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 Dumping Your Loved One at the ER 
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Dumping Your Loved One at the ER
My husband has become particularly difficult to handle recently. He wants to stay in bed all the time, it's a battle to get him to drink or eat anything, it's a battle to get him to go to the bathroom, it's difficult trying to get him to stay up for any length of time, it's difficult to get him showered, shaved, teeth brushed and dressed, and it's difficult to get him to go to the doctor.

A local health care agency has strongly recommended that I get him to the Emergency Room, either by my vehicle, or by ambulance, and then tell the doctor there that I can't take care of him anymore, and that this is the only way to get him into a nursing home. While it's true that I now want to have him placed in a nursing home, because he has become too much for me to handle physically and mentally, I fear the ramifications of achieving this goal by dumping him at the ER. I really feel it would be better (and more dignified) to have his new neurologist help me get him into a nursing home, which will mean a minimal 3 day stay in the hospital, so that he can be transferred to the home from the hospital. Otherwise it may take weeks or months to get him into a nursing home.

He has an appointment with his new neurologist this week, which I plan to get him to via the white lie route. Has anyone else on here taken their loved one to the ER and told them they could no longer take care of their loved one, just to get their loved one into a nursing home quicker? If so, were there any ramifications for doing this?

Please advise, as right now I am very petrified to try this method of eventual nursing home admission.

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Beth


Sun Jun 10, 2012 12:30 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Dumping Your Loved One at the ER
Beth - this sounds like a scary way to me too, and I'd certainly be hesitant to do anything like it. I'm hoping someone on here has had this experience and can be helpful. I think this may be different in different states or cities, but I'm betting there is someone out there who exhausted all other ways and had to take their LO to the ER to get them more quickly into a NH. I guess in a desparate situation, I'd think of it more like "getting immediate help for a situation that is untenable" than "dumping". Afterall, if you did do the ER route, you'd be doing it to help him as well as you, right? If you are not able to care for him at home any longer, it's about caring for both of you because he will still depend on you to be healthy and be a CG even if he isn't at home. If the neuro. appt. is in a few days, does it seem like you can hang in there for a few more days? Are you totally at wit's end? Can you get someone else to come in and help you between now and his appt.? Sending you a big hug. This is really, really tough. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Jun 10, 2012 12:48 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Dumping Your Loved One at the ER
Lynn is right -- please don't think of whatever you have to do as "dumping" your husband. You are struggling mightily to ensure he gets the best care possible. That is not dumping.

If it is at all possible to wait to see the neurologist, even if your husband spends most of the time until then in bed, unbrushed, and not dressed, I think that is what I'd try to do. But I don't fault you for doing whatever you have to do. There are no perfect answers here.

Is the doctor you will be seeing a specialist in dementia? Lewy Bodies? I am wondering if he or she might consider hospitalizing your husband for the purpose of evaluating drug therapies for him. I don't recall if you've said what medications he is on now, but adjusting/adding/changing medications might be a worthwhile first step in making the situation more managable no matter where your husband winds up residing. And I'll admit to a bias here -- drug therapies have made a HUGE difference for our situation. I know that route is not always effective, but I can't help thinking it is a reasonable starting place.

My heart goes out to you. You will get through this. You will develop coping skills for the new normal in your life. It is never ever going to be easy. Take it one day at a time, one crisis at a time, and never beat up on yourself for not doing the "right" thing. The best you can do has to be good enough. And it is.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Jun 10, 2012 1:53 pm
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Joined: Thu May 31, 2012 6:51 pm
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Post Re: Dumping Your Loved One at the ER
Lynn & Jeanne:

Thanks for replying to my post.

My husband is currently on 6 mg of Exelon twice a day, which must be taken with food, otherwise he gets a stomach ache. So that is why I push so hard for him to eat breakfast and dinner. If he only wants to drink a Boost for lunch, I'm fine with that. And yes, I am at my wits end and I'm hoping I can hang on until Wednesday when he has his appointment with the neurologist. All I know about the neurologist is that he treats patients with dementia. Also, we have to go with the doctors who are in our secondary insurance company's network, otherwise we end up with the 80/20 deal, which includes high deductibles.

Before we go to the neurologist appointment, I plan on writing the doctor a letter for him to read before he comes into the exam room. That way I won't have to say everything in front of my husband.

In the meantime, I will be seeing my new PCP tomorrow, and I will tell her everything I've been feeling. I just can't hang on any longer. Taking care of him is too much for me, physically, mentally and emotionally. So, he needs to be placed in a NH as soon as possible, for both our sakes.

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Beth


Sun Jun 10, 2012 7:51 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Dumping Your Loved One at the ER
I am so glad that you are seeing your doctor tomorrow! And writing up your observations of your husband's behaviors so you don't have to discuss them in front of him sounds like a wonderful idea.

If it will help for the next few days, consider relaxing your standards a little. If it is easier to get him to drink Boost in the morning, that still means his stomach is not empty and he can take his pill. If wearing pajamas all day and not shaving is OK with him and easier for you, you'll both survive that a few days. Remind yourself that you do have an out -- you can always call the ambulance and not wait until Wednesday. Sometimes just recognizing that there are options reduces the trapped feeling and helps us cope.

As we keep reminding each other on the forum, take one day at a time, one hour at a time. Sometimes just getting through the next 10 minutes is all we can cope with. You'll get through this, and some better arrangement will be set up. Hang in there!

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Jun 10, 2012 8:26 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Dumping Your Loved One at the ER
Is it not possible to discuss this matter with your old neurologist? I would think the new neurologist would be reluctant to pick this up. Are you the person who just moved to a new state? Would the old neurologist be willing to communicate with the new one on this matter?

Why does your husband have to stay 2 nights at a hospital before he can go to a SNF? Are you trying to get Medicare to pay for the SNF? Why should Medicare pay for a SNF?

I'd advise you to select a care facility first, and discuss with them the ins-and-outs of getting your husband there. Can you get your husband there by telling him you need a short break?

If your husband has to be section 51 first, does that limit the facilities that will accept him?

Seems like you need lots more facts -- probably from the care facility of choice.


Sun Jun 10, 2012 8:49 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Post Re: Dumping Your Loved One at the ER
Robin, from other posts I'd say yes, there is a need to take maximum advantage of any insurance coverage available. Do you have ideas for that?

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Jun 10, 2012 11:06 pm
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Joined: Fri Jan 13, 2012 11:51 am
Posts: 43
Post Re: Dumping Your Loved One at the ER
Beth,
Does your husband have a primary doctor who would consider admission? From my experience, there needs to be a hospital stay for 3+ days in order for medicare to pay for a rehab facility. Even then, the patient must make progress with rehab in order to stay. I don't mean to be a downer...I'm positive you need a break from care giving! My dad got stuck in a similar situation a few months ago..and has some pretty hefty bills to show for it! My mom's blood pressure was on a roller coaster..very high's and lows, so the primary doc had her admitted to stabilize and observe. After 48 hrs, it had balanced to an acceptable level, but the hospitalization threw my mom into a lewy decline. So dad had to pay for 5 days of rehab at full rate..ever though she wasn't strong enough to come home, there wasn't a medical reason for rehab/SNF.

Have you tried a hospice evaluation? they will cover respite stays to give you a break.

Elder care services in some area provide low cost assistance with personal care too!
Wishing you good luck!
~Heidi


Sun Jun 10, 2012 11:30 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Dumping Your Loved One at the ER
Jeanne,
My question was more an ethical one. Why should Medicare pay for a SNF stay for this gentleman? Assuming the neurologist can be talked into the 2-night hospital stay (which I have my doubts he/she will...regardless of my ethical problems with that), where is the medical need? Maybe Medicare will pay for 7 days or 21 days but whenever their first "reality check" occurs, the medical need will have to be documented in order for Medicare to pay the full 100 days.
Robin


Mon Jun 11, 2012 12:08 am
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Dumping Your Loved One at the ER
I think I understand your ethical concern, Robin, about the advice the local health care agency is handing out. (I think but could be wrong that the idea is to get into a SNF as soon as possible via ER and a hospital stay and apply for Medicaid immediately.)

Ideally a care plan is thought out carefully, involving the appropriate medical input, and implemented systematically, step by step in the appropriate order. When an emergency -- or something that seems like an emergency to the frazzled, inexperienced caregiver -- pops up, then the question tends to be, "Nevermind what I should do if I had the leisure of planning, what can I do RIGHT NOW to get the results I need?" That must be a very scary place to be.

Beth, I'm worried about you. I sure hope you get through this week OK, and get started on a good plan and support to see you through. I'm glad that you are starting the week with a visit to your own doctor. I know this is a new PCP since your move, and I hope it turns out to be an excellent match for you.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Jun 11, 2012 1:29 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Dumping Your Loved One at the ER
Beth, I originally placed my husband in a SNF for a respite stay so my back could heal. His PCP, not his neurologist, was the one who signed his papers. It is not necessary to go through the ER but you do have to have the money up front.

Several friends took their husbands to the ER in mental health crises and they were held for a 72-hour observation before deciding on proper placement, etc. This is a risky move if the ER personnel aren't familiar with LBD. Make sure they are aware that typical antipsychotic medications like Haldol should be avoided and anything anticholinergic. [There used to be a fact sheet available on the LBDA web site but I don't see it now. Thankfully, I have it on my computer. If you want to PM me your email, I can send it to you as a file.] But it gave them a little breathing room and placement was arranged accordingly. It pays to have already investigated local facilities and picked out one or two. They often have waiting lists.

Hope you get it worked out, Beth. I fully understand your feelings of hopelessness and helplessness. God bless!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jun 11, 2012 9:59 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Dumping Your Loved One at the ER
The webpage on the lbda website used to be easy to remember -- lbda.org/er. In their wisdom, they've changed the URL to:

http://lbda.org/node/473
info for ER physicians on treatment of psychosis


Mon Jun 11, 2012 1:10 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Dumping Your Loved One at the ER
You can also access the LBDA site by just clicking on the above left logo. The one-page fact sheet seems to be no longer there, though.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jun 11, 2012 2:06 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Dumping Your Loved One at the ER
Thinking of you, Beth and hoping for a break for you.

I cannot remember what state you are in, but I just learned today that NC has a paid respite program for family caregivers in many counties. Your local ombudsman would/should know if your state has something similar.

Also, here is my email address if you want to email me. patsnyder137@gmail.com

If you want it, I will send you the lbda fact sheet along with my "Beware of These Meds for LBD Patients" that I made to keep in my purse for any emergency trips to the ER we might have to make.

Hugs,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Wed Jun 13, 2012 9:43 pm
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Joined: Thu May 31, 2012 6:51 pm
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Post Re: Dumping Your Loved One at the ER
Hi Everyone:

Thanks for the response to my post. So here is how my week has gone thus far. Monday was a rough day. My hubby didn't want to take a shower, but wanted to stay in bed. So I let him. I went to see my new PCP by myself and when I came home, I checked on him and noticed that he had a mess in his Depends. So off to the bathroom we went, where he eventually allowed me to shower him. But on his way out of the shower, he didn't have a firm grasp on the grab bar and slipped (thankfully back onto the seat), but his back hit the grab bar. So after dressing him, I took him to the ER where they took x-rays, but found nothing wrong. But as soon as I told them that I could no longer take care of him, they quickly dressed him and shoved us both out the door.....grrrrrrrr.

Tuesday was a good day and we talked about a lot, including his doctor appointment with the neurologist on Wednesday, which he was agreeable about going to.

This morning he woke up accusing me of putting him on a bus where there were many people with sticks who hit him and said that I was doing it, also. I knew right away that he had just woke up from dreaming that, so I asked him more about the dream, and then told him it wasn't real, that I hadn't done what he was accusing me of. Rather than deflate the situation, it escalated into my husband refusing to get up and do his usual morning bathroom break, with him refusing to eat breakfast (which I eventually had to throw out), and finally, with him refusing to go see the neurologist. And yes, it caused both our tempers to flare, and he became combative, with him continually telling me no to my requests to go to the doctor. I even called his daughter and asked her to talk to him and he treated her the same way.

So I finally did what I had been advised to do. I called 911 and asked them to come and get my husband and take him to the hospital. When the paramedics came they were able to convince him to go to the hospital (even though he said no, no, no to them, also). Of course, with the paramedics came two police officers who asked me what was going on and I was able to calmly tell them.

Now my husband is in the geriatric psychiatric ward in the hospital, where they are planning to get his meds stabilized and then get him transferred to a nursing home. Thankfully, the psych tech who came to the emergency room understands LBD and has dealt with it a lot.....so much so that she let me know his behavior is only going to get worse because of this disease.

One alarming side effect of his refusal to eat today, or very much at all lately, as well as his refusal to drink as much as he needs to be drinking, is that he is rapidly dropping weight (he has lost 71 lbs since Jan. 30th, 2012) and he is getting dehydrated very easily (which causes his blood pressure to drop).

And even though he wasn't happy about being left in the hospital tonight, I believe my husband is in the best place for now as I prepare to get him placed into a nursing home.

And now I sit here in tears once again, grieving for the man I fell in love with and married, the man who has written me beautiful poetry, who sang me love songs at karaoke, who I enjoyed having many intellectual conversations with, who is very intelligent and gentle, who has taken care of me throughout our 13 year marriage very well, who supported my educational endeavors and career choices, who always gave me a shoulder to cry on when I needed to do so, who was emotionally available to me and got along with my family, a man who I love a lot.....but that is not the man I see now. I hate this disease and what it has done to him and our marriage!

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Beth


Thu Jun 14, 2012 1:01 am
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