Looking for help(1)

toolbeltexpert

So my dw is getting ready for release soon. I need to navigate the process.

Any insight in how your process went would be much appreciated, going from a geripsych to a mcf that is what I am doing.  It would be helpful to me to hear how it went for others. I started reading some older posts but haven't been able to land on the right posts.

I feel stupid asking, but right now I feel lost about how to approach it.

Thanks everyone

Stewart

JoseyWales

I have no advice for moving straight from geripsych to mcf (DH went from home to mcf). But I just wanted to let you know I've been thinking about you and your wife. It's such a difficult time. Those last few months before I placed DH are a blur. The lack of sleep, stress over making a good decision and dealing with DHs behaviors all made me feel like I couldn't make any kind of decision. I'm sorry you're in the middle of all that now.

DJnAZ

I think our situations are similar. My wife was in the hospital for 9 days due to a UTI and went straight to MC from the hospital. The MCF used their van to pick her up at the hospital and take her to their location. Because she has dementia and primary progressive aphasia (PPA), communicating with her is difficult at best especially for someone who is not familiar with her limited vocabulary. Doctors at the hospital consulted with me and said she really needed the safety and security of a MC facility and I approved her to be moved there.

The MC staff told me from the minute she arrived it was obvious she was not happy to be there. I'm sure she assumed leaving the hospital meant she was going home. I know the initial days were very confusing and frustrating for her. I saw her the day after she arrived at MC and she looked scared, anxious and very upset. The moment she saw me she began to gather her things and was ready to leave. She said over and over, "...lets go!".

Although I took needed clothes and personal items for her the next day, I probably should not have seen her that soon after she arrived at MC. She definitely needed more time to adjust to her new surroundings. When I got ready to leave the staff had to physically restrain her while they took me out a side door. I could hear her calling my name which was heartbreaking. I was told she continued crying and was very upset for over an hour after I left.

She was placed 8 weeks ago today and other than 10 days when they had a covid outbreak, I have seen her weekly. Visits have not gotten much easier, however. She sees me and starts gathering her things to leave. Now I call several hours ahead of when I will arrive and they give her a mild sedative. She still wants to leave but the meds have helped keep her calmer.

I have known for some time placing her was inevitable but this has been one of the most difficult things I have ever had to do. I know the decision to place her is best for her and for me as well. And I'm sure over time she and I will adjust and accept our new realities. I'm going to see her today and I wish I could just sit with her and talk like we used to.

I sorry you have to go through this. I hope my experience helps a bit.

Ed1937

My wife went directly from the hospital. I had a choice to take her myself or have an ambulance take her. I chose the latter. I told her they were taking her to a better place for rehab.

M1

Stewart you probably remember that this is what we went through in March and April.  My partner was in the hospital for over three weeks (nearly four) because of their medication errors.  My first choice MC facility refused to take her, saying they had too many other difficult residents; who knows whether that's true or not.   We found this out after ten days in the hospital; in the ensuing two weeks I then looked at three others.  All had availability; cost was not a factor because we were going to be private pay regardless (my partner was fortunately careful with her money over the years).   In the end it came down to just a gut sense about the location, the layout, the size (small), and the availability of outdoor spaces, since outdoors has always been important to her.   She was transferred by ambulance on the day of transfer.  People here on the forum reminded me that I could always change if it didn't work out.  We tried to sell it as temporary rehab.  She seemed to buy that at first, although she has been exit-seeking since the day she got there and continues to be, 3.5 months later.

I have been satisfied with my choice, I like the staff.  I have not been able to visit because of her temperament and that has been the biggest challenge.  

It sounds like bed availability is a limiting factor for you right now, with cost right behind that.  I would suggest using the social worker to identify any and all open beds, and go from there.  But the Medicaid factor is very important, it also sounds like you should work on doing whatever you need to to get her qualified ASAP.

Wish I had more concrete to offer.  It's not easy.  But I would NOT bring her home; you just need to keep telling them--over and over--that that's not feasible.  In the meantime, i hope they have found a medication combination that will work somewhat better for her.

Ernie123

My DW was placed two and a half years ago. I was advised not to discuss the move in any way, just do it. You can rely on the staff  that work there. They will be used helping people settle in. I was told to stay away until they felt she was ready for a visit. After only two days they suggested I come in. Of course she was confused and wanted to come home. The staff said she was fine with them, easily distracted if upset, sleeping well. I realized I was a bit of a trigger for her. When it was time for me to go, the PSWS would distract her and I would go without a goodbye. If she asked about me they would say he will be back as soon as he can, he had to go and do such and such. This worked. To this day when I leave I always say I will be right back as soon as I do…..whatever.  She has no sense of time anymore and doesn’t remember whether I am there or not so it is easier for me now than it was. I remember feeling very stressed and emotional the first few months when she was more cognitively aware of my coming and going. Then Covid came and I couldn’t visit for three months. With hindsight this was probably good for us both. And we realized after that when she asked to go home it was to her childhood home to be with her parents, both long dead. She couldn’t recall the home we have had for 51 years!

Let us know how the move goes. It is probably harder on you than her. A final positive note: my wife improved somewhat living in a more social environment with suitable activities happening. A counselor told this would happen and it did. Better than being home alone with me, an increasingly stressed out caregiver.

Jo C.

On the day of transfer, we used an ambulance transfer which Medicare covered as it was from the acute hospital GeroPsych Unit to a LTC facility.  If we had tried to transfer in private auto, the risk was that my LO would demand to go home, and become a behavioral issue which was most likely; my LO triggered very easily. The transfer went well, all was ready in the room at the LTC facility.  The staff came and introduced themselves and we used the idea of "rehab," if asked.  So hard to leave that day; never wanted to have to place, but it had become a necessity.  I ended up calling in the middle of the night to see how my LO was doing.  I know; a bit much, but I was feeling very concerned and very low.

Wanted to say; one cannot apply for LTC Medicaid until the LO is in the LTC facility.   IF you can afford to pay for a couple of months up front, or even  a month, the LTC facilities with Medicaid contracts will be far more likely to accept your LO.  Reason is, it can take a month or up two to complete the Medicaid LTC approval process.  If one has paid up front, and the LO does not qualify for Medicaid benefits, then the facility is not on the hook for payment; they actually get stiffed by some families.  NOTE:  In most states, if you pay privately for LTC up front, and your LO is approved for Medicaid, then Medicaid will retrospectively repay the family for up to three months of private pay which means one gets their money back.  This happened for us and it was such a blessing.  You will want to confirm this for Tennessee.

In Tennessee, only your wife's income will be counted.  Any income in your name only, whether Social Security or Pension, etc. will NOT be counted at all.  As far as savings, in Tennessee the well spouse can keep up to $137,400.  House and car do not count for qualifying for Medicaid, that stays the same for you.

https://www.medicaidplanningassistance.org/medicaid-eligibility-tennessee

Sometimes we cannot get our LO into the care facility we choose.  One can either stay where the LO is, or the option is to make a move to the desired facility when a bed is available or in a few months if quality is not what you expected.  Yes; the move is not a positive for the patient, but sometimes we must do the "musts."    Had to do this with my LO for good reason, and it turned out to be an excellent decision with highly positive results.

This is a Part A of what I would like to share.  I will do another Post here and talk about how to get a LO admitted to a facility that has no open beds and is hard to gain access to.  The approach helped me to gain admission for several LOs when in such a situation.

J.

Stuck in the middle

My late mother went to SNF from hospital via ambulance, and never saw her house again despite numerous visits to my home during the next half dozen years.  My son went to RCF from hospital in my car 20 years ago, and has not lived in an apartment again.  In both cases, I have not entertained conversations that raised the possibility of independent living.  It wasn't going to happen, so I saw no reason to make everyone unhappy by getting hopes up.

At this time my wife lives with me.

In your shoes, I would send her to MC in an ambulance.  From your posts, you appear far too emotionally involved to safely transport her.  It's hard to drive with tears in your eyes.

Jo C.

Part 2:   So; your LO is on a waiting list for a bed at one or two facilities of choice.   However, discharge is imminent and no bed is open - what to do - first thing is; telling the Social Worker and Psychiatrist that you are looking hard for a bed for your LO but the facilities have waiting lists.  The Social Worker has lists of facilities they can provide, but the SWs are often not at all up to date regarding which facilities have openings.  They can, if push comes to shove, make some calls if there is an urgent problem in keeping the patient who must be released re legal issues denying re-certification for further stay in a psych unit.

Problem is this:  IF the patient no longer fits criteria for Psych care, and this can be a legal issue regarding re-certification of stay, or it can be another issue, the SW will often have to kick in and try to find a bed somewhere - which actually turns out to be, anywhere.   The first bed they find to accept the patient who no longer fits criteria, that is it - the patient must transfer out even if the family does not feel the facility is appropriate and even if the facility is far distant. I have seen this happen. Let it be said though, sometimes the Psychiatrist helps to document sufficiently to get a extension re-certification of stay, but that cannot be counted on as legalities are involved.

The best way I found to gain a bed in one of our LTC facilities of choice was to, every single day, make first thing in the morning daily calls to the Admissions Department of said facilities myself.  Sometimes a patient passes away during the night, or an unexpected discharge is suddenly in the offing with the patient returning home or transferring to another facility or other reason.

Acute med center hospital Discharge Planners/Case Managers often get first dibs on beds despite waiting lists in many LTC facilities.  These hospital staff folks will be calling early in the day to obtain a bed and will most often gain said bed if one is available and often get this over a waiting list.

By your calling the Admissions Office each day, about fifteen minutes or so after the Admissions staff arrive at work, you will beat the hospital planners to it.  As said, a kind, caring, positive call each morning.  If they say, "We know you are on the list," simply respond kindly and say you are so grateful for their help, but sometimes things happen overnight and you want to screen what may happen so as to be able to get things coordinated and not create delays for the care facility and your wife's discharge is imminent.

Make friends with the Admissions staff; you will probably have one primary you most often speak to.   Hope you do not take this the wrong way, but use your title, Pastor. (Once a Pastor, really; always a Pastor).  "This is Pastor Stewart So and So calling; good morning - just checking to see if anything has changed overnight for a bed availability for my wife."  You want very much to create a relationship and visual of yourself that makes the Admissions staff really want to help you.  Even the most casual sort of telephone relationship can make a big difference in outcome; so be kind and friendly.

I even called on the weekends; Saturday and Sunday when Admissions did not have a full department available; I would ask to speak to the person who was in charge of new admissions on the weekends.  Once, this worked quickly and we got a bed and we moved on it fast.  If a bed becomes available, do not wait. Confirm the bed to come with using your credit card over the phone and paying a bed hold deposit and then get over to the LTC facility as fast as possible and get the paperwork processed.  If they need backup paperwork from GeroPsych, be sure the hospital gets it to them fast if electronic. If it is paper, you can pick it up yourself and hand carry it to the LTC facility.  You will want no delays which could lead to snafus.

When all of this is said and done, it will be such a relief and you can then catch up on your own needs and find peace and calm once again.

I send best of wishes that this will soon be taken care of so that you will have some of the stress relieved; it has been a very long haul for you, that is an understatement I am sure.

We will be hoping for the very best and prayer sent up on your behalf.

 J.

toolbeltexpert

well I have lost my post 2 times tonight Ed when will I learn. I will drop back in sometime tomorrow as I am all typed out. It was a good day... is all I can say.

toolbeltexpert

Good morning all after losing 2 posts, I will keep it brief.

Jo c thanks for everything,  I now know the lifetime limit 190 and that's not much, who thinks of these things? I also thank you about contacting folks on critical days will be at it shortly. And so much more you are a great help to us all here. And I don't know where I would be in the journey with out all of you. 

I did visit my Dw yesterday and also met the weekend SW. She is a young woman, but very smart. She took notes while I visited and interacted when I was showing DW pictures. I am greatful for her.

I did get to talk with her apart from Judy, It sounds like Dw will be released later this week? They are still giving DW antibiotics for the UTI.

My visit went well. I had prepped for it with lots of pictures including the one I posted on the other thread, black and white. DW was stuck in a loop all the time I was there. When are you coming home. I thinks she thinks she's home cause she asked if I was hungry she said she would have to check the fridge to see if we had enough food since she does not shop any more. 

The pictures were a great tool as well as a delight for DW, every time she went negative I went positive, I was amazed at how easily she could be redirected. I bought pictures of things she made, it animated my wife to tell the stories about building it and why, the SW took great notes on it and interacted with DW. That was a big win 

DW laughed a little and cried more. She talked about this one lady, Boy is she crazy! 

I  cannot believe how much she has declined in the last couple of weeks. The depekote  or Lexapro maybe be making her more confused and it seemed like she isn't as fast in body movement and the staff seemed to be assisting her getting up? 

Dw is a level 2 on Pasrr .

Well I had lots more I wanted to write but I gotta go.

Thanks Ed I will learn, my phone is so much harder to select and copy on.

M1 I am 1 for 2 in visits and all the time I spent writing about my visit I was think of you praying that your visiting with your DW will become a joy.

Djnaz Yes we are just about in the exact same place.

JW I know what you mean about a blur and lack of sleep. I think of often. I hadn't seen many of your post lately, might be I just don't read like I used too.

Jo C.

I never, ever wanted to share this with you, but I think I may have been remiss in not doing so.  This is a completely true story.  My elderly FILs friend, Steve, who is a very dear person, absolutely adored his lovely wife more than anything. They had no children and had led a close, loving and good life together.

Sadly, his wife developed dementia and got to the point that her level of care could no longer be provided in the home setting.  He, as all of us do, wanted only the very best and part of that searching for the best placement led him to a lovely decorated facilty . . . . however; it was private pay only.  No Medicaid, (Medi-Cal), whatsoever.  Steve is a middle class person, some limited savings, but absolutely not wealthy.

Steve, wanting what he felt was the best, decided to go with the private pay only facility.   Steve paid every month; he tried a part-time job to augment the costs.  It wasn't long before Steve completely spent every cent of his savings.   He could not continue working as it was too much for him and also as it was, he could not earn enough to keep up with the cost of his wife's care. (The cost of MC and SNF care usually rises about 7% each year.)

Steve then made a decision that would affect him greatly. He sold his house to continue to pay for his wife's care costs.  This put him in the throes of having to move from a place he loved and find a new, low cost residence for himself that did not suit as well.  Time passed, the profits from the home sale went for the wife's care and also had to somehow pay for Steve's needs which he strived to keep to an absolute minimum.  Despite Steve's sacrifice, he eventually ran out of money far quicker than he had felt he would.  Poor planning, but he was doing what he thought was right.

Since he could no longer pay for the private pay only facility, his wife had to be moved to a different facility that had a Medicaid (Medi-Cal) contract.  If that had been done from the first, Steve would not have been in a deplorable situation for himself.  He now had no money for his own health and aged needs and his health had begun to decline.

While the second facility was not as prettily decorated, the care was good.  As it was, his wife did not know the difference.

When I last saw Steve, he shared his updated experience with me and he began to weep. It broke my heart.  His health had failed, stress had advanced that and he was not well.

He had spent everything, absolutely everything but ended up with the same thing that could have been done from the first and he was now in a dreadful position for his own care and aging needs.  His wife died a short time later.

In my personal experience, my LO was initially in a private pay only facility. However; this was a facility that tended to "cherry pick" their patient residents which I had not realized.  When my LO became a much higher level of care, even though there were no behavioral issues, we were asked to move LO as they felt they could no longer provide increased needed care. This by the way was from a facility that said they could care for the person to the end of life including when Hospice was needed.  We were never late with payment nor were we a problem family.

We transferred to another facility that had a contract with Medi-Cal, going in as private pay, assets lasted for about a year; BUT since this facility had a contract with Medi-Cal, it made it doable.  It was not a highly decorated facility, but the care was excellent as was the kindly caring and staff turnover was very low.  When private pay funds ran out, our LO was slid seamlessly into Medi-Cal LTC benefits and not a single thing changed in room or care.  My LO was there until death; never an issue with the quality of care whatsoever. That change from the other facility turned out to be a blessing.

Be very, very careful with eyes wide open and let logic enter the decision making and remember, we do not know how our own health and aging will proceed.  I do not know how old you are Stewart, but since you are retired, you are probably "up there" in years. Do not fool yourself into thinking going back to work to pay for care is a sustainable solution. The dynamics are about what is actually and logically factually sustainable.  Sustainability is absolutely key. If you cannot continue to pay privately if that is the facility you move her to, then you will find yourself having to move her again, later, when options run out.

Simply a "buyer's beware" from someone with experience with such dynamics for four LOs with dementia as well as years of professional experience.

J.