How to adapt to a new household dynamic?

FL, some folks (I've learned here) have a contrary reaction to Ativan; it makes them MORE and not less agitated.

You need to report this to the Hospice line asap so that they can get you a different benzo to use.

I'm so glad that it was only one new med that was added! It makes me have faith in your hospice provider, that they are watching out for stuff like that.

Amen to the nutty reactions to Ativan. Rare, but it happens.

Another caveat: If MIL’s care team adds Ambien to the mix as a sleep aid, be vigilant. Ambien works 100% opposite on some folks — especially elderly and/or on other Rx. Hallucinating, agitation, wandering, sleep-walking (actually, sleep-doing) and/or raging insomnia.

If the meds are not working as intended then try another med, talk to doctor. This is quite common with elderly dementia patients. Ativan also had the exact opposite effect as is intended on my mom.

How is she doing? Have you stopped the Ativan? I am thinking maybe she needs time to adjust to it as it’s so new to her.
I’m sure you & her doctor can come up with another alternative.
I was happy to hear you all got 7 hrs sleep in a row!
Glad things are going your way.

Thanks @Shane1124!

We get good sleep about every other day now, which is BETTER than it was before, but still not ideal. Last night, she was up and down til about 2am. ( I have a teenager that has to be on a school bus at 6am, so I have to get up at 5am) So I am functioning on 3hrs sleep at the moment.
My husband and I are calling the VITAS line today, we are going to write down the things we need and questions before we call.
For example, we need a table she can eat/drink from so we don't have to physically get her out of bed at 11pm because she wants some water. We need a bedside commode for daytime hours. We need briefs for nighttime hours. We need a review of her medicine and meds that will produce 6-7hrs of sleep every night.

The more I read/research, I am starting to believe that maybe she is experiencing pain and she can't express it or realize it. I ask her all the time, "Do you hurt Mom?" and she's always like "Nope", Even after a fall and such, she will be like "Nope" and that makes no sense to me. Hell, I'd be pretty sore after a fall. I hear little umphs, and moans when she sits up, or when she starts coughing, so I don't know if she's putting on a brave face, or she just doesn't realize she's in mild/moderate pain.

These are things I want to ask the Hospice line today when I call.

Can anyone think of any other questions that are important, that I just might not be thinking of?

My mom, with vascular dementia, always denied pain to staff. But she would writhe in pain when we showed up. I had the NH put her on scheduled pain meds as opposed to "as needed".

When is the Hospice nurse due to examine her next? I'd ask about whether they think she's in pain then as well.

@BarbBrooklyn

A relief nurse came by yesterday ( Her regular nurse was suppose to come by Friday but no call/no show) We expressed our questions and concerns. She ordered an over bed table, and a bedside commode. Those will arrive today.

We explained the symptoms of her meds, and she ordered a new insomnia med to replace the Trazodone, it will arrive today via FedEx she says. It was something that starts with a R. I'll update when it arrives. I mentioned pain, and I tried to explain what I notice, and my hubby was like "Why don't you let Mom answer?" ... "Mom, do you hurt?" .... Which of course she replies. "Nope". So I guess I'll have to address that at another time.

I noticed yesterday that my hubby approaches these providers who come to the house as people he needs to impress, (although I'm not sure that is the right word). He wants to give GOOD reports, minimize episodes of discomfort and restlessness that MiL exhibits. He treats it like she's gonna get ALL BETTER. But I also noticed he does that with his phone calls to his Sis in NJ. He'll be like "We're doing good, naw, everythings fine" Then as soon as he hangs up the phone and I ask why he sugar coats everything, he responds "Why get her all wound up, What's she gonna do up there in NJ? All she can do is worry!".

So... I'll continue to work on my husband to see if I can get him to go sugar-coat-free in the future with the providers that come by.

And pray that the new pill that starts with an R, comes and helps with the up and downs all night.

Restoril?

Glad to hear things are moving in the right direction. Good thinking that mom maybe cannot express that she is in pain. I believe you said she takes acetaminophen too; maybe that will be re-evaluated as well.
Keep us in the loop!

Sorry to hear about hubby’s sugar-coating. I understand his motivation. But I moreso understand how frustrating it is to the realist in the house (you).

Sounds like DH wants to be given an "A" for effort rather than access help. Probably long standing family tradition of " no thank you, you don't need to be up in our business".

@barbbrooklyn

WoW! You summed up my husband 100%, That's EXACTLY how he is... He doesn't like all the providers that come around, He will say "Why do all these people need to come by?" He is always asking me too, "Are these Gov't People coming by? Why do they need to ask all these questions?"

It's a certain mindset, Desperate. Very common in certain communities.

Have you read Hillbilly Elegy? You'll find it eye opening. It's at your public library.

I think "sugarcoating" is sometimes reflective of a person's discomfort in admitting that life isn't under control, and perhaps for some men, an admission of weakness and that lack of control over his area of life.

I'll do it too, sometimes, because I just don't feel like going into detail with people who have no business being concerned, and wouldn't help anyway.

{Update}

We got the meds somewhat sorted (she's doing well, sleeping through the night with 15mg restoril and 1mg ativan), but I think it's a little too little too late. Since yesterday, she's been pretty lethargic, she moans when she bends her legs, she keeps saying she's tired, even when lying in bed. She called my husband over yesterday and told him. "I think I'm going to die tonight". Which she didn't but I keep asking her if she's uncomfortable because she moans, and she says "yeah" and I want to call the hospice # to see, if someone can come assess her and maybe get her comfortable, but my husband is like "NO! I don't want a bunch of people coming around, we JUST got them out" (What he means by that is, Vitas came every day while we were looking for the right balance of meds, once achieved they won't come around every day.)

If things are still wonky tomorrow, I'm calling whether he wants me to or not, because HIS desires are of less consequence to me than HER comfort. I've said from the start, she's a complete PITA, but that does not mean I want her uncomfortable or not well taken care of.

Any tips, prayers, or advice will be greatly appreciated.

Poor MIL!

Yes, ask the hospice folks about positioning her and how often she needs to be repositioned to prevent bedsores. Does she have an alternating pressure mattress?

Has anyone done a check of her skin integrity?

She has copd, yes? She's going to find breathing increasingly difficult and lack of oxygen is making her lethargic and tired even without exertion. Is she on oxygen?

Do you have a pulse oximeter to check her oxygen saturation?

Tell dear hubs it's not about him. It's about his dying mother being comfortable.

Alternatively, see if hospice has a facility or can recommend a private pay nursing home where she can get professional care along with comfort care from hospice. The nurses and aides at my mom's NH home were true angels as she was dying.

She's bloody lucky to have you as a DIL, that's all I can say. No tips to add, but lots of pats on the back - you're getting this exactly right.

@BarbBrooklyn

I have a Pulse OX meter which she's hovering between 92% to 96%. She does NOT have oxygen, but that is MY decision, She continues to smoke, and I REFUSE to have O2 in the house as long as she continues (Which is another pet peeve of mine, she can't even light her own cigarettes anymore, so hubby will light it for her and hand her the cig, but my children are in this house, so therefore NO O2 in this house, because it's not IF, it's WHEN she explodes the house) She has a nebulizer with some Albuterol that I give to her when her Pulse Ox falls below 93% as directed by the Hospice Dr.

She has the mattress that they delivered with the hospital bed so I'm not sure if it's alternating pressure or not, but I will ask the Hospice lady when she comes today.

Her bath aide comes today as well, I will ask her to help me move her so we can check for skin integrity.

She's still moaning a little, but she is VERY stiff, When I stand her to move from the bed to the bedside commode, she moves her feet like an inch at a time, and I can't physically pick her up, so I basically wind up begging her to move her feet, to keep coming, to keep moving. I have had her in pull ups for a week now, and she just will NOT go in them. We don't take her out of bed after her evening meds at 8pm, We have told her if she has to go, then use the pull-ups because it's disruptive to the house to have the emergency button go off at 2am. And she "holds it" until morning. (But she's also sleeping the night because of the Restoril now) She will NOT go in the pull-ups.

My husband started his new job today, so it's just me and my oldest son today, so if things get too physical I can call on him for the heavy lifting. (Which I hate doing, but with my sciatica and left hip damage, I just can't do all the pull/push, Hell even, just standing her up requires my body to brace in a way that after a few moments starts to ache, I know that's hard to explain but I have to brace/tense my body to try and support her body and it KILLS my body, so when she's moving an inch at a time, it's TORTURE)


The hospice nurse said Friday she would call or come by on Monday, so If I haven't heard anything by noon, I'll call and see if they can assess her moaning and let them know the new stuff, but in fairness they did tell us the Ativan could cause some lathargy/drowsiness. So it could just be a Med side-effect. I dunno.

{Update}

I know it's been awhile since an update but some much happened so fast.

Mom had a breakdown, she started moaning and screaming, so the Hospice nurse decided to send her to the InPatient Hospice Unit here in Orlando, because they thought the end was pretty near.

SiL finally flew down from NJ to spend a few days with her while at the InPatient Hospice center, unfortunately she stabilized and no longer qualified for the InPatient Hospice center, so we transferred her to a Skilled Nursing facility about 30 miles away and continued with Hospice, That was a couple of weeks ago.

We got a call last night from a nurse who said that Mom had a fever of 100 and that they were gonna put her into crisis care, we said that we would be by sometime today to check on her.

Mom passed away at 5:30 this morning. She is finally at peace. And I know it's sounds bad, but I'm glad her suffering is over. She had zero quality of life the last two weeks.

I want to Thank EVERY ONE who shared on this journey with me, it had highs, some super low lows, and every thing in between. But I learned I'm stronger than I thought.

Thanks again to everyone. I appreciate Each and Every Single One of Ya'll.

I am so sorry for your family's loss. My condolences to you, and also thanks to you for candidly sharing your story. I'm sure it has been and will be helpful to many others going through similar situations.

You have been AMAZING.

It can only be humane to be relieved on your MIL's behalf, don't you think? It wasn't a question of what you or anyone else wanted, it was a question of what the poor lady was having to go through. And now, no more suffering or fear or pain. May she rest in peace.

Wishing comfort to you all: husband, boys and especially you.

I offer my condolences as well, not just for your loss, but for all the challenges your family faced along the way. The last several months have really been "rocky roads" for you and family. Yet you persevered, stood up to the challenges, and found ways to "soldier on".

I want to also thank you for demonstrating that compassionate care and familial changes can work when someone is put into a situation of immense challenges, absent sibling, and lack of cooperation.

Your progress has demonstrated that it can be done, it can be managed, and done with self respect and compassion. It's inspiring to read, and I believe inspiring for folks here who might be facing a similar dilemma.

I thank you for allowing us to share that journey, and extend condolences to you and your family.