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Keysey 02-28-2012 01:02 PM

Catheters, Oxy, and Dementia... oh my!
Below is a post on my dad's care page regarding yesterday's craziness. He had what I was told was a routine office visit. Come to find out they did a TUMT. I had to look that up but anyways, it requires a catheter for several days. It also generally involves some sort of anesthesia. Dad drove to the appointment and home. About 20 miles each way. I didn't know he needed someone there. So he calls me and reads me some paperwork about how to remove a catheter and is asking me when he should do that. I told him not to do anything and called the doctor's office. Yesterday, I was told by a nurse there that it is routine for patient's to remove their own catheter. Ummm...okay I guess if you don't have cognitive issues that would work out better. Today, I'm told that is not the case; rather, they have the patient come back into the office to have it removed. On top of all of this, they gave my dad oxycodone. That was removed last night by his neighbor as we were all concerned he might overdose. So that was my day with Dad yesterday.
Last night the calls from my siblings began. My sister saw my post on ******** regarding all of this so she called freaking out and talking lawsuit. Apparently, she promptly hung up with me and called my older brother. He called my dad and told him that the oxy was going to be removed then called me wanting to know why I didn't tell him all of this. I was stunned. I guess they really just don't realize how much I do all the time. If I called them every time something happened we would be on the phone a lot. But they made it clear that they wanted to be left to their own relationship with dad. So now everyone is calling me, everyone is upset, and I have to get the neighbor to go get the oxy. My older brother called me back after that happened, informed me I better call the doctor's office today and let him know what they said. If he didn't like their answer, he would call Dad's attorney and file a lawsuit. He ended the call, "Well, crisis averted. Talk to you tomorrow." REALLY??? What crisis does he think he averted? He got my dad all worked up last night, caused a lot of confusion, ****** me off, and just generally made a lot of stuff happen that was unnecessary. Anyways, I needed to vent.

Letter I posted on care page today:

Okay...first things first. Dad is fine this morning and was very relieved to be able to drive. Didn't seem any worse for the wear and his catheter seems to be working as it should. I was able to make an appointment for Dad at the Wewoka clinic for Thursday morning at 10am. He will have his catheter removed at that time, following his appointment with Dr. Chessler. I called the urologists office and asked to speak to the office manager. I was told she is out until tomorrow and left my name and both phone numbers. The lady that answered asked what was going on in case someone else could help. I gave her a brief overview of the issues and she put me on hold. She came back to tell me they were pulling Dad's chart and that she had spoken with a nurse who said Dad told them he had someone to drive him. We spoke a little and she put me on hold again. This time she said she spoke to a nurse and that nurse said Dad was not given demoral (which I guess is what they normally give a patient for this procedure) because he told them he didn't have anyone to drive him home. I pointed out to her that she had told me two different things in less than 5 minutes. She went on to tell me that Dad has an appointment they made for him at 0845 Thursday morning to remove the catheter. I informed her that I made that appointment after finding out he had the procedure. I also told her that the nurse yesterday said patients routinely remove the catheter themselves and that he had papers explaining about cutting the tube and removing the catheter. She said he must be confused (ummm, yeah) and that must be just a paper explaining how they will do it. I told her that it needs to be VERY clear that he has Alzheimer's and lives alone. When the need arises, there are people who can drive him to and from appointments and that if I had been told about this procedure, he would not have been alone. At the end of the call I told her that I would still like to speak to the office manager as I feel that Dad's safety was put at great risk yesterday and until that catheter comes out, he is still at risk. So now I wait to hear from her tomorrow. She has until 1pm my time to call or I will place a call back. If any of you have follow up questions, feel free to ask. I chose to give you all this information this way so I didn't have to repeat this story. Dad is not bowling today. He will meet with the doctor that diagnosed his dementia on Thursday morning and I hope to be able to speak with the doctor before, during, or after. Things are going downhill right now and I think the doctor needs to give us some guidance. My personal opinion is that Dad needs to move here this summer, if not before. These things are going to become more frequent and there are a million other things that could go wrong as well. Love, Lee

ninamarc 02-28-2012 02:29 PM

Re: Catheters, Oxy, and Dementia...oh my!
[QUOTE=Keysey;4936021]Below is a post on my dad's care page regarding yesterday's craziness. He had what I was told was a routine office visit. Come to find out they did a TUMT. I had to look that up but anyways, it requires a catheter for several days. These things are going to become more frequent and there are a million other things that could go wrong as well. Love, Lee[/QUOTE]

My FIL had this treatment (the microwave treatment to shrink the prostate) and he is fine now. This helped him a lot and so he does not need the catheter now (rarely). At that time, Apr-June/2010, my FIL had a bad time having catheter. First of all, he stopped urinating in the hospital. It turned out that he had enlarged prostate and a weak bladder.
So the whole thing started. Since there is no way for him to have a surgery like young or normal guys have (a guy with dementia cannot go through this surgery at all), my FIL had this treatment. My husband was asked by the urologist and my husband approved it. Well, now I know it worked, but back then it was horrible. During the whole process for 20 minutes, he was yelling and begging my husband to let him go. It was warm and had pressure "pain" and he failed to understand why. My FIL didn't know what was wrong anymore. As I recalled, he was told to take Tylenol if he has cramps.
So it was horrible. But if we didn't allow this microwave stuff, he would still have the catheter now and would be more miserable.

I guess your siblings are thinking that the doctor failed to ask for permission. But they asked your Dad and he said yes. I guess they felt he is still competent enough... Doesn't the doctor ask the POA or your brother for permission also?

It started from enlarged prostate. Not sure what happened to your Dad - what was his problem and etc. Yes, my FIL had 1 month of catheter and had cramps but now he is OK. Yes, it was like a nightmare.

No, this thing is not a routine, no, the patient cannot take it off. It has to be taken off by a skilled nurse. if he pulls it out by accident, he would get UTI. I am surprised this was done without any prior reasons or situations? Maybe your Dad failed to tell you guys? Your Dad cannot be alone now with the catheter because he may pull it out. Hire a caregiver to watch him now 24/7. My FIL had caregivers 24/7 back then.

Sorry that your family has to go through this.


Keysey 02-28-2012 03:07 PM

Re: Catheters, Oxy, and Dementia...oh my!
I was aware that he has an enlarged prostate. What I wasn't aware of was that they were going to do a procedure on him yesterday. I am his POA along with my older brother as well as his emergency contact. These people know who I am and what the deal is. My uncle has contacted a home health agency to have someone go evaluate my dad. Not sure when that will happen.
The procedure, I understand the necessity. I'm upset that we were told it was a routine appointment. And I don't like the inconsistent stories I am getting.
Thank you for sharing your story with me. I'll update when I know more.

ninamarc 02-28-2012 04:51 PM

Re: Catheters, Oxy, and Dementia...oh my!
I can understand that the family is upset. But at this point, a lawsuit is wasting time.
You should complain to the doctor about this. The way they told your Dad only without informing you guys. He knows your Dad has AD... For us, the doctors always make sure my husband know about it. Now even in the NH, the doctor still asks my husband for permission for some medications.
You need to have a document in the office to ensure they inform you before they start doing anything on your Dad. He is incompetent now but he may seem normal.
You also need more money to hire caregivers and move and etc., a lawsuit can only waste the money.
If the siblings really care that much, they should make sure your Dad is well taken care of. Your dad cannot live alone anymore. It is also not the neighbor's job and the neighbor should have asked the doctor about the med. If your Dad has cramps, it will be unbearable for him due to his dementia. My FIL had cramp once and he was hurting so bad that my husband got upset. The office just told him to take tylenol. We went back to the office for his cramp and nothing was wrong but my FIL was confused by the whole thing.
Frankly, if I had known it is such ordeal, we may have reconsidered the treatment.


Keysey 02-28-2012 05:01 PM

Re: Catheters, Oxy, and Dementia...oh my!
I agree with every word you typed. Dad seems to be handling the pain ok. He has an appointment Thursday to check in on his Alzheimer's. No lawsuit. I have made some preemptive calls regarding possible actions. We need to spend that money caring for him now and in the future. The office manager and I will speak tomorrow. Hopefully, she and I can get this settled. If not, I can report it to the medical board.

Gabriel 02-28-2012 05:27 PM

Re: Catheters, Oxy, and Dementia...oh my!
Keysey... a word to the wise for the future. Please make sure somebody goes with your Dad to the doctor each time he goes. He will say what he believes in the moment and might have told one person he had a ride and somebody else he didn't. He doesn't understand what they are telling him and definitely can not tell you what he was told. It is just safer to make sure somebody is with him.

I was actually not surprised that a Urologist would do this. I was waiting for that piece of information that it was not his diagnosing doctor. There is something about the dementia diagnosis that many doctors, specialist in particular, don't get. They just proceed with routine treatments without regards to the fact that the patient can't understand. It's wrong and they need to know it's wrong. In your conversation please impress upon them that your Dad has dementia and they need to know what to do with the next dementia patient.

As for permission, as far as the doctor determined your Dad did give permission. Doctors to not usually as children for permission to treat parents :) Yes, you and your brother have the POA but when Dad comes in alone, even if he is confused, it is his permission that they need to do a procedure on him. The confusion on your Dad's part is not a result of the doctor not doing what he should.

As for the siblings... don't you just love them :) They fly in at the end of a horrible day and cause chaos and confusion... then think they have done something good. Then they go back in their blissful life of denial. I have been there and understand. Just know you are not going to change them. Therefore you have to let their rants go in one ear and out the other. My standard answer to drama is... "Sorry you feel that way!" How about showing up and going with Dad next time :) If they think they might have to do it they will usually back down! If not.. just be unavailable.

I so use the popular social media for communicating with my sisters but I have created a private group with nobody there but the four of us. That way they accept it as appropriate notification because it is the way we communicate. I don't stay on the phone because I don't have time to make four calls every time Mom burps. I just put one post on the private groups and they can read it and respond that way.

I do hope you get all the loose ends of the chaotic day wrapped up and the siblings settle back into their "lives". Yep, you need to get Dad in a different living situation :) Your feeling on that is absolutely right.

Love, deb

Keysey 02-28-2012 06:04 PM

Re: Catheters, Oxy, and Dementia...oh my!
Just got off the phone with my older brother. Geez! Never hear from them and suddenly I can't get away from them. He wanted to know what happened today so I nicely told him to read the care page and then call me back with any follow up questions. He said he read it so I asked what he wanted to know. Well, he wants me to make sure I drive home the point that it was malpractice, and use the word lawsuit a lot tomorrow. I pointed out to him that I don't think it reached the level of malpractice and I would not threaten to sue. The whole point of making this call to the office manager is to make sure this doesn't happen in the future. I found an online complaint form to the Oklahoma State Medical Board. I haven't decided whether or not to use that.
I told my brother that from now on, Dad will have someone at his appointments. Thanks for the advice. :)
My older brother mentioned the oxy again and I said that as far as I knew he only took the pill my older brother told me about. He had the audacity to say I told him Dad took it. So I swept it aside and moved on. They are driving me NUTS!!
My sister and my older brother both have knee issues. My sister must have 2 knee replacements this summer and my brother, sometime in the next 15 years. More reason for Dad to come here.
Oh boy! I got what I wished for...sibling involvement. Now I am kicking myself. They are 2 years behind me in the dementia realization and it's making things tough.
Dad sounded great when I talked to him tonight. Still confused about the catheter but hopefully, he will be okay until tomorrow morning. He thanked me for taking care of all these things for him and said he is lucky to have me. I told him luck has nothing to do with it. Love does.

ninamarc 02-29-2012 07:37 AM

Re: Catheters, Oxy, and Dementia...oh my!
I thought your Dad is where your older brother is? Should he be the one that is more responsible about being with your Dad at the appt.?
I am confused that how come all siblings put it on you. He is the one nearby.

In a way, the office ignored your POA although not malpractice. Your Dad surely can tell the doctor yes he understood what is going on. Actually it was quite odd because he was not in emergency for this treatment.
My FIL was in that urgency because he could not function anymore.

If you can have a second opinion or a new doctor, the doctor may be able to comply with you. My experience is that if the new doctor starts with you guys first, he is more likely to talk to you or get into the POA or health proxy stuff. If the doctor sees Dad first then naturally he deals with Dad directly as you guys are not in the picture.
Your brother just has to show up with Dad.


Keysey 02-29-2012 07:51 AM

Re: Catheters, Oxy, and Dementia...oh my!
The biggest challenge in all of this is that none of us lives nearby. I live in Florida and my siblings live in Kansas (6 1/2 hours from Dad), New Mexico (about 11 hours), and Boston (a plane ride). What has me annoyed is all this time they have not believed me about his diagnosis (my little brother has been on board for about a year). They also wanted me out of their relationship with him. I used to give updates but they always turned into an argument so I stopped. Now all of a sudden they believe me and have decided to take things into their own hands. Which would be okay if they would just use their brains for a minute. If I don't know what they are doing, I could be doing something else entirely. This is confusing for Dad and guess who he calls? Me. Which is fine. I don't mind helping him. I don't mind calming him down. It's the needless anxiety and extra work they are causing that I mind. And them telling me how to do stuff now. I've been at this for almost 2 years. I'm certainly no expert but I'm pretty sure I know how to hold a conversation and get my point across.
I'm just frustrated.
I've called his primary doctor and am waiting on a call from him to explain the situation. I asked that they send the other doctor's office official notice of Dad's condition. I'm also awaiting a call from the office manager at the urologist's office. She and I will be hashing out the situation from the other day. My goal in this is to make sure this doesn't happen again. The first time, a mistake. Thankfully no one was harmed. But now the office manager will be on full alert that someone is watching. I've taken steps to get someone at all of Dad's appointments. I have also begun searching for doctors here. He will be here soon. Not sure when yet, but soon.
My older brother thinks Dad is going to balk at moving. I agree. My older brother thinks I will cave to Dad's demands for a long time. I will not. He wants to know how I'll get him to move if he says no. I told him I will pick him up and put him in the car if necessary but that I will not stand by and do nothing for fear of upsetting Dad.
I officially unwish that my sibs would get involved. Or at least that we work together.

ninamarc 02-29-2012 07:58 AM

Re: Catheters, Oxy, and Dementia...oh my!
Sorry I got confused with the sibling issue.

Actually I think they have done a little harm. You guys were not given the option of choosing the treatment for Dad. There are pros and cons for the treatment and none of you were notified. I would move him ASAP and get rid of this office. Some doctors are more friendly and cooperative with the family who deal with dementia.

I mean none of you including Dad know why it happened. Why did he need this treatment so soon and etc. Did Dad ask them to do this procedure? This procedure is similar to a same day operation although he was alert all the time.


Keysey 02-29-2012 08:40 AM

Re: Catheters, Oxy, and Dementia...oh my!
In December I found out that they needed to do some more testing to check on the size of his prostate. He has an appointment in May for a procedure. Past that there was no notification of a procedure being done this week. As far as I knew they were still investigating and determining a course of action.
I told the lady yesterday that she could have asked my dad if the moon is pink and if he didn't hear her he would likely say yes or no. He has severe hearing loss and is very embarrassed about it. I feel like they messed up. But I will give the office manager an opportunity to explain this to me. Dad really likes the doctor and I'm not sure what else is in the area. But I've alerted his primary doctor, too.

ninamarc 02-29-2012 08:49 AM

Re: Catheters, Oxy, and Dementia...oh my!
Even if your Dad likes the doctor, it does not mean the doctor is doing right. My FIL liked his former doctor while he had no idea what was going on. Just because he was smiling to him and talking nice? Our home care nurse hated that doctor.
Your Dad is incompetent and it does not matter he likes the doctor or not. He would not even know if they screw it up.

Now dad needs a month to recover, you may need to focus on his care now to make sure he does not get UTI. Also, don't trust him on the phone. He may tell you he is OK but after he hangs up the phone, he may go play with the catheter attempting to pull it out.
My FIL hated the catheter a lot and he was crying and asking my husband to do something and take it out. (Well the treatment was the solution but it didn't stop the catheter yet...)
It really hurts to put on the catheter and so you need to make sure he does not have to put it back on again.

Praying for him and the family,

Keysey 02-29-2012 09:30 AM

Re: Catheters, Oxy, and Dementia...oh my!
I know you're right. Dad's primary doctor's nurse just called. She faxed the official diagnosis paperwork up and said she talked to them about the incident. She was told they did not give him an anesthetic because he didn't have a driver. It must have been painful. I told her I appreciated her calling and making them aware that they are also paying attention. Going to the grocery store and then making that call to the office manager.
The catheter is being removed tomorrow morning. My uncle is aware of all of this and has called in home health. That will be a battle but I'm ready...I think.

Gabriel 02-29-2012 09:39 AM

Re: Catheters, Oxy, and Dementia...oh my!
Sometimes we wish for something we really don't want and then wish it would go away when we get it. :) That is why I say that expectation are not always good for us. Yes, you did wish for their cooperation but what you truly expected was for them to act like responsible, intelligent, knowledgeable, caring siblings who would work with you. We wish for involvement but we expect the involvement that fall within expectations. After 15 years stuck in dementia land with three siblings, I can tell you that siblings are who they are. They are going to give you back "their" perspective and not yours.

I repeat that a POA does not negate your Dad's ability to give permission for himself. His dementia and hearing difficulties may or may not have been noted in the chart information the urologist had. Even if it was, Dad was there alone and they had to take Dad's word. Sad to say Doctor's do not take Alzheimer's or hearing loss into consideration as they should. Even with the rampant rise of Alzheimer's, I think much of the medical profession is very unaware of what that disease does to a person. There is truly nothing to sue over. They proceeded as they would for any other patient that came into their office that day.

As for the pain medication.... I do think doctor's over prescribe pain medication. Why did Dad need 30 Hydrocodone for a tooth extraction? For the life of me I never figured that one out. But they do leave the responsibility of taking the pills on the patient. With nobody there you Dad said ok to the prescription and had it filled. It's easy to know how many he took. The pill bottle the neighbor has will have a quantity on it and they can count the pills remaining. That is how I figured out Dad was over dosed on Xanax and how many Mom had given him. That is a story that might help...

We knew Mom was having problems but she had not been diagnosed yet. Mom brought Dad (who we knew had vascular dementia) to my sister's house for a Thursday night college football game. She was distraught when she got there because of something that had happened. We never did get all the details of that day which is common in dementia. They left after the game and drove back home. Friday she called upset because Dad was "misbehaving". So she called his doctor, got a prescription for Xanax, and had it filled.... 30 pills. 1 a day (1/2 at a time) was recommended but he could have 2 pills a day. Should have lasted at least 15 days. She said she gave him 1 on Friday. From there it was fuzzy but she swore she only gave them as prescribed. Then she called to say Dad had a stroke but the doctor's couldn't find it on the MRI. They had sent them back home from the ER. HUH? So I sent them back to the ER. This time they kept him for symptoms of unknown origin. During this time I am driving the 4 hours home. One of the first things I did was find that pill bottle and count the pills. There were less than 10 left in the bottle!! Dad had no stroke, he had a massive Xanax overdose that took 5 days in the hospital to get over.

The doctor's that prescribed the meds did nothing wrong. The ER did a complete work up but Mom had not brought the Xanax bottle and they had no idea he was taking it. They had him on medication in the hospital that was unneeded and did procedures that were unwarranted for his condition but they were working in the dark not knowing all pertinent information. They were even in the process of ordering rehabilitation for Dad!! Bottom line, the fault was in the fact that Mom and Dad should not have been left to deal with life alone. That is the day I stepped up, got the diagnosis before I left, and had in home care to monitor medication and other points. As tough as it was, it was my wake up call. With nobody there to help your Dad... this stuff is going to happen!

I had to smile because your brother's questions sounds like questions I have had before. What if Mom doesn't want this. My answer. Well Mom has dementia and therefore she is not capable of making that decision. Resistant or not, you never know how they will react. Dad didn't want to move but once they went to AL he was happy not to have "all that responsibility" on his shoulders. Mom on the other hand actually signed the admission papers (why I don't know but my sister did that) and immediately went into hysteria that lasted for months because we were holding her prisoner. Neither had memory of the before... only the moment.

I do understand the siblings all being on different pages. Been there and to a degree still there even though Dad has been gone almost 2 years and Mom is in late stage Alzheimer's. I am the boots on the ground person but I got a lot of advice about what to do. Much of the time I just say ok, do what needs to be done, and when the crisis blows over so does the anxiety on the part of the siblings. That is what you are seeing.... their anxiety, frustration, and guilt that they are not "doing". Not being on the same page and understand the situation causes them to strike out in all the wrong directions. They give you ultimatums that make them fell like they are doing something and smooths over their emotional turmoil. It doesn't help but being the point person for all this, one of your jobs is to ignore their emotional rants and do what is good and right for Dad :) Assure your brother that you will "Do what needs to be done!". You are not agreeing to do what he demands... just assuring him that you will handle it. Yes, I would remind them that Dad has dementia and therefore things get confused because nobody is with him... which leads to the fact that he needs to move. Use this to your advantage. :)

I do hope your Dad does ok and that you can get him moved to your location soon!

Love, deb

ninamarc 02-29-2012 11:12 AM

Re: Catheters, Oxy, and Dementia...oh my!
I am not saying the doctor did wrong.
However, a doctor is not a caregiver so certainly he would depend on the family or caregiver to tell him that Dad cannot understand.

It is the issue of the awareness as well, but to defend yourself, one has to be with Dad. Uncle should be with Dad. Someone from the home care service should be with Dad.
Dad will tell you he is OK, but it is not true. Many times my FIL told my husband he was Ok and then minutes later, the caregivers would often call back for something.

Make sure someone is with him until you move him.


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