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"Recording her behaviours is a very good idea."

I started yesterday, I turned on my webcam and turned it around and recorded everything I done for her. I also bought two notebooks, one for the info and such the paramedic suggested and the other, Everytime I put her to bed, take her to bathroom, etc etc. I write down the time, which I can pair with the video, if SiL thinks I am exaggerating how often she gets up or requires care.

hell, last night, I got her up at 4:05am, brought her out to the living room, told her I was going back to bed, 4:18am she starts calling my youngest son's name to take her to the bathroom, she goes to the bathroom, then of course she says "I can't go", get her back out into the chair in the living room, my youngest son goes back to his room. 4:26 she starts calling my youngest son's name again, I get up and say "What do you need mom? " she replies "I don't know, Where's Nick?" I said he's sleeping mom, She said " I wanted him to come out to sit". I said "Mom, he trying to sleep, we all are." ... She pauses and says "Ok" , so I went back to bed.

But seriously, I'm glad I got the notebook to note the time, and the video to show that I'm not "dramatic" or exaggerating.
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Get a bottle of melatonin today. It's worth a shot, since there's not much else you can do on a Sunday!
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BarbBrooklyn: "Make an appointment with your primary care doc and tell hef/him what's going on. Meds can help. So can talking to a counselor." I wish some of these PCPs would become more assertive and lay it on the line: "Keep this up and you will become injured and ill. I prescribe that you STOP the caregiving immediately." Put it in writing so she can present this to the H and SIL.

I think DesperateinFL needs more than meds and a counselor. Too often on these boards this is only a bandaid approach. (And so many of these counselors won't give the hardline advice that people on these boards give.)

DesperateinFL needs to do what Dorker did. I realize that will be more difficult, because MIL was moved in and DesperateinFL was forced to take care of her.

Let us know how the conversations on Monday go! We are rooting for you, and I want this MIL out of your day-to-day life for your own physical health and sanity.
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CTTN, I recommended meds and a counselor or therapist because for many of us, that's what it takes to stop being a doormat.

When my children were young (3 under the age of 4 1/2) I thought I had to say yes to my husband and mother in law's every order.

When my youngest was 5 days old, I was told we needed to drive 2 hours to a family party. I took a deep breath and said "No thank you, baby and I are staying home. I'm sure DH and the girls will have a lovely time". ((That was after several years of therapy).

There was a lot of screaming and yelling and "what will people think" (um. That I'm a new mom with an unimmunized baby and 100 people at a party?). Everyone was angry but no one died. I learned that I could survive not being poplular.

A note from my doctor would have been a bandaid. Being assertive and knowing I could advocate for my own needs has been a lifelong skill that I needed to develop.
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Although many on this forum believe medication and therapy are the answer, I do not. You didn't need meds and therapy before your MIL got dumped in your lap so why should you have to inconvenience yourself and put chemicals into your body to deal with someone else's mother? That's insane, in my opinion.

There are plenty of restaurants that would be understanding about why you left Waffle House. Get yourself a new job. And tell your husband to deliver his mother to New Jersey.
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I'm going to take a different approach on the POA issue. If Desperate accepted that obligation, she'd be putting the proverbial noose around her neck. She would be trapped; she'd be the go-to person whenever DH or SIL wanted to complain.

Her sons would be even more irritated that she's agreed to spend more time than she already is. And she'd be assuming a much higher level of responsibility, and trapped in that role, than she already is.

I'm also seeing that she's still justifying and explaining. I know it's hard to move forward after being subordinate and allowing someone else to manipulate her, especially if this has been occurring by her husband as well as her SIL and MIL.

So it does take time to turn the situation around. But continuing to justify, explain and complain isn't going to change the situation. And I fully agree with NYDIL; to attempt to cope with an unwanted situation by compromising her own health, in any way, is adapting, not changing.

I don't challenge anyone who's written with suggestions of meds and therapy; I respect your opinions. I think therapy might be necessary if Desperate is unable to comprehend the depth of her subordination, and therapy should help her now as in the future.

I continue to wonder what her sons think of her and if they'll grow up being bullies themselves if don't see that she's taking steps to change. I've also noticed that she writes much more, including apparent ver batim conversations, about her interactions with MIL than with her own sons. They're in for some rough times if they feel that MIL is more important than they are.

And I'm being blunt because I continue to see justification rather than intent to change.
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I have only to add my agreement that therapy will help you in this predicament & future ones. IMO meds for sleep won't work because MIL won't sleep. Adding meds for depression &/or anxiety may be premature, the first 3 months are adjustments. In your case huge adjustments & that adjustment may end up getting MIL into another living situation or getting someone to come in for the night shift at the VERY least. Ideally letting MIL move in w/POA daughter & she can hire help for herself there. You're not a doormat because you've already heard & acted on advice, I applaud you for that. Many doormats stay in the woe is me with no way out position. So hurray for you & the great sons you've raised.
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I agree, Garden. Her sons seem to have no problem setting healthy boundaries for themselves. Desperate needs to put her children first. And her children should not have to take on the role of caregiving to someone with dementia during this important time in their lives. Children should be allowed to be children. Of course parents should introduce responsibility and discipline; however, caregiving is not the way to do that.
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So much has happened since I last logged in good job desperateinFl on webcams..Nydaughterinlaw thank you its like you spoke my mind our children come first...Exactly children should be allowed to be children they only get their childhood once...the youngest had to get up at 4am to take Grandma to bathroom...how unfair this is when his father should be home taking his mother to the bathroom ...DesperateinFL hope you are taking care of yourself in all this.
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How are you doing DesperateinFL hope things are working out for you?
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Desperate; How are you doing?
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DesperateinFL: We're all pulling for you. {hug}
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*****I had to make a new account here, because even with a password reminder and reset, it will NOT let me log in. /shrug *****


Hello All!
I know it's been awhile, I got a bad taste in my mouth from a comment that was given, and decided that I needed to step away for a bit.

an update though.....

My MiL was admitted to the hospital on Nov 30th, (My son's birthday as it were) and stayed there until Dec 4th. During that time, she was diagnosed with COPD/Emphysema (she's a life long smoker who will NOT quit) UTI, and Dementia.

She gave the nurses a pretty good run for their money, she just would NOT stay in bed, (they put an alarm on her bed) , She would stand up and just pee in the floor.

The hospital actually said she needed to go to Skilled Nursing Rehab, but after a day's search unfortunately there were no beds, and she was sent home with instructions to get PT/OT and home health. I have been in touch with many agencies, and things are starting to come together, but with the holidays, I was told that it would be a slow process.

She visited her new PCP on Friday, who prescribed her a nebulizer with albuterol (because although she NEEDS oxygen, he said he could not in good conscience prescribe it to someone who refuses to stop smoking, then he made a Kaboom sound) , prednisone, zoloft, and told her to take an otc sleep aid at night. His thought was, if she can get rest with a sleep aid more than she couldn't then she should keep taking the otc sleep aid until it stops working more than it's suppose to, he said he dislikes giving sleep aids to those with dementia, but he says if/when the otc sleep aids stop providing at least some rest, he will revisit it then. He also was able to get some things in motion on her life choices. He said with her stage of COPD, that "if" she was to have a respiratory crisis and they had to intubate her, with the conditions of her lungs, she basically would never come off a ventilator. Here in Florida they have different rules and laws, so she filled out her 5 wishes, and got her yellow DNR from the State of Florida.

We have a CNA that will come by the house after the 1st of the year on Weds, Fri, Sat from 9 am to 1pm so that I can have some respite hours to myself.

I was finally able to get my bedroom back, we got the sofa couch, I made it up, moved all her stuff into the living room, moved all my stuff into my bedroom, and shut the door to my room, and I basically stay there, (out of sight, out of mind) My husband finally came home when I called him and said that I needed him to come home because I was taking my youngest son and moving back to Kansas. So, he came home, saw how his mother REALLY acted, and called his sister and told her that if she wanted the responsibility to come down and take it, otherwise, STFU and he was going to do what's best for his mother AND his family. So at least he's on my side now.

She was having all kinds of fits on Friday because she didn't want to go to the Dr's and such, and I told her, that she was brought to the house to get the care she NEEDED, not the care she wanted, if all she wanted was to move in and expect to be waited on hand and foot, then she was mistaken as to why she was there. She pouted for awhile but eventually I was able to get her dressed and to the Dr's on time.


So although, the situation is still ongoing, it's not as bad as it was before. I got a space of my own now, she has a space of her own. We still have battles about how she will summon my oldest son at night to get silly things like put her robe on or help her put her slippers on. I will not get up at night to do those mundane things, because I have been firm that after 9pm, the house is sleeping, she needs to manage those things on her own. (because she totally can) so she plays on my oldest son's good nature, but he's making great strides in setting boundaries of his own. My youngest son just stays out of her way, but my husband told her, that if she didn't lay off the youngest son, that he would have no choice but to find other arrangements because as he put it, "My family should NOT feel uncomfortable in their own house".

So at least things are going in a semi right direction.

Thanks for remaining concerned. I appreciate all the thoughts and prayers.
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Desperate, it's SO good to hear from you and so good to hear that dh is on your side now! ((((((((hugs))))))))
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Thanks for the update. I had to catch up reading to the current. I kind of cringed on the previous page. Sometimes, applying advices to current ongoing events is not exactly as easy as they make it sound....  All of you are improving and adapting and setting up new boundaries with the MIL/grandmother. That’s great... I especially liked the part on how you finally got your husband to come home.... oh my gosh! I think this is the first time I’ve ever read a husband being so totally behind his family! (Usually they make all kinds of excuses despite seeing the true situation.) What he said to his sister and to his mother. You have a good husband.... Yes, take it one day at a time.
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I was so gripped by your story and your suffering, DesperateinFL. Good for you in making a stand. I'm so relieved that you and your family are on a better track!
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Yeah, it was pretty touch and go for a few days there, I REALLY thought my husband (of 20 something years) and I would split up over the the way his mother took over my house. But he was willing to come see for himself, for that I am grateful, some men may not have take the ultimatum the way he did.
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Another update.....

My MiL's Home Care Nurse visited this morning, and was concerned that my MiL hadn't did a complete PT in 3 weeks. The reason... She has fallen within 24 hours of some of her PT sessions and the PT will not do a complete PT session on a client who has recently fell. (It is some sort of guideline or something)


As fate would have it, MiL fell AGAIN in the bathroom last night while I was making supper. The blessing was she fell squarely on the trash can by the toilet so when I arrived she was sitting up right on the trash can instead of the floor. I told the nurse the same thing I told my husband last night, That we need to re-evaluate the whole bathroom scenario, her last 7 or 8 falls have occurred while she was in the bathroom. (Because she's old fashioned and has SEVERE modesty issues)
The nurse completely agreed and said that she would make some notes and recommendations to her PCP, along with our request to evaluate for Hospice. Her exact words were. "It would be a shame if she died from falling in a bathroom and breaking her neck instead of peacefully in her own bed".

I called her PCP this morning after her nurse left and told the receptionist we would like to discuss when we should move from curative care to comfort care at her next appt. The receptionist said she would send the message on, and that she would either call back or the Dr himself would call back sometime today. I expressed that it wasn't pressing, like an emergency, but we've never done this before and just wanted to get a guideline on when we should stop pursing curative care and consider comfort care.

My husband is a TOTAL momma's boy, who will drag her back and forth to the bathroom, to the bed, to chair, give her MORE cigarettes, because he's an idiot, but he tells me that's a "No Win argument"

{Insert Rant here}
See here's my thing, I know she raised him, I know she's his momma, I don't want to diminish that, but I have spent more years with him at this point than she did. OH and believe you me, I'll be here YEARS after she's passed away, so I remind him all the time, to remember where you came from, but don't make decisions that will impact your FUTURE relationships for a relationship that is obviously in it's last days.

Did that seem harsh? ... Maybe it's harsh... Maybe I'm bitter... The only thing I know for SURE of these days is that I am FRUSTRATED.

{/End Rant}


The thing is... My husband, I fear is not being objective, and thinks that by "man'n" up and doing the heavy lifting that he's keeping her comfortable.....


I'm sorry, that's just easing HIS conscience, not helping HER quality of life. And even though I think my MiL is selfish,I think that SHE thinks she's living in a hotel with concierge service, and is a general PITA to my household. I don't want her to suffer, or not be well taken care of. I think it's a fundamental difference between my husband and I, to know when to "cry uncle".


I hope that soon, My family and I will have a general guideline to know what to do, and when to do it.


As always, I am thankful for any advice and suggestions.

Thanks for the time, patience, and tolerance with my never-ending family dramas. (The Kardashians have NOTHING on us)
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Desperate, it's hard for your husband to realize that "manning up" doesn't mean compromising his own health. Sure, he wants to help her, but if it compromises and jeopardizes his own health, he's not helping anyone.

I think the transition from tough men to tough and compassionate is still a challenge for some, both men and women. It's hard to realize that hiring help and making adaptive changes isn't a compromise; it's actually an improvement.

He can provide good care by finding alternative solutions, starting with the bathroom.
When my mother stayed with me over the winter almost 20 years ago, I had grab bars installed in the tub and shower area as well as on the exterior areas near doors.

Now I'm so glad I did as I use them myself. Even though my falls are usually klutzy ones, such as tripping over the lawnmower when I accidentally leave it in my path, I still need to be cognizant of especially dangerous areas such as stairs.

So, perhaps you can convince your husband that upgrading the bathroom with safety devices will provide you and him with support as well, long before you need it.

And he can use that excuse with his mother - tell her that they're for YOU and don't even mention her.

The PTist or OTist can offer suggestions on how to place the bars, such as diagonally in the tub area if she sits down on a bench that extends over and outside the tub, plus vertical and horizontal bars along the shower area. I'd put them along hallways and doors as well.

And remember that she can keep clean through the use of dry shampoo and the liquid soap products that don't need to be rinsed off. For my father's last months, those were all that were used, and he always looked and smelled clean.

If you need more suggestions, I'm sure others will offer good ones, as many of us have been through this.
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Desperate: Though there is nothing funny about your predicament, I had to chuckle at MIL being “old-fashioned.” Selectively old-fashioned, right?

MIL wants to go back the era of fanatical modesty, eh? The era when old folks considered it their birthright to expire by degrees in an adult child’s home? And run the woman of the house ragged in the process??

Game on, MIL. That’s also the era of: Outhouse. Coal furnace. No central air conditioning. No polio vaccine. No shingles vaccine. No smoke detectors. No more than three TV stations (IF you were wealthy enough to have a TV).

Jeez, who wouldn’t pine for that? [eye roll]

And Waffle House or not, DIL would be unable to tend to MIL’s every moan. Cuz DIL would be quite busy maintaining the veggie garden, fighting with the wringer washer, hanging a household’s worth of laundry on a clothesline and scrubbing dishes by hand.
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@GardenArtist
"So, perhaps you can convince your husband that upgrading the bathroom with safety devices will provide you and him with support as well, long before you need it."

We installed safety bars (3 of them ) in the bathroom, installed a raised toilet seat, and a slide over shower chair. We have sooo much stuff in the bathroom for her, that my boys can't even use the bathroom comfortably, without having to move toilet seats or fold up slide shower chairs to take their own showers. The kick in the head is, when my children do decide to use that bathroom for their needs. As SOON as she see's that the door is closed more than 3-4 minutes, She'll start hitting buttons saying she needs to go to the bathroom, so much soooo, that my oldest son uses the bathroom in the Master bathroom for #2's, He'll make comments he can't even take a shite in peace.

The point is, even with all the safety equipment she is STILL falling in the bathroom, because it's the ONLY place she will NOT allow someone in.

My husband woke me up at 11 pm last night and asked me if I could help her change out of her sweat shirt into a Tshirt because she was hot. Now I KNOW they are ways to change someone's shirt WITHOUT exposing them, but she wouldn't let my husband do those things, she needed ME.

SERIOUSLY?


The Dr himself the other night called and spoke with my husband, and said that he would send a hospice DR sometime this next week to evaluate whether comfort care might help her quality of life, and the family's needs. I told the DR, that my research shows that most Hospice will send Nurses and etc for evaluations, The DR explained that he's a doctor that teaches other people how to become DR's here in the Orlando area, and he's ALWAYS hesitant of nurses who think they are DR's. ( I have no idea what that has to do with the price of tea in China, but whatev's) He apparently feels more comfortable with a DR giving her a once over in the home, so .... So be it....



We'll see how things go.



In other news..... So far this morning, I have been "Caroline" "Charlotte" and "Christy" ....


She might actually know my name by noon.
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((((((Hugs ())))))(((
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Desperate, I did encounter a speech therapist who thought she could act as a doctor. She told us Dad would either have to have a PEG tube or go on hospice. She refused to even consider dysphagia exercises or the pureed food regimen.

She upset me, and she upset Dad, when she not too delicately explained what hospice was. I'll never forget the look on his face. We had discussed death, but no in the manner she presented her choice of options.

When I mentioned her assessment to one of the regular doctors, he became irritated and said she was WAY overstepping her boundaries and that it was not within the purview of a speech therapist to diagnose the need for hospice.

That whole home health care company was bad, other than 2 outstanding RNs.

As to MIL, it seems she really does have a manipulative streak!

FF used some different type of clothing for her father, and I've found that my father preferred snap shirts b/c lifting overhead shirts or using purchased shirts with buttonholes that weren't properly slitted was hard for him to manage. The good old "dot snaps" were the best.

I suspect though that MIL would find difficulty in whatever clothing you bought for her; it's the issue of control, not the accessibility.

If she ever needs facility care, the modesty will be challenged very quickly.
Hang in there!
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{Update}

My husband spoke with his SiL yesterday for her birthday, and asked when would she be able to share the load with MiL. SiL said that she would watch MiL this summer, BUT..... It would have to be after the 3rd week of June, We would have to fly her up to NJ. (which in and of itself is a concern ) and have to make sure we set up all the nurse's that would be needed and stuff for her while she's in NJ.


Let me tackle these things...

1) Why is up to US to make arrangements, to travel, nursing, etc. etc. Does this woman NOT understand what Hospice and End Stage COPD is?

2) Who in their RIGHT mind would want someone with End Stage COPD, Vascular Dementia, AND CHF to FLY in a PRESSURIZED plane? The truth is, I don't think they would LET my MiL on a Plane and IF they Did, I would totally expect them to escort her off,( Think crazy Youtube style videos because Airlines don't put up with misbehavior anymore they just take you off the plane for the "safety" of others.) because you have to actually sit down on a plane, you can't be getting up every 3 mins to go to the bathroom, and such.


The time for SiL to spend with her Mom, was MONTHS ago, before it got this bad, but she couldn't be bothered.

P.T. Barnum has NOTHING on my 3 ring circus.... This is bordering on ludicrous at this point. I have a Hubby who's in denial and a Momma's boy, I have a SiL who is only interested in helping ONLY IF it can be worked into her schedule at OUR expense because she's still trying to save that stupid ass inheritance. And in the middle of this circus sits the MiL who is far more manipulative than anyone else BESIDES me wants to admit.


The only thing I told my hubby, (because I knew it would be an argument ) was....

"This is not going to go the way you think it's gonna go"..... and I walked away.
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Well. It's an option. If your DH ever decides he wants to finish his mother off, taking her on a plane several states away and leaving her in an unfamiliar environment with a whole new team of health care professionals and your SIL might be one of the more certain ways to make it happen.

Forget SIL as a respite option. Except to point out to her that if she wants to see her mother at all she shouldn't let the grass grow. It's up to her.

I can't like that doctor. And it isn't because I haven't met my fair share of nurses who were encouraged to act well over their training boundaries - one "Specialist Nurse Practitioner" in particular was spectacularly dangerous - it's because if he has that opinion then he should be working to improve interdisciplinary communication, he shouldn't be dissing the whole lot of them in that patronising way to a patient's family member. I have met plenty of experienced allied professionals and mental health nurses and district nurses who were more than capable of producing a perfectly sound needs assessment. And, besides, if hospice is extending this role to senior nursing staff then I don't think it's nurses' getting above themselves that's really the issue, is it? Snotty bugger. I hope his students aren't following him too closely.

Still, if MIL is getting an experienced hospice doctor anyway his attitude needn't trouble us.
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I hope the Hospice evaluation goes well and that they recommend comfort care. That might be the point at which you move her to a facility, yes?  Does DH want to be the one administering morphine?  Does he want to watch her die without professionals at hand?

DH is going to have to explain to idiot SIL that folks on Hospice are not allowed to fly
( that's probably a bald faced lie, but whatever works...) And that it really behooves her to come see mom soon. Because no lifesaving treatments will be forthcoming. 

( Maybe SIL will decide to rescue mom!).
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Perhaps the truck driver in the family (ahem) can drive Big Mama to NJ.
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{Update}

We were finally able to get MiL settled into the In Home Hospice, a Lady came out and "registered" her (after the Dr finally signed off) and told me that things would get better and more manageable very quickly. This was Monday. She got the hospice DR to called in a prescription for a 4 day supply of 0.5 Ativan and 325mg Acetaminophen to hold us over until FedEx delivered her meds and a comfort pack. Welp we went to Walgreens and they wouldn't fill the prescription, it was on "hold" until the pharmacist could speak to the DR. I called the VITAS number like I was told to do, and told them about the problem. They would handle it. I called every day until Wed, when her meds finally arrived via FedEx.

On Tues, they delivered her a hospital bed, and her weekly nurse came by to do vitals and order something for constipation. (Which arrived in the FedEx package on Wed, if it was added on to the previous already ordered meds, why did it come in the same package?) The nurse also set up a CNA to come by Monday and Thursday for bathing. That she would be back on Friday because that will be her normal day (BTW she never showed up) and if I needed anything to call.

Thursday, VITAS called and said that something was not entered right and that the earliest a CNA could come out for bathing was Tues.
When I expressed concern that this whole process was suppose to make things BETTER, not have to chase down meds at a Walgreens for days only for them to arrive from FedEx 2 days later, that they were going to take over the bathing and everything was suppose to move very quickly and we would notice a difference fairly quickly, but I'm feeling as if something feel through the cracks and someone, somewhere is not fessing up. The lady then said, Yes, there was a delay in the admissions process for my MiL, because some of the information was not saved or backed up, and they had 1 admissions lady for our county and averages about 7 admissions a day. I told the lady, I understand mishaps, but I don't like excuses, I would rather have the truth, instead of hammering excuses on why things are not going the way they said they were gonna go. The lady (case manager) agreed, apologized, and said in the future she would keep that in mind.

So, This is where I need help......

The meds.....
On Wednesday Night, we gave MiL one 0.5 Ativan after supper because we were told to try and give it to her after a meal. (It is prescribed 1 every 6 hours as needed for anxiety) , two 325mg Acetaminophen for mild pain. (It is prescribed 2 pills as needed twice daily for pain) , one 150mg Trazodone (It is prescribed Take 1 tablet by mouth at night for Insomnia)
Wednesday night, she got real loopy, stoned, very fast and acted like a drunk person for about an hour (think, trying to get up, but her legs wouldn't work and we had to pick her up) before she went to bed and SLEPT straight through for almost 7 hours. We had the first good nights sleep that night in MONTHS!

Thursday, MiL was up most of the day, but we noticed she didn't ask to go to the bathroom like a million times. Gave her, her medicine after supper, She was up and down, acting like a drunk until around 1:30am. Laid down, was hitting buttons again at 3am. Laid down at around 5am, and slept most of the day.

Friday, was very much like Wednesday. She slept through the night after a little agitation after pills.

Saturday, she fell during the day (and we totally forgot to call that 1-800 # we were suppose to, I'll just let the lady know on Monday) in the bathroom and hit her elbow. (BREAKTHROUGH! My hubby FINALLY agrees that the bathroom is GOING TO KILL HER) so we have to find liners for a bedside commode and she's not going to have an option but to use it. The bathroom is NOT SAFE. But her medicine last night, was a mix... She was aggitated/restless until around 11pm. But then went to sleep and I didn't hear anything out of her until about an hour ago.


So the question is.... Do these medicines take awhile to even out? Are the swings expected? Which pill is making her act like a drunk?
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Call the hospice line and speak to an RN.

Is the acetominiphin combined with another med, or is it straight acetominiphin?

Starting 3 drugs at once makes it impossible to tell whether she's having a side effect from one, or if it's an interaction.

My suggestion, see if hospice agrees, would be to start one med at a time. Good luck, and thanks so much for the update!
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@barbbrooklyn

The only "new" medicine is the Ativan 0.5mg. She was taking 2 pill Acetaminophen OTC for aches and pains before. ( I just went and checked the bottle, it's just 325mg Acetaminophen, nothing else added with the prescribed medicine) She was also already on 150mg of Trazodone before, except we gave her three 50mg tablets at night instead of the one 150mg tablet that came through the hospice pharmacy.

She was terminally restless and only sleeping maybe 2 hours tops at a time with just Tylenol and Trazodone, so the new addition is the Ativan 0.5mg every 6hrs as needed for anxiety.

I just don't know if an anxiety med can make someone loopy, stoned, faux-drunk.
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