I’m new to this forum and desperately trying to advocate for my LO, but I'm clueless on navigating care in the nursing home. TIA for listening and any advice!

My Situation:
78 YO, COPD, oxygen 24/7, possible Dementia, frail, limited mobility

Mom fell at home and fractured her pelvis. After ER visit, she's now at a nursing home for Rehab. The fracture in inoperable, and Ortho says, she needs “time and movement” to heal in about 4-6 weeks.

Our Quandry:

Since admitted to the nh 10 days ago, her confusion has gone from a 4 (forgetting dates, story details, etc.) to a 10+ (conversations make no sense, sharing things that happened 20 years ago, incoherent). She also very angry/agitated and confused about why she's there (no memory of fall).

We have had very limited communication from the nh. Between my siblings, we are there almost every day. I know nursing homes are short-staffed and she was admitted on a holiday week. But she is not getting the care she needs, and I do not know how (or who) to go to (much easier in a hospital setting with nurses right there to make care adjustments).

My Questions:
- Can a pelvic fracture/trauma cause dementia to escalate so quickly? (note: dementia is not official, we were about to have her evaluated before this happened)
- Who makes the medical decisions in a nh?
-What role does her primary care doctor play in her care while she’s there? (Dr. is not affiliated with the nh). I have called Dr., but she referred me to the nh case manager who is not helpful
- How do I navigate the nh to get her the care she needs? Staff seems decent, but we have practically zero details on her care (medication list, OT/PT etc.)
- How should I regularly check-in with the nh? Do they give me reports? Now I just get "she had a good night" or something like that.

This is all new to me. I’m grateful for any insights. Thank you!

Big thanks to all of you for such supportive answers! A quick update is the UTI was positive and we're now treating for that and hoping this will reduce confusion. She has settled in somewhat better now, and making slow but steady progress in OT/PT. This is definitely a marathon, and not a sprint by any means.

Thanks again!
Helpful Answer (2)
Reply to CaringQuandry

I just wanted to say something re your mother's fractured pelvis. I had a fractured pelvis at age 67. It wasn't correctly diagnosed for several weeks--did not show on X-ray or CT, but finally diagnosed by MRI. I was able to walk, just had a lot of pain. When I was finally diagnosed, I was prescribed partial bed rest and using a walker putting only 25% of my weight on my feet. I did not have dementia, but I was never able to figure out how to do it. I've always been super poorly coordinated! In any case, we tried some other expensive and time-consuming interventions that were unsuccessful. However, over time, the pain diminished. We discontinued treatment, and 10 years later, I'm still walking around with a completely unpainful fractured pelvis. I would assume the size and location of the fracture made a difference, but I wanted to related my experience in case your mother's fracture doesn't heal properly and there is a nursing home recommendation. Hopefully, everything goes well for your mother, but just in case it doesn't, at some point you might decide to discontinue treatment as opposed to a more drastic solution. If I had it to do over, I would have stopped treatment much sooner. I might add that at one point a consulting orthopedic surgeon suggested total immobilization (in a cast) for a couple months, which I never would have consented to! I should add that I do have a connective tissue disorder, so this is not the only time I've had fractures and orthopedic surgeries fail, so hopefully I was just an anomaly in this situation. Best of luck for you and your mother!
Helpful Answer (1)
Reply to caroli1

Is dementia contribute to falling? I know my 94 year old mother with dementia fell several times before a fall between 2 aides in house requiring emergency surgery on leg. As far as communicating with rehab facility, request care plan meeting..can also be virtual. Talk to Nursing Director about care plan…if you get nowhere. Go in person & calmly speak to Nursing Director..Go to her/his office & request to speak to her/him. Mom’s confusion because she doesn’t know where she is or remember what happened. To me sounds like dementia..could have mini stroke..did she get brain scan in hospital?
I took my mother to hospital Tues before Thanksgiving..
they wouldn’t let me stay with her..but I saw all tests they did on the computer through portal…She was hallucinating…thought she had UTI..but I saw urine culture “normal”…Diagnosis was just “worsening dementia “…
Hopefully you will get some answers asap! You’re lucky you have siblings who help you & mother. Hugs 🤗
Helpful Answer (1)
Reply to CaregiverL

I am so sorry you are going through this - nothing pisses me off more than the total “non-communication” families receive during these times.

First have you met the Case Manager or social worker for the rehab? If not - find them and if you haven’t had a Care Plan meeting - request one immediately. Her therapist should be in this meeting.

Hospital and facility delirium is real - the confusion and cognitive decline can be scary - (the first time I experienced it with mom I thought something horrible happened). It could be caused by just the situation and being away from home - it can be from medications (including antibiotics - any medication can cause or make it worse) - ask about her medications - review them with the charge nurse - also ask if she has been tested for a uti as well as review her bloodwork as even electrolyte imbalances can cause this. Request to speak with nurse and review all medications - explain this os NOT your moms normal - (they will categorize them quickly in these environments as if this is their normal) be proactive in assuring them it is not - chances are you will all have to advocate at the highest level - nobody comes to you - you will have to be very bold in your requests.

Meet all of her therapist if possible and even be in on her sessions if possible. Create relationships with her therapists - they will help you as mom improves as to what her needs will be moving forward - what they think improve her functioning at home needs will be going forward etc. Ask how many times a week she is receiving therapy - what her schedule is - if you can be in on some of them (covid precautions may not allow that) but I did go in on some of my moms even the first or last 15 to see where she was at and what they are working on.

I can tell you from my experience that I had to ask everything - I had to look at moms medications - bloodwork -meet and be in on her therapy - the first few months after my moms stroke - I had to learn a broken system - nobody guided me - I was taken back how someone just appears at your door and is like “so where you going next” you have 24 hours to choose or tell us. I quickly learned if I wanted communication I would be the one to go to the desk every day for an update and I would knock on the care/case managers door (I asked her everything - any local resources mom would qualify for - if we went home what equipment to get and learned about the DME from her). Don’t be afraid to ask anything as your family will be the one taking her home and will need to know her care - her medications and exercises etc . Be involved in all of it and learn and do not let anyone let you think any question is a dumb question - I assure you - they are not. My moms primary had nothing to do with her rehab either - I did run stuff by the primary’s office - but that was all.
If you feel mom will be able to go back home after rehab - she will qualify for DME equipment - beds - wheelchairs - commodes- walkers etc - you can also ask her PT about getting a custom wheelchair if you feel she will need a long term chair - (if needed - she may not need one). If she does come back home you can also go home with Home Health - it will provide nursing and all therapies to work with her for further rehabilitation in her home - or she could get more therapy at an outpatient rehab if she is strong enough - once she is discharged.
But address the delirium - as it slows down their rehabilitation and if she doesn’t meet the guidelines for therapy they will discharge her - and she will not get the therapy she deserves. Make sure there are no new medications or UTI infections adding to the delirium. Keep coming back here - wishing your family a smooth transition to get your mom stronger and back home.
Again - ask anything and everything you want - and if you don’t find someone who is helpful then go to the next person. You are her voice and advocate - your seeing how overwhelmed these places are.🦋
Helpful Answer (2)
Reply to Momheal1

For a hot second I had to look at your post name...I thought I had written it about my mother!
She fell Sept 29, severely fractured hip. Surgery, then a swift sending to the nursing home rehab . Yep you have 21 days here covered by Medicare, but then was told she was progressing so well at two weeks. Boom we want her out in two weeks. I , being a nurse, said absolutely not. Not safe at their 100 year old home, with tiny rickedy stairs, my dementia with deafness father...... I listed as many safety issues as possible. They magically got her another week w medicare, but I had to find a great assisted living facility asap. Her decreased memory and delirium was stunning to independent 89 yo to totally crazy bed bound delirious mom. Scary. Yes fractures, medications all play a role. I had to be kind/ firm with the nursing home or they would have sent her home in a wheelchair to get her out of there...
One thing to consider , they have a discharge manager and a social worker who you need to become best friends with today. Beg them for help. That's why they are there to help. Call them every other day if you need to.
They are all so busy it is hard to get a hold of people, like docs and discharge planners but you have to advocate strongly. It is very hard to get details, they will call you suddenly. " We have a care conference scheduled for tomorrow" you must go to that.
The NH doc is making all the decisions but you can trust that most likely... just don't let them send her to your house. Be clear and firm. You can be sure they have to give you notice if discharge but you won't have much time... Start investigating today where she can go for continued Ot PT etc..
The ONE thing I learned even as a nurse, is they will send her with left over meds, but won't tell you how often they were giving them. So my poor mom had to go through an awful withdrawal from narcs and anxiolytics when they moved into the AL... She had terrible delirium, confusion, crying, misery for a in December is independent again!!!!!!
Best wishes, this is a hard road but you will SUCCEED!!
Helpful Answer (4)
Reply to Patti2021

I agree with CTTN55. Delerium is real and can really slow down progress. Medicare pays for rehab for 21 days and after that she will be responsible for about $185 per day up to the 99th day. Then it is nursing home out of pocket until she spends down to about $2000. Get ready! Yet do not pay out of pocket with your money for her care. You may not hear about her progress until 2 days before the 21 day mark. They will ask you if you are ready to take her home. Keep in mind the words "unsafe discharge" if you get to that point. Refuse to take her if no one can help 24/7 at home. Make the case worker work. A social worker should help with next steps to Medicaid if need be. You may still need to help her with determining financials for filing if she still is not mentally there.
Helpful Answer (2)
Reply to MACinCT

Oh my gosh! I am humbled by your thoughtful and detailed replies. You've given us much to ponder. I'm taking all of this in and will connect back! Thank you again! :)
Helpful Answer (2)
Reply to CaringQuandry

I'm jumping ahead a bit here, but what is her current living situation? Does she live in her home? With you or one of your siblings? What's going to happen if Medicare doesn't pay for "4-6 weeks of rehab" (because she isn't making progress)?

In other words, who is going to be her caregiver?
Helpful Answer (2)
Reply to CTTN55

Fractures can cause *delerium* in elderly. (It's a big shock on the body + any pain meds).

Delerium looks like a sudden dementia - with any of these symptoms that can come, vary & go: confusion, disorientation, memory problems, impulsiveness, mood swings, irrational beliefs.

Even trained medical staff will sometimes (in error) label this dementia.

However, to complicate things, something's there may be a little undx dementia & the delerium sort of kicks it along to the next level. Sometimes it is temporary, like post op (days) sometimes weeks, sometimes permanent (then may be dx as dementia). All very confusing.

Fracture pelvis cannot be plastered & often can only be treated by 'conservative management'. Basically move & walk as tolerated, with care, avoiding crossing legs. Pain meds as required. Bones do heal but take longer for elderly.

The biggest danger is another fall as being in pain, & affected by meds increases falls risk. And of course what was the original fall reason? If caused by a small TIA (like my Grandma's 10 or so falls) this can happen again.

I'm not saying give up 😞 but it is hard. Communication with Mom's care team is vital.

I would suggest speaking to the Manager/Nurse in Charge. Ask about Mom's fall risk & what strategies they are using. Ask for the Physio for a mobility update. Is Mom 'independant' to walk alone or needs staff to assist or a wheelchair? Ask for updates on her pain level & speak to Doctor to cease strong pain meds as soon as appropriate.

🤞 Hopefully it is delerium & it starts to fade very soon.

Wishing you & Mom luck.
Helpful Answer (4)
Reply to Beatty

Is "ortho" the orthopedic doctor who treated her in the hospital, or who is treating and evaluating her in the rehab facility?  Does she have her own orthopedic doctor?

In my experience, there's typically a care plan meeting within the first or second week, to meet with the family (and patient if appropriate) and discuss what the care plan is, and other questions the family may have.  This would be a good opportunity to raise your concerns, especially the communication issue.  Ask in such a way that you make it clear (gently) that you and the family anticipate being kept informed, whether you get updates from the therapists, or other staff, but ask what YOU should do to make this happen.   If the staff feel they're being put on the spot and required to contact you, it might make them resentful.

We were told not to buy presents for the staff, but donuts and other goodies are okay; they're placed in a central place for the staff to enjoy.  Include a little card with your name so they know who sent the treats.

I asked the therapists if I could participate during therapy and take notes on the therapy activities and workouts, since I wanted to be able to continue them at home with home care after my parent was discharged.

You might also want to raise the issue of your mother's incomprehension of the situation, and ask that they be aware of this so she's not considered hostile to the activities.   You might also want to ask what's the best way for them to keep the family informed, especially given the pandemic situation.  This gently puts the onus on them to provide info on Mom's progress, but it also establishes that you and your family want and intend to be kept informed. 

As to your questions:

I'm not medically qualified to answer the first question, but hospitalization, change of temporary residence, new faces, new instructions, new constraints can all affect someone's outlook, including his/her level of safety and comfort.  I'm sure I would be uncomfortable as well, being with a lot of strangers, required to conform to the facility's schedule and unable to choose my own. 

There will be various doctors making decisions, probably a PCP, an ortho doctor, and someone specializing in pelvic rehab.  They're hired by and work directly for the rehab facility.

In my experience, the treating doctors don't interact or become involved with rehab doctors unless there's an issue.  We took Mom to her ortho doctor b/c we weren't satisfied with the therapist's determination that she wasn't trying.   He wrote a letter indicating that she should NOT be given or expected to stand on the broken leg.   Presenting that to the rehab Admins, the therapist was moved to another facility and a more adaptable and friendly therapist replaced him. 

Get to know the nurses, CNAs, doctors,  & PT staff.   If you can, arrange for various family members to be present at various times (Covid may affect this, though).   Sometimes accompanying your relative to therapy can reinforce the concept that you're still available to help and intervene.  It also provides insight into the various activities.  I jotted them down on a legal pad for future reference.

I asked for med lists, questioned why some meds were being given, especially those I felt irrelevant, such as the mood medicines.   But I knew my parents, and knew they didn't need these.  In my opinion, there's too much temptation to use them for control purposes.   And I gently and politely made it clear that I didn't want to see my parents medicated beyond what was necessary, and prescribed by their regular treating physicians. 

Other than the initial care planning meeting, we weren't given updates unless there were issues, or if we needed to address something specifically.  But I also found that working with the social workers to act as intermediaries worked well.

I think though that with the upsurge in Covid, it won't be as easy to get data or updates from the staff.
Helpful Answer (5)
Reply to GardenArtist

CQ, welcome! Deep breaths!!

When yout mom was discharged from the hospital to the NH, she should have been sent with a list of meds. Get in touch with the Director if Nursing at the NH and find out if they have that. If not, go back to discharge planning at the hospital and make sure it is sent. Right away.

Find the SW at the NH and ask what mom's Care Plan is. There should be a detailed plan of what mom needs. If it doesn't exist, ask why not. If they stonewall you, call the State Ombudsman and file a complaint. And consider moving her.

Broken pelvises need time and rest to heal. The danger is developing bedsores due to immobility. Is mom on an alternating pressure mattress?

Understand that moving an elder to a strange environment after trauma CAN cause disorientation, delusions and the like. UTIs can mimic dementia--get mom tested for a UTI tomorrow. If she was catheterized in the hospital, it makes it even more likely.

Find out if there is a geriatric psychiatrist at the NH. You want mom seen asap.

Check back with us tomorrow!
Helpful Answer (5)
Reply to BarbBrooklyn

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