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Do I need to lower my standards for an ECF?
markus8174
Posted: Monday, July 8, 2019 8:27 PM
Joined: 1/25/2018
Posts: 531


We are to the point where I have to start seriously looking into placement for my DW. She was in the "skilled" side of 2 facilities after a big back surgery in January. To be blunt: one was a pit, the other just barely was adequate if I stayed by her bedside around the clock. Both these were rated very highly by every rating site I could find; including the Medicare.gov site. My wife was frequently incontinent of urine but whenever I left her bedside, even for an hour, I would return to find her laying in urine. To make matters worse, I was treated like annoyance when I asked for fresh linen to clean her up and change her bed myself. Even when I begged them out of enough linen to do a partial change, there was no place besides the  floor to put the soiled linen. Sometimes I would have up to 3 bed changes on the floor in the bathroom so her sleeping area wouldn't smell like a litterbox. There were so many other issues: Disturbed sleep, missed medications, no bath/shower, no inclusion in planning....I could write a novel on my complaints. How do I ever choose a facility? This one was "Above Average" or "Much above Average" in every category. I can find no "Memory Care" facilities that aren't cash only and take what would be classed as stage 5 or better. Sometimes I think it would be more humane to buy a gun and bury her in the woods.
Lorita
Posted: Monday, July 8, 2019 9:00 PM
Joined: 12/18/2011
Posts: 10634


Hi Markus,

 Don't give up - good homes are out there and you'll find one.  I guess you'll just have to visit them and see how they are and maybe talk to relatives of residents if you can get their names. 

 What you said was happening in the home where your wife was is completely unacceptable.  I hope you had a nice, long talk with the administrator and head nurse. 

 I kind of know how you feel  - way, way before Charles got into stage 7 I had thoughts of finding a high cliff so both of us could go together.  But, we live in Oklahoma on the plains so not many of them around.  I'd would never have been able to do it but the thought was sometimes there. 

 If you were talking about Medicaid for memory care centers there was some discussion of that, I believe on the Friend's thread.  Someone posted the website to find these facilities.  I'm so sorry but I can't remember what it was.  I did check it out and there were several listed in OKC.  I don't know where you live but I'm sure they're there, too.  I think that post was sometime in June.  I'm not good at being able to go back and look up things - maybe you are and can find it.  I'm sure others will read your post and maybe the person who told me about that website will do the same for you.

I hope your wife is getting along better - thankfully, you're able to be with her a lot of the time. 


markus8174
Posted: Monday, July 8, 2019 9:21 PM
Joined: 1/25/2018
Posts: 531


lorita- thanks for the reply. If someone can dig up the thread you referred to I would be grateful. No, I did not talk to the administrator or anyone else at the "better facility". The first facility- The one  I referred to as a pit,  did get a piece of my mind in less than cordial terms. The barely acceptable facility was the only facility I could find near my home. Pissing off the staff was not going to inspire them to offer better care to my DW. I'm sure they were doing the best they could with the staff and supplies they had. I just found it shockingly inadequate. Like I said, maybe I just have to lower my standards. I hate this process more than any thing else this horrible disease has done to me and my DW.  Everything else, you adapt, you accommodate, you fight for some path to improvement. Finding an acceptable ECF is like choosing between the electric chair or the gas chamber. No good solutions seem to be available.
Army_Vet60
Posted: Monday, July 8, 2019 9:52 PM
Joined: 6/21/2019
Posts: 369


What does ECF stand for?

I don't see it in the Help list.


Beachfan
Posted: Monday, July 8, 2019 10:08 PM
Joined: 2/1/2018
Posts: 324


I am thinking “extended care facility” but I’m not sure what type of facility this would be- - Memory Care, Assisted Living, Nursing Home- -?
Laura57
Posted: Monday, July 8, 2019 10:27 PM
Joined: 3/25/2018
Posts: 134


Markus, try googling the county and state you live in and “office for the aging” or “council on aging” or “help for seniors.”  That should give you at the very least an agency in your county and state that can send you info on Medicaid facilities in your area. If nothing is acceptable try neighboring counties. My husband is in a facility in a county bordering where I live, as there was nothing closer, but at least he is in a decent place. Visit every place available, you will soon know which place(s) to consider.
Army_Vet60
Posted: Monday, July 8, 2019 10:35 PM
Joined: 6/21/2019
Posts: 369


Thank you.
 
 Beachfan wrote:
I am thinking “extended care facility” but I’m not sure what type of facility this would be- - Memory Care, Assisted Living, Nursing Home- -?


markus8174
Posted: Tuesday, July 9, 2019 5:00 AM
Joined: 1/25/2018
Posts: 531


ECF= Extended Care Facility. It means inpatient care for a long or permanent stay, as opposed to "Acute Care Facility" which is most commonly a hospital.
Crushed
Posted: Tuesday, July 9, 2019 5:24 AM
Joined: 2/2/2014
Posts: 4618


Interesting.  we don't use the term ECF in our area (Maryland)  Areas that do seem to use it for skilled nursing or rehabilitation

My wife's facilitiy is a fully licensed alzheimer's care facility. these are licensed under assisted living

  https://mhcc.maryland.gov/consumerinfo/longtermcare/assistedliving.aspx

  https://mhcc.maryland.gov/consumerinfo/longtermcare/SearchPage.aspx?qs=AL

If you give us your state I will see what I can find

 

I am trying to parse your sentence I can find no "Memory Care" facilities that aren't cash only and take what would be classed as stage 5 or better.

Yes I pay over $100,000 a year for my Stage 7 wife in a high cost area . If you need medicaid hel  you need professional advice. it's not "do it yourself"


Rescue mom
Posted: Tuesday, July 9, 2019 7:31 AM
Joined: 10/12/2018
Posts: 906


People in my area sometimes use ECF to refer to what others mostly call “rehab facilities” or places where you go short-term to recover from surgery or a medical incident; a place to stay after the hospital, short-term aftercare and recovery, until they are recovered enough OK to go home. These facilities are often used by people who need some care after their incident, but have no one at home who can do it. (This may not be what Markus means though)

Marcus, if you google ALF or MC facilities “near me” most people come up with long lists of names, at least. (I’m not clear on which one of those you may want). Just type in “ALF facilities near me” on Google.

You can also call your local Alzheimer’s association, and they usually have lists of the various facilities, and tell you which are MC or ALF, take Medicaid, etc. Your local Agency on Aging, or Senior Advisory Council, whatever it’s called there, also has such lists. The Alz agencies I’ve dealt with also can help you understand which kind of facility provides what kind of care, at no cost.

I’m also not clear on what you mean by MC needing “cash only”; IME they have to be paid whether check or credit card (?) and do require deposit. Also unclear on your mention of stage 5. IME, MCs take all stages unless maybe those so far physically affected they need a skilled nursing facility/hospital-like setting.  Many ALFs take those who are 4,5, 6, 7–although many people also think MC is better for late stages.


markus8174
Posted: Tuesday, July 9, 2019 9:34 AM
Joined: 1/25/2018
Posts: 531


Crushed-  We're in Northern Ohio. Good luck. I haven't had any.
Crushed
Posted: Tuesday, July 9, 2019 9:36 AM
Joined: 2/2/2014
Posts: 4618


Nowadays wrote:

Marcus,

There are existing laws to protect the “community” spouse, but at easily $75,000 a year and up costs here in Oregon I foresee selling our house and using its equity to private pay for as long as its equity will allow.

DO NOT DO ANYTHING WITHOUT CONSULTING AN ELDER CARE LAWYER

 

Can a Nursing Home Require a Resident to Privately Pay for a Certain Period of Time?:
 

A nursing home cannot require that a resident certifies that he or she is not eligible for Medicaid or Medicare nursing home benefits. Similarly, a nursing home cannot require a resident promise that he or she will not apply or become eligible for those benefits in the future.

Sometimes, a nursing home will request that a resident agrees to pay the private pay rate for a certain period of time. These “duration of stay” agreements are illegal for the reasons discussed in the preceding paragraph.

At the present time, nursing homes are allowed to ask a resident for information regarding his or her income and savings. Nonetheless, under certain circumstances, this practice could be challenged. This is because it could be classed as the nursing home’s submissive way of assuring that a resident will not become eligible for Medicaid in the future. 

https://www.ddvelderlaw.com/services/nursing-home-contracts/

https://www.elderlawanswers.com/fighting-nursing-home-discrimination-against-medicaid-recipients-15714

 

https://www.medicaidpatients.com/discrimination-against-medicaid-patients/

 

 

 


markus8174
Posted: Tuesday, July 9, 2019 9:39 AM
Joined: 1/25/2018
Posts: 531


nowadays- Just as I've found in my area. Once again buying  a shotgun and digging a hole in the back woods seems to be the option our health care system wants most for me to pursue.
Nowadays
Posted: Tuesday, July 9, 2019 10:21 AM
Joined: 1/1/2015
Posts: 33


Marcus,

I hear your anguish. Oregon has legalized medical suicide for incurable illnesses, but the law does not allow dementia patients to choose this route in advance of their illness. I hope this will challenged in the future. The patient must be of sound mind and be within six months of dying.  My husband’s dementia is likely genetic as he’s lost many siblings and his father to it. He’s always stated he’d rather be dead than have Alzheimer’s. Find some one to talk with and don’t let this diseases take you, too. It rages, I know. But there is help out there. I’m (and others on this site) are with you on this awful path. You’re not alone. Seek solace for yourself in some tiny place daily. 


Laura57
Posted: Tuesday, July 9, 2019 10:31 AM
Joined: 3/25/2018
Posts: 134


I had no idea that places that accept Medicaid could make you private pay for years before actually accepting Medicaid. I looked at two places that accepted Medicaid, even though my husband had long term care insurance, because they were close to where I live. Both accepted Medicaid from when you move in. I live in Florida. Are there laws about this that are different in every state? Where do we even find out about these laws? I have a friend who just placed her husband after many years of care taking and looking and getting Medicaid in order, and Medicaid is paying from day of placement.
Crushed
Posted: Tuesday, July 9, 2019 12:36 PM
Joined: 2/2/2014
Posts: 4618


markus8174 wrote:
Crushed-  We're in Northern Ohio. Good luck. I haven't had any.

ok first step put your zip  in the Alz asso website

 

https://www.alz.org/local_resources/find_your_local_chapter

Second Community waivers

  https://medicaid.ohio.gov/FOR-OHIOANS/Programs/HCBS-Waivers

Ohio has two types of licensed facilities.  

Chapter 3701-16 Residential Care Facilities

Chapter 3701-17 Nursing Homes

 


Crushed
Posted: Tuesday, July 9, 2019 12:39 PM
Joined: 2/2/2014
Posts: 4618


Sorry had a technical glitch.  If your wife is qualified for a Nursing home  the residential facilities may not be allowed to take her.  However if she is qualified she is also eligible for the waivers.
Jo C.
Posted: Tuesday, July 9, 2019 12:59 PM
Joined: 12/9/2011
Posts: 9962


Hi Markus, your question is not an easy one and many of us face it.   I think that it is one of not lowering standards, but one of being realistic and understanding the setting dynamics which certainly does not mean approving of poor care. 

I will answer this from my own experiences and perspective.  To start;  like you, I am an R.N.; during hands-on clinical days I was supervisor on both various medical and surgical units.   My other years were spent as Administrator of Patient Care Management in acute medical centers; in this, some of the departments under my direction were, Case Management; Social Services; Discharge Planning and Utilization Managment amongst others.  I was very pro-active and involved with these departments as they were near and dear to my heart for what happened to our patients after they were discharged home or transferred to care from the acute hospital.  This is extremely important to the very quality of life for our patients and families and an item that is often given short shrift by many acute care facilities.  This is short sighted as then their readmission rates go way up and they are liable for penalties.  However; that being said, it is the patient that is the most important point in all of this.

My staff and I involved in patient placement visited the NHs that patients were transferred to at least twice a year.  We examined records of survey  (inspection)  findings, met with the DON and also did a simple walk through of the facility; (NOT an inspection.)  We also contacted and spoke to families whose LOs were discharged from our med center to ascertain how they felt about the care their LOs received.  Needless to say, rarely did I ever work an eight or even ten hour day. 

I also had a LO who had FrontoTemporal Dementia, and a step-dad with Alzheimer's Disease as well as a MIL and GMIL who had AD.  Things are far different when one has a LO with dementia in the home rather than in a care setting where there are three shifts of staff to administer care.  Exhausting would be an understatement as we caregivers well know.

All four of my LOs eventually needed care at the NH or ECF level.  In two instances, Medicaid became necessary.

Being an RN who had high standards for her own work, found me initially being a "helicopter" daughter/granddaughter with too critical an eye and I had to extinguish that.  Not only did my LOs have to adapt to new surroundings, I too had to adapt and that can take a bit of time.

It is best to meet with the DON prior to admission and discuss the services and any concerns one may have.  I also found it far best to request a multidisciplary team meeting asap after admission rather than waiting a month or more and made sure that plans made in the meeting actually made it onto the Plan of Care for daily shift reports. This usually happened within the first two weeks; they need time to get to know the patient.

These meetings happened every couple of months or if a signifcant change in condition arose that required an entire new plan of care.

I made it my mission to connect with staff on a positive level and worked at it and also even brought treats from time to time for the unit.  I praised very good care and did not nitpick; the aides are up to their eyeballs in work and have many more patients to care for.  If I had an issue, depending on what it was, I could speak directly to the aide in a non-harsh way; or the licensed nurse on the unit if the issue was related to her/him.  Only really big issues were taken to the DON and there were very few of those.  With extraordinary wonderful care or special effort by an aide, I was sure to inform the DON and let the aide know that was done. Establishing relationships and communication goes a long way to having good outcomes.

It is also good to remember that nothing is perfect in any setting whether acute or NH LOC.

At admission, I had an information list typed up and gave a copy to the DON as well as the nursing supervisor on my LOs unit.  In this list, I put the social and medical history; I put down the type of dementia and also listed in detail my LOs abilities or inabilities.  I listed likes and dislikes of care and of food; I detailed what was upsetting to my LO and what soothed my LO.  If there were other issues, I also listed them.  You get the idea; there was a complete picture of my LO.  Did the staff read it all?  Don't know,, but the most important items were listed first and these also came up at the multidisciplinary team meeting.

If your wife is regularly incontinent, she will probably be in an incontinence brief.  In my LOs facilities, such items were checked every two to three hours and if one could sense there was BM involved, that was changed immediately.

CAVEAT:  If you take over most of your LOs care or much of it, then the staff will be wary of their doing that chore and some will come to expect it; if they sense ongoing disapproval, the most likely thing to happen is avoidance of contact as much as possible.  I decided early on not to fall into doing that.  I would inform that the bed was wet (rarely) and that it needed changing asap.  That was done.  In most NHs, or Memory Units, dirty linen hampers are not kept in the patient's rooms.  Having staff upset at dirty, wet linens being placed on a bathroom floor other than getting them to the aide to place in the proper hamper was a risk for the NH. 

If there would have been a surprise inspection from the county or state, those dirty linens on the floor would have been an infection control issue for which the facility would have received a negative rating on that item.

No one is saying that you need not be a comfort to your wife, or to help her at mealtimes or go to activities, etc.; it is just best that one refers daily needs to the aides or unit manager rather than taking it on oneself; it really can make a difference, but that will be up to you.  They should be doing the linen changes, and bathing unless there are significant issues with the patient.  I had to keep reminding myself I was not being lazy by not doing care chores and had to adapt to keeping myself the daughter and not the care aide.  I also had to learn to let go of control issues.

There is also the problem of how much is too much for bedside visits.  Sometimes our LO can act out and be disturbed by our constant presence.  It takes awhile to figure out what is best.  Sometimes giving our LOs a little breathing space from us helps them to be better acclimated to their setting.  That does not mean not showing up to visit; it means giving them some hours of space each day.

I also ensured that as long as my LO was able, that if I was not there, that someone would come and get my LO for special activities and ensured that my LO was seated at a dining table with other residents who were at the same level of function.  These items came up in the multidisciplinary meeting where the DON, Unit Manager, Social Worker, Activity Director, PT, Dietician, and a unit aide was present.

This is really hard Markus; it is an issue of not only concrete concerns, but also concerns of the heart.  When many of us say it was one of the most difficult things we have ever done, that is a hard truth.

Keep looking and talking to people and DONs; as far as the Medicare ratings; that data is self reported by each facility themselves and no one checks to ensure if it is accurate.  Really a huge flaw in the system.  Upon occasion, not often, one can get an Ombudsman person to discuss quality at facilities, that is really helpful if one can finagle it.

When checking a facility for possible placement, ask to see the written report of their last survey inspection by the oversight agency in your state.  By law, that report must be made available to the family.  Please do note that every single facility will have had negative findings of one sort or another; every single one, just like acute med centers during JCAHO inspection surveys.  It is simply a matter of degree.

Keep at it Markus, you will find the path to take.  Memory Care is a bit difficult because there is no one set standard and many will game the system and take private pay only; but there are good facilites that will accept Medicaid.

Whew!  That was a lot of sharing.  I get it Markus, and understand your deep concerns; you will find your way even if it means letting go just a little bit.

Let us know how you are, we will sure be thinking of you and your dear wife.

J.


JJAz
Posted: Tuesday, July 9, 2019 7:29 PM
Joined: 10/21/2016
Posts: 2422


I was also displeased with rehab facilities following hospital discharges.  I've experienced 6 different facilities.  All highly rated, best-of-the-best, etc.  All disappointing in multiple ways.  I'm happy to say that a good memory care facility is nothing like rehab.
markus8174
Posted: Tuesday, July 9, 2019 10:38 PM
Joined: 1/25/2018
Posts: 531


JoC- Thank you for your input. I'm not put off by long replies- Too often I can't seem to limit my postings. In the interest of brevity I'll only address two points from your advice. 1: my wife was in "skilled" after a huge back surgery that went sideways. She was in OR over 8 hours, big blood loss, and they were unable to accomplish some of the goals for the surgery.  Post-op psychosis was bad, care was worse. Because of her blood loss, poor diet tolerance, and incomplete surgery they were reluctant to start anything but the most limited dose of Seroquel in acute care. NH she became much more  agitated. The answer from the staff- "we don't call the doctor for acting out behavior, we consider medication to be a restraint." This isn't her baseline, it was an acute post-op delirium--TREAT IT  before it becomes her baseline!!! She was mid stage 5 going into OR.

Normally my DW isn't incontinent(at the time of surgery). After, I bought a large supply of incontinence briefs that were a bit nicer than the nursing home diapers. My DW did wear them much of the time. (the NH provided ones that fit my wife like a pillow case on a broom stick). Even with protection leakage occurs. step 1- stick my head out the door to see if there are any staff at hand, step 2. call light. after 20 minutes, go to step 3- go to the nurses station and demand care. Frequently this got me some linen, no staff. Once I changed the bed, what was I supposed to do with an arm load of dripping sheets? They knew the bed was changed and why. Bathroom floor seemed like the best of the bad options. Often there were multiple rounds of this on the BR floor, still no staff. I guess there was out the window.

I never saw a bed check, she got one shower in 7 days, and PT worked with her 10-15 minutes some days- range of motion in the room. This was from a facility rated above average or greatly above average. What can I expect from the "average" NHs? There is much, much, more, but I'm already long. Could you have left your loved one there alone?

 


Jo C.
Posted: Wednesday, July 10, 2019 10:07 AM
Joined: 12/9/2011
Posts: 9962


What a bloomin' mess; no wonder you are feeling so unsettled in all of this.  I am so sorry, Markus.   I have experienced Rehab with three of my LOs, and it was an odd, odd experience.  I have to say that the care was not the same as on a custodial care unit.  The two different SNFs rehab units seemed a bit disconnected from direct patient needs in some ways. I did indeed oversee things very carefully.  In one instance, my step-dad who had AD was in Skilled Care; I had to work, JCAHO survey at my med center, so I hired an aide we knew well to stay with him during the day.  Thank goodness there were funds to enable me to do that; it really helped.

Our experience as I say was odd, and I really had to keep on top of things, but the physical care was not severely deficient as your wife's was.

The P.T. experience was also odd.  They did indeed work with my LOs, but only to their tolerance.  If the patient cannot tolerate or cooperate, it is not to any benefit.  This was a problem with step-dad; his work with therapy was very small bits of time, and of course on Sundays, there is no P.T. therapy; that is approved by Medicare.  Sometimes it seemed more like respite care.

The experience with long term care may be different for you; I hope so. As far as the not undertanding delerium, this is a huge problem in all med centers including the acute med centers.  For us, in the acute med centers, if I did not identify it, bring it up, and inform re it, then it was not even seen and RNs and MDs chalking it up to worsening dementia which was just not true..  It really needs to be taught and reinforced with ongoing inservice, but it would be rare to see that done.

Your broomstick analogy had me with a chuckle; but that was not funny at the time I am sure.  The long Post is secondary to not only replying to you, but to also provide information to the legion of caregivers who come and read anonymously but never join; there are literally thousands of people who do.  When we write, there are so many others reading that we do not see..

I guess you will not know how things will turn out until you decide whether to place, and where to place and then move forward.   This time, you will have time to speak to the DON and staff prior to an admission, have meetings, and your wife will not have the dreadful post-op pain or anesthesia effect that hangs on; hopefully, that will make a difference.

In whatever you decide Markus, I hope for the very best for both you and your wife.  Adjustments will in all probability have to be made, but also hopeully, they will be small ones.

Do let us know how things are moving and how you are,

J.


lvcatlvr
Posted: Monday, August 26, 2019 1:18 PM
Joined: 5/7/2018
Posts: 109


I will not be able to afford a facility. I don't think I can even afford an elder care attorney. A friend who has much less than I do consulted an elder care attorney and was told her husband wouldn't qualify for Medicaid. We live in the mountains where we get really deep snow in the winter. I have often had horrible thoughts about how much easier it would be if my DH wandered off one night in the winter and froze to death. I've read that it's not painful. You just go to sleep. And then I stop myself and think what a horrible thing to consider. I think when we are at a very frustrating point, which happens quite often, we wish for an end to this nightmare.
Victoria2020
Posted: Monday, August 26, 2019 4:20 PM
Joined: 9/21/2017
Posts: 857


Nobody knows ,really, what another couple has, they may have 401k , inherited stuff you don't see- worth it to see a medicaid elder lawyer for     your    situation, esp get the DPOA etc if you still can
 
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