JO C(1)

toolbeltexpert

Good day JO C I wanted to get your view on what I am going thru, anybody else that wants to add an experience. 

Yesterday I saw the SW and let him know that I would like to have placement in a facility that can go to Medicaid after my spend down, he asked how long I wanted to drive time wise, I said 45 minutes trying to get a good radius. He said he would Pull it up with the criteria of 45 minutes , Medicaid  transfer , and I had asked if it could be around 4000$ , he said he'd tried to get to it, thank you very much I replied.

So today I kinda expected a call but nothing, today was my day to visit DW so I figured I would see him there, which I did, After my visit I asked if I could speak with him, well he finally came out after 5 minutes and was walking by me when He said, what can I do for ya. I said I didn't know if you had anything. No he said and since DW Depakote may have to change I haven't had time. So she's gonna be here a while longer, I understand he's busy but that felt like a brush off. It seems that they are gonna test her blood platelet levels  which I had expected from what I had read online about the side effect, they dropped the Depakote down ? and they are gonna test tomorrow and Friday per the Dr.

 How should I handle this if I don't get anything tomorrow? The Medicare website is useless, it doesn't discern why a facility might take Medicaid so it shows lots of places that don't belong on the list. I went to a local resource yesterday call the Upper Cumberland Development district. You can get all kinds of info there. They did a search and came up with TWO, only two that had a mc and would transfer to Medicaid .They didn't get me prices. They are 55minutes away or more. There best looking choice was the closet. I haven't called or asked them anything, I guess if that's the only place  and it's 55 miles so be it.

No beds have opened up as of yet, but I am gonna find it hard not to go with my first choice if a bed comes open, no Medicaid,  it's personal pay, 3700 for 1st level, 4000 for level 3 the highest.And yes that was a very sad story you shared, I can see that it isn't an uplifting situation, I am still pondering if there would have been a good escape point for Steve?  Sorry for the side note, I am prepping the meeting with the CELA on next Monday.  I ran into a snag doing that, we have 4 accounts 1 is an IRA in my name.  Sounds like lots of money HAHAHA ,,  I could wipe it all out in 8 or 9 months, Stupid website wouldn't give me a statement on that one ira account, I got the three others printed but I ended up having to stop at the bank, well they had to learn how, but that account will not print it, they have to do it on their computers?

 WHY? Anyway I Have already printed most of the stuff I needed, navigating tax records is soo easy online. 

Last but not the least,  

DW was back to a baseline from a couple weeks ago, UTI!!!! must be clearing!! That is so strange she had 2 negative UTI Tests and they said neither was a dip stick. and it didn't show till 6 days in! I have my fingers crossed, but I am wondering if it's the Depakote. Today she knew she was not home, she said, had I  known what I was in for I wouldn't have come. Then she said something strange, "the next move needs to be permanent." That sent me for a loop, I didn't explore that, for fear of getting her upset. More picture diversions work like gold, I mean MUSIC gold  Visual pictures. One I printed had a hummingbird bee in it, she loved to watch them for hours, she got a nice cold drink, we did loop some just not as much as Sunday. Still getting antibiotics for the UTI. Didn't get the new lower dose mg, he was on his way out and I asked him before he left, so I didn't hold Him

She laughed a few times cried fewer, she asked about the cats and was I eating?yep  toast with honey, she is embarrassed thinking that her friends from church think she's was in a nut house, I understand why she said that, just then someone screamed "I am gonna die before I get out of Here" At the top of their lungs several doors down from where we were.  

DW is still really with at the moment, I wonder if her saying something about a permanent place earlier wasn't a reference to this. "A nut house."

She is so scared of what other people think, hopefully someone from church will visit Thursday. She's had three from church so far, no repeats yet.

well I better post before I loose it, Ed I did several Control A,C,and v. 

dayn2nite2

Okay, I am not understanding why you aren't finding the Medicare website useful.  This link takes you to all facilities in your city/state (got from your profile) that accept Medicaid (or TennCare I think it's called where you are).  I added that I only wanted to see 4 and 5-star facilities:  

https://www.medicare.gov/care-compare/results?searchType=NursingHome&page=1&city=Smithville&state=TN&zipcode=&radius=25&acceptsMedicaid=true&providerRating_overall=5,4&sort=closest

There are 6 facilities within a 26-mile radius of you.  Are none of these acceptable?  If not, why not?  What occurred during your tours that made them unacceptable?  Please note that things like "long, dim hallways" are superficial reasons and you want to consider that CARE is what you want to concentrate on.  How is the staff?  Are there a lot of long-term aides?  How did the food look?  What did the activity schedule look like?

Ed1937

" Ed I did several Control A,C,and v. " It gets to be too painful when you have to write something several times, doesn't it?

It sounds like you have several good things going on now. I'm happy about that. 

Are there any in-person support groups near enough for you to attend? If so, you might get some good info on MC facilities. That worked out well for me.

toolbeltexpert

Thank you day, I ll try to help you understand why with the list you gave me.

#1 their mc unit closed during the pandemic and hasn't opened again,that's a requirement she is exist seeking. They would be my number one choice, just in distance. It is a fairly nice facility, but they are out because of that fact.

#2 is my favorite choice,it is personal pay only. I could spend our complete savings in 8 or 9 months they have no change to Medicaid. I have taken Jo C advice in looking for a unit will switch after the spend down.

#3 no mc locked unit. but they take Medicaid

#4  no locked mc again

5 I haven't looked into it. 

# 6 that is the one place I wouldn't put my enemies in. I say this because I have visited this facility. First no locked mc, 2 this place is filled with folks who need long term skilled help. Lots of diabetes,  stroke victims, ect everyone around those parts refer to it as a nut house. I do not, I love the folks in there with all my heart. When I visited I always brought snacks. I don't mean a couple cans of pop. I would bring 10 cases mixed diet and reg, same with the snacks. These poor folks had 50bucks a month to buy something they liked, like snacks. It is a non profit, they have a fleet of beautiful vehicles they own many properties that seem to be used for personal things. I know! I know the director, she is part of the non profit family founders. Sorry I can't think of anything nice to say about them. The staff are hard working, this is in one of the poorest counties, no tax base at all. There is a sizable Amish community which has increased tourism in that area considerably. 

Day please Don't think I am trying to prove you wrong, but while I was sick for 8 days from stress I did a lot of searching.

My point is the Medicare sight cannot distinguish the subtle differences in how each facility and what they cover for Medicaid.  I used the locked unit filter and it still showed places that Don't.

I don't know what site the ucdd uses. They are a local resource for Tennessee residents.

I do not want my dw coming home and I refuse to place her any where that isn't suitable. 

The two places the ucdd gave me have 2 star Medicare ratings. Real bad injuries ect. 

I may have to go to number 2 and find an escape point so as to not completely impoverish myself. My dw is still so much there right now. If she went to #2 she has a friend there that she has visited and would probably help her transition. I Don't know what's gonna happen. But I am praying the  Lord's will. I wish this was more positive. I don't want to be a downer for everyone reading, there is enough bad stuff without my adding to it.

toolbeltexpert

Ed there was a group meeting but they seemed to have closed up. There is a group that meets at a church almost daily 30 miles away. It is a umc church so it would be a comfortable setting and the church is very large. 

Thanks for the good advice, I am probably the worst at self care. I found pastoring much easier than 24/7 caregiving. Maybe I am trying to carry my burden instead of leaving in Gods providence. 

I am starting to get the same symptoms I had before. So inmodium my be a regular thing as I can go anywhere that way. Down 7 pounds so far.

M1

Stewart:  you need a doc yourself buddy.  The GI thing needs to be evaluated.  Don't just self-treat with Immodium, not a good idea.  I know you're stressed, it shows in your posts.

toolbeltexpert

M1 I keep saying as soon as dw is placed I will.

CatsWithHandsAreTrouble

Toolbelt, I mean this in the nicest way possible, please, you are carrying too much on your own. God gave us doctors to help us when we need more. Your wife is depending on you, but you will be of no help if you go home to the Lord before she can be placed safely.

Fairyland

TBE, you are right, things will get better once you have found the best place and got some more forward steps underway.

But, you are at the hardest part right now - so much to take into account, a ton of tough decisions, all coming thick and fast.

I recently had to place my mom, I know it’s soo much worse when it’s your spouse, but I just wanted to say, you really are doing fantastically well, this is VERY HARD! but maybe you don’t see it yet.

You are right, you need to prefer somewhere that will take Medicare. She needs you to have enough money to live yourself. No surroundings or others, however kind, can outweigh having you in her corner.

And above all, she needs you to be well. Take a breath. Count to ten. Make an appointment with the doctor for yourself.  He or she may be like my mom’s, who turned out to be a fountain of useful advice and resources of all sorts for ME, not just her ailments.

MaryG123

I just want to add my support to those who suggested you see your own doc TBE.  They might have some insight into the facilities.  And I think it was Jo who reminded you that you can move her if your choice doesn’t work out.  There is no perfect choice, and good enough is fine.  Again I say, she would not want you stressing out about this and making yourself sick.

Jo C.

Good grief, this will be another long, long one.  Sorry, but here we go.  The hyperextension of this Thread makes things harder to read, but I will do my best and I will also take off that Peer hat again.  There are a lot of thoughts to be addressed;  one of them bluntly is the question;  have you historically in the past pretty much relied upon others to take responsibility for difficult directions in which to head and to do the harder things and determine choices?  It seems you are not comfortable in so much of this; not just the placement dynamics which we all understand can be difficult emotionally, but so much else.  I feel from your writing that none of this is anywhere near your comfort zone and you are kind of frozen in place.  Somehow, to me, it sometimes sounds as though you are looking for someone else to do an awful lot if not most and take it out of your hands.

You are a good person who really is facing a lot and it happened so quickly; you CAN do what needs to be done - just one foot in front of the other and it will all come to pass.  Stewart, when you do what needs to be accomplished, you will once again be the relaxed kind, smiling person who loves his life, who helps others, who is socially engaged in his church, and will have serenity and comfort in his life again. Truly.  But you have to take charge and make some moves; it will not be perfect, but that is the reality for all of us in such circumstances.

I am sorry to sound so blunt, but I have come to a point of concern for you. Part of this is your needing to see a good Primary Care MD for yourself NOW - hopefully one Certified in Internal Medicine and get yourself in there on an urgent basis.  No, not when your wife has been placed; no, not when Mars is closest to Planet Earth, but NOW - an urgent appointment. No avoidance, it really is necessary.  If you need to question in-depth medical reasons for this, best to ask M1, where the knowledge base is broader than mine. Your GI upsets are problematic which can have cascading effects on other things and cause you much worse physical issues to deal with - that can be prevented.  You NEED to  have labs drawn, you need proper medication for stress, or whatever else may be present. 

NOTE:  Taking your Gummies each day - (don't know if these are CBD or THC) - while they may help you feel more relaxed, they do not do the same for multiple body systems which other meds may be able to do and in your psychological state as it is, they may not be in your best interest.. As it is; in all honesty with absolutely no judgment, are you really restricting the Gummies use to one in late afternoon or are you beginning to use them more frequently or in using more of them across the day due to stress?  If taking more, it may explain some of the negative dynamics. It is about what is best for your body and for your mind.

Stewart: 

You are in a position in which you need to stop flailing about hither and thither and getting nowhere.  You need to take the bull by the horns and stop putting responsibilities on other people - it is your job unless you feel unable; then it would behoove you to have a relative or friend step in to take reins in a full court press and get it done.  I have also noticed that you are beginning to rely more and more of making religion more of a fall-back sort of dynamic. That is NOT a criticism of religion whatsoever; I am also a Christian, our relationship with God is personal and part of us,  but it will not bode well in using it like hoping it is a magic elixer. A rowboat has been sent out, but you need to grab the oars. Once you grab the oars you need to put them in the water and steer toward a destination rather than letting the current bob you about taking you wherever it goes which of course is getting you nowhere and eventually dashing you upon the banks and misery to get yourself out of what could have been prevented.

First, your question:  It is NOT the SWs responsibility to take all this in hand and find out even monthly costs of care facilities; we have discussed this before.  It is YOUR responsibility and most of us who have needed to make placemeents have had to do this ourselves.  People often have an incorrect belief picture of what the SW must or can do; especially when there is only one for an entire busy department of patients. 

1.  Stop even thinking about the "first" choice facility and do not even discuss that anymore. Erase it.  They do not have a Medicaid contract and just getting eight months of care and then having to change again having wiped out your savings is not the answer at all.  It would be foolish. You would be right back at square one with your wife not in the desired facility except then with no money.  My thoughts would be to take this out of the equation as anything doable; it is not sustainable. This is no longer a "first" choice as it is not a realistic choice at all.

2.  You have a computer.  Sit down with it. Now use Mr. Google and look up all the care facilities in your area for those that are within a reasonable range of travel and make that range broad; write down the phone numbers with the names of the facilities.

3.  NOW:  Pick up your phone and call the facilities on your list one by one. Ask if they accept Medicaid patients.  Next ask if they have a MC Unit or other specialty care units for people with dementia. If they do not have a special care unit, ask how they care for Alzheimer's patients; (some have a special hallway and some even have locked doors for such a hallway.)  THEN ask how much per month the cost is for care. NOTE:  IF your wife qualifies for Medicaid Long Term Care, you do not have to be concerned about their monthly fee - it will be covered, but knowledge is always good, so ask.

4.  If they have a MC Unit, ask them NOT if the unit is locked, but ask them if the unit is safe and controlled for Alzheimers patients - what secure measures have been taken.  As they discuss this, then ask if there are electonically triggered doors or perhaps locking doors to a unit to keep patients from wandering away.   Sometimes a facility will not say they have locked doors when they actually have pretty high security with special electronically closed doors - they often do not want to say "locked." Semantics.

Now you know just which LTC facilities have Medicaid contracts so you know which are the only facilities you can choose from. 

Stewart, for heaven's sake.   Dim hallways - do not make that your driving force for falling backward blocking everything and doing nothing.  Doing nothing will be your downfall.  If one is noted as a sty, that is one thing.  Do look up the facilities on Medicare.gov, but remember all that data is self-reported by the facilities themselves.  Some are honest, others not so much. Just if a facility has horrible ratings, you know that is not good.

SO; it is not the SW to do all the calling to find out if there are Medicaid contracts and how much the monthly fees are - that would be nice if that person has that knowledge at hand, but it is really YOUR job. 

Having your wife's UTI cleared explains that the resurgence of negative behavior in the GeroPsych Unit.  It is the Depakote which is bringing control of the dreadful behavioral issues while in the GeroPsych setting.  Do you speak with the psychiatrist to find out his/her assessment and what the plan is going forward re her treatment?  This is a must.

What will happen if your wife is at the end of her stay and you have not found a bed for her?  Being that she will be a Medicaid Long Term Care admission, the hospital GeroPsych staff cannot discharge her over your head to a private pay only facility.  Do NOT tell the staff you can pay for eight months up front for care - if you do this, all help is off.  They will place her wherever and you will lose.of

If there are zero beds in a Medicaid contracted LTC facility geographically nearby,  then the SW kicks in and begins to call all Medicaid contracted facilities in a concentric circle going farther and farther away from area until a bed is found and this can be VERY far away; one of our Members had their LO place in a bed 90 plus miles away under such circumstances and I have seen this happen with other patients in my professional experience.  What happens if you refuse such placement found by the SW?  Well; you will be given a written letter as Medicare requires telling you that the medical necessity for further care is no longer required and you have two days in which to move your LO.  If you do not do so, you will then be financially responsible for ALL hospital costs until you do transfer your LO out of the facility. 

Will wait to hear what your Elder Law Attorney has to say, and also why not begin to ask for the names of good professional counselors, and Stewart to not limit that to Christian Counselors only. There are wonderful Counselors who do not advertise themselves as such and are best for the person needing a bit of assistance.

Do not know what else to say; I have written so much in multiple Threads imparting information, it is almost the length of a novel now.  The rest is all up to you - and your willngness to do what needs to be done - this also includes getting that urgent doctor's apppointment.   I cannot remember Winnie the Pooh's quote, but I shall look it up, it serves the dynamics.  P.S.  Honey on toast not good for diarrhea.  I could make a list, but do use your computer and look it up; it can be helpful.

J.

jfkoc

No advice from me...sending a balloon

“Nobody can be uncheered with a balloon.”— Winnie the Pooh

toolbeltexpert

Thank you all and your 100% I do need to get checked up. I almost made an appointment last week but didn't.

I want to say if in my posts I have been insensitive or demeaning, I never would write something to hurt another. And send an apology now to anyone who feels hurt in anyway. I do not write passive aggressive posts! If I have something to say I say it plain and simple. my writing skills are not what some others are but I can assure anyone who May have been offended, I did not intend to be insensitive. 

I can say this form of communication takes lots of skill to try to accurately  get across what you want to say, which again isn't my strong suit.

I am gonna take a break till I am thru this part of the journey. I am going to continue to be praying for each and everyone, I owe everyone a debt of gratitude for getting me thru this.

Sincerely 

Stewart

Jo C.

Stewart:  I have responded to you in a new Thread addressed to, Stewart, TBE: please do find it.  I could not communicate easily on this Thread as it is hype-extended and runs the words off the page.

I did respond, please do look.

J.