Stewart TBE - Response To Your Query In Other Thread

Jo C.

 Good grief, this will be another long, long one.  Sorry, but here we go.  The hyper-extension of  the Thread this belongs on, makes it too difficult to read as it runs off the Board, so 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, and I could be incorrect, 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, hard working person who really is facing a lot and it happened so quickly; you CAN do what needs to be done - 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 much broader than mine. Your GI upsets are problematic which can have cascading effects on other things and can 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 some 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 in dose due to stress?  If taking more, it may explain some of the present 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 not be flailing about hither and thither and getting nowhere.  You need to take the bull by the horns and stop putting responsibilities on others - 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 having religion be 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 deeply part of us, but it will not bode well in using it like hoping it is a magic elixer. A rowboat has been sent to help you out of the deep water, 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 going nowhere and eventually dashing you upon the banks which would cause 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 actually your responsibility and most of us who have needed to make placements have found we 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.  It would be foolish. You would be right back at square one with your wife not in the desired facility except by 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. 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.  Next:  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 and  in many of these, staff has even had special dementia training.)  Then you can ask how much per month the cost is for care. Keep written notes.  (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.)  If they ask if you can pay privately, you can say for a month or two and the reasons for this we have already discussed a couple of times, and if your wife qualifies for Medicaid LTC after her admission to LTC, that may possibly be refunded to you up to three months retrospectively; it is in most states.  Ask your attorney about this when you see him/her in appointment next week.

4.  If the facility has a MC Unit, ask them not if the unit is locked, but ask them first if the unit is safe and controlled for Alzheimers patients who are ambulatory - what secure measures have been taken.  As they discuss this, if they do not address the unit being locked in some way, 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 the word, "locked."  I do not now why the reluctance to say, "locked," but have run into that myself.  Semantics.

Now you know just which LTC facilities have Medicaid contracts so you know which are the only facilities you can choose from.  Visit without being judgmental and do not sabotage yourself with blurting unecessary negatives about your wife as you mention having happened in the past.  Actually, your wife seems to have begun doing fairly well with the medication adjustment being made.

Stewart - dim hallways - do not make that your driving force for falling backward blocking everything; doing nothing can be one's downfall.  If a facility is noted as a sty, that is a different 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.  If a facility has horrible ratings, you know that is not good.  Look past what you feel are dim hallways and get an overview for care and activities, staffing, etc. Do not be judgmental out of hand not related to care; you will not be able to use that fancier one you like so much better.  It is about reality and adjusting expectations.  I have been there.

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 had that knowledge at hand, but it is really your job at this point in time. 

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

What will happen if your wife is at the end of her stay and she is about to be released as a patient 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, it can reap negative results.  They may feel free to have her placed in private pay only facility and you will be back in the same bad loop all over again.

If she is to be discharged, and if there are zero beds in any Medicaid contracted LTC facility geographically nearby,  then the SW in case of no further medical necessity for extending her inpatient stay and a denial of further care notice being served to you, must then kick in and begin to call all Medicaid contracted facilities in a concentric circle going farther and farther away from area until a bed is finally 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 most likely be given or have been given a written letter as Medicare requires, telling you that the medical necessity for further care is no longer required and you have two grace 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 since a bed has been found, (even if it is far away.)  The hospital will follow you legally to recover those costs.  If no accepting bed has been found, then the patient cannot be discharged until a bed has been secured in any Medicaid contracted facility.  It is an uneasy situation to say the least.

It will be good to hear what your Long Term Care Attorney tells you next Monday; that will be helpful, but Stewart do not wait for that appointment without continuing to do your computer and phone search for Medicaid LTC Contracted facilities - you need to continue, full speed ahead.

Also, please do get your urgent appointment with your doctor; it is imperative.  It would also be a good idea to get a name or two of a good Counselor who can help support you and sort matters out as you move through this difficult time and after.  Please do not limit this to trying to find only a Christian Counselor; there are some really wonderful Counselors out there who do not advertise as such.  You too can use some support in these hard times. Support groups can be good, do not as said, limit yourself only to those in Christian format only; there are wonderful ones that are not labeled as such and you would be best served by not limiting yourself if you cannot locate such a desired group.

So hope for the best outcome for both you and your wife; I do not know what else there would be to say as we have had multiple contact Posts which I think covers things to this point.  May all go well and it is really wonderful that your wife is doing so much better.

J.

Jo C.

Hi Stewart, I did not intend to sound as though you lay back and only let others do the heavy lifting in a lah-de-dah manner; that was not the intention. Sometimes, in our careers or settings, we are in long term situations where we have assistants and/or others who do most if not all the complex arranging with the heavy outreach and contacts, etc. for things.  That leaves the other person free to perform their primary duties of priority which can be many and very time consuming.  Lacking such hands-on experience leaves one needing to develop the skills for arranging of complex needful matters when things change.

Also, the deal with the gummies affecting things as they are:  side effects of the CBD gummies can be diarrhea as well as fatigue, etc. The THC gummies also have side effects. One of the difficulties of the edibles is one cannot be certain of how much of the CBD or THC is in the product; purity and doseage can vary widely.  The substances can also interact with prescribed meds.  Be sure to let the doctor know that you have been using the gummies so he/she can take that into assessment consideration.

You deserve to find some relief from the anxiety and high level stress as well as physical issues; so hope you decide to see your doctor asap. 

I realize how hard you must work; the ranch is no piece of cake and you have had to do all the significant caregiving for your wife  as well as also having to do all the myriad and heavy chores and upkeep for the ranch for a long time and then face the abrupt psychiatric issues which have been over the top.  That is a lot and you kept up with it all.  It can be not only exhausting but overwhelming.  Soon, things will be in order.

It may also be that your Elder Law Attorney will have ways to be very helpful that can also add to the order of things too.

Do not let thoughts of what others may think of you and your wife deter you in any way or make you feel down; this is an illness just like any other sort of illness or condition that needs to have care and treatment.  Head held high, you are gaining skills to not only bring much needed care for your wife, but also gaining knowledge that can help others in the future.  Nothing like a Pastor with experience no matter how we did not choose those dynamics.

By the way; while at the computer, do look up diet when having diarrhea; don't think honey on toast is one of those helpful choices no matter how good it tastes - (insert smile here.)  

Prayer said on your behalf; peaceful sleep with good dreams wished for you tonight.

J.

saltom

JoC  This is a thank you for your post to Stewart.  It was just the kind of reality kick I needed to stop mulling things over and take some action for me and DH.  Somehow decision making even of the most mundane gets harder and harder as I get older.  I just wanted you to know your words or wisdom to individual caregivers spills over and is appreciated to the others.