My mother in law, recently had to be brought to my house, because she kept falling in her house, and we were told she could no longer stay home alone. I went to Miami, and brought her back to my house in Orlando. My husband is an OTR Truck Driver, only home 4 days a month. Her daughter lives in NJ, owns her own business, etc. etc. So, it was "decided" that since I was only a Waffle House waitress, that I was to quit my job and take care of her. I have two teenage boys, and a 3 bedroom house. My MiL, totally took over my room, essentially making me bed-less, I have no privacy or a place to call "mine" anymore. I like to sit at my computer watch Netflix, do some online Karaoke, etc. etc. But that is no longer an option because, she refuses to stay in a room by herself. If I listen to music, or put a pair of headphones on to watch Netflix on my tablet. She will, and I can set my clock by it, within 10 minutes have to go to the bathroom, want to go lay down, etc.
At night it's the worst, I will put her to bed, and every couple of hours, she awakes EXTREMELY confused, wanting to balance a checkbook at 1 am, wanting to watch golden girls at 3 am, and not remember any of it in the morning. Every once in awhile one of my boys will sit with her for an hour or so, so that I can get a quick nap. My youngest son even commented this morning. "Mom, why are your eyes so dark? Did you hit yourself?"
I have no idea how to care for her, no idea how to adapt to my sudden loss of "freedom", no idea how to manage my emotions. I don't want to develop resentment towards my MiL, but I already see the beginnings of those feelings starting to develop which makes me feel like a horrible person.
Any ideas, support, or online resources would be greatly appreciated.
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.
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 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 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.
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.
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.
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.
Have you read Hillbilly Elegy? You'll find it eye opening. It's at your public library.
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?"
Keep us in the loop!
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.
When is the Hospice nurse due to examine her next? I'd ask about whether they think she's in pain then as well.
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?
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.
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.
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.
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.
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!
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?
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!).
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.
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.
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!