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My dad has dementia and is in long term care. We are having a hard time getting any written reports on the care, etc. my dad receives. We get verbal reports that often conflict. We find out about appointments after the fact with no summary of care, just a bill. We have never been able to communicate with his in-house primary care physician. The records seem to be very disorganized. Suggestions to make this happen before going to an advocate? My mother is the only one there and is more than an hour's drive to see him. All of the children are out of state. Smaller community with fewer choices makes this even more difficult.

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I guess it’s different when you already live far away. Maybe a facility closer to where you or your siblings live. If not then having a person needing a home might help with monitoring but if they’re not trained hha’s be careful. If your dad’s not a fall risk and fairly independent with ADL’s that’s good. Maybe a good companion is all he needs. But if he’s frail or needs a higher level of care then consider moving him closer to you in a facility. If he has dementia that is preferred.not sure what his health conditions are. Good luck to you in any case it’s a very hard place to be.
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Reply to Nanbwhen
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I agree that finding a staff member that you can depend on is your best source of info.
I was sent to a nursing home after having a colostomy to rehab and learn how to use the appliance. It was madness in there! I was 63 and sound of mind but I had as much trouble getting info inside as my family was having outside.
I arrived at 4 in the afternoon but didn’t get intake process til 3am. That’s because the sharpest staff member in the place was so much in demand that she worked 3-6 hours after her shift ended every day.
When we had the meeting with the whole staff I had been there for two and a half weeks. We thought it was to discuss my release but it was my entrance meeting!
I only saw the staff doctor one time and he did not examine me at all. He walked around my room while I was being doctored up by nurses assisted by aides.
And time runs at a different pace in there. You can set your watch to s-l-o-w mode so set your expectations to same.
I made friends with the lead rn of the facility and quit asking questions from anyone else because they never had answers anyway. He was able to plan my treatment and give me accurate assessment of my progress, and his recommendations carried weight with the staff and got things done.
Charlotte
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Reply to CharK60
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If you are not receiving emails on a consistent bases of updates and care plans for your dad, I think you have the right to demand it. Sometimes you might have to be a nuisance to them by demanding to know what is going with the care for your dad. Most of the good facilities will include other family members apart from the POA on the mailing list. Some even have a family room portal, where activities, photos and services rendered are logged so that the resident family can follow along. My two cents is call until you find a favorable solution to your concerns.
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Reply to hcar6850
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In my experience, to some degree it depends on the facility. In mothers first ALF communication was not good. She moved after 6 months to a second ALF and communication between the liaison person, the director and me as POA was very good. When she was in the geri psych hospital the social worker was excellent at keeping me informed and involved. Then she was moved to another ALF and again the communication by the nurses and the social worker was great, Finally she is in an NH and the communication is not good, It seems to depend entirely on the aides. The DOC does not have a much of a clue what is going on, the MD relies on the nurses who don't talk to me, but refer me to the aides. So it is u to me to call and question regularly. There was a case meeting nearly a year ago but some of the information from that was lost with staff turnovers.

I have never heard if anyone getting written reports. Others have made good comments about helping your mother in her role as POA. I have found in all places the best I can get is through developing a relationship with one or two of the staff there who are willing to keep me informed and act on my suggestions for mother's welfare. Good luck.
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Reply to golden23
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NWranch, Maybe some more info would be helpful...how old are your parents and how is your Mom physically and cognitively? Is she capable of visiting your dad, and if so how much?
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Reply to rocketjcat
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Are you the DPOA? If so, you have rights! You can tell the home that you want to be called every time your loved one visits the doctor. You can tell the home that you want the facility doctor to call you, or asked for his/her number so you can call them.

Several individuals has mentioned the "Care Plan." Family members should be invited to the "Care Plan" meeting. The home should be willing to have the "Care Plan" when you can be there. During this meeting you should be given updates on your loved one's condition. Another purpose for the "Care Plan" is for the family to bring up any concerns they have with their loved ones care. The staff should come up with an action plan to address your concerns. If you have a lot to discuss tell the "Care Plan" team ahead of time and tell them you need more than the standard 15 minutes. If the staff tell you they can't schedule more than 15 minutes then tell them you want to schedule a "family meeting." When you schedule this tell the Director of Nursing (DoN), which is who I usually schedule these with who you need to attend the meeting (PT, OT, Dietary, Social Services etc..). A family meeting does NOT have a time limit. Family meetings I attend can last 45-60 minutes. They last as long as needed to get concerns addressed.

If you would like an advocate to attend the "Care Plan or Family Meeting" with you contact your local Ombudsman Program. Ombudsman are Federally mandated advocates for residents in Long-term care facilities. There is NO cost for their services. Ombudsman know the State and Federal laws which govern long-term care facilities. Ombudsman often attend these types of meetings to advocate for residents.
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Reply to cjwilson
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The Care Plan Meetings for us for my mom’s NH stay were as everybody has posted. As her POA, I was contacted as to time & date; and if I couldn’t be there it could be by CC.

The breakdown is likely that your mom as his DPOA is getting the notice of or told when the Care Plan meeting is scheduled and she’s overwhelmed and perhaps has her own cognitive issues to realize just what the meeting is and it’s importance. If NH has her as the point of contact and she’s has her own cognitive issues, you need to get it changed to be you or another family member. NH can’t do this.

I took a snack to them. Something small that you could hold in your hand like mini muffins, clementines.....it will give you extra time beyond the standard 15 min., AND whatever’s left you drop off at the DON / director of nursing’s office. DON is the goddess and power center for a NH btw. Also word gets out so next CPM everybody shows up!

do not expect the MD / medical director to be at the CPM.

At CPM, for my experience, I was asked to sign off a summary sheet on mom’s status with sheet in her health chart. If you have a specific concern, you can write it in in the area above your signature. It therefore becomes part of her permanent entries in her health chart. If there’s significant stuff, you might want to have a list already done, printed and you whip out your tiny stapler and attach it to the CPM page. Be sure to write in “concerns as per attachment”. These need to be serious concerns, like wound care evaluation or evaluation for hospice or evaluation for swallowing (mechanized proteins). If it’s a wound care issue, print out a couple of photos of the wound. If you do this, expect jaws -when you take out that teeny tiny stapler -to drop but whatever is in the attachment will have to be addressed & it’s the DON that will jump onto someone butt abt this. Again it has to be something of serious concern that requires attention.
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Reply to igloo572
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Get an advocate to help your mom. Failing that get A court appointed guardian if your mom can’t make these decisions. And you can’t be there. I don’t know what else to say its tough all around.
Worst case scenario your mom might need a facility too. Then what will you and your “uninvolved “ siblings do? I hate these scenarios. If your the POA for your mom you should start making decisions.
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Reply to Nanbwhen
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Is that the only nursing home in town ???

Talk to a minister if you know any about alternate lodging suggestions.
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Reply to Betsysue2002
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It sounds like you need to move your dad to a facility closer either to your Mom or yourself. Does she drive herself and visit every day? Weekly? Monthly? It would be very hard on a person to drive that distance often. My daily drive is only 25 minutes and it’s taking a toll on me and I’m only in my 60s.

You are not going to get a written report so forget that idea. You may be able to set up a weekly “call in” time with the RN or LPN, but there is no real substitute for being there. Often. Again, my recommendation is to think about a move closer to someone so everyone’s not as stressed due to lack of information.
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Reply to rocketjcat
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50sChild Oct 9, 2018
Thank you for your realism. My Dad was in a Bloomfield Hills, MI facilitary (Romney, his wife, and Robin Williams grew up there) -- and they acted like they had never heard of such a thing as a care plan meeting. It was a great facility. But beware folks, as you get to that magic 20 days and facility social workers are supposed to refer you to further placement "if the patient can't go home" -- I was referred to a corporation, That corporation (huge national presence) sent me on a wild goose chase to facilities that were not appropriate for my father's state. I spent at least three hours-each at each facility, only to learn they were basically assisted living with add-on benefits if you paid more. What a waste of my time. I defaulted to Dad staying at home (much cheaper), and crossing my fingers that he wee-hours in the night, monitored by a homeless person, would suffice. Oakland County's APS and social workers confess that this is the best I can do. That's Bloomfield Hills, MI. I can't imagine what smaller, less affluent communities must do to make it work. I agree with the advice about finding a communicative person (who is dying to live their ethics because they don't have support). Also agreeing with looking for another facility. Also wondering if you could scrape a local homeless shelter fo good people who fell on bad times. They are there. They may have mental illness, but so long as they are monitored, they will give their hearts for the care of another. I don't mean to sound abusive. But they can teach us things we never knew. So long as there is a county social services that vets the situation, it may be an option. I've had plenty of disasters, but ultimately, I believe in the human spirit. I have found that homeless folk who try even halfway, have improved their lives and the lives of their "landlord." I may just be lucky or naive. It's amazing how many truly good people struggled to find a place for their heads to lay down at night. In Bloomfield Hills, or I suspect, in West Palm Beach or anywhere. Just a thought.
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I don’t get why people think if they don’t go visut the person they can ensure or even expect good care.
You know NH staffs are busy. If your guilt is bothering you. It’s time. to Visit
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Reply to Nanbwhen
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50sChild Oct 9, 2018
Ouch. I live over 300 miles from my father. My husband is 86 and experiencing end-of-life-issues. Your comment is hurtful beyond belief. How about a tweener family, or a family dealing with mental illness, or a family who took a job 500 miles away because it was a job. Not liking your thinking.
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Again. Fly there if you have to
no way you can monitor Care remotely in a NH. And if your mother is elderly they need help too.
I know you have lives.
Neither weigh in that you won’t be involved or get involved. Get on the phone with an ombudsman and get in the care meeting schedule.
Not really stinks but the staff won’t include you if you’re not present either by phone or in person.
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theoldbaker Oct 10, 2018
Wow. You are awfully cruel. I guess you must be bitter about something, but that kind scornful attitude is probably not appreciated by the community here.
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You need to go there. Meet with the people. How can anyone assume care remotely without checking in. Stop being selfish.
if you are not getting information and you’re REALLY so concerned get on the phone and go there. Or ,better yet, move your loved ones NEAR you.
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Kimberly88 Oct 9, 2018
Obiously, you don't understand why some of us, just cant go there.
Shame on you for trying to pass the blame to long distance care giver. Not all of us can afford travel, not all of us can quit our job, which supports our family, to just go there. Someof us, cannot get the time off or cant afford the tine off. Some of us, pay our parents bills out of our own money, if parent does not have enough. Some of us are not like you.
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I wonder if there might be a patient portal for electronic communication? My folks are in a facility in PA and I live in AZ. There is a patient portal for there medical team and it is my lifesaver in helping to manage their care. If this is not available to you, you’ve already gotten a lot of great advice. One last thing. Be good to yourself as you navigate this journey. It can feel hard to find the time, but remember that you only get one you. Wishing you strength, wisdom and comfort for the road ahead.
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Reply to MelissaPA2AZ
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cwillie Oct 9, 2018
I mentioned my wish for a patient portal to our Nursing Home administrator and was surprised when she told me that it was already available at some nursing homes in the area - if I could check all the info remotely it would save a lot of grief for me and the staff I'm always pestering!
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You are not going to get written reports. Full stop.

You should request a care meeting that you can call into. How are mom's cognitive skills? Is her being overwhelmed in any way related to mental health/cognitive issues? Is she eating?

You want to come to the (phone) meeting with a list of questions. Generally, each professional at the meeting speaks her/his piece; if any concerns don't get answered, bring them up.

Get ONE point of contact for the home; find out who you can call/email when you have a concern.

One of the biggest problems I had was inconsistency of information from one shift to the next.
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Reply to BarbBrooklyn
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Kimberly88 Oct 9, 2018
Hi, and yes getting printed info is hard, but not impossible, you only have to ask and sign a records request, and write on the form that you are requesting ongoing reports, not just 1 time thing. They are required to comply if you are guardian or POA. If they don't, simply write director of nursing, and cc the state omnubudsm at the same time. Verbal requests do not have to be honored by law.
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Medicare and Medicaid required that nursing homes perform "Resident Assessments" of each resident every 3 (three) months or if a significant change (either improvement or decline) occurs.  If the resident is currently receiving Medicare Rehab Therapy--Physical and Occupational Therapy, then there is a different schedule of when the assessments must be completed. 

After the Resident Assessment is completed, a Care Plan Meeting is scheduled.  The Nurse Manager (for the "Unit" or "Hall" or "House" that the resident lives in), Dietician or Dietary Manger, Activity Director, Social Service person, and therapists meet with the resident and the family members to discuss the results of the assessment, medications, diet, activity, etc. (Since my brother lives in another state, the Care Plan Meeting was held so that he could do a teleconference & participate in the Care Plan Meeting from his workplace.  You might be able to Skype the Care Plan Meeting.)

You should expect to have a Care Plan Meeting every THREE months.  You can request additional Care Plan Meetings or you can request to meet with the Nurse Manager to discuss your father's care whenever you have any concerns.  Since your Mother has POA, then the nursing home is going to contact her ONLY unless you request that the nursing staff and social service staff contact you whenever there is a medication change, a behavior problem, doctor appointment, etc.  The nursing home does NOT have to contact anyone who is NOT the POA and cannot contact anyone who is NOT listed on the resident's/your Father's HIPPA form that was filled out when your Father was admitted to the facility.  Contact the Social Service Department and ask if you are listed on the HIPPA form.  If you are not listed, then your Mom, as POA, needs to put you (and any other family members) that want/need to receive information about your father's care on the HIPPA form as being able to receive medical information about your Father.

Apparently your Father was admitted to the nursing home about 3-4 months ago???  No matter when your Father went into the nursing home, you need to work with the nursing home staff and communicate professionally, courteously, clearly and in a non-threatening way, what your concerns are and what your expectations are of the nursing home staff.  You need to give them time to get to know your Father and his routines and to allow the nursing home time to "figure out" what is the "best way" to care for your Father.

It isn't easy living 12 hours away from your parents and not being able to assist them as much as you want and having a spouse/parent in a nursing home is often overwhelming even when you live only 5 blocks away.  Maybe if your Mom and you each have a notebook or large "Daily Planner" where each of you can write down information that you receive from the nursing home, questions or concerns you have about your Father's care, upcoming doctor appointments(either at the doctor's office or at the nursing home), it might help your Mom and you feel more involved in your Father's care.

Having a family member in a nursing home is stressful.  Give your Mom and yourself time to adjust to the fact that your Father is in a nursing home.  Some family members have told me that they feel like they started grieving when their loved one entered the nursing home because that person was no longer the person that they used to know.  Take care of yourself.  {{{Hugs}}}
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Reply to DeeAnna
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By law, they have to have care meetings every three months. If you haven't had one, go to the Director of Nursing and tell her you want one and more than 15 min because you have some concerns. Are you POA? What kind of appts? Mom was on Medicaid, They had a Dentist, foot doctor and eye doctor see her. Because their schedules vary its hard to say exactly when they will see her. You should be called if they feel a procedure is needed. The NH should not take it upon themselves to make these decisions, Usually a doctor assoc. with the facility has Nurse Practitioners who see residents.

You should have received a packet telling you the residents rights. Also, a phone no. for your State Ombudsman who may be able to help you.
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Reply to JoAnn29
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Nwranch Oct 5, 2018
Thanks for the reply. My mother has POA, I am her backup. The NH will work with me. I am trying to get a better perspective on my dad's care because my mother is overwhelmed and isn't getting this info either. We had an initial care meeting in July. None since. My dad has been giving them behavior problems and finally ended up in a psychiatric hospital to get medications adjusted. Basically we only receive sporadic info and often only after multiple phone calls. I will see if we can get a meeting set up to review his care plan. I may have to resort to the advocate or a formal complaint. Unfortunately, I cannot be there in person long enough to work through this. My other siblings are less involved. I am the closest geographically at 12 hours driving.
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