Long story short....... My mother took a couple of falls at the beginning of the month ended up in the hospital then transferred over to a Nursing Home Rehab center, 20 days came and went of course they'll keep her for $170.50 a day, which we don't have two pennies to rub together.
Now mother is back home and the past 2 days has been zero sleep for me because mom got another taste of people doing everything for her and she now treats me like hired help, I beg and plead for her to stop and she just laughs.
Yeah' she's got early onset Dementia how much of this is the Dementia I'm not sure anymore, I feel so helpless I keep hoping this will pass it did the last time but this time it's far worse then the last.
I'm her full time Caregiver, she refuses to listen to me, lies to me constantly about her exercising and as I said we don't have the money for a Nursing Home, Medicaid isn't even willing to help she receives just enough to keep them from getting involved but not enough to pay for care so I'm forced to deal with it, I guess I could just abandon her but I'm sure somehow I'd be the one paying the price legally.
Since she came home every night, every 10 minutes she's calling out for me because she needs to simply bother me, rarely does she actually need anything.
Do I just ignore her?
I'm either going to have a nervous break down or a heart attack at this rate, what does one do when you don't qualify for any help what so ever?
Someone tell me something positive please?
Mom went from the Hospital to the NH rehab center she was being treated for a UTI in the Hospital I didn't find out until a few days after bringing mom home that the NH did not continue to treat my mothers UTI, so mom went 20 days with a UTI not being treated, when the home health nurse came in she collected a urine sample and 3 days later I was told mom still had the UTI, but by this point her Dementia symptoms had turned severe, so I sidestepped her doctor and called Hospice they stepped in took over the care management and things are getting better, I'm still dealing with a ton of crap but the medical ball was dropped by the NH in a big way and it left me in a bad situation.
Now mom is off many of the drugs except her blood pressure meds and she's not as bad, mornings seem to be the time she has some clarity and it's somewhat possible to speak to her a bit, she's not eating a whole lot, sleeping way too much and still lost in a different world in her head but she somewhat remembers who I am, I'll take it.
Nurses that have meet my mother have all told me to prepare which is something I've already been going through..... Lots of crying when I'm alone, but the people at Hospice are really trying to be here for me, it's helping.
I've just learned the hard way that this NH is the second time around for us and it's also the second time we've had issues with them, but not many to choose from locally and the others from what I understand aren't any better, Florida's Senior care system is horrible and don't expect any help from the state at all, the only thing they want is control of the finances and any property the can weasel out of your families hands, makes me sick to my stomach.
In the end the NH didn't treat mom for a UTI for 2 weeks, gave her 15 minutes a day in rehab, stole most of her clothing that wasn't marked even though they were informed family was doing the laundry and then at the end of it all mom's feet were the size of balloons and they discharged her gave me a pat on the back and said with a smile "Good Luck Buddy." and sent me and mom on our way.......... regardless to say I'm a bit beyond peeved.
Thankfully things are getting better and Hospice comes through, when they say they're going to do something they do it, that's all I really needed was medical to simply do what they said they were going to do, and anything I feel I need Hospice will get it done for me, thank God for those people.
Monday I've got a meeting with Hospice Respite care to help me when I need it so that's even more pressure off my back.
Mom's doctor kept acting like he had final say in whether Hospice would be able to get involved in the end Hospice came in did their interview and less then 24 hours later we were admitted to the Hospice Home care, mothers doctor had no say in the decision in the end.
My suggestion is if it's bad and you've got the medical diagnosis don't wait just call your local Hospice and see if they can help, don't let the doctors do to you what they did to me and prolong this so they can keep making a buck.
Just (((((HUGS!))))))🤗
100 days
For each spell of illness, Medicare will cover only a total of 100 days of inpatient care in a skilled nursing facility, and then only if your doctor continues to prescribe skilled nursing care or therapy.
I know a lot of NHs here don't even take Medicare, which is frustrating - it's private insurance or private pay -- and who has that kind of money?
I'm glad they gave you a social worker. If he/she is any good, you'll get the kind of help you need. Prayers for you.
Medicaid takes over everything of value and gives the patient an allowance of $34 a month, be very wary of anything they want the family to sign I'm hearing horror stories where families are being charged after the patient expires for the overages in cost some upwards of $50k.
This is how we treat the elderly and even worse how they treat the Caregivers.
As far a Medicaid goes, did I understand correctly that you don’t want her to go on Medicaid because you’re afraid they would take the house you live in and you’d be homeless? I thought I read on this forum that if a caregiver lived in the persons house for X years that they could remain in it until the caregiver passes. This may vary by state, but the social worker may be familiar with this, or talk to Medicaid directly, not through a nursing home. If that doesn’t work to your satisfaction, see an elder lawyer familiar with Medicaid in your state.
From what was explained to me yesterday the NH was probably not going to receive the amount they wanted to charge from the supplemental insurance and that's why they did what they did.... Keep in mind though this information was coming from a healthcare provider not someone associated with the NH.
Same person also explained house & one car is normally allowed under Medicaid........ It's just a lot to take in.
This area and these NH's will evict once they've drained the accounts dry and they will try and make the family financially responsible...... Makes a person feel like you're pretty much stuck between a rock and a hard place..... Of course one can always just abandon their loved one they do give you that option, I in no way agree with that but that should show everyone the level of thinking these people around this area have in the NH's.
We're already underwater financially and mom has and is getting worse memory wise I'm just going to be waiting to speak with the Social Worker and Home Health Nurse again about things such as a hospital bed.
Another followup doctors visit next week...... More of the waiting game I have to play.
Just spoke with the Social Worker and she'll be here later today, already got her working on the hospital bed for me........... All I can do is take deep breaths and keep hoping for the best but I'll be expecting the worse, It's what life has taught me thus far.
My plan today was to try and sleep when I could but as my luck goes the neighbor dead behind us is having his roof replaced today.......WTH.!
My day started again today at 4am bed soaked with urine even though I changed mom's diaper hours earlier so steam clean the mattress another load of wash, had to head out at 6am to hunt down bed pads so after everything dried I could maybe stop the mattress from becoming a sponge.
I just want some sleep at this point but not happening again today.
4 days since mother got home and I've only managed 3 hours of sleep, heck even my mother looked at me this morning and said "You look exhausted...... Did I do that to you.?", how do you answer that and not sound hateful.?
She can help you get respite care for your mom.
She can help you untangle the problem of why mom got discharged when she had a supplemental policy that would have paid for another 80 days of rehab.
You can talk to her about possibly getting your mom readmitted to the rehab.
You can talk to her about your burnout and the fact that you need mom placed in long term care.
You can ask for a referral for help to figure out your financial snafu.
I'm glad things are going better!
At this point I'd love for mom to be readmitted and hopefully stabilized before they dumped her back onto me but I doubt that'll will happen
Pretty sure they all know I'm more of a bowl of jello at this point, the 20 days mom was in the NH rehab center just didn't seem long enough keep in mind this has been my full time gig going on 5 years now and before mom was my father......... I've got over 10 years into doing this and that's also 10 years with little to no help........
As far as things going better mom's memory is still going seems like everyday now she's losing a chunk of her memory, mom doesn't even ask to go to the bathroom anymore she just goes in her diaper.
Social Worker coming in today is the only good news I've had since Sunday.......... Finger crossed.
4pm doctors appointment went pretty good the doctor felt the same as I and took mom off the Depakote he felt the dose was just way to high and followed that by removing mom off of the Temazepam which I felt months ago mom shouldn't have been on, ended up giving mom Risperidone as a sleep aid....... Hope that works.
I skipped moms midday dose of Depakote and she seemed to be coming around later in the afternoon I guess tonight will be the tell. I've managed to chill out a bit myself, but I am simply drained at this point.
Thank you too everyone that jumped in and lent an ear and all the advise, we have a Social Worker coming by in the next few days, don't know what good that'll do but one day at a time.
I'm just glad this website exist and people like yourselves came to my aid in a time of frustration and need Thank you all again fingers crossed we start making progress back in the right direction.
This area of Central FL for as large as it is, it's also considered rural so the options and choices are very limited not only for NH's but also Hospitals from what I've seen in and about FL Healthcare isn't a priority at least not compared to the area of VA I'm from.
And Mental healthcare in FL is pretty much nonexistent, maybe I'm comparing apples to oranges I don't know.
Called her doctor back and he wants me to bring her into his office at 4pm.......... going to be a long day.
Why this has to be like pulling teeth with these people I don't know, I'm not expecting miracles just medical aid of a situation that wasn't there before hand.
Why the Patient and the Caregiver have to pay the price is mind numbing to me.
I'll Update once again after 4pm for anyone that's keeping up with this story.
I have read your post a few times and what sticks out is time after time your mom shows she doesn't care about anybody including herself! Maybe she really can't help it...maybe it is dementia...or maybe she is hardwired this way!
But here is a few life lessons that I have learned: 1) you can not help somebody if they won't help themselves. 2) We teach people how to treat us. 3) If you don't take care of yourself and stick up for yourself no one else will.
It is by belief that you have done all you can! I am with Barb she needs more care than you can give her and it sounds to me (just by reading your post and replys) it is time for you to jump ship!
I know you love her, but who do you love more her or yourself? And it is ok if you pick yourself!
If it was me and I could not get her Dr to do anything I would call 911 the next time she goes on a rampage. You can not keep living this way.
And yes I do understand that there are medications that can have a bad reaction to the elderly like Benzodiazepines. But at least if she is in the hospital they can get her stable and give you a break.
It really bugs me that you are bending over for her and she just laughs at you and mocks you!
My heart breaks for you!
Hugs!!!
I'm hoping to hear back from her doctor sooner than later I'll give them another 10 minutes and start calling them again, I'm hoping her doctor admits her for observation something the NH should have done but apparently failed at, whether that's due to under staffing and overcrowding I don't know and really don't care this should have been dealt with while she was in the NH not after discharge and if they couldn't deal with it then they should have sent her to the Hospital or wherever she needs to go to be treated correctly obviously the home is not the place to be testing these drugs for interactions like this.
Just finished having to bathe her another action she had little to no issues with before the NH this go round, there's just something not right with her I know this and I'm helpless to convince the doctors it seems...... This really is all new, literally it's as if she just snapped mentally hours after getting home, I knew it was going to be a chore but nothing like this, this is something I've never seen before almost as if the drugs have flipped a switch and short circuited her.
I complain a lot about the level of medical care in this area of FL maybe because one would assume being a retirement state the healthcare would be better then this but.......... a big NOPE is the answer.
Sad thing is even with my limited knowledge I'm normally right more then the Doctors around this place, to me that's frightening.
Still no call backs so back to the phone I go, for those interested I will update..... thank you all for the support.
These past few days since I brought her home from the NH have been like they gave me the wrong person... She just snapped.....
As I said the only thing that's changed is they put her on those Alzheimer meds and Depikote........
This morning she's managed to go to the bathroom everywhere but the bathroom and has no idea she's going to the bathroom, add to that everything else I'm dealing with.
I expected some adjustment this isn't my first rodeo with her but it's never been like this.
Waiting for her Doctor to get in for a call back to see what I need to do that's supposed to be around 8:45
The only thing that's really changed is the addition of those meds.
I've been a 24/7 Caregiver for the past 10 years, can't leave mother unsupervised longer then an hour she's a constant fall risk among the other things I've mentioned.
She's back at it again as we speak making demands as if I'm one of the NH staff.
Same I'm not the nurturing type but learn very quickly, I was an EMT years ago but we never really trained in this kind of crap.
She's just steadily making demands at this point with no rhyme or reason, she keeps demanding a different nurse.
Trust me it's gut wrenching when she mocks me and puts me down for doing what I do for her, she's constantly telling me I don't love her because I won't give into her every demand and I'm a horrible child yet I'm just one of the staffers in her view.
Two full days she's been home and once the sun goes down (Sundowners) it's every 10 minutes she needs or wants something, I keep checking on her but she keeps this up all night long and it never ends, I don't know what they did at the NH my assumption is they doped her up and kept her sedated at least that was the way she looked every time I visited her in the NH.
Her lying about exercising is nothing new this is how we got to this point of all the falling in the first place her thought is she's 85 so she shouldn't have to do anything she doesn't want to do period.
As you said can't actually force her to do anything that's from exercising to going to the bathroom since she's gotten home, her lying isn't limited to the exercising she also lies about her bathing or really lack there of.
She bucks at routines I've tried for over a year it's the same story there with everything else she's 85 if she wants to lay in bed all day then that's what she wants to do and there's nothing anyone can do about it, physical therapist have witnessed this also so it's not just myself.
As far as her sleep she tries and goes to bed around 3 in the afternoon it's hard to stop her unless you want to get into a full blown argument with her, once again that's actually nothing new with mom.
No one comes to the house I'm all alone dealing with this.
Physical Therapy is supposed to start yet again but that's twice a week and mom gets hostile towards them at times and really they're of no help except for the physical therapy that she'll never keep up with in the first place.
And here we go again she's really searching for a pity party, she wants' anyone to give her sympathy because she feels at 85 she's deserving of it.
It really pees her off when people show me any sympathy and she tells them "He's not the deserving one I am.". Yeah' that's always a special time mom creates around strangers.
I have felt as you do over two separate stages of life. The first when I had small children, and the second when I became mother's full-time, morphing into 24/7, caregiver.
I am not one of the world's natural-born nurturing types, shall we say. I loved these people very very dearly, but the *intrusiveness* and the *relentlessness* of their needs and demands drove me up the wall. And although normally a quick learner, I always seemed to take ages to work out a good, smooth system, and always just in time for everything to change and demand something more or different.
If I had to narrow it down to one thing which I wish I had made myself accept from the beginning: do not waste time or effort on trying to resist the role you are stuck with. It will pass. It will pass quicker and less painfully if you seize hold of it.
Taking a few items at random:
Your mother mocks you when you plead with her not to call you for nothing, time after time. I know you only said "she just laughs." But her laughter mocks how you are feeling, whether that is her intention or not. It must break your heart, in the moment.
Don't plead with her. If she calls you, and you go, and she needs nothing, give her a neutral acknowledgement and then withdraw. If you allow it to become emotional, you are providing her with stimulation - in a way which you don't want to encourage - and hurting yourself.
She lies to you about exercising. What, she claims she's already done them? Fine, twice won't hurt - let's go. Take control of the prescribed exercise program and then she can do it or not do it (you can't force her), just as she pleases - but she can't feed you b/s about it.
What about routine? She's only been back for two days, you're already exhausted, and now you're dreading another sleepless night. It is HARD to structure a routine when you are knackered and desperate and feeling helpless, I know. But this is about regaining some sense of control, and it is worth it. So what's the shape of the day? - meals, personal care, activities, rest, sleep?
Are you also trying to combine this with any kind of paid work, self-education, social relationships (HA! I know, but you may be)?
Who else comes to the house?
I'm just about breaking down in tears, mom is calm right now because she thinks I'm getting ready to send her back to the NH that threat alone has put a cork in her behavior, temporary as it might be at this point I'll take the quiet.
I appreciate the words but still feels like I'm failing....... I know it's the system that's failed worse deep down but it's hard to overcome.
I have had people warn me about these types of medications causing these issues but I don't want to just stop although it's only been about 8 or 9 days she's been on most of the memory meds.
Just in my opinion it seemed more like the Hospital & NH were just doping her up to make her easy for them to deal with and sent her home to me like this.
What started this was when mom fell and I found her covered in blood from a head gash (back of the head) it was an impact type gash as she didn't hit anything but the carpeted floor in our house, my guilt somewhat went away when I got a call from that NH the first week she was there when they told me my mother had an "Unsupervised" fall and they had to rush her to another ER to be checked....... I could tell you more horror stories like that with this level of care that we have around here with just me and my mom, lord knows how many others these medical places are screwing up.
Calling her doctors service won't do any good they never respond to anything in a hurry typical message is "If it's an Emergency hang up and dial 911" is the response I'll get......... Yes I've tried to get mom to find a different doctor but she's been seeing this one for over 15 years, once you get in front of him he seems caring and compassionate enough but nothing is ever of importance to his office staff....
At this point mom is just down and out on the couch I'm just going about my normal morning routine as if she isn't there and she's staying quiet or she's finally passed out from being up all night ranting and raving.
Just verified her doctors office opens at 8am......... I think I can make it until then at least I hope.
YOU aren't failing your mom. She needs more care (at least right now) than one person can humanly give.
She should have been discharged with home care. The rehab discharge folks failed her there.
She may have developed a UTI. This may be a reaction to medication. But dear person, this is NOT your job to figure out. It's the $%#@ medical establishment that is at fault here, not you.
When things are less frantic, you need to clarify if the supplemental policy will pick up the copay for REHAB. Not for nursing home care. How you word this question to them REALLY matters.
Again, call mom's doc NOW.
It wasn't this bad before she started those meds don't get me wrong she's been through the NH rehab before and she came home with a bit of confusion but nothing like this.
As I stated I expected some issues but this is really beyond anything I expected........ I feel like I'm failing her.
You want to find if the supplement will any part of days 21-100 in REHAB not Nursng home. Was she discharged from rehab because she was no longer making progress or because she couldn't pay the 170$?
In terms of paying for long term care (nursing home care) you need to find out 2 things. 1. Does she medically qualify for NH care? 2. Does your state have a program where you can create a Miller or Qualified income trust to deal with the overage in income?
And yes, make sure you have it clear in your head that you needn't respond to her every whim.
I caught an hour or so nap to only find my mother made it to the living room she can't go much farther as she not mobile enough.
And to answer that burning question they won't take the home because it sits on leased land, last time this NH wanted me to sign my rights off to them they started listing everything they'd want to take SS & pensions, home & vehicle, the car was signed over to me but hasn't been transferred legally because of finances........ her SS and pensions I can understand, the home as I stated is another nope, they're more then happy to help fill out the Medicaid paper work but they'll start the whole process by taking control of everything she owns first.
They seem to be more about the money and worry about the other stuff later......... is that normal for NH's.?
My fear is I'm simply stuck with her and this is what my life has become and I've got nothing at this point myself I've been a Caregiver for going on 15 years Dad was first but he was easy, I should have left after he passed but......... That's another story.
So I'm financially drained because of my mother and bailing her out from before I took over her finances, so I'll also be left pretty much penniless and with nowhere to go over all this.
I'm just in a really bad place right now, no family or friends to speak of it's just me and mom....... I guess it's just me really mom has left the building.
I'm tryine to make it till mothers follow up doctors visit next Tuesday and see what her doctor says I expected some confusing when she returned home but not this level whats changed is they put mom on a couple of Alzheimer medications and a bipolar medication and now this is no longer my mother, the follow up seems so far away and I feel like I need to go to the hospital at this point because of chest pains.
It's those types of actions she's preforming that leads me to believe she's being more manipulative then being taken over by the disease, don't get me wrong I'm sure the disease is playing a factor but how much of one vs the other is the question in my head.
As I said Medicaid refuses to help she makes as they've claimed to much yet what she does make isn't enough to cover the nursing home care.
Unless I'm being completely lied too about all of this.
Going on 6 hours now and she's still at it, I've lost my patients with her she wants to get up and I don't know what it is she wants from there she refuses to tell me I've offered to call the EMT's since I can't talk any sense into her and the talking is turning into yelling at this point because she won't give it a break.
If she needed help with something that would be one thing but she's been the child that cried wolf for the past 2 days wanting to be waited on hand and foot...... and she's still going at it right now it's just after midnight just as I dose off she starts in again.
At this point she wants me to dress her and I don't know from there she won't tell me.................
Nightmare would be better then this at least I'd be asleep.
As I said Medicaid refuses to help she makes as they've claimed to much yet what she does make isn't enough to cover the nursing home care.
Unless I'm being completely lied too about all of this.
Going on 6 hours now and she's still at it, I've lost my patients with her she wants to get up and I don't know what it is she wants from there she refuses to tell me I've offered to call the EMT's since I can't talk any sense into her and the talking is turning into yelling at this point because she won't give it a break.
If she needed help with something that would be one thing but she's been the child that cried wolf for the past 2 days wanting to be waited on hand and foot...... and she's still going at it right now it's just after midnight just as I dose off she starts in again.
At this point she wants me to dress her and I don't know from there she won't tell me.................
Nightmare would be better then this at least I'd be asleep.
As Dr. Phil states "don't let the tail wag the dog." Stop letting someone with a broke brain run the show!!
Yes, I know it is hard prehaps you could take Barb advice.
I am sorry that you are going through a hard time.
Hugs!
I went in to check on her again and she managed to get herself to the bathroom.... That proves to me she's playing me.
She doesn't want to go back to the Nursing Home, she doesn't want me to call any emergency services, she's more capable, the only think I can figure is she' doing this because she wants attention........and sympathy.
I just hate to think when and if she does have an emergency I'm not going to know.
She claims I hate her because I'm refusing to give into her every whim.
This is beyond a nightmare she's creating, someone has to be home with her 24/7 being the only son I somehow got stuck with this.
It all began when I came to help my father because mother refused to help him, her excuse was it was too much like work, she managed to steal from me after dad passed and I was working on getting away from her then she started having health issues I should have listened to dad and got far far away when I had the chance.
To be honest Dementia or not my mother has always been like this her whole life she's always felt entitled it's just gotten worse and my sympathy has begun to wear out for her with all her false alarms.
Does she have a Medicare supplement? That would have picked up the $170. day co-insurancrce for days 21-100.
Was your mother still making progress in therapy? Did the doctor order home care and therapy?
Would you think about re-admitting her to rehab and working with them to get her qualified for Medicaid?
I'm so sorry that you're so stressed; she sounds like a nightmare!
The frustrations are real for me at this point I'm really trying to do my best but she's pushing it really hard tonight and now this morning.