Er update

toolbeltexpert

I know so many of my forum friends are going thru so much so I will try to be brief.

Dw was transfered to a geripsych unit this morning at 2am. They had given her 1mg of amb???? It really helped her get some sleep before they transfered her by cruiser. I talked to someone a few minutes ago and they explained the possible medication and side effects ect. Tomorrow I can visit for a 1/2 hour in the pm. Like most I haven't been able to grieve till now the flood gates are open. I am gonna bring her some clothes and her hearing aides today. I am grateful for all your prayers. They asked what I wanted to do at her release and I said I would like her to come home depending on her improvement. 

Ed1937

I know this is incredibly hard, and I'm sorry. Hopefully God hears all the prayers, and takes care of both of you.

M1

Stewart, find out if she's in for just 72 hours or if it can be longer.  72 hours is not enough time to stabilize.  As hard as it is, you may be well served to tell them that you can't take care of her at home.  Good luck.

dayn2nite2

Also, if they do recommend placement, do you have a facility name to give them?  If not, you need to figure out where she is going to go.

I know you are hoping for her to return home, but that may not be possible and you want to be able to direct the discharge planning.  You don't want them to say she can't come home and then you are trying to figure out where she can go in 2 or 3 hours.

Visiting is okay if you already made the decision of where she might go and whether they have a bed for her, but if you don't, I'd fill my days with facility tours and cost info.

You must always have Plan B and for you Plan B is a facility that is prepared to take her on discharge.

Quilting brings calm

I’m going to agree with M1 on both counts.   It takes at least a couple weeks to determine if a medication will work, longer to reach maximum potential. Plus the side effects- which you think you  have seen this last several days.  If it was truly the medication  that caused this and not the natural progression of  dementia.  

What you want ( her back home stable) and what you can or can’t do may not meet in the realm of reality.  I’ve read stories,  here and elsewhere, of people bringing their loved one home and things going to $&@“ quickly.  It’s very hard to get placement from home- as you saw this weekend just getting her to the ER.   It’s much easier directly from the hospital.  My suggestion is that you tell the doctors you cannot take care of her safely at home at the present time.  Let them place her and you visit her until you are sure there is enough stability to come home.  She can’t come home without recognizing you or if she is escaping.   

Please get as much rest as possible and reconsider after that.  

harshedbuzz

TBE-

I am glad you were able get her into the ER and onto the geripsych for an evaluation/medication. This should improve the quality of life for the both of you going forward. Behavior is communication. 

In your shoes, I would communicate a need for placement now which would give them the most time to find an appropriate placement with a transfer from the hospital directly to MC/SNF. Then I would see how the placement goes before deciding on next steps in terms of bringing her home or not. It would be far easier on both of you to change your mind about bringing her home in a month than the other way around. 

You have, in the past, described your DW as resistant to your caregiving efforts; you may find a well- rested team or professionals are able to get past that resistance and deliver better care. My mom wanted badly to care for dad at-home, but he fought her on medication, hygiene and safety issues like it was his job. He wasn't getting an appropriate level of care and she was killing herself by inches. Once in care, his dignity was better preserved because he allowed others to deliver a better standard of care and my mom could just focus on being a wife and loving on him. 

HB

Jo C.

This is a heavy, heavy place to find oneself and grieving is part of it for sure. 

TBE: you are such a kind and dear person and wish to do what is right and best and you love your wife dearly.

As an RN whose profession has been as Administrator of Patient Care Management with multiple departments, I can share that discharge planning, especially from a specialty unit is a big time bit for said department.  IF they hear, "I want to take him/her home," that is like giving them gold and most of the time, that is it; no one strives to do more and it makes an early discharge easier.  Even though this is what your heart tells you now, it would be important to clarify that and let them know that she was in such a dreadful dangerous state, that you are uncertain whether she can be cared for at home safely any longer. Even though you want the home setting, it is important for the staff to be proactive for the situation as it plays out and you may have to waffle a bit to get staff on the ball.

I would be leery of them wanting to discharge her very soon.  The meds she was given and stopped abruptly, etc. may be part of this and she will not be out of that woods right away.  She needs more care, medication adjustment and oversight for effectiveness and side effects and to do reasonable ongoing appropriate care.  Beds are at a premium; you will have to be her advocate in case they want an early discharge.

Also, I strongly recommend that you see the Psych Social Worker asap. Let that person know that you are concerned re the safety of your wife at home and placement may be the safest and kindest thing for her at this time.  You will be given names of care facilities that may work best.  You can also be given information about applying for Medicaid Long Term Care benefits if that will be what is needed.  It is really important that you have screened facilities and have a Plan B should that be the necessity whethor for now or for in the future.   You dear wife needs care at the level she is at instead of trying to force things - and in fact, she may be more comfortable and at ease without being in the home setting where all the behavioral triggers exist. 

Perhaps she will be able to return home and be able to be cared for on the 24 hour continuum in that setting; but please have an alternative so you will not be caught up in the same situation requiring another ER visit.  That would be so hard on both of you and hopefully can be prevented.

NOTE:  Since she is now in a specialty setting, speak to the psychiatrist managing her as well as speaking to the RNs and ask them who they recommend as a Dementia Specialist your wife can continue to see and have manage her care as an outpatient.  This is important to everything else - the neighbor friend is not in that specific specialty and his approach has not been effective and may have contributed to the situation as is.  If you have a specialist, see if he/she can make a visit to GeroPsych as a consultant while your wife is there to get her established with said specialist without having a wait after she is discharged.  This is the point at which preventive planning is important.  The present psychiatrist can actually order the specialist to consult on the "case" and get that ball rolling; the supervising RN can also assist in getting that done.

It is a lot to be dealing with, but once you have got the important bits addressed, life will become much easier.  And; TBE, if placement should be necessary, it is not abandonment, it is not failure.  Do NOT think about being judged by people.   It gives your wife a setting without those triggers she has at home, and with good routine and structure and adequate staff to attend her on a 24 hour basis as well as increased socialization and activities to please her that she could not get at home. This may work well for her; time would tell.  The plus for you is that it frees you to be her loving husband without the stress and severe strain and reconnect that loving closeness without fear.  She will not get better; her disease will continue to advance, there is no way to stop that, but in this sadness there is a big plus - you are a wonderful and loving husband and advocate, no matter what, that will not change. 

Let us know how it is going; do not let hopeful wishes interfere with adequate care plan needs, getting it done right will make a huge difference no matter the setting.

Best wishes go out to you as you move through this trying time, we will be waiting to hear how things are evolving, one foot in front of the other and things will begin to fall into place.

J.

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Joydean

Dear Steward I am so very sorry! Each time we tell ourselves “this is the hardest thing I’ve had to “  then the other shoe drops. I hope and pray the doctors there can help get your precious wife back to at least base line. Steward please listen to what M1, and others have said. You mentioned the other day (I wouldn’t like it if she was doing this to me) her love for you is just as strong as yours for her, doesn’t that mean you have to do anything to help her? While this is ripping your heart out right now it’s trying to help her. I say that with love and respect for you both!  God give you strength to do the right thing!

ImMaggieMae

I am so sorry you are having to go through all of this. I agree that she needs to be stabilized before she can come home and that is probably going to take a lot longer than a couple days. A lot can be improved with the right medications, but it seems to be a matter of trial and error for most people. That takes time. Insist that she is a danger to you, herself and everyone around her. And please get some sleep yourself and try to eat.

toolbeltexpert

I am now finally stopping, been going all day. Brought dw some clothes and hearing aides, more on that in a minute. I talked with her social worker. He interviewed me and I did my best to give an accurate history. My dw had a hard childhood, her mom died when dw was only 12. And being the oldest girl was thrust in a mother's role and did it flawlessly. She was bullied and degraded as a school girl.  The social worker was though and when he was done he said I was the most informed family caregiver he'd ever met. I owe a lot to the folks here for that. When I left there I went to the mcf I like and informed them that the social worker would be sending them his information. I am gonna need a job again to pay for this. Visiting at the mcf was my " me time" I went to the mc section and talked with the head nurse whom I have known for many years. She is the lady who will call if they have a bed. I got to work with one resident who came up to me because I had bounced up on my toes and he asked me why I was bouncing, so I told him I was Happy which led to a verse of, if your happy and you know it. He laughed and walked off. I really love doing those types of things it lifted me up. Why can't it go like that with dw? I went to the bank to look into moving some money and getting some cash for the next 2 months. I got home and the mcf called and asked if I wanted to talk to my dw, I should have said no. I am emotionally drained, well she couldn't understand me and kept apologizing. I asked her if she had her hearing aides but couldn't answer. So I got her to give the phone back and I asked the cna about her hearing aides, then she told me dw has getting agitated because she wanted her pocket book so she took her hearing aides out and threw them, they made it sound like she stomped them. The cna said they got them and put them up. 4200 I saved up to get this pair and now who knows if they any good. Not happy. I wish they told me they had a cell phone time for the residents. Tomorrow is the first opportunity to visit and I don't think I can handle it yet. They started her back on the depakote so they can she how bad it is and they said by law they had to try the lesser drugs before the antipcyh  drugs, they Also said they were going to add Lexapro tomorrow and they might use melatonin tonight if it is needed. I am shot. I had a bagel for breakfast no lunch and leftover pizza and fruit cocktail for supper.  I have been going around the house looking for all the lost triggers, watered the flowers. I need to mow badly but that's another day.  Sleep sweet sleep no fear no listening for every bump in the night. I am gonna put the ceiling fan on high to drown out all other noise.  Thanks all my forum friends. Oh and they are gonna have a 3 day meeting with all the parties involved by PHONE. M1 the social worker made it dound like at least 2 weeks. I will continue about my safety and hers. Right now I know I can't do it. I'll  get a job first so she can be placed.

dayn2nite2

I am sorry you already bought new hearing aids for her, they are so expensive.  If she ruins these as well, please stop replacing them.  It is more likely a combination of hearing loss AND the brain's inability to understand that's going on here, and the hearing aids are not going to fix her brain or help it work better.

I'm glad you already have a place in mind.  Does this facility take Medicaid?  Did the social worker discuss a medication for long-term Medicaid in your state?

Sometimes we really like a facility, but financially it can't work.  It sounds like finances may end up being an issue?  Please do not place her in a facility where you have to put yourself back to work in order to do it.  I know you like this place, but you can't kill yourself to pay for the facility!

Quilting brings calm

First…. See if the hearing aids work or can be fixed.  Second - when did you buy them and what kind of warranty did you have?   My spouse lost a Starkey hearing aid and it was replaced for $250 because  it was within the warranty period.  Third- If they aren’t covered  by warranty. Do not buy her anything except the cheapest simplest ones you can get.  At this stage, she is going to misplace  them  anyway or forget how to use them. 

You’ve reached the ‘I can’t do this’  stage right now  in terms of the visit.  That’s ok.  It really is.  You’ve got to protect your own psyche.   I talk to my mom almost daily by phone, but I’ve only seen them twice in almost two months.  My step-dad pushed me over the edge to the ‘I’m done ‘ stage.   I’m doing the financial stuff, the medical appointments, etc but I can’t bring myself to set foot in their apartment.  When he decides he’s tired of shopping,  I’ll order the groceries and supplies.   

Lastly if you need to get a job once you place her. Do so.  Lots of places  hiring 

Ed1937

You really have a lot going on. Hopefully if she gets in that MC, it will help being that you know people there. 

Sorry, but I don't remember if you have seen a CELA. If not, that's probably something you should do. I understand that's not something you can do in the next few days, but it's really important if you haven't done it yet. If I remember right, you're in TN, is that right?

Please try to get some rest. There is no doubt it is sorely needed. You need the rest more than she needs visitors. I know I've said this before, but more prayers headed your way.

Jo C.

Dear friend, what a day - whew - and of course that is an understatement.  The hearing aides will have a warranty, you will want to check and see what the warranty covers and if it is still good; many of the aides, especially the expensive ones, will have insurance against loss or breakage that may have been bought when purchasing the aides.  You may also want to check and see if your wife's hearing aides have such a policy; it would be easy to forget such a policy exists.  My MILs did and it was wonderful as it covered a new pair of aides at no cost when hers were lost and again when damaged.  We had no idea she had such a plan, but curiosity had me checking and there it was. 

As for the visit - it is perfectly alright and understandable that you need not make that visit tomorrow or at all until you have been able to recoup your energy and meet your own needs.  As we say; the caregiver needs to put on their oxygen mask first before applying the LOs in order to stay healthy and not collapse from exhaustion and stress.

You have accomplished so much in 24 hours, your batteries are running on low, a good nights sleep can be helpful in recharging.  Sweet peaceful sleep is wished for you along with a better tomorrow.

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I wanted to mention 2022 Tennessee Long Term Care Medicaid for care facilities, but do not want to exhaust you, so if too tired, you can read this later.  Here is a good link to that topic:

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

Only your wife's income would be counted when applying. ALL income in your name only, your social security, pension, IRA, 401, etc. in your name only will NOT be counted.   You keep it all.  She can have $2,000 in cash assets, and you can have up to $137,400 in savings.  There are more ways to save your estate and if you get to a CELA it would be well worth it to position yourself well.

Medicaid will not recover the costs from your house after your wife passes; as long as you ar living in it, no recovery at all..  If you see a CELA for planning, there are ways to protect one's assets as much as possible; however, that needs to be done prior to applying for Medicaid.

If your wife qualifies for the criteria except her personal income is too high, then Tennessee has Qualified Income Trusts for Medicaid where her and ONLY her income, (not yours), would go into a Trust each month.  When the bill comes from the care facility, the money in the Trust is paid out and Medicaid makes up the shortfall.

This of course means that one would need to choose a facility that has a contract with Tennessee Medicaid which is called, TennCare.  Medicaid in your state has 45 days in which they must process the application.  If approved, state will usually reimburse any money, up to three months worth, that the spouse or family paid for the care prior to the Medicaid approval.  I would check on that though to ensure there have been no changes.

If applying for Medicaid, just be absolutely sure every line on the application has been filled out and that all documentation is present as requested. Biggest slow down for gaining approval is that the application form is not fully filled out or requested documentation is not included.

 So . . . that is just a bit of how there is some assistance for care facility costs IF the facility is contracted to Medicaid and they accept it for the unit your wife would be admitted to.

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 I so hope that a way will be found that you will not have to go back to work in order to pay for the facility costs. If the present preferred facility does not contract with Medicaid, it may be that you might wish to check and see which facilities do that are near you.  If absolutely necessary, there are ways for Pastors to make their way back into the work force again as you know far better than me; even Hospice needs Chaplains as do hospitals and churches who need coverage for their own Pastors for one reason or another.  Just so hope that you can avoid that, but if you must, perhaps part-time only would be sufficiently helpful.   You still need to protect assets so you have protection for your own needs in the future; that is where a CELA comes in when you have time for such an appointment after more urgent matters are addressed.

So hope you sleep well; don't forget to eat.  We will be watching for your updates; if there is any way we can be of assistance even just doing research, etc., let us know; we are here.

 J.

Bob in LW

TBE, I am sorry that you are going through this, and my thoughts and prayers are with you.  As for the hearing aids, I am in agreement with the others here that you should not be spending much more money on them.  My SO has lost one of each of two pairs.  Fortunately, one is being replaced under warranty.  I purchased an inexpensive pair of hearing aids on Amazon, just to keep as spares.  Sometimes they are referred to as "sound amplifiers" as they are not programmed for a person's specific hearing loss.  It's like turning up the volume on the TV, and that may be all that your DW needs.