The light at the end of the tunnel might or might not be a train

JoseyWales

 Day 1.  Home from the hospital after a 3 night stay for seizures.

Day 2.  I’m calling memory care homes again looking for placement. The memory care I’ve worked things out with hasn’t been accepting new residents for 4 months. I keep asking, they keep saying “maybe next month.” They have no idea when they’ll finally start again. I call many over the next week. No beds, no luck. I’m also dealing with some new behaviors, mainly severe confusion when waking up, to the point of threatening me.

Day 3. Nurse calls me. I think it’s just a survey. Turns out it was a follow-up nurse who could provide support if I had only known.

Day 8. DH has another seizure when his Monday caregiver is with him.

Day 9.  Another nurse calls me and explains more about what she’s calling about. I tell her that I’m desperately trying to find placement. She tells me that she can connect me with a social worker that can help. She’s very understanding, made me feel like things might finally go my way. Tells me the SW will call in the next day or two. She also tells me something I didn’t know -that for 30 days after a hospital stay getting into a facility is a little easier, because of some magic word that allows you go get to the top of a waiting list, or some other such magic. I’m not really sure exactly what that 30 day window does, but it’s supposed to help.

Day 12.  SW finally calls me. I explain the issue. She tells me she can help. I told her, “Please forgive me if I’m skeptical, but I haven’t had much luck lately.” She says she’ll call a few facilities and start an app with aging and in home services.

Day 13. A Saturday. SW calls me and says she found a place with an open bed. They’ll call me next week, but give them a few days because they need to review records.

Day 14.  DH gets mad at his caregiver. He threatens her. She tells me she’s done, and quits. Luckily she’s only with us on Mondays, but I’m 1 day without anyone while I work.

Day 17. Nursing home comes out for assessment. DH acts up, because I’m not giving him attention like he wants.

Day 18. My T-F caregiver tells me she’s found another job. She’s hoping next week can be her last week with us.

Day 21. Nursing home still hasn’t called me, I text. She tells me she’s looking at room availability.

Day 22. Nursing home texts to say that suddenly they have no openings. Yeah, right. I’m sure it’s related to DH’s behaviors.

I immediately call SW and tell her. She says she’ll find another facility, and start an app with aging and in home services, because decided to not do that after finding the first home.

I am now feeling like this is never going to work out.  DH has a psychiatrist appointment. I explain, in tears, how the medication he’s on isn’t working and I have now had a nursing home refuse him. Dr. FINALLY gives medication that will help.

Day 24 Call from SW, there’s a facility that has an opening. She’s sending them the info. This is a Thursday.

Day 29. Monday morning. I call SW to find out if there’s any other home she’s called or if she has an update. She gives me contact info for the facility. I call. Person tells me they will be reviewing his info this afternoon and will call me.

Day 30. Nursing home says they won’t take him. They’re not a locked facility, so don’t have the capability to take him. I about break down. Why in the world didn’t the SW find that out? Why did I wait a week to hear that??? And now we’re at the day 30 mark, where whatever magical medical stuff going on is over.

I’m pretty sure I’ll have to quit working because I’m losing care for him and no one will take him. People try to talk me down. My T-F caregiver says she can stay a while more, but that new job she has lined up is still waiting. And she’s anxious to be done with us, I know.
I call SW, tell her what’s up. She says she’ll look for more placement. Spoiler alert: she doesn’t. Of course I don’t realize this yet, and think that she’s helping. I lose days here, that I didn’t know I was losing.

Day 33. I call SW. She says she’s called some places, but hasn’t found a room. This is a Friday again.

Day 36. I’m home from work because I have no one to be here. I call the SW. She says she has called a few places with no beds and is looking for more. I check her notes on line. It says she called 2, with no openings, and sent a fax to 2 more. She told me that she sent my info to aging and in home services.

I call aging and in home services, they say they haven’t received anything for me. I start the process. I call a few memory care places, find one with an opening, but they’re currently closed because of a Covid patient. They say they’ll look at his info,

I put out a plea on facebook for help. 5 of my friends do research and help me. One actually comes up with a place with an opening. Another one works in a hospital, and had a friend who helps with placements from that hospital calling a few places, with no luck, and gave me advice on how to get placement through an ER visit. The others added to my list of places that are not accepting new residents.

The place that has an opening requires an assessment from aging and in home services, and a doctor’s visit with the primary care physician within 30 days (which we’re now just out of that window). Since I’ve just called aging and in home services earlier, I feel I have that set up. I call and make the doctor’s appointment for Thursday.

Day 37. My original facility that hasn’t accepted residents for months calls and says they are now accepting residents and may have an opening. We set up a time to go for the assessment in 2 days.  I now have 2 possibilities, but after everything I feel lke this might all collapse at any moment.

Day 39. Doctor’s visit. Chest X-ray. Memory care visit. All goes well. Memory care says they may be able to take him in 5-6 days. But they’ll call to let me know for sure, and if they need any more info. They will need to get recent doctor’s records, which may not get sent to them yet today because it’s 2:30 by the time we leave the facility. On a side note, DH really liked it there. He had no clue why we were there, but when we left he was in a really good mood and told me he wanted to go back sometime.

Day 40.  Aging and in home services finally calls. To set up a time 5 days from now. For a Medicaid waiver application. Which Is not what I want. I tell her I have no interest in a Medicaid waiver, I want help with placement. She tells me that’s not what her notes say. I say your notes are wrong. They’ll get back with me. I have a feeling that error came from the SW.

No call from memory care facility on if they’ll take him or not.

Let me just add here that the SW has not attempted to call me at all this week. The last time I spoke with her was 8:30 Monday morning (It’s now Friday) and I told her on the phone that I was desperate.

Day 41. Today. He woke up scared, angry and crying. Refused medicine. Says I want to kill him. I broke down into tears, which I don’t think I’ve done in front of him before. He suddenly started trying to comfort me. Still won’t take his medicine, but at least he’s no longer crying and angry.

What this day by day diary doesn’t contain is a record of my messages, phone calls and visits to his primary care Dr., neurologist and psychiatrist for follow up from the seizures and changes in medication (the thought is the anti-psychotic he was on caused the seizures, so we’ve had changes.). It doesn’t include that I’m still working full-time, and I’ve had some big issues with parents/students at school that are extremely stressful. More stressful than at any time in my entire teaching career.

SO. This saga isn’t over. I don’t know how it will end. I suppose I’ll have some idea on Monday. It’s going  to be a long weekend.

JudyMorrowMaloney

I Hope you are not paying this SW to help you find a place for your loved one. It doesn't sound like she's making much of an effort to help you.

Pam BH

Josey, what a superwoman you are! Mere mortals would have collapsed after the 2nd week. I wish I had more than cyber hugs, prayers, and good wishes to give you because you certainly deserve it. If it makes you feel any better, you're not alone in being supremely disappointed in the "help" social workers promise and don't deliver. It seems like the ultimate blow. Thank you for being such an inspiration to all of us in the trenches.

Crushed

JoseyWales wrote:

 Day 1.  Home from the hospital after a 3 night stay for seizures. 

I realize My thoughts may not help at this stage of this gothic  horror but perhaps for others 

But Why did he come directly home from the hospital?  

In our terrible corrupt campaign contribution dominated anti health care pseudo health system the Discharge Process is the critical point where you have any leverage  if you take him home you will be screwed by the system. 

That was why I spent the day in the hospital fighting for my brother.  He had a legaly and medically inadequate discharge plan 

Discharge planning should result in a written document, a discharge plan.  The discharge plan should be a comprehensive tool and should be based on:

• where and how a patient will get care after discharge;
• what the patient and his or her support groups (family, friends, hired help) can do to facilitate recovery;
• particular healthcare problems that might occur in the new care setting;
• clarity about medications going into the new care setting;
• arranging for necessary equipment or supplies in preparation for activities of daily living;
• resources available to cope with and manage one’s illness; and
• resources that are available to help with costs attendant to care.

  https://medicareadvocacy.org/medicare-info/discharge-planning/#definition

  


 
  

JoseyWales

I'm not paying for the SW. That's a service offered by the hospital after a hospital stay. But she's not been worth even what I've paid.

Sometimes it's hard to think straight when you're in the middle of things. I had a couple of reasons for bringing him home at the time. If I had to do things over, I probably wouldn't. But I was tired after 4 days in the hospital trying to keep him in the room. 

Ed1937

Josey, I'm so sorry. I don't know how you could possibly handle things like that. Hopefully things will shift your way for a while. You've been dealing with this for more time than I could handle. I think about you often.

shardy

Wow, just wow. What a screwed up system we have. It's so sad that we have to claw and dig out each thing we need. I wish you luck and hope this turns out well soon.

Crushed, thanks for the list and link.  I will save it for future use.

dayn2nite2

I am so sorry this is happening.

I know this is after the fact, but if he goes to the hospital again - refuse to take him home.  Tell them you can no longer care for him.

No social worker will tell you this, of course.  The goal here is to become someone else's financial burden (hospital) and suddenly getting him into a facility becomes top priority.

They will call you repeatedly to come and get him.  Tell them it is not safe to take him home and he needs to be placed.  You have no care for him while you're at work.  Repeat ad nauseum.  Then stop answering the calls unless they leave you a message with the name and date he will be taken by ambulance to the new facility.

And do not agree to take him to the new facility.  They must transport him.  The downside here is that you will not get a say in where he goes, but with the behavior and threatening, your choices are limited anyway.  Any place will do.

M1

Josey, I am so, so sorry.  This sounds like a situation where you may need to have him transported to the emergency room for psych admission for uncontrollable behaviors, he is going to have to be on a stable psych regimen before anyone will take him.  And like the others have said, just refuse to take him home.  Period.  "Not safe at home" and "unable to care for him" are the key phrases to keep saying over and over and over.  They will have to arrange placement straight from the psych ward.  The disadavantage there is that you may have less say about the facility chosen, but the upside would be relief for you, regardless.  thanks for the update.

JoseyWales

Thanks all. I knew about refusing to take him home from the hospital - I had some reasons for taking him home. I know if I shared those reasons, I'd get more lectures from some of you well meaning people. It's hard to break down a complicated issue for a few sentences on a public forum.

The aggression is almost completely gone. The first I saw of it in almost 2 weeks, after his medication change, was this morning for just a few minutes. He has a psych appointment this week, and you better believe I'll be discussing it.

Next time I will not be taking him home.

The advice from my friend who works in a hospital is to take him to the ER and refuse to take him home if it gets to that point. I took him to the ER and tried to get him admitted to a psych hospital once - they refused to do it. I should have pushed harder. Hindsight. 

I'm waiting until Monday to hear if the first facility will take him. If not, I'm calling aging and in home services immediately after I hang up. If the second facility won't take him, then we'll be off to the hospital. Either way, I hope to have an answer by this time next week.

I used to post here because I honestly had questions and was looking for support. I feel like I'm now posting as a warning to others. This is what happens with early onset. DH is just 58. That plays into places not wanting him. 

ButterflyWings

Oh (((Josey))) -

Hugs and well wishes just won’t cut it when you are in the trenches like this, but you have my heartfelt sympathy for this nightmare! I was just wondering how you were, recently. Sometimes no news is good news, but I see that was not the case this time. You poor dear. Super strong but omg you need a break — and many more things to go your way from here on. For the SW to continually drop the ball and then mislead you... they really should not be in that position as it does actual harm.

FWIW, I would probably have taken my DH home too, expecting the follow on help promised, given your regular aides hadn’t yet disappeared, and probably just at least getting you & him home to familiar surroundings after multiple days and nights in the hospital. 

I know the feeling of having to, and even wanting to, do your own work and do it well. We need a life and livelihood post-dementia and employers+careers won’t often wait. Can’t imagine what you went through, trying to get him stabilized and somehow teaching from the hospital. I had to give a major presentation from DH’s ER room once, and had to keep reaching up to turn off some alarm during the national webinar lol- it was crazy, but only 15 minutes of that & it was on to the next speaker.  But your students (and parents) rely on your full attention so, how you can possibly avoid total burnout and anxiety while trying to also balance a PWD in crisis is miraculous. And unsustainable. Somethings just got to go your way soon. We are pulling for you!!!

You are amazing, and I am SO sorry for this entire situation— that you and your DH were struck by the EO disaster in the first place. And now, that such an incompetent and clueless or uncaring “professional” has caused more stress and delay than they probably even realize.

Claiming this for you here & now: you’ve made it through the roughest part with true grit, putting several things in motion that will bring relief and that light that’s peeking around the corner now is NOT a train. Keep breathing. Sending you positive energy and some prayers for big time wins in the next 30 days!

Beachfan

Josey,

I am so sorry for you, truly sorry.  I think about you and your situation every day.  I don’t have any advice regarding your placement dilemma, but could you use some FMLA time from your teaching job to help matters?  (I know teaching is an outlet, albeit stressful, but your constant needing to leave abruptly is equally as stressful.) Could you apply for a sabbatical leave?  I know we are well into second semester, but even if you could take a leave next fall, you would have some time to regroup.  

I hope placement becomes available; I don’t know how you carry on.  Your perseverance is remarkable; I would have crumbled by now.  Best wishes. 

JoseyWales

I feel ready to crumble. I said to one of the doctor's recently that I felt held together by rubber bands and duct tape. As soon as some of that duct tape comes off, I'll probably bounce around like crazy.

FMLA is an option if these placements fall through this week.

LadyTexan

Oh my gosh Josey. You are such an amazing human. I honestly don't know how you are still standing.

I am so sorry for what you are going through. All I can offer are my positive thoughts for you and many many prayers.

I too have encountered "professionals" that are beyond disappointing, to the point of being harmful.

I do not want to cause you distress, I offer this story of my experience solely as a warning:

When my husband went to the psych hospital after his suicide attempt last May, the overwhelming feedback from my family, knowledgeable and experienced dementia specialists and most folks on the forum was "do not bring him home", no matter what. While he was in the psych hospital I toured several facilities. I realized bringing him home was not an option. Then I flip flopped multiple times on what to do. I finally got on board with the chorus to NOT bring him home. 

I explained to the psych hospital that I could not bring DH home, that I could not care for him, that it was not safe for him, that it was not safe for me. I had many many factually based but unfortunately, non-productive conversations with the psych hospital. I reminded the psych that they were responsible for a safe discharge plan for DH and that he could NOT come home. I stated what I heard on this forum, that I would NOT come get him. 

The director of the facility stated that they considered a safe discharge plan was for the psych hospital to take DH to the bus station. As you can imagine, I was dumbfounded. I strongly and passionately questioned the legality of such an action. After the conversation with the psych hospital director, I called the compliance officer, the legal services and the CEO of the hospital system. No surprise that none of them EVER called me back. I reached out to my PCP, our geri-psych doctor, a nationally recognized dementia specialist, and my attorney. I also reached out to a new attorney. They all continued the chorus of don't bring DH home. Although the attorneys did not join my crusade. I had more strong discussions with the psych hospital director. The psych hospital was not budging and neither was I.

When faced with the threat that DH would be taken to the bus station and dumped in a strange environment, I concluded that I did not want DH remaining in the facility that had little regard for his well being and were okay with bullying me. And so I brought him home. This was not the best decision, but I concluded it was the better of 2 horrible options. 

With God's grace, bringing DH home has worked out for us but has been VERY difficult. It could have turned out much much different. 

Whether to bring your loved one home or not, is not the point of my story. The point is, its not as straight forward as saying I can't take him home, its not safe for him at home, its not safe for him or me, the facility is responsible for a safe discharge plan and on and on. It was emotionally, mentally and physically taxing on me. I was a mess. You are much stronger than me. Be prepared for the hospital to challenge you. Be prepared for a battle.

Again, you are amazing. You remain in my daily prayers.

Quilting brings calm

Josey - I’ve been back to your post here a couple of times since I first read it. It’s taken me that long to a) tamp my anger on your behalf down and b) have time to formulate comments  I immediately thought Josey needs a comment from Crushed, and when I came back, he had appeared in the room.  I am just livid about the fact that you can’t get the immediate help you need.  I know people don’t want  to go back to the days of sanitariums and large state mental hospitals…. bot at least families could get some help in those days. Now you have to continually scream ‘ danger to himself and others’  and even then it just doesn’t seem to work. 

When I took my Mom to the ER after the trip from hell bringing her back to our state.  I told them over and over that I can’t  take care of her.  I work. There no one home to watch her. Her spouse didn’t make the trip with us.  I actually  think the thing that got their attention was that I  told them she opened the truck door at highway speed because she wanted to take the dog for a walk  That got her admitted and I just kept repeating I can’t take her home.  They sent her to rehab after the UTI treatment and rehab wouldn’t release her until the assisted living apartment was available. 

I think you need to find any reason that he’s a danger to himself and others and you need to scream that 24/7.  Find a reason to send him back to the ER and then refuse to take him home. As others said- go home, don’t answer  the phone, don’t transport him/ they will.  As to not having a choice of facilities- you haven’t gotten  your choice of facilities anyway. 

I wish there was something I could do. 

JoseyWales

LadyTexan - I've read your story with horror before. I think it's the EO that's getting both our DH's here. I've followed your saga, and I know it's not been an easy road, either. 

In your shoes, I would have brought DH home, too. A bus stop!!!! I'm so angry for you.

ImMaggieMae

JoseyWales, I think it is the medical system in this country that is held together by rubber bands and duct tape. I feel horrified just reading about what you are going through. I wish there was something that I could say or do that would make things better, but I am still learning just how awful PWD and their families are treated. Lady Texan, the medical director of the psych hospital stating that they thought safe discharge of your DH was being dropped off at a bus station is terrifying. I hope there is some legal recourse. 

You are amazing. I am so sorry you are going through all of this. 

toolbeltexpert

Joseywales. I can't  imagine the steps you have walked.  I would have been admitted if I had gone thru half of what you went thru. I am gonna put a link to something I had read on a site called elderlaw. It is a recent article March 1 2022. Some of the things I read in this thread kinda clicked with what I read. I constantly  copy and paste stuff that I might need to learn about situations like you have been in. I don't know if this information  is gonna be helpful?   But praying for you and your situation.

https://www.elderlawanswers.com/court-rules-medicare-beneficiaries-can-appeal-switch-to-hospital-observation-status-18678

Joydean

Josey, it sure sounds like you have been to hell several times around! I can’t think of anyone who would treat a mad dog the way you have been treated. The lying SW should be reported and not just to the hospital. All the grief her lies have caused you. As others have said I also feel anger at these people and it’s scary to know we really can’t trust or believe anything or anyone anymore. 

I join in with others offering prayers for you and your dh. Hugs sent your way. I pray you hear good news next week!  

Buggsroo

Josey,

I am terribly sorry with all the awful stuff is going on. I can imagine how fragile you must feel. I have a part time job and my husband acts up when I am working. I know how frustrating this can be. I have broken down in tears and often whisper ‘I can’t do this anymore’ but then I do.

When my dad suffered from an auto immune disease, he had been on a respirator for six weeks, the hospital wanted him discharged. Luckily a social worker helped my mother stating unequivocally that he could not be sent home with my mother. The social worker got him a bed in extendicare nursing home, he stayed there for six years before he died. 

The hospital should not have discharged your husband until he was stabilized mentally.

I hope this will end in your favour. Sending you a virtual hug and hoping you will get resolution and some peace.

French

 Josey, my heart goes out to you. People don't understand the level of distress you can be in and it's really shameful to lead you on like this.

I hope that today will bring you good news.

Jeff86

What an awful experience you’ve had, JoseyWales.  I am so sorry for what you’ve been put through and what you are still working your way through.  You have shown amazing fortitude in the face of monumental challenge and incompetence.  I hope you reach a favorable resolution very soon. 

Thanks too to LT for sharing your experience.  We were all worried about your safety but I am sure that in your shoes, faced with the same terrible choices, I would have opted as you did.  

In our pantheon of heroine caregivers you two stand on some of the highest pedestals.