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.
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.
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.
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.
You must be exhausted!
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.
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??
:(
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.
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??
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.)
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.
"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?
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?
Do they know if there's something else causing the POTS? My friend was just talking about this (I'd never heard of it before) and she said it can occur on its own but it's more common for it to be caused by another condition, and she said there's a whole list of potential ones.
Have they provided her with any neurological work up? Have any doctors explained to both you and your mom what all of her suspected health problems are? Do you get the sense your mom fully understands what they are saying to her? Does she understand your concerns?
If they try to send her home Sunday, be adamant that you can't pick her up. At least if they wait till Monday the social worker will be in.
You ARE doing your best. This is not your fault. I hope they can get through to your mom.
The chaplain came around a few days ago & talked to my mom asking her to please consider having the palliative care nurse see her at her home when she gets discharged & my mom agreed.
In the past she had always turned everyone away who would come to the house but those ladies were NOT nurses, they were home companions who did light housekeeping, bathing, light cooking etc.
They had no medical background and the young lady only came once, after that my mom told her she would call her to reschedule for the other day that week but she never called so after a few months, the senior service coordinator closed her case.
After that (late last year) it was ONLY me taking care of my mom.
Well the the thing that concerns me now is since my mom has been in The hospital & she's having these "sundowners" episodes more frequently, and she CANNOT walk in her own.
It took me & the sitter to pull her up out of the chair she was sitting in.
Then she used the walker to go 5 feet to the bathroom, but she needed help sitting in the toilet, the sitter wiped her after she did potty.
Then she shuffled back to the bed.
Her dizziness is CONSTANT.
No medical professional seem to know what's causing it.
There is something I found on the internet that a cardiologist claims he has discovered and it's called "Pots syndrome".
It is caused by something in the blood that pools in the lower body and when a person stands up or turns over (basically any movement can cause the dizzy feeling) the blood doesn't get to the upper body fast enough..
All the patients who have these symptoms (dizziness, fatigue, sleep problems, rapid heart beats, et) have gone years without a diagnosis because most of them thought it was neurological & it doesn't seem to be..
Well back to my main concern w/my mom..
Since she is so weak I'm afraid she will have another fall & God forbid this time may be very very serious.
When I spoke to the hospital social worker she did tell me that as long as my mom is refusing to go to a skilled nursing facility, she can't be forced to go.
I understand this, but I'm o lay my moms POA for her medical decisions which only states that in case she was in a coma or something similar, she would want me to make the decisions for her regarding her not wanting to be on life support.
The social worker said the only way my. I'm would be able to be placed in a skilled nursing is if she was declared unable to make decisions by a doctor, then I would have to go to court to obtain legal guardianship.
So once again, we're back to having my mom dishcharged back to her home in this weakened state, she'll only recieve a visit twice a week (in the beginning they said) be the palliative nurse who will "check up on her", then taper back to once weekly, & that's it!
What about the rest of the day?
The rest of the week?
I can't be there 24/7 to take care of my mom because I work 2 jobs.
I have to to keep my apt or I'll be homeless.
This nightmare is not letting up.
My fear last year was the same.
When they discharged my mom from the rehab hospital, the same happened.
She was in no condition to be by herself but they let her go anyway.
And now she's back in The hospital.
I think for my own sanity I need to hear that I'm doing the best I can for my mom w/what is available to me but that may not be enough & something tragic will happen because of her situation.
I don't want to have this guilt that I did t do enough should something bad happen but this feeling won't leave me.
My mom has 6 stairs at her front door.
I can't imagine how she is going to be able to go up those stairs to go in her house if they discharge her being so fragile.
I just don't know.:(
The social worker's job is to make sure that at-risk patients get proper assistance. Don't worry about what she thinks you want. Be really up front with her about your concerns for your mom, and especially what you've observed.
Your dad's story is so awful; I can understand why you don't trust facilities. But if you do find that being the best or only option, please remember that you do not have to take the first spot they suggest. If a facility is not acceptable to you, tell them so. They can keep her there a little longer till a bed opens elsewhere.
You seem to have two choices....let your Mom talk the medical staff into allowing her to go home...and go through this whole cycle again. Or, refuse to accept your Mom being permitted to go home...get into it and tell them what your Mom has done in the past in this same situation. Point out that your Mom has ALWAYS refused compliance once back at home....and ask the social worker if they are going to put in writing that knowing her non-compliance, they still believe she will be safe. (That will scare them).
Can't have it both ways. It's either at home and non-compliance or in a Medicaid accepted nursing home.
My mom has refused ALL the help since the last rehab stay which was 1.5 years ago & im afraid she's just saying that to this social worker to get her off her back & want to go home.
Once she's home, she's either going to cancel the nurse so many times that they're going to stop coming or she may not even allow me to schedule the initial visit once she's home.
What should I tell this social worker w/out sounding like I want mom to go into a nursing home??
Hopefully I can get a few hours sleep soon before I need to go to work today.
My mom is supposed to be seen by the attending doctor @ the hospital this morning.
I explained to the kind nurse who was in mom's room pretty much all that's been going on up until this point & told her I'm terrified of thinking my mom is going to be sent home to be by herself again but want to talk to her doctor on what he thinks is going on & her ability to care for herself, then talk about what happens from there..
I don't believe the doctor will call me but I may need to speak to the head nurse (who gets all the feedback from the doctor), so we'll see what happens later today when I go see mom.
My mom does have Medicare & Medicaid (her income is very low, poverty level).
So the thing that's REALLY concerning me right now is the prospect of my mom being placed in a facility, the rating of that facility most likely is going to be very poor.
I know exactly what I'm talking about because my father had to go to a nursing home back in 91' after he had his 2nd stroke and he too went to a Medicaid accepted facility.
It was such a depressing, stinky, dirty place..
My dad died there from being set on fire.
He lived 1 month in the burn unit of another hospital but I always remembered how bad that place was & agonize over thinking my mom may end up in the same place or similar..
My chest is starting to race right now so I have to go & lay down.
I appreciate all your kind words & advice, I really do.
Thank you everyone.xo
I'm sure some readers of the advice I've given you sounds mean, or cold-hearted. But picking up on what Vstefans said, it is no longer safe for mom to decide that she can live alone. She is refusing meds, refusing any assistance other than yours and is causing you health and financial issues.
If you need to force the issue with the hospital by not showing up, then so be it. I've been fortunate in that my mom is always cooperative and hospital discharge folks have always steered us in the right direction.
But I have cousins who have had exactly the opposite experience, in the same hospital. They were bullied, over and over into taking their mentally ill, demented father home to inadequate care. The only solution appeared to be forcing the hospital's hand by not showing up.
she fell a few days later and broke her clavicle and pulled her shoulder out of socket. They fixed it and before they could release her, she pulled it out two more times in the ER. I insisted they contact her dr. before they let her out. I told them to check how many times she had been there in the past year for falls. They did and admitted her and on Christmas Eve, they put her in a nursing home. She did rehab and the social worker wanted to let her out. I threatened to sue the pants off of her and the home if she was sent home and fell again! They changed their mind right there at the meeting. She's gotten out a few times and took off toward the highway to "go home"! Then her memory really got bad and for the past year, she has been in the memory unit where she hates everyone and anyone and goes after them with her canes. She has had 3 taken from her, has fallen again and broke her hand, refuses to co-operate and in general, drives them nuts! But, I can sleep thru the night after several years without fear of her laying in her yard! I see her weekly, tried taking her to dinner but, she won't get back in the car unless I promise to take her home! So, I just take stuff to have a picnic with her.
I wish you the best. You can't keep the pace up and not pay for it dearly. We have left strict instructions for our children as to our aged care. They are NOT to have us moving in with them! They have their own lives. I didn't have them to use as care givers for myself and my husband! We have given them their inheritence already and paid for our funeral arrangements. I do not want them to go thru what I and my husband have for over 18 years!
And, especially if you are correct about the metastatic cancer, she's dying.
You can ALWAYS ask for private time with the medical staff. Tell them the truth about what is going on. You do not need a HIPAA release or medical POA to GIVE information. To get information you are supposed to have one though. If you do not have financial and medical POAs I hope you can get them from Mom - maybe try to tell her this is so you will be allowed to help her more, which is the truth. The other harsh truth here is that people are allowed to irrationally refuse any and all medical care or help unless they are deemed incompetent and even then there is hesitation to force things on them they do not want. Your mom has made some poor choices about medical care, and her fear has likely led to the refusal of bathing help - she is playing "la la la la la can't hear you" with the breast lesion, basically if she can hide it, it's not there or she does not have to think about it. You will not doubt do all you can do to help treat this if it is treatable, and it will be hard to accept if she continues to refuse care that would help. Someone will have to take charge - either you or the state - and find out whether she needs rehab or needs hospice. And then - knowing as well as possible what is going on and what is most likely going to happen, and how fast - someone who cares about her will need to make decisions, respecting her wishes as far as possible, but no further.
It is all right to insist on things she says she does not want if she needs you to. It will not FEEL all right, because you are the daughter and she is your mom. But she has already shown that she can't be the one calling all the shots any more. I went through this too. There were time that medical staff assumed I knew things when I either did not or had not really faced up to. At some point this upcoming week, you may be sitting in a room with someone and saying, hey, look, I do not think my mom can live on her own any more, what do you think? Can you tell me - how sick is she, really? Is that big black wound on her chest what I think it is? Is there anything we can do for it? What are the options for where Mom can live and be cared for?
1.) She will have a "regular" (not ER) doctor see her. That person will hopefully take more interest in her care.
2.) Hospitals can face Medicare penaltiesif they have too many Medicare patients readmitted within 30 days of discharge. Now that your mom has been admitted, if they think there is a chance she could be a fall risk or might need to come back, they will be more likely to try to keep her a little longer and more likely to either seek rehab placement or may advise hospice to cover their behinds.
3. If your mom is in the hospital for 3 days she can be eligible for rehab through Medicare, even if it is just to rebuild strength after the hospital stay. That is often the toe in the door that gets a patient a bed in the NH.
I respect Barb's opinion that it might be time to go home, and that you don't want them assuming you have time to "sit around" waiting on your mom. She probably knows better than I do! But in our family's case, we usually have had better luck talking to staff face to face.
It also might help to find out when shift change are scheduled and call shortly after (since the new shift often seems to disregard what the previous shift has told the patient.) Call early and call often (if they don't return your call), especially the social worker.
As the other ladies said, stress that you have observed that your mom is not safe at home and you cannot provide the care she needs. Emphasize her self-neglect. Tell them she does not take her medications, does not perform her activities of daily living, and that her judgement is way off. Tell them about her sundowner's. Tell them about how in the past she's told medical personnel she would follow their instructions in order to be allowed to return home, but once there she disregards all instructions, even refusing to get a medical alert button. Tell them she sometimes is able to convince doctors that she understands them, but then at home it becomes clear that she does not understand what's been said to her at all.
Barb's line about "I couldn't possibly do that" is really good -- it is clear and firm.
It is work for the social worker to find placement. If they are just mediocre, they will drag their feet and suggest you can handle it at home. But based on what you are describing, I find it really hard to believe that any decent doctor or SW would send your mom home in her condition. Be firm, have courage that you are doing the right thing for your mom and for yourself.
You must speak with the hospital Social Worker, and tell them she is a Vulnerable Adult, living alone, and you cannot take time off from your job, or quit to care for her, and that you have no other family nearby, that can help on this situation.
Continue to be strong in your decision, that you cannot, will not be able to care for her on your own, and that she needs to be placed in a nursing home for her own well being. Once this is accomplished, you can help her to apply for Medicaid, if she hasn't the money to pay for services, and will assist in any way possible. Please know that the next few weeks will be dificult, and you should seek medical care for yourself during this trying time.
I hope that everything works out for you, and that your Mom gets the help she needs, to address her Healthcare needs.
If she does indeed have breast cancer, that has manifested to the point of a sore to the surface of her breast, she may be eligible for Hospice care, wherever she ends up in supportive care, while she goes through any treatment that she chooses to take.
It sounds like there are tough days ahead for the both of you, and my heart goes out to you both, but remember to take care of you!