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Hello, new to the forum and need input. My mom is currently in a
Skilled nursing facility for physical therapy.
She was hospitalized 8 days for severe hyponatremia 3/15-3/22, then sent to rehab. On 3/26 during a therapy session, she got shaky, was sent back to the hospital. Spent another 7 days recovering from a UTI and 'hospital induced delirium'. Do nursing facilities have to inform family members of her plan of care or share progress reports? My sister & I have never voluntarily been informed about anything regarding mom's care. I visit daily, call her several times a day. Made several attempts to get information, but no luck. Her nurse verbally told me what meds she's taking & lab results, only after I asked 3 times. Any thoughts or advice would be greatly appreciated. Thank you

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When my mother was in SNF after her stroke, I gave the Director a copy of her POA and a letter, stating the NH was to contact me before any meds were started or stopped; any therapy was started or stopped; any changes in her condition, improvements or declines. That they were to make no health or treatment decisions WITHOUT my knowledge and permission, except for a life threatening emergency. If it was,, i was to be notified as soon as possible.. My
letter was the very first document in her chart. The NH complied with my request. I hope this information is helpful.
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Reply to Maple3044
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In the 2.5 years since my mothers stroke I have had to request information from rehabs - and hospitals. I had to make it well known that I want to be a part of all care and decisions. I’m unsure if most families don’t ask or are not as involved.
I would make a call so you can be part of the care plan meeting and express what you and your sister expectations are. With you being there every day - You should make sure anyone you meet in moms care knows this as well as make notes and tape them up in her room for times that you are not there (I now always have paper and tape in my bag).
From my experience I have had to really just be blunt and firm. “I am involved in every aspect of her care” and expected everything to be discussed with me. I wanted them to call me with anything and it wasn’t a bother - I pretty much had to say that I wanted them to bother me with everything. I do have POA as well as health care proxy so I was able to do so.
Our last hospital stay for UTI (with delirium due to the antibiotics) they would actually try (before I got there in the morning) to act like they talked to mom already. As we all know - someone with delirium “cannot discuss their medical health or care”.
If you do not have POA and health care proxy - try to have your mom do them up as soon as possible.
My other advice from experience is be careful with which antibiotics are used for UTIs. If you mom experienced delirium on the serve side with the ones she was just on then Make a note on exactly which one she was recently treated with.
My mom has a Severe reaction to a few of the cephalosporins class antibiotics last year and it is the “GO TO “ antibiotic for uti. We have since had to use different types and she has a much easier time - nothing like the reactions to the cephalosporins class. I would never had thought an antibiotic could cause such horrific side effects and it scared the heck out of me - I have since learned to be vocal and put cephalosporins in her allergies so she is never given them again.
Hoping you can speak with her team at rehab and they understand that you and your sister do want to be involved and they see that as a positive :)
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Reply to Momheal1
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not sure if you have POA or health POA but sometimes places will only provide info IF you have that. My parents (thankfully) made both my brother and I health POA and POA of them when they were in their 80's. Any time my parents needed to go to doctors and/or hospital I was provided information when asked. My mother just recently had an episode of dehydration and a pill that dropped her pulse rate super low. ended up in ER/hospital for 6 days and now in nursing facility "permanently" (she is 94). But that was HER wishes because she knew that I had done all I could. I never had a problem getting any information from doctors/nurses/aides when I asked. IF your parent does not have you as a HPOA/POA........get it done ASAP so that you can get info any time you ask. Otherwise, it would be considered "the privacy act" and they cannot release any info to anyone unless they are POA or put on a list to receive info. Good luck
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Reply to wolflover451
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HAve your mom sign something to the fact that you are allowed all info regulating her care
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Reply to bevthegreat
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Imho, perhaps the hospital that your mother was in was overwhelmed due to the Novel Coronavirus. Hospitals should have a coded color of the level of the virus. Even so, you should be able to speak to the Hospitalist and ensure that you are on your mother's contact list.
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Reply to Llamalover47
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A Power of Attorney is not necessary to receive information on your mother's care.
The Health Insurance Portability and Accountability Act (HIPAA) was developed to protect a patient's release of medical information except to those designated by the patient. The patient can also decline release of information to anyone beyond those directly involved in her health care. When a patient presents for treatment anywhere, HIPPA forms are presented to patient to complete. It requires your mother's signature, with those allowed to receive information listed. In the circumstance she is not competent, whoever consented to her admission can receive whatever they want to know.
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Reply to SouthernSun
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I don't know but it should be made to call the family. The can't just change procedures and meds without an o.k. from the doctor. Talk with the doctor and have him write a letter to the nursing home that they MUST keep you informed.
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Reply to Riley2166
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The POA only is informed, and yes, the POA should be included in nursing conference even if only by speaker phone. There is usually a weekly care conference, the first including all members of the team from nutrition on. Then that family member may share what information they feel relevant with the rest of the family, some sort of informative phone tree of relatives. As you can imagine, they cannot speak with more than one family member, that one being current POA or guardian. If there is no such person assigned speak to the Social Worker at the facility to see if she can get temporary guardianship for the family member chosen. I am assuming that your Mom is not perfectly competent, of course. If she IS, then it is up to her who is included in anything regarding medical information if she did not create someone POA.
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Reply to AlvaDeer
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Under the Affordable Care Act, and IF you are an authorized contact person, you have a RIGHT to know what is going on with your loved one. If anything you SHOULD be able to access her medical records with patient portals. That is federal law. But you MUST be the legal designated contact person. It's really quite simple.

https://www.hhs.gov/hipaa/for-professionals/privacy/guidance/access/index.html
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Reply to cetude
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Generally, staff can not just tell somebody about a person's condition without that person's consent. It is part of HIPPA laws that protect a person's privacy. Contact administration. They should have somebody listed as a contact person for information. Also arrange so that one of you is contacted regarding changes in her condition.
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Reply to Taarna
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Every 3 months or with any care plan changes if you are on the list of caregiver POA you should be invited to those discussions.
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Reply to Peace1
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Contact the Supervisor of the Nurse Case Managers. One should be assigned to your mother and can facilitate better sharing of information. The case managers usually do rounds with physicians. Additionally, you can go straight to the facility administrator and explain your very reasonable and entitled information for your loved one.
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Reply to SouthernSun
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I don't know what the state laws say but I think out of decency and common curtsy they would include family about the cars plan any changes or reactions she has to meds. Read the contract that was signed when she went into their care. If need be keep forcing the issue as a last resort hire a lawyer to readYhr papers and to advocate for the family about her care. You are a very caring daughter log of us are in home care assisted living or nh and forgotten.
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Reply to Sharon45caregiv
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If you don't have POA then NO they do not have to tell you. However developing a good relationship with those who are caring for her will get you more information than worrying about the legal poisition.
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Reply to TaylorUK
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Do you have medical power of attorney?

You mother has to give permission by signing forms saying that her medical information can be discussed with you.

I also had a stack of papers to review and sign when mom entered the NH for rehab.

Later, there will be meetings with the social worker and staff (PT and OT) to discuss progress.

Your situation is different due to your mom returning to the hospital.

Ask your mom if she filled out the necessary paperwork.

Best wishes to you and your family. I hope your mom starts to improve soon.
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Reply to NeedHelpWithMom
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You need to be listed as someone they can talk to on their records regarding mom's care. I have DPOA with medical and financial authority. I make sure my name, my husband's and my brother are listed as someone who can be provided with the information.

However, since Mom is competent, the facility doesn't always call me regarding what is happening with her. There has been 4 or 5 Directors in the 3 years she's lived there. I had great relationship with 2 of them and they kept me informed, knowing mom would forget to call me. The newest one hasn't been broken in yet - and since she isn't a nurse like the last three there is now another layer added.

However before my father died - he'd been moved to the the SNF where there were meetings every 90 days re his care. I again was the one called as I was his agent as well. Again, my brother, husband, mom and I were listed on who was able to get information. I was the one they called when he fell - which was weekly. SNF at the community my parents live in (mom is in AL) was not all that great and dad wouldn't have stayed there but for mom being able to visit him anytime she wished. If mom ever needs SNF it will not be at this one. The point is, make sure everyone the family wishes to get information is listed on the appropriate paperwork.
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Reply to cweissp
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jacobsonbob Apr 15, 2021
The newest one hasn't been broken in yet..." LOL, this is a great way of putting it! Hopedly, you'll be able to get her "trained" to obtain and convey the information you need, without too much bureaucratic hindrance.
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Where I live (ON Canada) care plan meetings are mandated, I can't remember the exact timetable but there must be one within the first weeks of admittance and periodically thereafter. A relative who works in long term care told me that despite all the restrictions these meetings have been held throughout the pandemic.
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Reply to cwillie
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Thank you for the info. I'm moms primary care giver & listed as her emergency contact for the physicians and nursing home. I moved in with my parents in 2013. After my father passed in 2016 my sister who works for an attorney took care of the paperwork. In addition to the Revocable living trust, She's moms Health care surrogate & Durable POA. Mom initially asked me to be her health surrogate since I'm living with her. I felt it would cause too much conflict with my sister. We've both attempted several times to meet with the social worker, nursing home director, etc. Nobody has ever returned a phone call. Again, thanks again for all the suggestions
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Reply to Catskie62
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Geaton777 Apr 13, 2021
I'm glad to hear all the legal protections and authority are in place for your mom. Is it possible the NH is struggling with covid issues? I would have your sister, the PoA, contact an ombudsman to make a complaint. That may get you a response sooner.
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If you are not listed in mom's medical records as being able to get information the fact that they even told you about meds and lab results is illegal.
HIPAA laws are very strict.
Make sure you are on each and every form as someone that they can give info to.
She should have a POA for medical and financial decisions if/when she can not make decisions for herself.
And without POA if it gets to the point where she can not make decisions for herself you or another family member might have to obtain Guardianship in order to make the necessary decisions. (unless she has a husband then he legally can make decisions for her both financial and health)
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Reply to Grandma1954
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Your mom needs to assign you as her Medical Representative on the HIPAA form, and she should also, when recovered, assign someone as her medical and financial PoA. Without these legal protections for her, if she slides into cognitive decline it will be legally possible to manage her affairs. Go to an elder law attorney for this, and be sure to also discuss Medicaid qualification (in the future, if she ever needs it) be because the cost of care is such that many many responsible people who saved for their future wind up needing it and there is much to know to avoid being disqualified, as there is an application financial "look back" period of up to 5 years but no less than 2-1/2 years in each state. Have her also create a Living Will with the input of her physician and be sure to keep a copy and submit another copy to each doctor clinic she works with.
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Reply to Geaton777
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Something else just occured to me. Unless your mom has been declared incompetent or is in some way "out of it", it seems likely that the facility feels that they've discharged their "duty" to inform by getting your mom's approval for her care plan and keeping her abreast on her meds and such.

Are you your mom's health proxy and/or has she signed a HIPAA form allowing you to be privy to her health care information?

In several instances, my mom was informed of medical information while in rehab; she would forget to tell us or misunderstand what they were telling her.

This caused lots of anguish and misunderstanding between us and staff.
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Reply to BarbBrooklyn
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You call the social worker and them to schedule a care plan meeting.

In most facilities, the Director of Nursing (DON) is the queen bee of the facility. S/he and the facility Social Worker are the folks you get AND GIVE information to and from.

Talking to regular staff (the folks who do the front line care) is important but won't get you the official information.

A good care plan meeting will have the DON, SW, Unit Manager and therapists in attendence, some by phone. Come with a list of questions.

If you are interested in transitioning mom to long term care, now is the time to bring that up at the meeting.
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Reply to BarbBrooklyn
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