Hi Everyone:

Thank you for taking the time to read this. I’m sorry it’s so long, but maybe in its length it will help someone here…

At the moment I'm so hurt I just want to leave my husband and his "doctor" and go some place where the sun is shining and people care about one another or to die…

Here's what happened in as short a form as I can possibly make it:
My husband was diagnosed with Alzheimer's disease in March 2007.
At that time and for about a year or so prior he had a pea-size growth behind his left ear. I pointed it out to him and to his doctor. His doctor didn't think it was a concern.
By June of 2007 this "growth" had become infected and the infected area was causing his ear to bend outward. He was in considerable pain. I finally convinced my husband to go back and see his doctor. My husband hates doctors and the medical profession in general... including me, at times. I'm a retired nurse.

His doctor decided to do "day surgery" at the hospital some 60 miles round trip from where we live. The surgery was done by medical residents. Our hospital is a six bed remote tiny hospital on an island! It IS NOT a “teaching” hospital! His doctor "bopped" in an out every once in awhile to check on how things were going. They weren't going well. What was supposed to have taken about an hour according to the nurses wound up taking six plus hours... under LOCAL anesthetic, no less!!! By the time my husband was ready to be taken home he was so angry and in so much pain he declared that NO ONE was every going to touch him again! In spite of that I manage to convince him to go back for five days of “follow-up” care and IV antibiotics. This meant driving 60 miles round trip five days straight as well as having to go to work for six hours a day. I almost lost my job which we desperately need the income from over all of this.

The nurses prior to his surgery asked me if he had had any reaction to any medications in the past. I told them “morphine” and this is reaction will come when he starts to come out from under it. What did they give him for local anesthetic??? MORPHINE!!! By the time I made it back home with him he was like a raging bull trapped in a small barn… our truck… I almost turned around and went right back to the hospital, but didn’t because he was getting angry at me… while I was trying drive… and besides, I was almost home anyway.

His post-op pain management medication was Ibuprophen Rx and didn’t even begin to help him!

After five days of treatments and antibiotics my husband was put on oral antibiotics. He started to take them but had a horrible reaction to Keflex. They put him on a second different antibiotic with the same results. Nothing further was given to him after that. He should have gone back on IV antibiotics.

The date of his surgery was August 23/07.

Since then my husband has refused 4 days of further cleaning and dressing to his ear that were to follow the five days he went to the hospital

He’s called broke a very difficult to get appointment with his Ear, Nose and Throat specialist (ENT) who comes to this island only twice a year, and now this past Monday (Novemeber 19th) turned down a 10 day hospital stay recommended by his doctor because the infection has come back, as has pitting edema in his legs and fluid in his lungs.

This Friday past, November 23/07, the community health nurse (CHN) showed up at our door and asked to see my husband. He, the community heath nurse is a male, asked my husband why he hadn’t gone to the hospital. My husband told him flat out that he didn’t want to go and didn’t have to go. The public health told him that the doctor thinks I’m the one keeping him from going to the hospital because I want to care for him at home. My husband just slammed the door in his face.

I went out and spoke to the CHN and told him that what the doctor said simply isn’t true. He tried to talk to me about “perception” and “how things look” with my husband refusing all this care, the appointments, the treatments, the hospital stay. I CAN’T MAKE MY HUSBAND DO SOMETHING THAT HE DOESN’T WANT TO DO!!! The CHN told me that there’s going to be an investigation into the care that I’m giving my husband. I just completely broke down and cried.

No one but NO ONE knows the fights that I’ve had with my husband over getting him to see a doctor even just to have his prescriptions refilled!!!

I have written a letter to his doctor asking for an apology from her for the insinuations and assumptions that she’s made and for sending the CHN to our house with her accusations and perceptions. All of this is now out there for the world to see. There will always be lingering doubt in this small rural as to the care I’ve been giving my husband. I CAN’T live with this!!!

I’ve HAD ENOUGH!

I don’t have any place to go or the money to get there, but I’m about to walk away from all of this. I’ve seen my husband through recovery from alcoholism, bladder cancer, TIA’s, broken bones and many other things.

I’ve begged is adult children to come and help me out. THEY don’t want ANYTHING to do with him! I’ve asked his sisters for help, but one just lost her husband to a heart attack and the other wants even less to do with him than his own children do, and she’s a retired RN and small hospital head nurse!!!

So I’m the “BAD PERSON” in all this! I’m the one who’s going to be investigated??? WHY ME??? I’ve worked so hard for my husband… been there every step of the way when the rest of his family wouldn’t be.

I’VE HAD IT!!! I either have to get out of here or I just want to die… I CAN’T TAKE ANY MORE of this!!! I’m so SCARED!!!! (TEARS)

There's much more that I could write here, but I don't want to take up any more of your valuable time.

Thank you for taking the time to read this. I’m not sure if I’ll ever post again… I just want to go and hide… to die…

Love and peace to all of you…. Thank you for reading this… Thank you for being here

Cheri B

CheriB, These people do not want anyone to see the rue records of the procedures.They know they have to turn all over but will use their lawyer to tell you , you have to pay for each copy you request.They do change their records to protect them selves.People will say that is against the law.Well they allready broke the law when they went against your wishes for anesthesia.
I had this experience wih my mother in a care facility.I know how they protect them selves.You will find it hard to get any staff to come forward as they know they will be black listed.
When my hubby had his last surgery I told the doctor I did not want him put under as I knew what could happen.The one anestegiologistdid not want to listen to me.I told him he was to have a spinal or get him dressed.My doctor heard me and told him to do as I say.The lady assistaning took me aside and sad good for me as I was right to push for what I knew would be the lessor of the two.They like to believe we are stupid and they know it all.Today, we are more informed then they would like us to be.
If the patient did not have knowledgeable family there for them they would do as they pleased and hide their mistakes.
Stick to yiour guns.They will try all tricks of the trade to prevent this inquiry from going forward.

Hi Everyone:

I have just a brief moment to share with you. I haven’t been able to get near my computer the past few days because all that’s been happening here.

Thank you so much to each and every one of you for your posts. I’m so very grateful to all of you.

I’m still very very shaky even at the best of times and still burst into tears when I least expect to. It’s been very difficult to care for my husband and go to work these past few days, but I’m managing somehow. I think that I have an angel on my shoulder guiding me as I go forward, one small shaky step at a time.

I’ve saved all of your most helpful and kind posts.

I’ve also begun to gather up and assemble all my husband’s medical records that I can get my hands on as one of you so kindly suggested. I’m being refused most of his medical records and the records from his surgery specifically. I’ve always kept records of our medications, BP records and have a book that I write down appointments and other things in. I have a good database of “home” records. It’s the clinic and hospital records that I really need but am having a terrible time getting hold of.

One kind soul suggested that I contact a lawyer. Bless your heart! Once the clinic and hospital began refusing me some of my husband’s medical records I did just that. He recommended what most of you shared with me. Gather up everything that I possibly able to and what I can’t get in the way of records I’m to make a list of and turn it over to him.

I haven’t made any other definite plans to date, but one. What money I have saved for Christmas this year will go to the lawyer. If this doesn’t go anywhere, then we’ll have a late Christmas…

As for the investigation: I haven’t heard anymore about this. I’m hoping that it was just an idle threat, but my lawyer says to be ready for anything, as was suggested here. I’m still scared out of my wits, but I haven’t one single thing to hide and I’m going to be ready for them if and when they come.

Bless all of you for your advice, your kindness, and comfort. Thanks to all of you for being here for those of us who are just short of fall off the edge of the world. I know that each and everyone of you have your own difficult dilemmas. I hope and pray that all goes well for all of you. I owe all of you. You are in my thoughts and prayers.

I must leave this for now…

With heartfelt thanks
Cheri B

Cheri B, I understand your anger, resentment, frustrations and fear. You have been through a lot since August. I agree with the others, be forthright and honest, once they interview you, and then your H, they will see where the problem lies. I have been through this type of thing, these people have a job to do, and investigating the circumstances will bring the truth to light.

I hope you can find a little time to get away, even if it is just for a few hours on the weekend, for some quiet time.

I am very concerned when you say that you want to die. I think that you have just had it up to there with the medical staff, and dealing with your H's illness. I have been with someone in a vehicle when they were given meds that made them mean. I identify with your feelings of fear.

Whatever you do, don't let yourself develop feelings of guilt, you have done everything in your power to take care of this man's medical needs. You are a star!!!! Don't ever give up on yourself!!!!!

Please come back and update us!!!!!

CONSULT WITH A LAWYER !!!!
These people have no right to harrass and abuse you this way. A lawyer (a good one) will at least give you a free consultation. Perhaps all it will take is a letter on legal stationary (I work in a law firm and you'd be surprised how often this works) telling them to stop the harrassment or YOU will file charges and or file a civil suit. The word "lawsuit" scares medical people enough so that they will leave well enough alone unless it is something that they can truly prove with evidence. This doesn't sound like they have anything. It almost sounds like they are trying to cover their own incompetance by blaming you. Don't take this abuse and let them win... you are NOT to blame for your husband's choices when he is in even mild stages of dementia. Maybe instead of run away and die... you could give yourself a small vacation. It doesn't have to be someplace expensive... just go stay somewhere alone for a weekend so you can BREATHE and get some perspective back. Look for help outside of "family" members if they won't give it. I don't know if my rant here will help you...it makes me mad when people trying to do their best get treated as you have been. I hope things are looking up even a little bit for you??

cheri b. i am so sorry you are going through this. hang in there, the truth will prevail. it is terrible when they turn things around to cover their own but*s. it is only my opinion but i would suggest going on the offensive, talk to a lawyer, one who gives a first consultation for free since money is hard to come by and ask about suing them for the treatment your H received. nothing shuts people up faster than the thought of a lawsuit. i am the last person in the world to think of suing someone in the medical community but sometimes enough is enough. i still wish i had sued for treatment of both me and my dad. dad died because of a misdiagnosis and i am not dong too well myself due to a botched operation. think about going on the offensive. it scares me when people talk about just giving up on life. please hang in there for you husband and for yourself. there are wonderful doctors out there and ones who should not be allowed the use of a butter knife. i wish i could help but i don't have the words.

I am not sure if I would not have a consultation with a lawyer.No fee.You may turn this around so they have to explain.

CheriB, As the ladies have said keep all the records of this surgery.Most important that they gave him meds that you expressed he was unable to handle.And to give you a non licensed surgeon is out rageous.
When they come to talk make sure you record all they ask and the responses.
They are turning this around to cover their butts.
You have dealt with so much.Yopur feelings are understandable.
When does this nightmare end for you.Do not allow them to intimidate you.Let them hear hubby while in your presence.Let them hear his responses to you.
Also, get his recoreds from the hospital for this latest surgery.Make sure they did not change any thing to cover their arsh.
Tell them they are welcome to come spend the entire day with hubby to see what you deal with .They caused the shit to hit the fan .Now they want to cover it up.

What a horrible situation! Can you make a complaint about your doctor leaving a student in charge of your husband's surgery, and not listening to you when you told them not to give him morphine?

Let them investigate. Meanwhile, get all the times and dates in order so they can SEE what kind of care THEY provided, which was the basis for your husband's refusal for more treatment!

The "pros" made many mistakes in his care. Be SURE that they are pointed out. I don't know what the law is in your area, but I think if you get together the facts and records of the situation, the investigators will slink away back under their rocks.

Cheri I am profoundly sorry that you are going through this telling you to take a step back for a moment is not easy but I want you to do it.
Just sit there for a moment and absorb this...
No matter who makes allegations towards your quality of care remember that is their OPINION.
They have to investigate this and they will fortunately they WILL speak to your husband and hear what he has to say. When they speak to you be forthright and honest, they will see and hear that none of this is your fault because your ABSOLUTELY correct, no one can make anyone do something they dont want to do even if its for their own good.
I have been right where you are at and I know how you feel.
Your angry frustrated insulted and scared out of your mind....This too shall pass.
Allow these people access to get the answers so they can report back and tell these so called "concerned parties" this is about PATIENT REFUSAL this has nothing to do with you.
Afterwards find a doctor that actually speaks to you and LISTENS...