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To give some background, my mom had a stroke 6 years ago, I've been her caretaker (along with some help of my dad.) Left side paralyzed, totally wheelchair bound, needs help with just about everything.


Yesterday she woke up acting not herself, she was very lethargic, acting confused etc. Doing weird things like reaching to the ground for a cup that wasn't there that she insisted was. She kept wanting to go to bed, so I figured maybe she was loopy from her meds the night before (including a normal dose of nyquil.)


This morning she woke up hollering for help to get up which my dad took care of, and he instantly noticed (like I did the day before) something is off. She's slurring, talking nonsense, and calling out for a family member she knows for a fact (before this all happened) lives in Kansas (were in California) She can't seem to stand up for some reason (for transfers, normally she stands and we just guide her and provide extra support) whenever we tried we could feel it was like trying to lift her deadweight (she's a bigger woman) she wasn't helping us at all even though she insisted she was.


Well, we finally manage to lift her dead weight together and down she goes, we had to call paramedics and told them something happened to her the past 24 hours, they administered some test and said because she passed and refuses hospital treatment they couldn't take her.


So now I'm stuck with my mom in bed, literally no way to get her out as she can't seem to stand and is very disoriented/lack of balance.


Some other symptoms I noticed from yesterday and still occurring (even worse) today:


-She's forgotten how to use the phone. My room is in the opposite side of the house so she always (about 50 times a day) uses it to call/page my cellphone in my room to alert me when needing something. Instead she's now been hollering to get my attention, I checked her phone to see if she tried to call me before yelling and as I suspected, the phone is off the hook/on call, only she seemed to have dialed a bunch of random digits and hit call. And instead of trying it correct it (like she normally would but can't seem to now) she just tossed it and started shouting for me instead.


-She doesn't know how to use the remote, which she's a master at as most of her time is spent watching TV. She's very particular about what she likes to watch, and yesterday I caught her sitting in her wheelchair watching a Spanish infomercial (she doesn't speak Spanish) something she would never watch. It seemed like whatever was on TV would capture her attention as opposed to being her very picky self and only watching the stuff she DVRs.


-She didn't eat/had no interest in eating, which is very very unlike her. She usually eats 3 meals or more a day and snacks in between. It's like her favorite thing to do. She still hasn't eaten.


So what do I do now? This is very unlike her, she's never had any kind of episode or anything like this. Aside from her physical limitations she's very coherent, even pays her own bills and stuff, and uses the computer flawlessly. Now it's like she's regressed to the state she was in right after she had her first stroke. I honestly believe she had another stroke based on her slurring (which she hasnt done since she had her first stroke 6 yrs ago), imbalanced to the point she could barely sit up straight in the bed to try and get up or even stand, which she had absolutely no problem doing pre-24 hours ago. It's like deja vu from the morning she had her first stroke. She won't willingly go to Dr and even if she did I have no way to get her there because we can't even lift her out of bed, much less get her out into the car.


I don't know what I'm supposed to do, no way to get her up to feed her, go to the bathroom, etc. And if she goes in her bed she's too big for us to move/lift/roll her to change her pads.


Seriously I'm so stressed and worried I can't stop crying because I have no idea what to do.

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UTI's are known to cause some pretty severe symptoms in the elderly, it has to be a relief to know she is being checked out and that it was not anything more serious.
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ExtremelyTired Dec 2018
It is, Apparently the definitive diagnosis as of now is she had gotten e.coli somehow and bacteremia/infection in the blood stream, and that's what had been causing her to act so out of character/delusional.

She still a bit of the confusion, as she had the nurse call me and she (mom) talked to me on the hospital phone and was very irritated, said I needed to come home (I was at home when she called) and help her get out of bed.
Still lack of appetite, too. Her nurse is fortunately very nice and said she's tried everything and even tried enticing her with a chocolate shake with protein in it (since I told her she likes sweets/junk food) and her response was a "maybe" when normally mom would be all over the idea of a shake.
Hoping that's just because she's only been on the antibiotics for about two days and usually infections (from my experience anyways) can take a week or two to clear.

And as of right now, her strength hasn't really returned. I don't really like the doctor there, as I was with her tonight and he came in saying she'll be all better once the infection is clear (which it still isn't, assuming he was going to try to send her home with a prescription and let her ride it out here) and offered her/me the option to go home tonight/morning. I almost choked on my spit in fear/shock, no way she is ready to come back yet. Fortunately, her nurse stepped in and said "No, she can't go home. She still doesn't have the strength to stand and her appetite is still very poor."

Which he then suggested we send her to an inpatient rehab center for a few weeks to help with the strength issue, which I am all for (it would definitely give me a much needed rest/vacation and her not being able to stand is not an option before she can come home, we cannot lift/transfer her otherwise) but unfortunately it's upsetting her. When she heard the idea her first words were "Isn't it almost Christmas? Am I not going to be home and miss Christmas with the family?" I swear I almost broke down crying right there and had to lie and say "I don't know, probably not, we'll see how things go." Which I know for almost certain she probably is. Of course I'm going to be there and try to get as many family members as I can come Christmas, but I know just the idea of being in a hospital/facility is not going to sit well with her at all.

I'm really annoyed with the doctor for putting the idea of going home immediately in her head, which she jumped at the idea, before following up with her/the nurse on her status and knowing if she's really able to go home yet. Now it's going to seem like the only reason she doesn't get to go home, for Christmas of all holidays, is because we don't want her there/are refusing to take her or something.
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As of now all they know for sure is she apparently had a bad UTI and she's on antibiotics. One of the tests they did came back negative for a stroke but they're still planning some more tests.

Her blood pressure was acting up so they're going to be looking at her cardiovascular system to make sure everything is OK there.

The only explanation they could give for her acting the way she has is maybe the infection from the UTI was messing with her brain.

She still seems pretty out it, but a lot calmer. When visiting her she's very quiet (again, unlike her) and she keeps falling in and out of sleep. Still no appetite. Last time she was hospitalized a few years ago for something wrong with her hip (when she was her normal self) she was always wanting me to bring her stuff the nurses didn't want her to have (unhealthy food, drinks) and asking when she can get out and go home.

I've been visiting as much as I can but the whole ordeal is getting to me. Everytime I'm about to go see her I get extremely anxious, and I can't be there for more than an hour or two without feeling like I'm about to have a panic attack. I really don't like seeing her in this state (not hospitalized but with a completely different personality) it's like her body has been taken over by a completely different person.
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They took her! Finally after 2 of my sisters, and brother in law (he's huge and can lift a lot) showed up and all 4 of us couldn't get her dead weight into the car, yeah.

Called EMT and both my sister raised hell and made sure they took her this time. They didn't even question it. She didn't even say "no" this time. After she realized all 4 of her kids couldn't get her up.
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97yroldmom Dec 2018
Thank God. I’m so glad you got her there. Please let us know what you find out.
Hopefully you will be able to get some rest.
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Guess you'll have to wait till she is unconscious then they'll take her. The longer she waits the more damage there will be.
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I'm worried for you. How are things now?
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ExtremelyTired Dec 2018
I've alerted all my siblings to whats going on. They all gave her a call, which she could barely answer, and after talking to her for a few minutes on the phone they called me and said there is definitely something wrong with her, they can tell just listening to her.

So I have two coming right now and another on the phone with EMTs/hospital (she's a very good arguer) trying to get them to come and get her.

Hopefully all goes well and we have her getting tested by the end of the night. As of right now, though, I'm just waiting, and keep checking on my mom when she hollers, and it's the same story. Making sure she's getting drinks of water and stuff. "Get me up!! Get me up!! *Gibberish, gibberish* Get me up! You have to get me up!" "We tried! Dozens of times don't you remember? You can't stand!" "....Yeah...Ok..GET ME UP!!! x5"
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Do you have a means to transport her there yourself??

Sorry, I just read they put her back in bed? WTF?
(((hugs)))
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ExtremelyTired Dec 2018
I called them out again. They helped her in the chair, again. I took video of her speaking gibberish, I also took video of me giving her the phone and asking her to please call my number. Which she couldn't, she could barely dial more than 5 numbers before giving up. And gave her the remote, asking her to simply change the channel on the TV, that's all. She couldn't even do that either asked her why and all she replied with is "I don't know I need you to get me up x 5" all this I got on video and showed them and they said it doesn't matter, if she responds to the test and passes and says she doesn't want to go they can't take her. They absolutely legally cannot do it based on the circumstance, she has to fail the test or do something with them there that warrants taking her.

Which I don't know what kind of test they're giving her, how can she pass that but not be able to press a single button on a remote or dial more than 5 numbers? Something she did thousands of times a day on a daily basis for 5+ years now.

I tried everything to coerce her, straight up threats of me leaving and going to stay with a friend so she'll never see me again, rewards, everything. She either just gives me a blank stare or a one word reply/sentence that has nothing to do with it like "I need to get in bed/I need you to get me out of bed"

I even talked to the nurse at her doctors office (Doctor isn't there today) she said I need to get her to the ER because based on the symptoms (like I suspected) she's either had a stroke or going to have another stroke. I told her the situation and she said all I can do is call the EMTs and try and coerce them into taking her.

About 3 minutes after they left, she's now asking to get put back in bed again.
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Are they there in the house with you or are you talking to someone on the phone? If she is as you describe I can't imagine them just walking away!!

Will she go for your sake? - how about some coercion like -"if you get sicker you'll need to go to the nursing home" or "if you end up dying they'll put me in jail" (hyperbole I know but whatever works)
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ExtremelyTired Dec 2018
Phone, trying to get someone here for help. And they did. But because they said she passed some test thing they gave her and said no she couldn't go. Right when one of the emts was about to leave he noticed something off, after getting her up she said repeatedly she wanted to get in the chair, not the bed. When I walked in the room, them still there, not 60 seconds after they got her in the chair she looked at me and said "I need to get to bed."
One of the EMTs did a double take and said "M'am are you sure you don't need to go to a hospital? We just asked if you wanted to be in the bed or the chair and you said chair." She says no, he shrugs and they walk out.
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We determined something was the matter when my mother had in fact suffered an ischemic stroke over 6 years ago. Her doctors office told her if she was not going to the testing they requested they would immediately be releasing her as a patient. The timeliness of treating a stroke is of upmost importance.
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I'm trying, but they had me ask her basic questions and saying if she's answering basic questions about where she is and can respond to questions like "Do you want to go to the hospital" they can't take her.

Seriously, I don't know what to do. I have no freaking idea. We've tried (both me and my dad) to get her up repeatedly so we can try and get her to the hospital but we can't because she won't help us. It took almost all 4 of the EMTs (much bigger than us) and some device they had to get her up.
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If she were mine, I’d be calling 911, then her doctor, and describing what you are seeing in detail.
I’d be asking them to omit sirens and flashing lights, and leave the decisions from there to the EMTS, who will understand how to manage her and keep her as calm as she’s able to be.
I’d be telling them that you are seeing additional problems and that you need her to be seen.
”Some kind of episode” needs immediate attention under any circumstances, much less someone who has already had a stroke.
Describe exactly what she’s doing. Don’t bother to tell them you’re scared or she’s scared but DO tell them that she is reacting differently to what’s going on around her than she usually does.
She sounds from your description that she is no longer able to be responsible for herself, so it is now up to you or some family member to take charge.
It is much better to learn that the symptoms she is experiencing are a simple fix than to wait until something worse happens.
Anything you do now will be THE RIGHT THING unless you decide to do nothing.
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Stop dicking around with this - call 911 NOW.
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Have you called her doctor? She’s worse now so Possibly she can’t refuse to go with the paramedics. Where is your dad in this? Have him insist they take her. Just tell them she’s clearly had a stroke.
Does she have a DNR document? Are you or dad her POA? Now is the time to take action.
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She's getting progressively worse. She just called me in the room (I think she wants me to get her up, which like I said I can't until whatever is going on with her stops) and I couldn't understand a word out of her mouth, left side of her face was looking numb and she was just mumbling words.

She's also breathing/panting really hard, and almost making this like slight moan/groaning noise along with it every time she breathes. Like she just got done running a 5k or something.

She still has no interest in trying to eat or anything.

It's beginning to become very obvious she has suffered another stroke or some kind of brain damage. I'm fucking terrified, I honestly believe my mom is going to die in her bed any hour now because something is definitely seriously wrong with her brain and I can't get any help
.
Every time I go to her she wants to get up, she's demanding to get up in her now incomprehensible words, and of course I try but we just end up setting there for 5 minutes (and her falling every which direction if I'm not holding her) trying and trying and then she says she has to lay back down.
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Tothill Dec 2018
Call 911 and get her to the hospital right away. If she is unable to make sense she cannot tell the paramedics not to take her.
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Can you reason with her to go to the hospital? If yes, call an ambulance and get her there asap.

Why will she not willingly go to a doctor? Would your doctor come to her?
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ExtremelyTired Dec 2018
She hates doctors/going to the hospital or physician. And honestly, I think she knows something isn't right despite saying she's fine and she's afraid to go. She's not even acknowledging the fact she can't stand up anymore, she THINKS she can/is trying but when trying to lift her we can feel that she isn't, because we're trying to lift her full/deadweight.
That's why she won't eat or do any of the things she normally does on a daily basis. She only acts like that when something is bothering her or she's ill.

We're trying to convince her and we're calling family to try and get some intervention thing going, maybe another family member can convince her..

I'm really really hoping this is just some kind of episode or reaction to meds or something that she'll snap out of because currently there's nothing we can do for her but let her lie in bed.

Her personality is off, too. I'm her last child and she normally is always concerned for me and making sure I have what I need, she saw this is making me bawl my eyes out and if she was her "normal" self she'd be upset/freaking out that I was crying asking what's wrong, did I injure myself, what do I need, how can she help, etc. Instead she just gave me a blank stare like she didn't even know I was there.
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