have my old dad back..even for a short while. But as I told his dr., I don't want him suffering.

Thanks again for all your support. It's good to know others understand what we're going through.

[ErinC1973]

I saw a change like this in my grandma when she had sepsis. Now, I also did see a change, literally within hours, in my dad, when his LC metastasized to his brain stem. My grandma was belligerent, didn't know where she was, kept telling people "bull$#it" when they told her she was in the hospital. My dad woke from a nap one day, and acted strangely every moment after that. He started by urinating in the oven, and told my mom he couldn't find the toilet. Later she found him urinating on the front lawn. In the hospital he kept picking up the remote and removing the batteries, then he's change the channel to nothing but snow. I am honestly glad this only lasted a few days before he passed away; it was unbearable to watch.

I think the "sundown syndrome" is completely unacceptable. I'd be furious if I heard something like this. What is with doctors and nurses? I know how hard it is to deal with this, and sometimes you feel like you have no fight in you, but please, dig deeper and I do hope you get some answers. There is a reason for this...and "sundown syndrome" ain't it.

Good luck,

[Lovemypresley]

*Sundown syndrome*, *elderly patient*, and your dad is 69? Urrgg....

Lynda

I know, right? idiots

[Lovemypresley]

Oh Debbie,

I am so so sorry that this nightmare is happening to your family. I could totally relate to what your going through, my Dad lost his voice and then was dx with LC. I really don't have to much info to offer but please know how sorry I am..(((HUGS)))

Love Michele

I miss my Dad so much!!

I'm so sorry ((HUGS)) You dad sounds a lot like mine...

[Linda661]

Yeah, low O2 levels can do that too....forgot to mention that one. Glad to see that you are getting some answers though -- sounds like things are on track, at least.

Hang in there; many hugs,

Linda

[Lovemypresley]

Posted: Tue Apr 25, 2006 11:24 am Post subject: be firm

Debbie, something you will learn here quickly is that you MUST be aggressive...the Drs. and nurses and hospital work for YOU>>>question them, if you have any trouble go to the patient advocate ASAP..do not leave her alone, as someone said...ask for a consult with another Dr. demand to see her test results and that they are doing the right tests...when she comes out os this make sure you have a durable power of atty. for her healthcare.

sending prayers of strength and courage and throwing in a bit of "bite" for ya

Stephi

How do we go about getting POA?

[Lovemypresley]

I saw a change like this in my grandma when she had sepsis. Now, I also did see a change, literally within hours, in my dad, when his LC metastasized to his brain stem. My grandma was belligerent, didn't know where she was, kept telling people "bull$#it" when they told her she was in the hospital. My dad woke from a nap one day, and acted strangely every moment after that. He started by urinating in the oven, and told my mom he couldn't find the toilet. Later she found him urinating on the front lawn. In the hospital he kept picking up the remote and removing the batteries, then he's change the channel to nothing but snow. I am honestly glad this only lasted a few days before he passed away; it was unbearable to watch.

I think the "sundown syndrome" is completely unacceptable. I'd be furious if I heard something like this. What is with doctors and nurses? I know how hard it is to deal with this, and sometimes you feel like you have no fight in you, but please, dig deeper and I do hope you get some answers. There is a reason for this...and "sundown syndrome" ain't it.

Good luck,

That's how he was...first he asked me why they were playing a song over and over, then he saw numbers on tv and tv wasn't on, then he saw tubes at the end of his bed, then a kid with cancer, called my mother asking her if she was in the hospital...very very sad. and Yes, I'm still so livid over Sundown. It took everything in my power not to walk up to that man this morning and tell him off. As far as being incoherant, I had read where that happens near the end, sort of like nature's way of protecting them..I asked his dr. about that today and he agreed. I think it's due to a combination of several things going on.

Hugs to you <3

[Lovemypresley]

Yeah, low O2 levels can do that too....forgot to mention that one. Glad to see that you are getting some answers though -- sounds like things are on track, at least.

Hang in there; many hugs,

Linda

OH yes, the dr. changed his oxygen from the nose kind to the mask with the bag? That has helped. He's having such a hard time breathing it seems. His chest sound awful..full of congestion, wheezy...they did give him a breathing treatment today, after I told the dr. to order it. God, maybe they should start paying me! LOL

[mamasbabygirl]

Debbie,

So true, so true.

[Stephi]

good for you Debbie!!!! Maybe all that you have done so far will help him improve. As far as the power of atty. the patient co ordinator can do this for you. If your mom (or his wife) is still living, then she is automatically the one they will ask..but it doesn't hurt to get one with your name on it also, for them both..I am an only child and my dad is deceased. My mom has pc and while caring for her in hospital, I collasped with heart failure and a heart attack and was put on a vent for 4 days...it was frightening...since then I have one and my oldest son has one on my mom..I have one on myself and my husband with children as secondary. They must sign them though..so your dad will have to be better to do this. It only involves healthcare..a notary or atty. must do a regular power of atty. for banking issues, etc.

I will keep your family in prayer sweetie, that he will improve, and you will get some rest.

Stephi

[karen335]

Debbie,

If you can get a 2nd opinion, Do it. My father was admitted in AZ with pneumonia and they gave him meds that were not compatable. I was told this by the pharmacist at the hospital. He didn't have cancer, the meds made him incoherant and unable to talk, walk or eat or drink, he would choke. It was really frightening.

You father's condition and downward spiral does not sound right. Especially in such a short time and he is too young to be doing so poorly...

Please keep us posted. We are here to help if we can.

karen

[adela]

Debbie,

I am so sorry for your difficulties now. I hope your father can be comfortable.

Take care.

Adela

[TamHol]

Debbie,

I'm so sorry to hear everything and all so much so fast! I found that some doctors forget the basics and personally like to remind them of them once in awhile. Respectfully of course I would ask about oxygen and blood to the brain .... remember when you spun around in circles as a kid ... same basic result! My Dad with simple pnemonia was confused, disoriented and even beligerant. It was a bad dose of pnemonia but had simular effects, as it should, the brain is cut off from maximum source of oxygen "somehow".

Don't be afraid to point out the obvious and make demands of an IV and such things. These are the basics of medical treatment .. your not asking for anything they can't provide or have in stock.

Tammy