What does my mom have?
My mom is 82 years old and lives alone 5 minutes from me. She has Medicare and Medicaid. Her only income is Social Security and that's $700 a month. She had fallen using her walker last Oct. and spent almost 3 months in rehab. The physical therapist went to Mom's house to asses if she would be ok to go back to her house and live on her own. He thought as long as she gets a couple of grab bars in the bathroom that's all she needed.
I did not agree with him as my mom was still pretty weak even with her walker, but she was determined to leave the rehab and go back to her house. On the last day of her discharge she had an episode that had brought a cardiac doctor to her room who asked her to stay for another few days so she could be monitored since her blood pressure had went up and she was getting palpitations.
She yelled at everyone and said "You're all trying to keep me here and I wanna go home." and she started crying. The doctor asked if I could convince my mom that she'd be better off staying.
She wasn't having it. She told me that I was "conspiring" wtih the doctor and the administration there and she wasn't staying. So I brought her home. She was allowed to have a home aide come in 10 hours a week to do light housework, fix meals, bathing, etc., but no medical stuff at all. I am 56 years old, the only child and have some physical limitations, but I manage to do pretty much everything for my mom except bathe her, which btw, she won't allow anyone to do that saying she gives herself "a horse bath".😒
Now my mom's caseworker told her "but that's not good enough my dear, what about your feet, your back, etc." and my mom told her "Don't worry I can do it." My mom has had 2 yeast infections under her breast as a result of her unsanitary hygiene and she reeks, which I have trouble being near her for very long. My mom also has untreated breast or lung cancer, we're not sure which because she refused an exam with her doctor the last time she saw her which was before her fall. Her doctor went under her shirt to put the stethoscope and noticed the blackened sore above moms left breast and asked her how long that had been there. She didnt' get an answer. So along with that, my mom does have Asthma, spinal degeneration, anxiety, osteopenia and the beginnings of what the ER doctor said the last time she was in the ER (Jan. 2017) of dementia. She ONLY takes her Asthma medication because she says all the other drugs she's been prescribed for the pain in her hips and anxiety give her "bad reactions". What's been happening lately though is something I'm having a really hard time dealing with and needed to reach out to you all to ask on how to go about handling it better, because it is truly causing me a tremendous amount of worry and I sometimes feel like I'm on the edge of a nervous breakdown. I have no relatives nearby. I have 2 cousins in Arizona who are taking care of my elderly auntie, their mom who has brain cancer. So, when I do talk to my cousins, I don't tell them all that's been going on with my mom. My mom sleeps at intervals during the day and is up pretty much all night. She is fearful of everything and constanly brings up all the nastiness going on in the world and all the crimes that keep happening because we live in a suburb right next to Chicago. She will have these "episodes" of when she's close to sleep, or maybe she's just awakened from a sleep where she'll call me and say in a very, very weak and scared voice, "Tina, come here right now I need you to come over, something's not right, I'm very sick, please come over, please at least just for an hour till I feel better." She will do this about 4-5 times a few minutes apart. Sometimes she'll call up to 6-8 times a night.
I have had to turn my phone off to get some sleep, but I am to the point where I turn it off even during the daytime since I'm at work and can't take calls all the time. So when I hear her voice messages where she's being mean because I didn't respond to her the first time she called then, she calls and leave messages shaming me saying "Your friends wouldn't do this to their mothers would they?" or "Why are you ignoring me?" Sometimes I'll go to see her and as soon as I leave and get in my car she's calling me and leaves a message saying I should pick up, and that she needs to talk to me, but I don't because I'm driving and she's says "that's bulls**t". Why is she calling so many times and why does she pretend to be dying when she calls for certain messages, but then another message her voice is very strong and she'll say mean things to make me feel guilty? Oh, when I go see her, she also has these crying jags where she'll be talking about something then she'll get really sad and start to whail. Is this all part of dementia?
The incessant phone calls and crying? I forgot to mention my mom did not allow the home aide to come by to help at all.
She's refused the company to come and install the medical alert button for emergencies. She's turned down ALL outside help and expects me to do everything which I'm not capable of. She will not go to see her doctor either.
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Do not sign anything for discharge. Do not show up to take her home.
They are trying to bully you. Your mother needs rehab.
Has anyone done a psych eval?
"that's all well and good, bits YOUR job to make sure she's being discharged someplace safe and she lives alone. She has a history of noncompliance with help and meds. I'm not going to kill myself, lose my job and become homeless trying to care for her 24/7. I won't be there, so she's going to end up back here within 30 days. So what's YOUR plan to avoid that".
This is not said angrily or tearfully. It's just the facts.
Your mother also needs to know that you are not able to give her the care she needs and deserves, that she needs to accept being in rehab until she gets stronger.
And what about a psychiatric evaluation.?
You mentioned palliative care. Have they determined that your mom has cancer and that it's not treatable? What is her prognosis?
The nurse called & said my mom doesn't fit the criteria from Medicare to be a "hospital inpatient" so she has to leave.
The fact that she can't even walk or stand w/out help isn't a factor.
Because my mom has been deemed as "competent " she can make her decision that she doesn't want to go to a skilled nursing home.
I told the nurse what you guys said about putting in writing if this will be a "safe discharge " & the nurse kind of skirted around that & said their hands are tied w/Medicare but they may be able to use some criteria under Medicaid to see if one of the rehab facilities will accept my mom to allow her to get physical therapy there so she can get stronger to be able to walk on her own, at least w/her walker..
The nurse said she would talk to my mom & try to advise her to do that.
But if my mom refuses, they can't force her..
Oh my God, what a nightmare this has become.
If you want, you can ask them to page the doctor responsible for the discharge decision and when they call you back, ask him or her specifically what they think is going on with your mom, & why they chose not to evaluate your mom for dementia or other cognitive or psych. issues. The doctors use the nurses to get people off their backs. The doctor should have to explain their reasoning for this decision. If nothing else, ask the doctor to talk to your mom and emphasize the importance of rehab, if they haven't done so already.
We went through this loop with my grandparents. So much hinges on which individuals who happen to be working that day. So at least if she goes to rehab, you are going to come into contact with a couple new people who can talk to your mom or who might know the system. You just need to encounter one person who both cares and knows what they are doing. (Unfortunately that's a lot harder than it should be.)
She wants to go home.
I asked that they put something in writing that it's a "safe discharge" & the social worker said they would never sign anything like that
The psychs doctor did examine her & he has "no definitive diagnosis or cognitive impairment".
I CANNOT BELIEVE THIS!!
I HAVE recorded messages on my phone from my mom for the last 6 months where's she sounds like she "sundowning" but they are all denying this!!
What will happen if after I speak w/the doctor (he's supposed to call me within the hour) and tell him I don't feel like my mom is going to be safe?
What after he stands his ground saying "there's nothing else we can do" and they get her ready for discharge and I don't show up??
Can they press charges against me??
You have no legal obligation to take physical care of your mom. (There are a few states where children have some filial responsibility to their parents; I think it is usually a financial responsibility -- and in specific instances -- but hopefully someone else will speak to that.)
This is not abandoning her. You have a job you need to go to, you are trying to get help for her. Both she and the medical community are essentially saying you're wrong, she doesn't need any help.
Tell her doctor that based on her past behavior, when she is released from the hospital, she doesn't follow doctors' orders and is non-compliant with meds. Tell him she does not understand the risks of not following medical advice. Remind him of her multiple health issues, that she gets agitated when left alone, and that you cannot be there with her everyday. Just be honest and tell him you are scared and exhausted, you can't be in two places at once and that neither of you can afford out-of-pocket in-home care and she refuses what she gets via Medicare. Ask him how you are supposed to ensure she will be safe at home.
Good luck. I hope you get somewhere with these people. It sounds like they made up their mind already. At some point there is nothing you can do if this is truly what your mom wants. But that is really unfair for her to ask you to pick up all the slack.
It's 7pm.
The doctor said "his hands are tied" because she is still able to make her decision to "go home".
Her "sundowning" episodes are not enough to declare my mom "incompetent" or have a lying else make decisions for her so that's it.
I have to leave for work @ 8:30pm so I'll have about an hour to get my mom settled in.
Then I have to leave.
If she starts crying or having anxiety I don't know what I can do.
I'm out of breath right now from cleaning & getting her bed made up.
Why does this have to be so hard??
:(
Did they at least order the visiting nurse or in-home PT for her?
I cannot believe they sent your mom home like that. I hope you will be able to go home and go to bed after your shift. You need some time to just deal with your own business.
Just as a side note: When grandpa first started calling several times a night, we used to leave notes for him saying "Don't call us before 9:00pm" or whatever. It had to be very direct. It did help for a while till his dementia got worse.
You must be exhausted!
She took moms vitals & observed her getting around w/her walker.
Very nice lady, my mom felt very comfortable w/her & liked her very much.
This nurse called me last night & asks me "how often do you see your mom?
I told her I go to visit 2-3 times a week, usually staying a few hours as I have to work split shifts on my jobs.
So the nurse tells me "you know I observed your mom has some vision problems, dizziness & mobility issues, so my question is are you able to accept the position of her caretaker or have someone else in mind to provide care her because that's what I am there for & that's to train the caregiver".
I told her "no, I can't provide the care for my mom & neither I or my mom has the means of can afford to hire someone else to"..
So she was very concerned & she said "you know I'm going to have to speak to my supervisor about this because I cannot continue to see your mom, that's not within my work guidelines, because my job is to TRAIN the caregiver, I do not provide the care myself".
So WTF am I supposed to do now??
I told the d*mn doctor this is what I was talking about if he discharged my mom back to her house in her condition & she has no one to stay with her but he told me "his hands were tied, we can't force anyone against their wishes & if they want to go home, we have to allow that".
My nightmare has come to reality because my mom DID tell the doctor that she would not go to rehab & wanted to go home & she would allow the nurses & care givers to come inside her house, that she wouldn't be in "non compliance" w/any help she would be offered & now it turns out that the state, or Medicare, Medicaid, whoever the H*ll is responsible for these decisions is not going to provide sh*t!!!
Forgive me for cursing but I've gone from being scared for my mom to being angry at this point.
I'm angry at our health care system for elderly people who cannot afford to hire live in nurses to care for them and/or be there with them when they have mobility problems & cant be left alone for extended periods or they can seriously injure themselves.
Your pretty much on your own.
Just die.
Her "independence" was being bought with your slavery. Not any more.
You need to call the agency and tell them that they need to tell MOM that needs caregivers. That either she needs to hire them or she needs to get someone to apply to Medicaid on her behalf so that she can get assistance.
Assistance will be provided to those who ask for it and who qualify for it. But she has to ask.
The other major problem is that the psych doctor did NOT deem her incompetent to make her own decisions so that's the issue right there.
My dad will be going back home soon also with his doctors saying he's competent
I have no answers for you, I hope someone here does!!! Ugggh!!
Hugs
Did the nurse ever get back in touch with you? Do you have DPOA or medical proxy or anything? Will she call you, or would she call your mom to say what's going on?
I don't understand how the staff at the hospital thought this would work when they should know Medicaid does not cover night time help (and mobility problems and dizziness don't go away at night.)
For now, you can try to get her to a better primary care doctor/geriatrician if hers doesn't seem to know what's going on, and can try to get in touch with the Medicaid case worker or Dept. of Aging social worker to see if there are more options for your mom. It sounds like she is starting to accept that she needs more help; maybe she would let caregivers come in.
With my grandpa, he was not declared incompetent. My mom had medical/DPOA for him and he had a dementia diagnosis (from that stupid clock test they do in the geriatrician's office.) It was enough to get the doctor's to take my mom more seriously. (But grandpa was fairly cooperative.)
There only so many hours in a day. You've been trying to help your mom and she and the medical system have made that a really difficult job. You did not make this mess. I worry that you will burnout if you haven't reached that point already. This is such an emotional process -- the emotional part is really hard work too.
There is a lot here you don't have control over. Can you just give yourself a few days to clear your head out a little, and then maybe next week start thinking about what you and your mom can live with, what's reasonable, etc?
The doctor said that could be metastasis from her breast (cancer).
The constant dizziness (moms been dizzy for the past 2 yrs) could also be a tumor that metasisized to her brain but she refused the MRI for that so it's just a guess right now..:(
At home last night mom did bring up some things that I wasn't expecting her to talk about when she came home.
She asked me to put the 2 wedding rings, hers & her mothers, (my grandma's) in a safe deposit box, but she first wants me to have them appraised so that I don't get ripped off when the time comes when I have to sell them (the money will be needed for her cremation & interment w/my sister @ the mausoleum).
I'm going to try to visit my mom every day, if only for a few hours because I don't know how long she'll be w/me at this point.
She's praying God takes her in her sleep @ home if she has to go, rather then in a hospital.
I didn't know this most recent medical information until yesterday.
I'm feeling like someone just kicked in my stomach really hard, a sick feeling..but I know why because I'm fearful of losing my mom & wish I could do more for her, especially to ease her discomfort & anxiety at having to live alone..
I have to ask if any of you know what is expected for a person with cancer who hasn't had any treatment..
I mean what could happen to my mom physically??
Will she experience a lot of pain?
Will she need strong pain meds??
I don't think I can get her out of the house now that she's home from the hospital to see her doctor, but they are setting up a visiting nurse to come x2 a week for now but that's the only medical attention she'll be receiving.
I love you mom.💖
From what I understand, hospice is only if the patient has a 6 month or less time to live as the prognosis?
Did you ask the doctor what he thought the time line for your mother is? I would feel free to call him back and ask if a referral to hospice is appropriate.
Or, you could call some local hospice organizations and discuss what they would need from the doctor to do an evaluation.
How are they different from eachother?
So, we don't have a specific Hospice organization that is running the show, the folks at the NH are. Mom is getting comfort, not curative care for her CHF. She still gets some PT and is on a walking protocol. She is on antidepressant meds and scheduled pain meds, with antianxiety and MORE pain meds as needed.
We have a "no transport" order--if something happens that they would ordinarily take her to the ER for, they don't. They will call us and we will decide if we want to treat it. (we would treat, say, a fracture, but we're not going to treat pneumonia any more aggressively than can be done in the facility).
With Hospice, there would be extra aides, chaplain, volunteer visitors, I'm told.
From all the posts on this website, it sounds like a lot of these things vary state to state. But I think, in addition to the hospice 6 month prognosis, one of the main differences is in billing. If your mom were to choose hospice care, her health care bills (which would be limited just to comfort care) would be paid solely by Medicare. (However if she was getting in-home help via Medicaid, I think that continues to be billed to Medicaid, like the room and board part of the NH bill continues to be billed to Medicaid. But I would definitely ask to make sure.)
It probably also depends on your hospital system/palliative care team, but as Barb described, our hospice provided some support for the family: there was a chaplain who talked to us and also prayed with us and grandpa, and a 24/7 phone number we could call if we had questions. Hospice also will help once the person passes; the NH or family calls them and they come out to the residence to fill out necessary papers and handle the logistical part of things.
My thought is that your mom's doctor just might not think she is within the 6 month time frame yet, unless he suggested it and your mom nixed it. If you are thinking you might want healthcare proxy (or whatever it's called in your state) maybe the palliative care nurse would be able to address that in a practical but delicate manner with your mom?
She then started talking to mom & myself about what she's recommending..
My mom has refused the nurses suggestion that she receive hospice care (so she can remain at home instead of having to go back & forth to a hospital when she's feeling very ill..)and I don't understand why..
When she's feeling short of breath, chest pains, she will need to call 911, paramedics come & take her to the ER where she will most likely. E admitted to the hospital (which she hates.. understandable), then after a time they will discharge her to go back home & they can't treat her for anything else..
So it would be back & forth to the hospital..
The nurse did tell mom she does have breast (metastatic) cancer & her symptoms indiciate that it has traveled to her lungs (nodules seen on recent cat scan) & lymph nodes, possibly her brain because of her constant dizziness that they can find no other explanation for (mom declined an MRI to be definite but that's her choice & I understand & respect that).
When the nurse suggested hospice & what that entails (pain management, skilled nursing visits weekly, respite care, visiting doctor who will come to mom, she won't have to go to see him, etc)
Mom did mention to the nurse the reason she doesn't want hospice is because she remembers my grandma's (mom's mom) having hospice before she died when she got cancer and how sick she was from all the chemo, radiation & surgeries and "she still died anyway"..
The nurse told mom a lot has been improved since (1991) so it would be much better for mom to have a team of care givers along the journey then to be all alone.
And that's just it, my mom is alone most of the time and I can't be her 24/7 so I'm worried that this journey is going to be nightmarish.
Does that make sense?
I can't convince her of anything, she's a very strong willed & opinionated woman & I'm absorbing a LOT of guilt.
She told the nurse the only time she doesn't feel scared or afraid is when "my daughter is here"..
It's killing me that I can't spend more time w/her.
Feeling like I'm going to have a heart attack but I'm powerless to do anything to change what's going on.