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Spouse or Partner Caregiver Forum
Do I need to lower my standards for an ECF?
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.
What does ECF stand for?
I don't see it in the Help list.
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
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"
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.
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.
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
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
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.
ok first step put your zip in the Alz asso website
Second Community waivers
Ohio has two types of licensed facilities.
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.
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?
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,