Bewilderment

Daisie

Hello everyone. Looking for some insight here.

The background is (for those who don't know), admitted mom to hospital at the beginning of Aug for delusions, hallucinations, and dementia (not safe at home). Got her Medicaid approved and found a MCF. Moved her in on Aug 19. About 8 days later, she was rushed to ER with what turned out to be Covid. Developed double pnemonia as a result as well. Rallied and released about 10 days later back to MCF.

Since in MCF is not walking because of a fear of falling so using a wheelchair while PT works with her to get her up and moving again.

Here's where the bewilderment begins. I went to visit her yesterday and she seemed somewhat weak, especially after her PT appointment. RN of the MCF stopped me on the way out because she was "surprised" I had not mentioned to her how wonderfully my mom is doing. I didn't find her to be doing wonderfully and said so. RN said she was slowly but surely getting better.

Got a text at 5am this morning from RN saying mom was being rushed to ER due to nose bleed and plummeting BP and O2. Went to ER where they released her because they said she was fine. Went back to MCF early afternoon.

Around 4, I get a text from the RN saying things were bad again and called EMTs. About 30 min later, EMT himself called me to say my mom was perfectly fine and that he can't figure out why RN called. I asked if the thought that maybe there was some kind of error or lackf of training at the MCF and he said yes, that's all he can attribute it to. He said they wouldn't be transporting her to ER as there was no need.

About 20 min later, I get a text from the RN saying things are bad again and calling EMTs back (they were still in the driveway). A few minutes later she texts again saying EMT mad at her and not happy with the situation. About 10 min later, EMT calls me again saying RN is exceedingly rude and in violation of state law because she wouldn't give him my mom's health history from the day and he was having to piece it together. She allegedly kept saying she didn't have time to talk to him and that her staff knew everything (which they didn't). He said that no one told him that my mom's vitals would drop when she sat or stood up and that he would be transporting her to ER. He didn't eve. know about the nosebleed until I told him (it was nothing serious…left over from Covid and being on O2 and nose sores, etc.). He ended the call by saying he reported RN to the ED of the MCF and would be filing a report with the state because of the violation. I said, fine, do what you need to, just please let me know where my mom is going so I can be there.

At the hopsital, the ER doc told me she knew of the argument that ensued between EMT and RN. Said that MCF told EMT they could no longer take care of my mom, they don't have the staff, and can't provide the care she needs. I told doc this was the first I've heard of this since supposedly everything was so hunky dory just the day before!

I'm dumbfounded because my mom's roommate is 109 with dementia for God's sake and I see the residents and their level of dementia and need. I see some residents bedridden and in wheelchairs without the ability to communicate or maneuver about. I don't get why my mom is suddenly the problem.

Going to talk to the ED tomorrow. ER doc suggested I work on getting my mom out of there and into a facility that will give the care she needs and willing to do so. I have her in the PACE program through Medicaid and they can help coordinate a move.

Any thoughts on how or what I should address with the ED tomorrow? I want to make sure I manage my expectations and don't have too high of them when it comes to dementia and memory care. I'm also mad because some of my mom's things seem to be missing from her room and I can't find them anywhere. If my mom moves, I will insist on being the one doing her packing and transporting her things.

Phew. Thanks to those who stuck around to read. It's a good drill for me for documentation purposes, too!

psg712

Wow. I am so sorry that you have to deal with this battle on top of the struggle of your mom's dementia and recovery from covid.

I would just outline the events for the ED just as you did here. Ask for the facility's guidelines regarding level of care they can provide, noting that you see residents who are more physically disabled than your mom is.

Have most of the communication problems been with this RN? The ED won't be able to tell you this, but he/she may have received other complaints and will need your documentation too.

It's not unusual for personal possessions to go missing in MC. Residents wander into the wrong room and pick up another person's belongings, or the person herself squirrels it away or carries it out of the room and lays it down in a common area. It's the reason they should not keep costly items or anything that has irreplaceable emotional value in the facility. That said, of course there is the possibility of theft by staff. Anything truly important to your mom should be labeled with her name.

Please let us know how the meeting goes.

Anonymousjpl123

@Daisie I am so sorry for this stress. Unfortunately, I had similar experiences at a very high end MC. I think a lot does have to do with the experience, training, and knowledge of MC staff. My mom had several ER trips that turned out to be Covid/UTI, but really just demonstrated staff didnt know how to deal with her. It was devastating and very disruptive and stressful.

I would be honest with the director about your concerns. List out exactly what your concerns are: mobility, physical health, and behavior. I would also get clear on expectations in terms of your role in coordinating health care versus theirs. Most importantly, see how they respond. Are they open to working with you? Are there things they recommend you do to ease your mom’s transition?

The biggest thing I learned is that you and your mom have rights. You don’t have to rush, and the MC needs to give you formal notice, not the ER. If you have one I highly recommend looking up and calling your state’s long term care ombudsman. They can be really helpful.

Daisie

https://alzconnected.org/discussion/comment/223808#Comment_223808

Everything was clearly labeled. You're right that my mom may have wondered with something and left it somewhere, so it should be somewhere in there. Thank you for your kind words and for making me think!!

The whole thing started with covid. They swore up and down that they tested her as negative literally within a few short hours of going to the ER, where she had a resounding positive reading. ER couldn't understand it, either. Then, when I told the MCF, they tried to blame everything and everyone else. The RN came back less than an hour later, stating she had just gotten through testing all 50 residents, and all were negative. Reg flag - there was no way the testing and results could have happened so fast for 50 residents being tested by one nurse. They wanted to blame me for bringing it in, but I hadn't even been there yet to visit my mom, so it came from somewhere inside. It was just aggravating.

Today they are bending over backward for me because they know they screwed up yesterday. I have a call into my mom's social worker to discuss our options.

Daisie

Thank you! The social worker said she was impressed with one of the staff…I asked about the rest, and she said she honestly didn't know, but most places have a couple of stand-out employees, and that's often it. It's a crap shoot. I don't expect perfection, but wow. That was a cluster F***, to say the least, yesterday. I can even believe the EMT called me and complained about everything. I've never gotten a call from a paramedic which tells me communication broke down.

M1

Have you considered putting her on hospice? Might help....

Daisie

https://alzconnected.org/discussion/comment/223829#Comment_223829

Yes, I'm supposed to talk to the social worker in the next day or two after a doctor evaluates her health (they are running a bazillion tests) and then go from there. I'm inclined to move her to a facility that is better equipped to provide consistent care at the palliative level and work in hospice as needed. I'd bring her back home at this point and get 24/7 care if I could but I don't think that would be emotionally healthy for me (not to sound selfish). I also work from home and it would be too much.

Right now my primary goal is advocacy and getting my mom the care she needs and deserves. Heads will roll if necessary at the MCF today.

Ci2Ci

https://alzconnected.org/discussion/70736/bewilderment

Make sure that you do NOT take her back home even temporarily while you sort it out, or you could jeopardize Medicaid options. And, I highly recommend that you communicate, or at least recap phone/in-person conversations, in email. Especially when getting public assistance, I think having that written paper trail (of convos, inquiries, voiced concerns, requests) is important.

Best of luck.