ToolBeltExpert

Ed1937

Hi Stewart. Just wondering how things are going now. Haven't seen you on the forum for a while. I hope things have turned around for you and your wife.

ImMaggieMae

I’ve missed you too, Stewart.

Joydean

Steward prayers for you and your dear wife. Hope everything is going well for you both!

Scooterr

Yes Stewart a lot of people are concerned about you my friend. You have some much on your plate, we understand sometimes you just have to step back, and gather your thoughts, and do what's right for you and your DW. I just pray your healthy and your wife is doing better. Stay strong Buddy.

toolbeltexpert

Thank you all for your concern, I wasn't going to post till she was placed. She is still in the geripsych,4 weeks next Monday, the depakote caused her blood platelets to drop, she had gotten down to 64k so they stopped that,  her base was 162k today she is back to 97k, she has had it drop back one time since but going up is good.

So now she is getting zyprexa 3tid 2.5 mg.

 She is developing tremors from that, and that can cause Parkinson, and if it did, it wouldn't reverse itself. I pointed it out to the nurse when i left that she has developed tremors, the nurse said she didn't  this morning, she asked dw to see her hands, they were just shaking, she never had tremors and her lip is quivering. That's is a possible side effect. She is getting 20mg of Lasix another side effect her legs look a little swollen. Still getting Lexapro 10mg, and vit d supplement. It's just a tiny bit off. Oh and Ativan which knocks her out. Guess 6 people couldn't  handle her for sundowning. They called me a couple times to help calm her down.

So now placement, thank you Jo C I used the 4 questions you gave me in one of my last post. That was what I was looking for! I have burned down the path visiting places that take Medicaid, 2 places I found are 2 star and a red stop sign for abuse. The survey told about patient sexual abuse from another patient. The one that made it a no is a cna had tied a patient's arm in his sleeve. And left him till a nurse found him, that's a big no for me. To much stuff that hasn't panned out. I am past 50 miles out now in one direction, almost certain the other direction isn't gonna pan out either, all higher end places that say they take Medicaid on the Medicare site but most calls determine they only take Medicaid for sn, not mc. 1 nice place about 30 miles away said they are actively seeking a Medicaid approval  for their mc. So I toured it anyway. Really nice just no Medicaid transfer

I Started the Medicaid application process with some help. Not done yet though.

I want to be short, so here is the kicker the sw sent out a referral for dw with the closet facility near me. FOR AL. Not mc? And this is the place that had the memory care close during the pandemic. FOLKS IT IS PERSONAL PAY, till she gets Medicaid.and then it only pays 1100 per month I pay the other 2 grand....

The sw said dw  doesn't score enough points for mc. I found this out today.  He's been on vacation and today was in caregiver meetings so I couldn't see him.

I might as well bring her home. I am totally against losing control over what other people decisions that effect my dw care. This isn't a rant BTW. I am pissed. I am sure others have gone down this road. Well I am not gonna take a place that can't keep my wife safe from elopement. 

I am working my butt off, when I left the hospital Tuesday the brake light and alternator light came on, 30 miles to get home,when I pulled up to my garage door it died,so Wednesday was all day getting that fixed in the 90 sun. I got it fixed last night about 7. I had 2 places test that alternator both tests showed good, guess what the alternator was the problem. I am up before the sun and come in the house when it goes down

So much has happened and everytime I think it's going the right way something else changes. 

And I am sorry that I don't have any good news, but I won't give up. Everytime I visit dw she asks when am I coming home, when I try to explain I am home,she gets all confused and starts crying, I am trying to deflect this but she keeps asking. It's looking bad for getting dw placed

Gotta go eat now. Thanks everyone. Yes Ed I did copy incase! 

Ed1937

Stewart, I'm sorry you don't have better news for us. Your stress level has to be way up there. Maybe if you could find an hour to sit and listen to some comforting music, it would help. We'll be waiting for some better news from you.

Joydean

Thank you Steward for sharing your update. So very sorry things haven’t improved. Hoping and praying you and your wife will be getting better very soon. Sometimes when you’re at the bottom the only place to go is up. I’m praying that you will start getting out of this pit sooner than later! Take care my friend!

jfkoc

Thanks for the update.

How hard it is when the right decision is not the one you really want.

60 falcon

I'm just so sorry it's got to be so hard for you and your wife, for all of us.  Sometimes the feeling I get might be like riding the waves in a small boat by myself in the middle of an ocean storm while not being able to see the horizon.  Occasionally the sun peeks through.

  I hope things gets better for you. For all of us.

Jo C.

You have been missed; it is good to hear your voice.  I am deeply sorry for all that is happening.   I can only imagine the stress and how hard you have been working on this as well as how difficult it has been for your dear wife with the medication effects.

I wonder - did any of the care facilities that did not have a MC have special floors for their dementia patients?   I have found this at a few NHs.  There would be one corridor that was dedicated to their dementia patients, they had a secure door to the corridor, and the staff trained for dementia dynamics; but it wasn't MC. Cost was the same as the rest of the NH beds and they were covered by Medicaid.

My heart goes out to you and your dear wife.  One of the trying issues I experienced was having to move my LO to an undesired place as nothing else was available, but kept my eyes open and made contacts at intervals.   A few months later, a bed opened at a much more desirable care facility and a transfer was made.  Nerve wracking.

The idea of taking your LO home though not the most desired choice may possibly be doable at least for awhile, if you have some assistance.  Some states do have their Medicaid structured to provide benefits in the home including an aide for a limited amount of hours each week.

Again, Stewart; so very, very sorry that things have not gone smoothly.  When you have time, let us know how you are doing.  We are here and we care.

J.

Cherjer

So sorry to hear all that is happening with your dw. But good to hear from you.

Jo, how does one contact another person on this site for a private message?

M1

Stewart, that is certainly a difficult story to hear.  I'm shocked that the SW says she wouldn't qualify for MC and not sure I believe it.  I wonder if there's a way to get a second opinion.

Sounds like it's not clear that she'll tolerate the Zyprexa either, from what you're describing.  Tardive diskinesia is a terrible thing (that's the tremors etc).  And Lasix is hell to take, period, it will hasten urinary incontinence, almost certainly.  I'd question them about those things, ridiculous to chase side effects like that.  So you may still have some hospital time if things aren't stable.  

I know how exhausting it is to have to keep after them on these things, but there is no one else to do it.  And I still think it would be daunting for you to try to manage her at home without 24/7 help.  

They can't discharge her unstable and without a viable plan.  Sticking your feet in the mud may be the best short-term strategy to keep the ball in their court to help you find the right answer.  

Hope you yourself are hanging in there.

toolbeltexpert

I have a question to everyone. How bad is it on the pwd if I change up our living arrangements. If DW has to come home I have an 11 by 30ft sun room that is right off my bed room. I thought about moving my bedroom out and putting her craft room in there and then setting up her bed in the big room. I would be in a smaller bedroom. She COULD get out of the sliding glass doors they are not lockable and I have a block at the bottom of the doors but she is used to that. so she could exit in the night cause my room would be apart from hers. Currently all her stuff is upstairs every thing. I don't think the stairs would be safe anymore for her. I am just throwing this out there to hear about how it went with others. 

Well here I am, got the funeral stuff done. The SW keeps telling me she doesn't qualify for nursing home? the one he sent the referral to has made it clear, no Medicaid pending period, and it is assisted living. not mc. 3000 plus a month, but they haven't even evaluated her, I think that's gonna fail. 

 Called the CELA no answer yet. Called the Ucdd who are doing the Medicaid app slash TN care choices nothing back yet.

I asked to talk with her MD about the tremors, he hasn't returned my call either. They said if he didn't it would be Monday. I am gonna keep up the pressure about these side effects. I had kinda suggested seroquel, when they changed from the depakote, but they are the pros not me, but it was obvious to me she was shaking. M1 I am knee deep in it. I sure can drag me feet if they want to go this route.

It is looking like she is gonna end up home unless the winds of time change, I am doing everything I can think of, the SW has only sent that one referral. I just don't understand how they can think she would be a candidate for al when she can't find her bedroom in the geripych. She has been an elopement risk in the afternoon during sundown time., Gotta go I'll keep trying.

May flowers

Toolbox, first off, praying for you, your DW and the whole situation.

I can relate to my FIL being in no man’s land with placement right now. He is too far gone for MC (unless we pay for a 24/7 caregiver on top of the facility fee, impossible), and no NH within an hour of me is fit for any human being.

So, we moved my FiL downstairs to what is essentially an in-law suite, very cozy, and we just moved our daily life and meals down there with him until bedtime, and we can have some time to ourselves and a little retreat (still using monitors/cameras/etc). He is immobile so it works. It would not have before.

We are about to move to the next level of care, moving from part time to full time, and just let our private caregiver go to use an agency. We love her, but his care has become just too much for her.

As for the tremors, one of the meds FiL was on did that to him, not sure which one, but it did resolve when he came off the meds. He has tolerated risperdone the best so far, and doesn’t make him groggy (it does the opposite - makes him the energizer bunny) but everyone is different.

ImMaggieMae

Stewart, I am so sorry you are having to jump through all these hoops to get help. 

My DH has been on Risperidone since this last September. It has been like a miracle drug for him and started working within a day or two when they started him on it during a weeklong hospital stay to get meds figured out. The only other dementia med he takes is Memantine. It got rid of the agitation but definitely does not make him groggy until late at night while we’re watching movies. He sleeps well throughout the night with it. It makes it possible for him to live at home without completely overwhelming us.

I hope you can find medications that work as well for your DW. You are both in my prayers.

Jo C.

Cherjer, this link gives directions on how to do private messaging through Connections:

https://www.alzconnected.org/uploadedFiles/Content/Contact/connections.pdf

I got it through the "Help" prompt at the top of the page.  All sorts of interesting stuff in there.

J.

M1

Stewart, I am very professionally familiar with the TN Medicaid waiver program (CHOICES) designed to keep people at home and out of nursing homes on the states' dime.  You can expect to get a offer for a certain number of hours of help from them each week (dependent on availability of caregivers, which of course has been limited by covid).  The number of hours is typically limited to 27 per week or less (1400 hours/year) and is based on time assessments of her needs for hands-on care, such as help with bathing, dressing, grooming, toileting, walking --and time allotments for help with housekeeping, meal prep, and laundry.  They will not provide "sitter services" or supervision if not hands-on.  Since you are not working outside of the home, they would expect you to provide a lot of "natural support."  You may be able to guesstimate what they would offer, if you have a rough idea of how much help your wife needs with those hands-on activities of daily living.  Even the maximum 27 hours/week is obviously only 3-4 hours per day, if that.  Depending on need, they sometimes cover some other things like delivered meals, pest control services, minor home modifications (such as putting in grab bars), a personal emergency response system (if she could use it), and a certain number of "respite" hours (216/year).  All this is financially calculated to cost less than full-time nursing home care and is based on agreeing to "estate recovery"--that's the part your CELA can help you with, to make sure that protectable assets are not in her name.

I expect this is very similar to what's offered in most states.

toolbeltexpert

M1 thanks,some of what you have written I had read recently, and they make it quite clear about the intentions what they want everyone to do. I started that process and they are going to go out and access her themselves on this wednesday if shes still there?  Fyi i dont mind the estate recovery, but i wish i got my CHOICES, by that i mean facilities but they make them for you, just by the fact you choose that path. I download the pasrr not from the state but from an insurance company.i really don't think they want folks see this cause it was very hard to find. I am gonna get to reading more about it. The woman from the area Agency, ombudsman called and they really sound like they are very knowledgeable and caring. She goes with the cela and inspects some facilities.  I talked with dw sil, she mentioned that dw made a big deal about her hands shaking, they better get this under control in my book. I read on one web site that olinsapine probably not spelled right had a 71 percent chance of developing Parkinsonism. Probably not spelled right either anyway. With all of those extra problems, I want them to pay attention to what's going on, just not sure that's happening, I could ask my neighbor who is still primary to see if it is, because i can't  visit till dunday afternoon, who knows how bad that will get? 

I am doing a house tear down moving everything downstairs, cause I don't know how this is all gonna end, I am a boy scout, Be Prepared. It's fun moving a queen size mattress by your self. The living room now has a new look as well, I know change is bad but sometimes an all new look works well,sometimes! Still not wanting anything but a placement in a decent facility. Well thanks again. On a positive note I paid for our funeral arrangements. It s like buying a mobile home and sinking it underground. I bought the headstone a couple years ago. So it is finished.