finding plan B

M1

It's off, my first choice MCF turned her down.  They have another aggressive resident right now and don't want another one.  Need for chronic pain meds was another concern.

I'm devastated.

JoseyWales

I am so, so sorry. I know exactly that feeling. I thought I had placement figured out for DH, and they turned him down after their visit with him. Several others also turned him down after reading his medical file.

Keep looking. You will find somewhere for her. 

Rescue mom

Omg…you’ve done so much. This is incredible. (For one thing I never knew or heard pain meds were an issue for MC.)  But I am so sorry. It seemed like things were finally working out…I can’t imagine having to deal,with all that again. So so sorry.

jfkoc

Hated to see this post. 

The only good thing is that your wife was not admitted and then "turned out". Perhaps the facility is simply not trained and/or staffed to care for more than 1 patient with greater needs. When there is a waiting list facilities can cherry pick.

Plan B...get some outside help??? I know you are in the country so it may be more difficult but worth the investigation. Are you near any agencies???

How can we help besides listening and lending a shoulder?

Ed1937

Oh no! I thought everything was going well. I wish there were something I could do for you both. Will a prayer help?

Vitruvius

Like so many others here I followed your saga with great hope for you. I wish the best for you and your LO in finding the route forward. I hope that includes relief for you from the heartbreak and stress of 24/7 caregiving.

60 falcon

I'm so sorry to hear that, m1. After my wife was turned down, I was really hoping things would work out for you.  And, I can relate to how you're probably feeling.  

Devastated, yep.  I also live in a rural area and options are very few, far between, or pretty much unacceptable, around here.  I have no idea what I'm going to do. Maybe, hopefully, you have some other acceptable options.

JFkoc mentioned cherry picking...I agree that they seem to do that, and it really makes me mad. Especially after they kind of string you along and make it seem like it's going to work out, only to pull the rug out from under you. It takes a whole lot for a caregiver just to get to the point of accepting and realizing the need for placement. Then, to essentially see the doors shut in your face, it is devastating. I'm sorry.

Buggsroo

M1, 

I really am sorry this has happened. It sounded very promising but now this. You don’t deserve this and I was really happy things were looking up for you. I hope you can sort this and find her another place. Sending you a virtual hug.

abc123

Dear M1, can she stay where she is now until you find a suitable place? I can only imagine what you are going through. If you decide to bring her home or if you are forced to bring her home, PLEASE make certain you have the proper medications lined up. I am only offering suggestions here because I care. I realize this situation is completely over my head. The only thing I can suggest is the proper medications in hopes of keeping you both safe and the animals too. If I were in your shoes right now, I'd make it perfectly clear that she will NOT be moved unless you have the proper tools to care for her and in my mind that means medication.

I am disgusted with our country and the lack of proper facilities to care for human beings who have dementia or, God forgive, a mental illness.  Please know that I continue to carry you both in my heart every day and lift you up in my prayers.

M1

More injury to insult:  in talk with the hospital SW this afternoon, it turns out they've completed F'd up all of her medications, haven't been giving her any of her regular meds for rheumatoid, reflux, or hypertension.  Abruptly stopped Wellbutrin on admission.  As well as let her withdraw from her pain meds and then STILL haven't been giving them like she was taking them at home.  Giving her trazodone and Motrin, neither of which she tolerates.

I've asked for a pharmacy consult,  a medical consult tonight, and to speak with the director of nursing.

No wonder she's having a hard time.  I'm going to let the MCF know and see if they would even consider reassessing her.  Though I don't hold out hope.

This is why I had tried to keep her home so long.  This is only the start of the medical F'ups that will kill her.

jfkoc

There is no end to what can go wrong!!! Thank God she has you!!!!!

Jeff86

M1, what a great disappointment.   It’s so hard to make the placement decision, and then to have the facility not accept your partner has to be terribly dispiriting.   

And then the hospital piling on with malpractice level care—your hair must be on fire.  

You are doing all the right things, including being a tremendous advocate for your partner.  Keep persisting.  You’ll get to the right places and answers eventually.  I’m sorry it’s so difficult.  

Ed1937

Hang in there, M1. I know it seems like no matter how hard you try, things find a way to work against you. It seems like maybe you'll have to go over the head of the DON. Somebody is not communicating well, and that needs to be fixed. Best of luck to you.

LadyTexan

Dear M1. I am so very sorry this is happening to you and your partner. You have been through so very much. I am a woman of faith. I continue to pray for you both. You are an amazing caregiver and advocate for your partner. She is so blessed to have you in her corner.

M1

You know, I am not one to rattle or advertise the MD after my name, strikes me as arrogant and rude in most situations.  But by God, if this is this hard for me, what the hell is it like for most folks out there.  And this is 10 days after admission.  

I do have connections and am going to use them.  This is an HCA hospital she's at; my daughter very high up in the pharmacy staff at the corporate level, and the chief patient safety officer for HCA is a good friend.  Talking to her in the morning.

The medical nurse practitioner called tonight and was very helpful and I tried to do my best not to shoot the messenger.  But I told both her and the helpful SW that I thought these errors needed to be disclosed and go up the chain of command.  The NP's immediate medical superior is an old friend of mine; he is to call, and this is also to get reported to the head of nursing, the head of psychiatry, and the hospital administrator.  After that we'll see.  I reported this to the MCF director to see if might warrant reassessment, and I may have the hospital reach out to her as well, as this has clearly negatively impacted my partner's care and possibly her entire outcome.

jfkoc

Please use the MD any way you can. In doing so you not only help your wife but others as well.

Jo C.

Oh,, M; my heart goes out to you, I am so very sorry.  No wonder your partner has had such a difficult time of it.  Just one medical error issue amongst many - Wellbutrin must not be stopped abruptly, and even if tapered, (which this was not), the person can develop agitation, behavioral issues. anxiety and a whole variety of very uncomfortable physical issues.  No wonder she began to slip sideways in behaviors with that and all the other errors.  What a nightmare; I can only imagine how shocked and angry you must feel.

AND . . . you are right; the outcome from all the egregious med errors is in all probability, the causation for the behaviors which is why she was not accepted by the care facility of choice which you had worked so hard to achieve.   You are not the type of person to throw your MD around for ego purposes; however, this is the time to use it loud and clear and to continue to firmly address things as you have planned to do and do it without apology.   Totally unacceptable multiple errors in multiple ways.   (Complaint to Medicare would bring down a load of significant audit and possible penalties for the facility.) 

I hope you absolutely, with great weight, place the onus for the malfeasance of the unit licensed staff and whoever else was involved (including the Psychiatrist if that is true) for causing your partner harm by inducing great emotional and physical distress for her as well as not being able to place your partner at the facility of choice as the med errors were the cause for the negative behaviors which is the reason the care facility denied acceptance.  These errors are now affecting your Partner's very quality of life causing her suffering in the here and now as well as affecting her future in not being able to place in the highly rated facility.  

At the least; no matter if it seems Medicare will question whether to continue to pay, the hospital owes it to your partner to continue to care for her on their unit until she has had her medications restored/adjusted and she has responded well - even if it is on the hospital's dime.  AND perhaps someone of position can contact the Admin. of your care facility of choice and advocate for your LO.   Hopefully, once the meds are corrected, she will be much more settled. 

Keep your combat boots on and sally forth with all flags flying; your have an extensive medical background and will be able to address this in the way it needs to be.

Here we are, all of us together; we may not be able to be there in person, but think of us as being at your shoulder in spirit; we truly are with you in heart and mind.

J.

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M1

Oh I agree Victoria, will likely at least talk to a litigator and have already filled out the state complaint form.  Medicare to follow.

The simple truth, though, is that there simply is not any other MC facility nearby nearly in the ballpark of the one I wanted. IDK that even asking for reassessment will gain me anything; I already offered to pay for additional 24/7 care for her and they wouldn't consider it.  

This just feels like a death spiral.  I'm so exhausted.  I agree with riajean, I just wish she could die now.

White Crane

M1, I am so sorry!  After all you have gone through and now this!  I am holding you and her up in prayer.

June45

M1 wrote:

The simple truth, though, is that there simply is not any other MC facility nearby nearly in the ballpark of the one I wanted. IDK that even asking for reassessment will gain me anything; I already offered to pay for additional 24/7 care for her and they wouldn't consider it.  

This just feels like a death spiral.  I'm so exhausted.  I agree with riajean, I just wish she could die now.

Wow M1, you offered to pay for additional 24/7 and they wouldn't consider it!  That would be the ultimate punch in the gut.  I can understand your desperation and exhaustion. No advice, just so sorry that you have to deal with this.

ButterflyWings

(((M1))) - you are so right, that for an attentive and loving MD caregiver, with a cooperative internist and all kinds of expertise and resources to be thwarted like this, imagine what everyone else goes through. It's just so wrong. And so exhausting yes. My heart goes out to you!

I am infuriated for you and your DP, which does not help at all, I know. So I will shift my thoughts to sending encouragement, and assurances that you can get through this to a better outcome. Literally just keep breathing. Heads need to roll, but not yours and it must have felt like it was going to explode as this disappointing news of mishandling her meds, and the MCF denial which surely was influenced by the botched treatment. She and you, both deserve better.

It is wrong in my view for our medical system to deny compassionate relief to dementia sufferers especially, given the devastating financial and emotional toll to them and their families. Seems like a horrible gaming of the system to keep functionally 'incapacitated' people on the string until their resources or insurance is milked for every last dime. Regardless of their own, and their LOs physical, mental, and emotional pain. I'm sorry, there I go again not being helpful. You and many others have said the same, as has your DP.  In the absence of such laws, allowing Americans to choose a different exit strategy versus being forced to ride dementia out until the bitter end, then at the very least we need to have a medical and memory care system that does no harm. Most health care providers try to comply with that oath, I believe, but this situation is one of too many that make a mockery of that commitment. Been there. Done that. Have the scar tissue to prove it. 

You will get through this, and we are here for you. I hope your appeals bring the resolution you want, and that a good backup plan emerges as well. 

abc123

THEY messed up all of her meds. How in the heck did THEY expect her to behave? Were THEY trying to kill her or just force her into a full mental breakdown? M1, use every card you have. Use every contact you have. It's time for heads to roll. We are here for you!

Joydean

M1, I am so sorry this is happening to your dear wife. It is scary also. If they are doing this to your lo who knows how many more this happens to. I’m sure you are already asking the same question. Who made the decision to withhold her meds? Nurses don’t make decisions on what meds a patient is to take, my understanding, doctors give the orders. If a nurse didn’t give meds, why didn’t the doctors see this is her chart’s. Why was the doctors not aware of meds not being administered? I know too many questions, but this is a very good hospital. Makes me wonder about other hospitals, and how many other patients this could be happening to. This disease is bad enough but when you can’t trust the people caring for them then who can we trust? 

I hope and pray you can find the answers for your dw! Prayers for you and all caregivers.  

Lills

How heartbreaking!  I'm so sorry you and your partner are having to deal with all of this!

After my DH's appendix rupture and a 5-day stay at a hospital, he was transferred to a TLC. The care was horrendous. The staff did not understand dementia.  I was an angry wreck and exhausted. A FEW of the 1,000 examples: The RN attempted to give him a huge antibiotic pill.  When I told her he had dysphagia and therefore can't swallow this pill, she didn't know what dysphagia was.  She actually gave me a lecture on the importance of finishing antibiotics! (The next day she said she Googled dysphagia);  DH was given broccoli and bacon, left food tray for him and expected him to feed himself; asked him if he wanted to get changed and when he said no, she left him (he had poop all over him!); asked what he wanted for lunch (he couldn't talk at that time); not given shower or bath (because it wasn't Saturday!), no grooming done because they expected him to do it, etc.  

I took DH out of the TLC two days early-against the care plan. The same day, I wrote a letter to the Admin of the TLC detailing the (dangerous) care during his stay.  About a week later, the director of nursing called me to apologize AND she she asked me if I would accept an implementation of a mandatory extensive dementia training program for all staff as a remedy.  I accepted.

My point is that I have zero medical background yet common sense told me DH's care was horrible.  I'm happy that I was a momma bear because hopefully, future dementia patients at this TLC will be treated with dignity and offered better care!  I'm sure that after this is all over and you DO get the MC you want for her, positive changes will also be made because of you.  We do what we can.  Again, I am so sorry you are going through this! 

Ed1937

If this happens to a doctor's partner, the rest of us should be scared silly. I hope you use every trick in the book to put the blame where it belongs. Your post from last night seems like you might be doing just that. I'm sorry it has to be so hard.

DrinaJGB

I am so sorry you are having to deal with this.

 I was never much of a fighter before DH got his brain injury and mixed dementia diagnosis; rather pretty easy going and laid back. However, all of that has changed over the years.

 I filed a grievance against a facility where DH was admitted for emergency hip repair when I kept finding him in his own pee and poop every morning. Then later after discharge I was sent a bill for the entire amount of the surgery for over 80 thousand dollars.

  I kept fighting it for close to a year, writing numerous letters and calling and telling them he is medicare and they are only allowed to charge a set amount to him.The billing department was so incompetent I finally gave up and filed another grievance with CFPB as well as Medicare for fraudulent billing practices.

That put a stop to it and I never received another bill.

Unfortunately, we are left to our own devices in this dementia war, and it is both infuriating as well as heartbreaking.

Hoping you find a solution and some peace of mind

Jo C.

Good morning, M.   Am thinking of you and so hoping you get some answers as well as accommodation to the nth degree.  Hope you also get some good legal advice.

Some of what I Post here, I am aware that you already know very well.  However, there are Members reading who are not knowledgeable about some things, so I sometimes include expanded information.

M; it did dawn upon me that your Partner was going to be admitted to a special "community" type of facility where they are a "house" like model so to speak where there are usually about no more than 16 residents each with their room, and they usually have a congregate "living room," as well as an open floor plan with a kitchen and all food is prepared in their own kitchen . . . lots of beautiful accommodations and activities.   This is similar to looking like being at home and the residents feel less stress . . . however; ths model is not highly staffed to be able to care for significantly high acuity residents as well as those with significant behavioral problems.  This is based on my professional experience only.  It may be that your Partner is considered not only a behavioral risk at this point in time, but that they feel she may not be a good fit in the long term.   One would have to ask for an honest answer and hope one gets one if one wishes to pursue it.

IF your LO is kept for additional time in GeroPsych and all behavioral issues are quelled, if the Psychiatrist would speak to the preferred facility, would they consider taking her on a "trial" basis for the first 30 days, I wonder.  They are small home-type units and may not want outside sitters to be onsite; you could ask about that.  Wonder if the Administrator as well as the DON was spoken with and not just the Intake and Marketing folks.

This is me trying to throw everything at the wall and hoping something sticks to get to where you want to be.

You have mentioned being deeply concerned about your LOs medications when in a long term care facility.  I was concerned about my LOs meds too.  What I did was to write a missive stating that NO changes in meds or new meds were to be provided without FIRST contacting and discussing it with me and that I was available 24 hours a day.  I gave a copy to the superving nurse on the unit as well as giving a copy to the DON.

When I visited my LO; at least once a week, I did request to look at the med log book which was kept with the med cart.  I reviewed all meds and especially checked the prns.  If there was a prn listed as being given, I then reviewed the nursing notes on the regular chart to see if the need was documented and why.   As it was, I did read the regular patient record about once every two weeks or so if things were going smoothly.  Never, ever, did I have anyone question that. I had to read at the nurses station with staff being near and that was okay with me and to be expected.

The first facility my LO was in was a dreadful experience; it is a two beer story and too much to present here, it also included a significant med error . . . we moved from that facility very quickly.

The facility I, had really desired was finally able to get have a space for my LO; in was a not for profit, owned by several Dutch churches.  They have a waiting list, so we had to wait to gain a bed.  I was blessed in that I had two friends who are RNs and attend one of the churches who went to bat with the DON and Admin. for us which was really helpful.

The care there was wonderful.  Not a fancy place, but clean as a whistle and well staffed; staff turnover was practically nil, the staff was happy as they were respected.  Can't say enough about them.  They have a Memory Care as well as nursing home care.  They were so kind and caring with the residents and had no problem with my viewing the meds and medical record.

So hope you will find a care center to provide such good care too; it may be farther away from your own home, but quality of care is paramount.   She is not a candidate for going home at this time which is so sad; you are doing the very, very best you can under the circumstances.   Like everything else with dementia; nothing is going to be perfect, but you are a wonderful and caring Partner to your LO and will be the best advocate there can be.

J.

 

M1

Well, what I'm astounded about now is that I have sat by the phone all day, and not one soul from the hospital has called me.  I have had a couple of emails from the hapless social worker.   She said she was going to try to get me "special permission" to go visit:  like that would solve anything, frankly it would probably make everything worse because all she would want to do is come home and it would crush her to see me and not be able to leave with me.

I requested a pharmacy consult and even gave them the name of the resident on call (courtesy of my daughter).  That may surprise them.

I filed state and Medicare complaints.  Worry a bit about retaliation, because she's still there, but I think both were warranted.  Full disclosure:  I work for the company that handles the Medicare complaints (but I work for the Medicaid dept., not Medicare).  That may also get their attention.  I let my boss know today of the potential conflict of interest.

I emailed the elder care lawyer who redid my wills etc. sixteen months ago and asked her for the name of a litigator.  And I am trying to document everything, every phone call, etc.  the email trail will be self-explanatory.

Of course none of this leaves me with any energy to actually go tour other MCF's.  And of course my poor partner just wonders WTF is going on and why she can't come home.

toolbeltexpert

M1  I can empathize with you another day, seems like nothing is moving. I am amazed at your knowledge of the system..  it sure sounds like you lit a fire and it's gonna get a couple of hotseats for some folks. Your LO sure has a great advocate.  I am hoping you get your first pick. I understand not being able to move towards a plan b with as much as you have accomplished to keep plan a.

Jo C.

How disheartening, and what an impotent feeling to be left suspended; especially under the circumstances and to make this even more negative, they know you are a physician.  M1; in my long professional experience in a variety of med centers, when something seriously untoward happens, the center circles its wagons very quickly.  Some facilities will be more benevolent in their approach, many others definitely not.  You are now in the position of needing to actually position yourself and your partner for the best outcome.

The med center will protect the medical information; the Risk Management and QI Directors will in all probability be in place and have already reviewed the situation and documentation.  Following established protocol; depending on the circumstances, the med centers legal folks may even be contacted for advice.   I would not worry too much about retaliation - the usual way for the facility to react is to appear to be helpful on the patient's behalf and to cover themselves in every way they can. However; depending on the corporate management approach, the one negative may be that they may possibly look to discharge your Partner asap to have her out of their facility. 

You can express that you cannot and will not take your partner back home; there is far too much danger as it is extremely unsafe for her to be there.  Therefore, they cannot discharge her without a place to be.  Sadly, it may be that a placement may have to be farther from home since you are located in a rural area removed from the nearest towns.

Best to have an attorney for advice and to perhaps have one in the specialty of Medical Malpractice; that is where the most skilled advice would come from. 

You already know to be cautious about every word you speak, even with the social worker, as your conversations will be documented and can be used in the future if they need to do so.  Nothing in writing unless your attorney has cleared it. If you have not already done so, document the conversations you have had about this and with who and what your statements would have been to the best of your recollection.

An attorney may want to make a request for a full copy of the entire medical record so as to have it available; at this time though, it would be a huge red flag for the med center.  Wonder if now that electronic records are used, if it is easy or even able to be done for the staff to go back in to change or delete documentation.  The Risk Management and QI documentation may well be in the non-discoverable category.

At this point, what do you personally think or feel that you should do?

You definitely want to keep up with what is happening with your Partner's care and how she is doing.  That is compartmentalized from the other stuff going on.  Take the high road on that, but be "on" alert at all times knowing that documentation will be kept every step of the way. 

Were you told that you would be contacted and if so, would it be a specific person or persons?  If that was done, you could always make a call to whoever informed you of that and state that you are waiting for the call(s) as you have not yet had such a contact.

Considering the seriousness, it is understandable that you filed complaints.  Did you tell anyone at the med center that you were doing that?  If not, do not inform them.  If so, just do not bring it up again.

For those reading this, if you feel you need to make a complaint regarding care issues for a Medicare patient, here is a link describing how to do that:

https://www.medicare.gov/claims-appeals/file-a-complaint-grievance/filing-complaints-about-a-doctor-hospital-or-provider

I have had one instance where dreadfully egregious care failures almost cost my elderly MIL her life.  Horrible; she ended up in ICU and was never the same.  I was the person who was managing what happened; this by her family's choice .  It was complex, and so involved, and had so much that needed to be done.  It was exhausting - I would lie awake in the middle of the night with my head whirling as the thinking just did not stop.  Did I do this, did I need to do that, what was going to happen, etc.  We did indeed obtain a good Medical Malpractice attorney who became our guide.  That was very helpful, he was also a kind and caring person. 

You could use someone by your side to help carry the burden, and it sounds as though that would be a legal person who can help calm the waters and clear the path.

As always, my warmest thoughts and hopes go out to you and your beloved Partner,

J.