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Caringfrom50 Asked December 2016

What are my rights as to be on the list so when I call the nurses station to get information about my mothers condition and med records?

My mother, used to live on her own... she has 8 kids.. called me every morning to chat! My last visit there was May 9th, She was active enough to give bus trips to Casinos etc. On May 13 2016, she walked into the emergency at Albert Einstein hospital because she missed "one Water pill" and wasn't breathing right.. due to water back up! I didn't find out about that until 2 months later! I had been calling her apartment n no answer! And On May 19, I was notified that she was dying! When I got there she was weak still water in her lungs.. still unable to breathe! 6 days later... The nurses were still monitoring. she wasn't eating. With no teeth in her mouth how could she. When will they give Lasix to pull the water out? My youngest sister is her proxy because she just became a RN. She has no hospital experience. My RN sister was tossing her nursing knowledge terminology around.. After I got home... I realized that my sister doesn't know much! And my mom will die if she stays there! I called Lenox Hill to see how to go about having transferred. I was told it was complicated and the proxy will have to get the doctor to sign her out! I called my sister the PRA. 7:30 am next day and told her that Yes! Mom will die if she stays on that floor! and to please have her moved to ICU! Well they happen to move her 4:30pm. She still had not eaten! Ofcourse she's weak! They still had to monitor.. Don't they look at records? On Saturday I was able to call the floor and let them know that I'm not eating until my mom is going to be fed the proper edible diet! 29hours later they fed her trough intravenous! Since then, there has been one disaster after another! I asked my sister about her primary doctor and why wasn't he called? They know my sister is a new RN and they have taken advantage of my moms Medicare plus insurance. They've moved her to rehab medication too low so she ended back up at their annex hospital 3 times.. 2 of their nursing homes.. They have exhausted her Medicare Now they have here on Medicaid!! Now it's Dec. 4th. They got her on Dialysis to clean up their mess!! of over medication! I know this because I was able to get my mom to ok a list of medication while she was in the nursing home. I was baffled! There was discontinued medication, over and under in accordance to her weight.. 2 different types of blood sugar being used.. 80mg of Lasix! They used and abused my mom! I live 50 miles away it cost me $40.00 per visit. My mother has been in Montefiore hospitals for 7 months. Now her heart is failing... Kidneys are failing so they say. That's why the Dialysis
You see... I'm from a previous marriage and my and not liked by the 3 half sisters that are on the list for info on mom and they really have no kind of Geriatric knowledge. Mom didn't know either! Or else mom would've been out that Friday the 13th 2016. Me on the other hand.. 67 years old, retired small biz owner... worked in ICU. 8 months and moved from the Bronx in 1969. On my side of family we have 2 doctors, 2 RNs.. on my husband was a pharmaceutical rep.. and his brother is an RN's with 20 years emergency.. On August 18th, I visited her, she said she was very thirsty! On the 19, Mom was transferred to emergency! The doctor said he saw something on her Kidneys! My husband came with me.. They gave her 80mg Lasix! and he mentioned to the dr. that 80mg was a bit drastic! and he wanted to speak to the doctor... who never came!
My mother is tired! I don't think she'll be able to go back to her normal life! They only seemed to get her out... when they see I'm know what I know.. or they'll say to talk to her proxy. What should I or can do? Left out on Long Island!
My sisters can stay in her apartment except for her bed of which I fully furnished! I know this is petty.. but I'm tired of the battle

Llamalover47 Dec 2016
freqflyer: I think you might be right about the aspiration.

Llamalover47 Dec 2016
Caringfrom50: One question-what did the Hospitalist say? He is the doctor who takes over her care at the hospital. I'm confused when you say you weren't notified for 2 months, but the dates conflict-still being in May?

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Llamalover47 Dec 2016
Caringfrom50: Your mother should have been immediately put on the medication, Furosemide.

Sunflo Dec 2016
I read thru this craziness and think --your poor mother. Put aside the sibling squabble crap and worrying over RN sister. Go to hospital and insist on a consult with her attending physician and medical care team. Request you be added to the contact list for medical info and if they don't, demand to know why.

Next demand that family get a consult with hospice and palliative care as soon as possible. It's darn long past time that they get involved for moms sake and well being. How long y'all gonna put this poor woman thru all those medical agony?!

Believe me, watched my friend and then again my FIL go thru this medical carousel, only to have months of agony and new medical issues arise ending in death when they could've had some peace and quality of life. GET HOSICE OR PALLIATive care NOW and understand your options and what's best for mom.

Llamalover47 Dec 2016
Caringfrom50: There is a certain protocol to have your contact information placed with/at your LO's doctor/hospital/care facility. I'd been through it with my late mother. Sometimes you must be FIRM with them to get it accomplished.

Veronica91 Dec 2016
I am so sorry you are being kept in the dark about your mothers care and medical information. As has been mentioned if she is still competent only she can decide who can receive information about her condition. There may be a very good reason why she does not want you and your family of medical people to know what is going on and put their two cents worth in.
80mg of Lasix is a large dose but when someone has lungs full of fluid that is the only way to shift it and make them able to breath. I know from personal experience how frightening this is. I believe I was given 120 mg IV at my worst and am still taking 40 mg twice daily a year later to keep the edema at bay and not spend my nights gasping for breath.
Some hospitals and some Drs are very bad but in the main they do the best they can for their patients. I don't know if your Mom is at the end of her life or not but it is highly likely. I would stop rocking the boat and spend as much time as you can with her before one of the half relatives decides your visits are too disruptive and gets you banned from visiting and yes they can do that.

ferris1 Dec 2016
Since you are tired of the battle, quit battling. With the medical issues you mentioned, your mother is having a losing battle herself. Your half sister has all the power and the best you can do is keep visiting your mother until the end. And this is from a retired nurse with hospital experience.

TooYoungForThis Dec 2016
You live on Long Island and you're complaining about getting to a NYC hospital? Seriously? LIRR brings you right to Penn Station, where you can pick up any number of subway lines. You make it sound like you live 2,000 miles away.

The hospital isn't "using and abusing" your mother. If your mother wanted you to know everything that is going on with her, then she certainly could have put your name on the hospital record as someone that could receive medical information. It sounds like you may be a bit "dramatic" with things and you need to chill out & let the medical providers take care of her, since they know a lot more about what is going on than you do. Even if you are named as someone that can receive medical information about your mom, you still aren't going to be able to dictate what the doctors do, and if you try to do that, they won't talk to you at all. Calling the floor & threatening them that you're not going to eat until they feed her an edible diet makes you a crazy family member, and none of the medical providers are going to want to talk to you anyway. There may be a reason why your mother doe snot have you listed in her records as someone they can talk to about her medical care.

Your husband is a NOBODY when it comes to your mother's care, and a doctor doesn't have to, and will not, talk to him about anything----especially about the 80mg dose of Lasix. Who is he to question or comment about the dose of Lasix that was ordered, as a former pharmaceutical rep? He's lucky the doctor didn't tell him to f*** off. Working for 8 months in an ICU hardly makes you an expert either. Here's one example of that: Primary doctors no longer take care of their patients in the hospital. When a person is admitted to the hospital, doctors on staff called "hospitalists" are in charge of taking care of patients. Primary care doctors don't even know that their patients were admitted.

And you can be sure that your "knowledge"---or lack thereof---has no bearing on what they do with your mother. You're not listed anywhere on her records as someone to discuss her medical information with, and you are not important.

freqflyer Dec 2016
Caringfrom50, I wonder if your Mom is dealing with some type of aspiration... that is where food and liquids tend to go into the lungs instead of the stomach. That situation could lead to pneumonia. My Dad had that, any time he tried to eat, he would start coughing up a storm, poor guy.

As for getting information about your Mom's condition... usually hospitals prefer to make just one telephone call to the person who is representing your Mother, her Power of Attorney... and it is up to the Power of Attorney or designated caller to call everyone else in the family to give information. Otherwise, nurses and aides would be on the phone all day calling dozen of people for each patient.

skyhigh Dec 2016
All the answers above are great, but this should have been taken care of long before it became a problem. We have the HIPPA release in place just in case. No one knows what tomorrow will bring, as the old boy scout motto goes: "Be Prepared."
When I fill out the paper at the doctor's office it asks, "who can see my medical records" Who can we call in the case of an emergency. You must be on the list.
Even at 71, I am in great health, but that could all change in the blink of an eye. Alway cross all the T's and dot all the I's.
Families can be a troublesome lot. You have a right to know.

Midkid58 Dec 2016
You've got to be on her HIPAA forms, or not go..sorry. Your mom has to make that decision, and it sounds like you better get yourself to where she is and stay there until things stabilize.
Are you hearing about all this "abuse" from other family members or are you actually "there" seeing it be done? I know what I "hear" about mother's care, and then what I actually "see" are often VERY different.

It's been 8 months, I'd be frustrated too, but you need to get to your mother and get her permission to speak on her behalf and have the right to know what's going on.

You may have to accept that she may be dying. I'm sorry it's so dramatic and awful, but maybe that is what's happening. Be prepared for that, too. I'm sorry, family dramas wear me out too.

peglyhubba Dec 2016
On your next visit have the shift nurse accompany you into your mothers room and get your mother to verbally acknowledge you are allowed to receive her medical information via phone. Then watch the nurse put that info into your mothers chart so you know it was updated. Go visit soon!

bluebonnets Dec 2016
Can your mother sign a HIPAA Medical Information Release form authorizing you to receive information on her status?

Does she want to?

Does she want to sign a new Medical Power of Attorney naming you? It sounds as though she is content to have your (half) sister as her agent.

Countrymouse Dec 2016
Hugs to you.

I'm really sorry for everything you and your mother are going through. Are you able to visit her? At this stage, in your place I'd make that my priority and leave everything else for another time - if indeed it even needs discussing in future.

Heart and kidney failure progress, that is what happens, and it's horrible, and I'm so sorry. I hope you're able to see your mother and that you find her comfortable.

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