They are planning on sending her home

Hoot619

I just got a call from Northwoods saying that the hospital is sending her home. They wanted Northwoods to help me at home. She told the hospital there wasn't anything they could do. They have been out in the past helping her but quit when DW refused to help. 

She let the hospital people know what I'm going thru. She knows I can't do it.

So when the hospital calls I'm going to let them know she ISN'T coming home. It is not safe for her and I can't help her anymore. I'm not going in to the hospital either.  Hoot

Hospital just called to tell me they are discharging her, I let them know she wasn't coming home.   They asked me what do you want us to do. I told them again she is not coming home. Put her at the curb she ain't COMING home.  Hoot  They also said that they had Protective Services there, what in the heck was I doing if not protecting her.. ! When I called 911 I told them why.

jfkoc

Good for you. This may be interesting if not useful;

https://auburnhillselderlaw.com/lawyer/2012/07/15/Medicare/Hospital_Discharge_Issues_bl4665.htm

loveskitties

Hoot, I am so very sorry for the situation you find yourself in.  I was in that same situation with my father.  My 97 year old mother was his sole caregiver (her choice) and there was no way that he could return home even with in-home health care.  The hospital said if they didn't discharge she would have to pay out of pocket as Medicare would stop covering.

While parents lived in a fairly large city, the hospital and case worker were of no help at all in finding a memory care facility.  I was left spending hours and hours on the phone trying to find placement.  I was fortunate to find placement close to me, 1 1/2 hrs away from parents home.

I also had to file 2 different requests for review by Medicare to keep her from having to pay out of pocket.  While Medicare declined both, the hospital didn't end up charging her for the 2 extra days it took to get the transfer done.

I am not sure how you stand legally with refusing to take her or what that means to you financially.  It may be time to get legal advise.

Wishing you best outcome of this terrible situation.

MaryG123

Hang in there Hoot.  As we know from others, they will try their hardest to get you to take her, but you know it’s not in her best interest.  I just read the article linked by jfkoc, which is great.  It sounds like you need to appeal the discharge as per Medicare protocol, asap!

Jo C.

Hoot, be cautious not to be manipulated, but also be cautious about what you say.  If this were me, I would probably make an emergency call to an Elder Law Attorney.   Yes, some money involved, but at least you would have a legal advocate who can stop the madness and manage the situation and keep YOU safe.  If you call Elder Law, tell them it is an emergency situation of great importance and stress that so they do not try to put you off for a few days or more.

Continue to say that you exhausted and overwhelmed and you cannot take care of her any longer; the care level needs at home are extremely high; she refuses even to even let fecal diapers to be changed;  refuses to let you wash her when she is covered in feces; many days she will not permit her diaper to be changed for hours all day into the night; she pees and defecates on the furniture which you constantly have to clean; she throws her foods on the floor; she will not eat, she screams, she lashes out at you; she physically fights you hard for any care attempts; etc., etc.; refuses bathing, and these dynamics go on all day and even into the night.   You have been doing this for months and are no longer able to continue to provide care as your own health is sufferering, and are not willing to risk your own safety to your health any longer; it just cannot and will not be done.

What do you want they asked?   She needs placement in a care facility that can give her adequate care 24/7 -  that is all that can be done - please help me find a place to admit her into care.

Hoot; do not insist this be Memory Care.  If it is to be Nursing Home level of care if that is the only option available; I would take it . . . . you can have her transferred elsewhere later if you wish, but at least she would be in care.  If the only place to take her is miles away from where you want her to be, I would let them place and then transfer later when you can get another bed closer in to home.   You just need for her to be in a safe, secure place and then you can take it from there.  Priority is placement; nicieties can come later.

You do not want APS to cause you problems and be accused of elder neglect or elder abuse.   You have already told the hospital staff or was it the police officer that you are afraid of hurting her physically, and now, to, "put her at the curb."   No matter how frustrated you feel, watch your back in what you say and continue to simply state you cannot provide that level of care, it has become undoable . . . it is impossible . . .  you may have to say it over and over and over.  Not going to take her home - period; "we are far past that."  You are exhausted, you are overwhelmed; you are not feeling well, and have nothing left in you to be a 24 hour caregiver and are unable to do it any longer and not willing to have your own health further impacted.  Headaches?  Can't sleep?  Anxiety?  Exhaustion?  Stomach problems?  Balance getting dicey?  Shakiness at times?  Anything you have been feeling if they ask you how this is affecting you.  How about your blood pressure?  Why have you not seen the doctor IF they ask you that . . . well; there is no time and you are overwhelmed and exhausted.  (Do NOT talk about going fishing any more at this point. If they know and ask, it was your son trying to find a way to help you which was nice of him but not much help.)  Any of this and more if it is accurate.

Don't know how to say I am sorry sufficiently.   So wish I could battle this for you, but I cannot.  NOTE:  IF the patient CANNOT return home as care is inadequate and she is not safe due to her behaviors, and this is the issue, then the hospital cannot send her home without your permission AND if this is so, then they cannot deliver a Medicare denial letter which is a, Notice of Non-Coverage.  Only if you get that letter do you need to appeal.  If they ask why you have not been in, let them know if you have been having stomach problems or feeling unwell in other ways.   You should not have to address this, but it may come up; it is a small rural town and facility, things work a bit differently.

Aside:

Hoot; what age are you and what age is your wife?  That will help me put a bit of a framework into place.  If you have health issues you wish to share, that is okay too.

Keep us up to date, we are here.  We care about both you and your wife.

J.

Hoot619

I'm 80 and she will be 78 Nov 11. I did call the Elder Attorney's medicaid gal and she suggested the Marquette area for placement.  I called back to Tracy the  patient advocate and told them to try Marquette area. 1 1/2 - 2 hour drive or more depended on the weather

Medicaid gal also said that what Newberry wanted for placement 10,300 if they had a bed is all wet, she is qualified already.  Wherever she goes just have to contact Elder Lawyer and they will handle it.  Well dishes almost done and entrance long runner washed down- darn dog washed it first but didn't use soap!

Grab a bite to eat and work on open talk for tonight.  Thanks Jo C you have been a lot of help and I'll watch what I say to Tracy so I won't let my mouth get me in trouble.   Hoot

Sligo177

Hoot,

What a long, impossible trial you've had.  I hope the end of the tunnel is near,  and you can soon breathe easier.  None of these sayings go together very well, but you know what I mean.  God bless you and DW, and I echo what others have said.  You're very strong!!

Jo C.

What a dog - eats off the counters and "washes" the living room runner without being asked; sorry about that - but I bet he is loveable and loyal.

Okay; they cannot find something closer?  The Atty was not meant to find a NH; they were to be advocates should the hospital try to send Jan home or if they tried to serve you with a Notice Of Non-Coverage for Medicare.

Anyway; Marquette sure is a long way off; I know Negaunee has some faclities but they are almost as far as Marquette.  Nothing of consequence seems to be in Ishpeming.  I had a friend in Ishpeming who is an RN and who is familar with NHs, but I have lost her number; drats.

You are 80; it is absolutely inappropropriate that they try to send your wife back home with that acuity of care needs; someone trying to take the road of least effort?  Don't know; but if that were my staff member, she/he would not be doing that.  They need to help to find you a facility, and if you need it to be, one that has a Medicaid contract for long term care.  That is what their Case Manager or their Discharge Planner or their Social Worker needs to be doing.  I was Administrator of Patient  Care  Management in acute hospitals; these departments were some I had in my areas of responsibility.  I once again am so sorry for the stress this has heaped upon you, but you are a short timer now; just a bit longer and all will be done

I know that Marquette is a tribulation to travel, especially in hard winter when it comes , but as said, once she is place, you can continue to see if your preferred place that has you on its waiting list will come up with a bed.  You may want to contact them and ask just where your name is on the wait list - are you number one, or are you farther down?  If number one, you could ask to speak to the supervisor or Director of Nursing and let them know your wife is in the hospital and is going to discharge soon and is not able to return home - could they manage to find a bed for her?  May be worth a try; nothing ventured, nothing gained.

Keep on and do let yourself relax and do something for yourself.  A hot pasty sounds good to me right now, is there a pasty shop near you?  They freeze well too. 

Not long and this burden will be lifted and both you and Jan will be the better for it.  She will be calmer without the at-home triggers and you can breathe more easily again and get rested and recouped.  Once again, best of wishes,

J.

jmlarue

Try not to let the prospect of long-distance travel be a barrier to getting your DW placed. There will come a time when your DW won't know if you visited her every day or once a month. Unfortunately, there may come the time when she doesn't remember who you are at all. It happened to me, today. Four weeks of in-patient care in the Psych Unit. I was finally given the green light to visit. DH didn't have a clue who I was, but the whole episode was upsetting to him. He appeared ready to do battle with the Aides. I left pretty quickly. It's unlikely I'll return any time soon.

Hoot619

Thanks again all, I don't care where they place her as long as she gets good care. Keeping her cleaned up and not soaking in urine like it was happening here.    I'm don't  mind the snow covered roads. Now snow storms and blowing snow I'll take a rain check unless it's deer season then it's a little different. I have a good reason to be out there.

jmlarue, I'm sorry he didn't recognize you, this disease sure cuts us to the quick. My wife recognizes me and then the look on her face changes and she would start yelling. Lately it happens with anything I try to do for her  Then every once in a while a faint glimmer of what she used to be like.  Oh how I miss that.  Hoot

Hoot619

I went in to see her but stopped at Social Services to see Tracy first.  She has called 12 places and no openings. I asked her to try Northern Lower downstate, she already had tried.

Went in to see wife she was sleeping I dropped off her black bear and left without waking her.  Hoot

jmlarue

I hate to say it, but experience with my DH tells me that the "no openings" excuse isn't the whole truth. The honest statement is, "There are no openings for someone with difficult behaviors." We might try to argue the point if they gave us the honest statement. There is no arguing with the flat-out "no openings" statement.

My biggest concern for you at this point is that no one seems to be working on moderating your wife's behavior and, without that, doors to care facilities will continue to slam shut. Has the possibility of placing her for psych evaluation and treatment been dismissed out of hand?

dayn2nite2

I actually believe there are no openings.  Hoot is in Michigan’s Upper Peninsula, and care facilities are not plentiful.  He mentioned a place in Manistique last week, I casually looked it up and they are licensed for only 10 total Alzheimer’s beds, which I’m sure are all occupied.  This is even before we get to the behavioral issues.

I don’t even know if there are any geripsych units up there.

Living in a less populated part of the country might be great when healthy, but getting care for something like dementia is a nightmare.

60 falcon

Hoot, since you're not finding openings at MC places near you, you might want to check out the Iron County Medical Care Facility in Crystal Falls.  They have a 24 bed secure MC.  They call it the Willow Living Center.  It's a long way from you, about 4 or 5 hour drive.  (For those of you who don't know, the UP is about a 5 hr drive across). I know someone who's DW is there and he seems happy with the place.  I know they'll accept Medicaid funding.  I would've considered it for Pat but I would've had to change up our financial planning because I live in WI about an hour west of there, right on the border of the UP.  Sorry things are so tough.

jfkoc

MC in the UP has got to be a problem and the fact that the UP must be beautiful certainly does not make up for that...sorry.

Fingers crossed that a solution will come along soon. 

Judith

added:  teallakeseniorliving.com not close but 46 beds

Hoot619

The way Jan is now all she needs is a bed, daughter Jennifer and I just left the hospital and she has seen the  big change in less than a month. The way she is now she needs total care. I really felt sorry for my daughter, she loves her mother so much and Jan was  yelling  and threw her bear at her. She was in tears when we left.

 Hopefully it is the start of the end. But what I have learned on here it can take forever.  The nurse said if they don't touch her everything is ok - touch her and hell breaks loose. Tracy the patient advocate is trying hard to find a place for her.  Downstate and the UP of Michigan. Hoot

Hoot619

Jo C ,  Since our dishwasher is on the blink  Bucky de dog does the dishes now too. Yep I got me a smart dog. Hoot

dayn2nite2

60 falcon wrote:

Hoot, since you're not finding openings at MC places near you, you might want to check out the Iron County Medical Care Facility in Crystal Falls.  They have a 24 bed secure MC.  They call it the Willow Living Center.  It's a long way from you, about 4 or 5 hour drive.  (For those of you who don't know, the UP is about a 5 hr drive across). I know someone who's DW is there and he seems happy with the place.  I know they'll accept Medicaid funding.  I would've considered it for Pat but I would've had to change up our financial planning because I live in WI about an hour west of there, right on the border of the UP.  Sorry things are so tough.

Hoot, this is probably at least something to check out for sure - especially since Falcon knows someone who's happy with the care AND they're in the UP, although it's across on the other side.  Better than the Lower Peninsula.

Please call them tomorrow and tell them your situation and see if they have any beds, the number is 906-875-6671.

The web site for the facility is http://www.ironcountymcf.com/

Jo C, our Yooper-turned-Californian, may also be able to suggest some other areas.

jmlarue

Jeez, Louise. The poor woman needs some sort of sedation so the nurses can clean up her incontinence and give her something to eat or drink without all hell breaking loose. I don't understand these doctors' and hospitals' reluctance to treat this extreme agitation. It isn't helpful for anyone, least of all the patient. Have you asked anyone if she would qualify for Hospice now? If it was clear that she was "comfort care only" I can't imagine anyone can reasonably say she is being kept comfortable in this state of angry agitation.

Hoot619

I will call in morning, will  try anything to get her placed.  Doesn't matter to much the distance. Get her  here later when there is a opening..  Hoot  I'm off this for tonight.

Ed1937

Hoot, just thinking about you, and hoping things change quickly for both of you.

Hoot619

Everybody, I called and talked to the admitting guy , he is hearing my story over and over again from from a lot of caregivers.  They are filled up and he said you wouldn't believe the waiting list.   He reinforced what Jo C and others said, DON'T bring her home after what I told him.   Thanks Hoots  

  Hoots suppose to be Hoot  This darn thing keeps making mistakes and I'm getting tired of correcting them. I've worn out 3 dictoonarys already and look it did it again.

Ed1937

Well, Hoot, at least you are not taking her home, and that's the good part. It really sounds like this could become a national crisis. I'm sorry.

Jo C.

Off with the Peer Volunteer hat.

 NOTE:  Teal Lake facility is located between Ishpeming and Negaunee, but is only for assisted living and it really must be "assisted" only.   They do not accommodate the type of patients we are discussing here, or the level of care your wife requires. 

HOOT:  I am confused.  QUESTION:  What type of doctor or doctors are seeing your wife and ordering her care?  This is really key to all else.

Reason I ask is, why in the world has medication not been intiated and adjusted as necessary that would manage the behaviors that are present?  It makes no sense especially when the need is so great.  Perhaps I am missing something.

One of  the things I had mentioned in a prior Post was that if your wife was admitted as an inpatient, immediately, ask and insist that whoever is the Primary admitting MD, to please write an order for a dementia specialist to come in as a consultant.  That could be either a Neurologist who sees dementia patients as a routine part of his/her practice; or a Geriatric Psychiatrist.  Whichever is available up there in your area.

This is key to everything else . . . there are medications that can be prescribed and adjusted to meet the needs of the behavioral dynamics as well as her suffering.  The behaviors are presently a huge issue and also may be blocking her being accepted as a patient in a long term care facility.

You would be best served to have the supervising RN on our wife's unit check the record and inform you of which doctors are seeing your wife and what their specialty is.  I so hope it is just not the primary care MD.  IF there is NOT a dementia specialist in consult, I would insist/demand that a dementia specialist be ordered on an urgent basis so there is not too much lag time waiting for the consult.  The Supervising RN can call the primary MD and obtain such an order.  (As I recall, your primary care MD has not been responsive or followed up despite contacts with the office, so the hospital RN may be able to facilitate this.)  I would not settle for anything less; it is what is medically necessary for the patient.  

If there already is a dementia specialist in consult, then if this were me, I would have the RN inform me of what meds the specialist may have ordered if any.  If none were ordeed, then I would contact him/her and ask just WHY medications have not been prescribed for the behaviors; I would specifically ask about Risperdal or Seroquel.  IF they have been prescribed, since the behaviors have not changed, I would want to know, since the meds have not been effective whatsoever, WHY the meds have not been changed or adjusted to meet the needs of the patient who is suffering as well as not being able to find long term care to accept her. Many times, the first med prescribed by a specialist will be an antidepressant; under such circumstances, this is not always effective. (On this, I speak from experience both personally as well as professionally.)  Sometimes a Consult will be one time only with no other visits; other times the Consultant will continue on the case.   You do not know if one has seen your wife, if he/she has prescribed any meds, or if the Consultant is continuing to see your wife. This is easily checked with the help of the RN.  Whatever dynamic is present, that specialist needs to either be ordered if it has not been done, or that specialist needs to make additional visits and adjust treatment as necessary.

That is a lot, but the treatment issue needs to be met head on before anything will change.

As for locating beds; this can be an issue no matter where one lives.  If it is behaviors that are blocking her ability to gain a bed, that can be addressed as described above. If it really is that there are no beds, then what usually happens is that the Social Worker will begin to make calls in what I call a, "concentric circle."  That is; calling the long term care facilities closest to your area and then calling out farther and farther away until a bed is finally found.  If your wife's behaviors are adequately managed through adequate treatment, then you may want to try having the closest facilities contacted again to see if a bed can be gained.

M1 is a physician with much more knowledge than I have; perhaps M will have some input on the physician and other aspects of all of this.

I do not know whether there is a Geriatric Psych Unit in Marquetted county.  Not a regular Psych Unit as that would not meet needs; but a specific Geriatric Psych Unit/  Might be worth checking out, but even if there is one, whether your wife would be a candidate for such care at this point may be questionable.

Too much input; I apologize. It is just one of those things that I liken to, "trying to nail Jell-O to the wall."  There will eventually be an answer.

J.

Hoot619

The Newberry hospital wants her out of there and are trying their best to find a place for her. Every place they have called is filled up .  On the meds the ones she was on before she refused to take in any way shape or form. Marquette Neurologist Dept knew I took her off all meds from blood pressure on.  Twice a week at the most she was getting them and that was  on a 7 day schedule.  I'll let them know that Marquette Neurology Dept was treating her.  Hoot

jfkoc

Hoot,,,sorry for the misinformation re Teal Lake

We have a bunch of posters who have expertise in areas that are particularly helpful with certain problems like Drs, social worker or lawyers. Sometimes you can tell their occupation by what they write...everyonce in a while they will self identify but usually they identify as "caregiver".

60 falcon

What Jo C. said are all good points.  There are a lot of similarities between the situation you and your wife are in and the situation me and Pat were in.  

Pat had bad delusions, hallucinations, agitation, anger, and was resistant to any hands on care.  When I had her taken to the ER, my intent was to find a facility that could better manage her meds to deal with some of these symptoms.  I was pushing for her to be admitted to a geriatric psych place, no matter how far away.  I learned the hard way that in WI, that simply doesn't happen. (Not sure why WI is different from other states but that's a different topic.) Pat was denied specifically because she had Alzheimer's.  

She ended up in a regular hospital.  From day one I insisted that she be seen by a psychiatrist. The regular hospital doctors, the hospitalists, were of no benefit to Pat at all.  It was the specialists who made the difference. Pat's symptoms continued while in the hospital.  She was right across from the nurses station and when she was agitated, she could be heard cussing and yelling clear down the hallway.  She did have a psychiatrist who saw her by video appointments and it was essential that I was present, otherwise the appointments would have been useless.  

Pat was in the hospital for four weeks and it took 2-3 weeks before the meds became effective (or maybe she progressed past those behaviors, not sure).  The hospital tried hard to place Pat in SNF and or MC.  Nobody would take her because of behaviors or no open beds.  The behaviors were a huge problem for placement. Hell, the hospital was even beginning to try to place her in assisted living, what a joke. I repeatedly told the doctors and hospital discharge coordinator that it was their responsibility to ensure that Pat's symptoms were stable prior to discharging her anywhere.  I told them that if they discharged her while not stable, that would be a failure by the hospital. 

Pat's Alz continued to progress quickly the whole time and it became obvious that she wouldn't be walking out of the hospital.  The palliative care doc was great and he advocated for Pat with the psychiatrist to get him to be "assertive"with meds to deal with her symptoms.  Pat died after the fourth week.

I just wanted to share with you what we went through because there are some similarities there.  Sorry.

Hoot619

Just talked to Tracy and they have her on a med Zyprexa but it causes her to sleep a lot. She was ok til they tried changing her at bedtime and also when we were there Tracy said they think she is in the end stages of the disease. She said it will be hard to place her and that they couldn't keep her there.  Hinted on me getting some help here at home.

Jo C   Do I a choice in the matter.  I don't want her here I can't care for her any thing I try to do for wife doesn't work anymore.

I was feeling ok but after hearing that again-  That feeling sure flew away   Made my meeting this AM and have another at 7:30 and plan on being there. I'm not thinking of drinking it sure isn't the answer to our problems but I have to share unload as much as I can.

I was thinking on how I cared for her and what I have said when things overcame me and I couldn't keep my mouth shut .  I did the best I could, I love her dearly but at times sure didn't show it. Hoot

jmlarue

"Tracy said they think she is in the end stages of the disease." 

With that being said, I do think it is worthwhile signing a POLST that designates DNR status, also the Advance Directive that asks for "comfort care only" - no invasive treatments like ventilators, tube feeding, or medications to treat underlying conditions like high blood pressure. Doing this should allow you to ask for Palliative Care or Hospice. That should bring additional pressure on the hospital to actually keep Jan comfortable (i.e. sedate and calm) so she can be given compassionate care. Hopefully, this could also open the doors to a nursing care facility, where Hospice can provide additional support at the facility to manage her meds and keep her comfortable.

I know these are hard decisions for us to make for our LOs. Maybe you've already done them - but, if not, I recommend them for Jan's sake. This is really the only way to assure that she is made comfortable, even if it should shorten her life. Once I did this for my husband on admit to the Psych Unit, there was a major shift in attitude about treating his psychotic behavior. The doctor's were more willing to treat him with meds that carry a greater risk once I confirmed that I was resolved to let him go rather than prolong his life with great suffering.

I'm not certain on this point - perhaps, Jo C. can advise... I think a designation of Hospice for Jan turns the responsibility for securing an appropriate level of care for her before they can discharge. That may mean preventing them from trying to discharge her home when it isn't possible to get Hospice care for her in your home. 

toolbeltexpert

Hoot I do know what you are going thru. You will triumph,  hang tough. I know that you have the best advice and some of it is just what you need, you will know what is right for your situation. Your a good man Hoot, still praying for you.

jmlarue

I've spent the whole morning on the phone. A Social Worker with my Regional Council on Aging recommended that I make a report to Adult Protective Services about the unsafe conditions for me and my husband should I be forced to take him home from the hospital. It was her opinion that APS could make it clear to the hospital that discharging him home would not be an option if it threatens the safety of the patient or the caregiver. I made the call and got a very sympathetic ear and a promise that I would receive a call when they assigned an investigator. I specifically asked what would happen if the hospital discharged him and I refused to pick him up. Would that be considered abandonment on my part? She said, absolutely not. I did my part by seeing to it that he and I were both safe by admitting him to the hospital. It is now incumbent on the hospital to either keep him or find another care facility for him. They are not at liberty to discharge him so long as the safety of either one of us is still compromised by his behavior. I'm feeling less threatened knowing that the ball is well and truly in the discharge planner's court.

I think you should also call Adult Protective Services. In addition to the abuse you suffer just trying to keep your wife clean and fed, it wouldn't hurt to mention the high anxiety threatens your continued sobriety.

.