She has rights and so does the doctor. She doesn't have to do what he says. He doesn't have to accept her as a patient. In any event, she's not getting the care she needs. Time for a change.

From your description, your DD needs to be somewhere else. What you're describing isn't small-town stuff and the doctor you've got isn't up to the task. Do what you have to to get closer to a place that has the services you need. There really isn't an alternative.

The only way we could go to a city is by DH getting a new job or waiting until this one transfers him somewhere else which can't happen until year end, if it even happens. Because of DD, he's been looking elsewhere, but it hasn't happened yet. And we are not independently wealthy so unfortunately, we're stuck here.

One thing that stands out is that she thinks she needs the feeding tubes and he doesn't. Usually it's the other way around. Maybe he is sincere in thinking that she would do better if she were to be without them.

Can you arrange a discussion with him as to why he feels the way he does? It could be that he has very valid reasons for his opinion. Perhaps her medications need reviewing. Is she on insulin for her diabeties?

DD has been on insulin for 19 years, since the age of 5. We had the discussion about the tubes when the doctor said he thought she was too young to have them (even though she's had gastroparesis for 6 years and was young to get this disease). We've tried to set up another meeting or even talk to him but he won't talk to us about the way he's giving the medications or the tubes.

Won't talk to you? OK, hold on. That's a different issue.

Your DD, at 24, is a legal adult. Are you being excluded because you don't have medical power-of-attorney and the Dr. has confidentiality issues? Is DD legally competent? Doctors do, indeed, have troubles about such things. He may be in a bad place professionally about that. Better find out. Sounds to me that a new understanding/relationship among you needs to be pursued.

DD is legally competent and very bright. She has tried to advocate for herself but we've found that she needs an advocate. If they come down hard on her without me there, she backs off and is afraid to confront them and just say no to them.

Today, we finally found out why her blood sugars have been so high all week. The doctor had started her on a new medication which turned out to be steroids. He thinks this will help her gastroparesis which is true for non-diabetics. But steroids raise blood sugars and DD had tried this type of therapy a few years ago and stopped it because of the raise in blood sugars.

The doctor is planning to speak to DD's diabetic doctor about raising the insulin amount and have DD keep taking the steroids. I just wish this conversation would have happened much sooner in the week.

The doctor still won't change how the meds are taken.

"DD is legally competent and very bright."

Well, this is troublesome. What's the doctor supposed to do upon upon obtaining her consent/agreement to his/her proposed course of treatment? You did say he/she is consulting another doctor as well. What is it that you want to have happen? If she is dissatisfied with this Dr., her only alternative is to discharge him/her and get another one. If you say she can't do that because of where you live and/or other circumstances, I don't know what further to suggest.

The point is that the doctor did not even try to obtain her consent or agreement to his proposed course of treatment. The only discussion that took place regarding this treatment was when DD said that she was completely against giving up the tubes for medications and food when she is having bad days. The doctor knew this and still decided to change the course of treatment.

In our area, many doctors (including DD's own GP) do not do hospital or nursing home visits and leave it to the hospitalists. This is the situation we're in right now. We felt lucky that this doctor agreed to care for DD. Becasue if he hadn't agreed, DD wouldn't have been allowed to go to the nursing home.

How is it, exactly, that your "legally competent and very bright" DD allows the doctor -- or ANYONE -- to treat her in a way she does not approve of?

Sorry, I do not know what a "hospitalist" is so have no idea what you mean by the "situation" you are in right now.

I am confused by the what you're attempting to describe and believe my opinions, therefore, are likely useless to you. I do hope you find better advice than I am capable of giving.

A hospitalist is a doctor or group of doctors that take care of the patients in a hospital or nursing home. They do not have a private practice. The patient's primary care doctor will not visit the hospital or nursing home and lets the care be given by a doctor working there. The 2 hospitals in this area work this way.

Right now, she hasn't personally seen the doctor since he made this decision and when she spoke to him on the phone regarding the changes, he was very abrupt to her and acted like she was disturbing him. The doctors do not have to visit the nursing home more than one time each month.

Are there any alternatives to your daughter being in the nursing home? Would some kind of home health care work or is there another skilled nursing facility in your area?

Does she normaly live with you? And, if so, what precipitated the need for her to transfer to a skilled nursing facility? Were there any other options available to her?

Also, were you present when your daughter said that she did not want her course of treatment changed? Perhaps she was not as clear and forceful as she remembers.

I realize that this is a difficult situation for her and for you. Perhaps she needs an advocate who is familiar with all the aspects of the law and the medical practices in your community. Do you have any organizations nearby that could advise her and you?

Shambo, I'll try to answer your questions. There is only one home health agency that the hospital had set up a few months ago (or they couldn't send her home). We were not more than an hour out of the hospital and we got a call from the agency saying they refused to give her services even though they had taken care of her before. They didn't give me a reason and didn't care even though I pleaded with them. The only health agency that we ended up going to was one that we had to drive over an hour each way to get to. They won't come to the house.

This is supposedly the best of the 4 nursing homes in the area and three of them are owned by the same company. The worst one is owned by another company.

The reason she is in a nursing home is because she has been in the hospital almost every week since December. At that time, she had pneumonia in 2 lungs and in ICU for 18 days. Then she developed a lung abscess which had to be taken care of with IV antibiotics through a pick line. We didn't have home health so we had to make the one hour trips into "town" to the agency. The abscess finally got small enough that they're not concerned with it but her blood sugars and gastroparisis have since been out of control. The hospitalists finally told her that she couldn't keep coming back there and should go to a nursing home for care until she got better.

Yes, I was present when the discussion with the doctor concerning her tubes was made. She told him straight out that she prefers to use her tubes for medications because of her 20% digestion.

I do agree that we need an advocate and there the patients' bill of rights is posted on the wall at the nursing home with a phone number to call. I'm just afraid of the ramifications if we do it while she's there. I've read horror stories in magazines when a daughter tried to help a mother and was refused to even see the mother at the nursing home.

I dont know what the answer is to your problem, but if you can not get help setteling this try calling your daughters Ombudsmen, they are a sorta go between the nurseing home and the pt, here is a link click on your state

http://www.ltcombudsman.org/static_pages/ombudsmen.cfm
Hope you can get some help.
oddie

Marie, such a difficult situation! I can understand your reticence regarding calling an outside advocate, but I think it may be the only solution. And Oddie's ombudsmen program sounds worth investigating too. Does your daughter receive any kind of disability and/or social security? Perhaps you could investigate county, state, or federal resources too.

I realize you're afraid of "making waves," but at this point, I think it might be necessary. You could also contact the nearest larger local newspaper. If you were discriminated against in any way, you could let them tell your story. I live in the Sacramento, CA area, and people with serious medical care needs or complaints share their stories all the time with our newspaper. Usually, helpful agencies & individuals respond.

Wish you well...

I still haven't contacted an agency because of the fear of backlash but here is an update. It feels good just to be able to vent.

We had a meeting with the current doctor yesterday and he told DD that his plan is for her to have the feeding tubes removed. It was a difficult decision and very hard surgery for DD when she had them put in on the advice of several physicians in the hospital a year ago.

The doctor said that if she disagrees with this she'd have to leave the nursing home because there would be no reason for her to be there. I understand that he thinks she's too young to have feeding tubes but I don't agree with him that she can "will" her way to dealing with all her pain and throwing up. To top it off, her blood sugars are still very high with fluctuations in ketones, moderate to small. And she's been throwing up for 3 days straight. He wasn't concerned with this at all, just told her to look for the sunshine and set up an appointment with a psychologist for next week.

We can't yet leave this college town and we've run out of doctors who treat patients in facilities. But now, the doctor is threatening DD if she doesn't agree with his plan of action.

Is this Dr. actually qualified to treat your daughter? in other words, is he a gastroenterologist and an endocrinologist?

Based on your description of her problems, it sounds as though those are the specialists she needs.....find out if this Dr. is qualified to treat her problems.

Next, demand a second opinion - involve the head of the hospital, if necessary. I understand you don't want to 'make waves' but sometimes you just have to.

The next step would be to involve the judicial system to obtain some sort of control over your daughter's medical care and possibly demand the Hospital or Medical Board for your state to investigate his treatment plan.

Doctors are only human (regardless of the fact that some of them act like they are gods) and not all doctors are actually good doctors.

Good luck, CM

The chief nurse was in the meeting with the doctor, DD and me. We have spoken to the administrator about a CNA who didn't tell the nurse that DD was going into a low blood sugar which ended up with her having a seizure because it wasn't taken care of in time. The administrator fluffed the whole thing off.

According to the yellow pages under physicians, this doctor treats older patients. He said that he spoke to a gastroenterologist who agreed about taking off the tubes. We've tried, in vain, to get a gastroenterologist to take DD on as a patient but they've all refused, saying that her case is too complicated. DD does have an endocrinologist whom we trust but she doesn't visit the nursing home. We have seen DD twice in her office in the past couple of weeks. She is not the doctor in charge, however and refuses to take on that role because she doesn't visit nursing homes and has an extremely busy practice. The current doctor said he'd be calling the endocrinologist this week.

How do I involve the judicial system? In my state, a nursing home doesn't even have to take in a patient so they can make a patient leave just as easily. The nursing home staff and doctor keep saying it's the insurance company needing proof of action like taking out the tubes when in fact the reason the insurance company approved DD to come into the nursing home was because of unstable blood sugars.

During a meeting with the nurse and DD early this week, a comment by the nurse was made. She said that DD's original GP has at least 10 patients in the nursing home. He just doesn't come to the nursing home, they have to go to his office for visits. It's around the corner from the nursing home and so that's not a problem. We had, as usual, been told the wrong information by the nursing home staff and by the hospital's social worker when she said he couldn't be her doctor because he didn't go to the facility. DD's diabetic doctor had also been told this by these people. Anyways, I called this doctor's nurse the next morning and she said "Of course the doctor will see her". We made an appointment for the same morning which went well. The nurse was visibly pissed at the information we received and said he had 12 patients there. I think she was wondering how many of his patients were being turned away from him. The doctor is not against her using the tubes for her medications.

That day, 2 days ago, held such promise. But within an hour of leaving the doctor's office, DD threw up for the third time that day and then again. I had to go to the diabetic doctor's office that afternoon to hand over the past few days of DD's blood sugar numbers and I spoke to the nurse at the office. When she saw the numbers she said that DD had 2 blood sugars over 350 that day and needed her ketones checked. DD was usually pretty good about reminding the nursing staff to do this but on this day, she was feeling so ill, she forgot. When I went back to the facility, I had them take her ketones and she had high ketones and her blood sugar was again in the 450's. All they kept doing was to say to drink lots of water which we know is helpful. So is diet clear soda, we later found out. They called the diabetic doctor and she ordered an increase in the insulin. Then, DD dropped to 91. Imagine my surprise when she still had high ketones. The diabetic doctor admitted her to the hospital right then. She said that the steroids DD was on was the cause for all these problems DD has been experiencing. Also, she hadn't been told about the steroid use so she had no way of knowing to double the insulin DD was taking. Apparently, this steroid is one of the stronger ones and not recommended for diabetics.

It took until this afternoon, 2 days later to finally get her DKA to finally not show up in DD's blood tests. But there is some kidney stuff showing up but the nurse didn't make it sound dangerous. She's still in ICU. Our plan was to go back to the nursing home with the proper doctors in place.

The social worker at the nursing home told me that I needed to call the social worker at the hospital to get her back into the nursing home. She gave me no reason to think it wouldn't happen. So, today, I finally tracked down the hospital's social worker and she said that the director of the facility said that DD could not come back there, even though she had a new doctor. The reason she gave was that DD's case was too hard for them. It only became difficult after DD was given steroids. She was improving so much before then. Besides, they have many diabetic patients.

I called the state ombudsman. The girl was so sweet and helpful. It turns out that the nursing home violated at least 2 patients' rights rules. The one I remember was about having to go to activities at certain times. Apparently, if a patient wants to stay in her room all day, every day, that's her right. But I know that the nursing home would say it was the doctor prescribing this. By law, in DD's situation, a nursing home would have to give her 30 days written notice to discharge her. They didn't even return a call to me to tell me she couldn't return, never mind giving her a letter to tell her about discharge. I think they honestly believed we would just disappear. The girl at the ombudsman's office called the administrator at the nursing home who finally said that DD could return. She said that tomorrow, Friday, the administrator will call me to confirm this. I pray that happens. According to the nursing home, the reasons they didn't want DD back was because of her non-compliance (they still blame her high numbers on too much food and not the steroids) and that DD's insurance company is managed care and has DD on a week-to-week and is slow in paying them. I think this is the reason. I hope the Minnesota office doesn't get involved tomorrow morning and tell DD she can't return to the nursing home.

Should DD go back to the nursing home, there will be a meeting next week and perhaps they will give DD a 30-day notice at that time but this at least buys us time. Maybe 30 days will be all DD needs to get better. I hope so.

I should have called the Ombudsman Office much sooner. A nursing home can't hold it against you. They are there to help us.

I so hope the ombudsman can strighten things out for you, always remenber if your loved one is in a LTC and you can not get answers to your problems there is another person to try, I remenber in the nurseing home I worked for if the ombudsman was called, someone was in TROUBLE! I could be worng but I beleive they can not discharge your daughter without haveing another place willing to take her, check with the ombudsman on that, no they can not hold things aginest you but they can make your stay not so nice, I beleive you are on the right track to get the right help for your daughter.
I wish you all the best of luck.
oddie

You mentioned something about a nurse saying that she eats too much. Maybe I misunderstood, but does this mean that she does not get fed by the stomach tube, that she also eats...that she only uses the tube for medications?

I think that it takes a few days for the ketone count to drop as they have to be processed out.

The doctor who was assigned to DD would not let her use the feeding tubes for her nutrition needs nor would he let her take her medications in them. He wanted DD to sign a paper saying she would remove the feeding tubes as well as her insulin pump.

But since her original doctor is back on board and DD is back in the nursing home, he wants only tube feeds for a while and slowly introduce food back. That way they can get her blood sugars under control. The doctor in ICU said that she was doing well in the nursing home until the steroids were given. Everything went downhill from there.

Yesterday, I spoke to the nursing home administrator and she still kept saying that DD was non-compliant and when I pushed her for a definition of that, she said she was overeating. The doctors, however, disagree. The administrator repeated several times to me that she would refuse to take DD back but by law she had to. The law states that the nursing home must give a written notice 30 days in advance of discharge. She obviously broke the law, hoping we would just disappear. In the conversation, she also kept asking me to take DD to the one nursing home that is not owned by her company. The doctor said he didn't want DD in that facility. Obviously, it's worse than this one. This nursing home is supposed to be the best one in the area. There is a meeting next week with the nursing home staff and ombudsman to try to work out things. Now that DD is on tube feeds, she needs more than 1 month to get better.

One interesting thing that the administrator told the ombudsman was that one of the reasons they wanted DD out was because her insurance in managed care and goes week to week and is a slow payer. I'm betting this is the real reason they want to discharge her.

Suggest remaining tenacious. Yours will be the squeaky wheel that gets greased.

Hi marie, i read with insterest about your daughter, and now being a widow of a diabetic and going through a ton of things when Al was in the hospital i have to agree with Agnespuffin. although i live in canada, in a large northwestern ontario city with a doctor stortage over 30,000 people where i live are without a doctor and must use the er or walkin clinics (we are lucky in this country as there is no or very little cost, only the rich pay).
One of Al's doctor's did not have hospital visiting priveledges and so he had to see a new doctor at the hospital, this doctor changed all his meds around and he was on rapid-nova insulin 3 times a day and nph at night and this was given on a sliding scale, which i had to give him every day of hislife (we were married for 25 years last Nov.). i will admit that i was glad when his old doctor retired this new one was more up on new meds. we also have a diabet. northwest, which diabetic goes to school and can bring another person alone. you would be surprised what foods can bring the sugars up. also and i know everone is different but Al had a white coat syndrom which made his blood sugars go up when he sees someone in a lab coat! also if the nurses didn't give him the insulin at his usual times he would have a reaction. i feel sorry for your family and your daughter and wish you the best.

ps agnes picked up joan hess and mary daheim at the library, the kichen will be there and so will the paint!

debbie

Debbie, I am so sorry for your loss and appreciate your kind concern. I am also Canadian and still have family there although I've lived in the States for over 1/2 my life. I often wonder if DD would receive better care in a major city in Canada than what she's had to endure in the States. Besides the worry of costs, it is obvious that the doctor/patient relationship is all important and that it is the luck of the draw no matter where one lives.

We had a meeting with the nursing home staff and 2 representatives from the ombudsman office.

I will offer a bit of advice to anyone who feels there are problems with the nursing home. Please call your ombudsman office. I shouldn't have waited so long. They are our advocates and are here to help all of us. Also, they are there to make sure the nursing home follows the law.

From the meeting, it appears that for now everything will continue at the nursing home. DD was moved to an extremely small space but the nurses seem better. Although DD has 3 different doctors say that it is documented that DD's blood sugar numbers went haywire due to the steroids (because of the time the steroids were started), the nursing home still says DD overate.

One snag almost took place. DD received medicare which starts tomorrow. She didn't request it; a letter arrived with the news. Medicare has its own rules and wouldn't have covered this long stay at the nursing home at this time. The ombudsman spoke to DD's private insurance company and they are from a union and chose to continue DD as the primary insurance. At least with the ombudsman on board, DD will be walked through Medicare parts A, B and D as well as Medicaid.

We can breathe easier tonight, finally!

Thank you all for your support through this very trying time.

Marie, i was reading in toronto's globe and mail, last weekend an advertisement from the canadian government (i did not keep a copy of it) and if you have duel citizenship )which your daughter may have if you are canadian, you might want to look into the canadian government site you might be able to get her hospitalization and health care for her, there were changes to citizenship in january of this year (i think the site is something like www.ocanadagc.ca

ps, we are all managing as best we can, Al's apple tree is not in bloom yet, it's been raining here so we're still inside redecorating )dd says we should have our own show, how to redecorate a room for 50.00! miss talking to all of you but i check in daily, youjust don't leave friends (only relatives!) debbie

Debbie, thank you so much for the heads up. I found the following article on the internet and was wondering if this is the one you are referring to.

Here is a link that might be useful: Article

Marie yes that was it. anythig is worth a try especially if there is no cost for meds etc. in ontario, if this is where youare from, people who are on social assistance (welfare), persons who receive in care (at home)nursing say, from the V>O>N> they receive a drug card and their meds supplies are free or a co-pay 2.00. the hospital is free. also there is the trillium foundation for the working poor who do not have health insurance
(I am lucky i get Al's through his work till in65 then the government takes over), also there is income tax for the disabiled (not only physically) and parents can claim their infirmed children and get ahuge tax break. there is also something that started just this week for the low income and older person thatlives in theirown home and can get free upgrading to their homes, only catch is you have to live in that home for 20 years or you must pay the remodel job back. apparently juvinile diabetics here in ontario can get a free insulin pump and supplies. enjoy your weekend i'm without a car so it's time to get intothat perennial garden that has been left for too many years! debbie

Debbie, DD is 24 so this needs to be done but I also have two daughters who are 26 and 27 (will be 28 in August). I will call the embassy on Monday and hopefully I'm not too late for these 2. I am so very grateful that you gave me the heads-up on this. I just assumed that since their father and I are Canadians, they could get their citizenship at any time.

Once DD gets her Canadian citizenship, do you know if she has to have a place to stay to pick up residency in order to receive the medical benefits? We are from Quebec but could she live in any province?

Thank you again. It was really thoughtful of you to think of DD.

hi again, i'm not sure about a place to stay, however, i do know that we have a large amount of immigrants living in our city, they are give money, free health insurance, a place to stay and free schooling (makes some of us wish we were not canadians). you might find out if perhaps a church maybe that you might have been baptised in if canadian is willing to sponsor you, you may also try a mpp's office (minister of parliament, in a large city like montreal or quebec city, i guess these would be like a senator in the states). many people fromourcity with the mills and elevators closing are moving to alberta and our ds friend is living there and got health coverage right away, also this is the only province that does not have sales tax. also youmight want to try human resourses and development canada, you have to call an 800 phone number but they should behelpful.

well it's off to take gracie for her walkie before it gets dark, enjoy your weekend! debbie

Thank you again Debbie. I will be making phone calls on Monday to find out how this all actually works.

Hope there's somebody to take care of me when I need it.

From my own experience, I'd say things in the U.S. are pretty messed up.