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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Depression
Fear, anxiety
Dementia
Go to E.R. for urinalysis.
It could be anything. Not a professional.
A vaginal yeast infection also brings crying jags. imo.
Also there's sundowning (can be a symptom of dementia) where they get disoriented (usually in evening or at night) and can get very fearful and confused. They will get very clingy and make multiple calls to the same person.
My grandpa also had a very hard time distinguishing between dreaming and waking, and that state between the two was troublesome for him at times.
Finally, it sounds like your mom is determined to avoid medical care. Are you ok with that? It just sounds like she's asking you to bear a weight that may be too heavy for any child to carry. Do you think talking to her about at least managing her pain might help? I don't think your mom has any idea what the implications are for the choices she's making. She's probably not ready to hand over control, and she's probably scared, but I think that both of you would feel better if she got some more help.
I'm so sorry to hear what you are going through. I know you are doing the best you can but it is overwhelming when all the responsibility of your mom's care is on your shoulders.
I would start by talking to a social worker, therapist, counsellor or join a support group. I would try access some community resources. I know you said your mom refused all help and expects you to take on everything. But it sounds like you are at the end of your tether. Please talk to Elder Protective Services and see what options are available.
Maybe there is a undiagnosed medical situation that is affecting your mom. Or some cognitive decline. The doctor really needs to review her meds, her blood work and hopefully be able to give you some answers.
Thinking of you. Sending you hugs.
Folks with dementia should not live alone past the early stages. It sounds as though your mother very much needs round the clock supervision and someone to administer meds.
But she doesn't want that. Even if you moved on with her (which I don't advise) she wouldn't comply.
So, what you are waiting for is another fall. Once she's in rehab, it will be apparent she can't return home. You'll tell the social worker at rehab that she has refused in home help. They will find her a placement.
Just remember that you can't reason with someone with dementia. But you can say "mom, if this is an emergency, call 911. I can't help you".
I'm kinda in your same shoes with my dad. It's tough to say the least. I too, was "losing" it and stubbornly chose this Feb to get on depression/anxiety meds short term (still on them). BUT I can tell you the BEST/WISE, help/support/kindness and straight forward advice I've EVER received was right here at AGINGCARE.COM, ~~everyday~~!!!
They all have saved my sanity, calmed me, made me smile, encourage/guide, and just listened to my whine moments....there's always someone here no matter what time of day!! Luv it here so much!
The "tough" road has gotten "lighter" for me and will for you too....keep reading others experiences, you've came to the perfect place!
Sending you a smile with a big hug and three pats on your back!
Bella 😉
Sendhelp I wish I could get my mom to go & see her doctor but she won't.
Like someone else mentioned, the only way I'll get her outta her house is if she falls again (God forbid) but that is it.
Right now it's the phone calls that are driving me insane.
I'm not sleeping well thinking every time my phone rings & it's my mom she's going to tell me to "come over right now".. so having to turn my phone off to be able to sleep makes me feel extremely guilty but at the same time I have to do it.
:(
I've applied for another part time job (in a hospital I worked at years ago) and my mom has increased the number of calls to me, day & night.
This is drving me crazy.
I'm at my job & she's calling me saying "come over, I'm really bad today, don't think I'm gonna make it, I can't talk, walk", etc.. in a very weak voice.
Sometimes I'll have spoken to her an hour or so before that call & she sounds ok/good, so I'm thinking when she has these "spells" it's the "sundowning" that some of you have mentioned..
I'm also in limbo right now w/my landlord who is going to increase my rent or sell the condo (I rent from them), so if I can't afford the increase and/or the new buyer wants me out I'd be forced to move back home w/my mom & my 14 fur babies.
Then that's going to put me in a worse situation since as I mentioned earlier my my moms reverse mortgage will be due if she should pass away.
I can't pay it so I'd be forced out then, and I'd be homeless because I won't be able to find another apartment that will allow me to have my animals.
I am frightened out of my wits right now.
Just living in frazzled energy because I don't have any choices..
What can I do to get my mom to stop calling me so much???
She won't see her doctor because she knows the doctor will most likely advise her to go to a nursing home because she's declining but I can't get her to do ANYTHING to help herself!!
I know things are hard on you. Please call your local town office and speak with Adult Protective Services or Senior Services and see what options are available to help your mom. There is a deeper issue with her increasing phone calls that need to be addressed. I hope you can work with a social worker to see what can be done to help your mom. Maybe your mom needs a third party to talk to her.
For now, try to do what you can to care for yourself. Thinking of you.
HO61: Oh Mom, that sounds serious! I'll call 911 right away. Will they be able to get in, or should I meet them with a key? OK. I have to get off the phone to call 911. [Hangs up.]
When the ambulance arrives she will fight the EMTs tooth and nails. Maybe they won't be able to get her to let them take her. But this calling her bluff may make her hesitate to cry wolf again. Please note, though, if she has dementia she may not learn anything from this exercise.
And if they can get her to the ER, hooray! You are now in a position to insist that she cannot return to her home.
The ER doc has examined her & has seen the big sore on her breast (from the cancer I assume) & her yeast rash under her breast which she's had in the past.
They've taken her urine to see if she has another UTI (don't know results yet).
I told this doctor that the doctor she saw last year in this same ER told me that he thinks my mom is is the beginning stages of dementia.
So this doctor knows that now.
My mom cries for no reason & has been very high anxiety (w/all phone calls).
I told the nurse I need to speak to the doctor about not sending my mom home because she's in no shape to live in her own.
They said there's no social worker here today because it's Sunday so what's going to happen??
Can they send my mom home seeing how sick she is??
If they say they are sending mom home in a cab, please ask in a very calm tone of voice if they think that she will be safe on her own for 96 hours. Because you are not available to check in on her until Tuesday or maybe Wednesday. Ask if they've been able to rule out a UTI, and when they can get a psychiatrist to see her and weigh in on her overall mental state, ability to care for herself and general competency.
She's just gone in for her chest X-ray so it's not like I can just leave now.
Should I speak w/the ER doctor ALONE, because my mom will hear everything I say & once I start telling him that she's shouldn't be on her own at home, she's gonna start crying & screaming..
Dont want to sound stupid but what should I tell them? I know my mom should be home alone but I'm so d*mn spent right now, I don't want to mess this up by saying something stupid or uncaring.
Please advise.
Let them call you in the AM. Remember to tell them that she lives alone, is non compliant with meds and that you are not able to provide care for her.
Ask them what their plan is for her. If anything they suggest involves you doing hands on caregiving, say " I couldn't possibly do that"
If they suggest bringing her home with aides, tell them about her noncompliance.
They need to place her. If they talk about the state stepping in as guardian, you tell them " that's just fine".
When you talk to medical staff tomorrow, make sure they are scheduling a psychiatric evaluation. And that they understand that YOU are not signing the discharge papers.
If they say they are sending her home alone, ask if they will put in writing that she is safe to discharge to her home with no assistance. Because you are NOT available to be there.
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!
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.
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?
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!
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.
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
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??
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.
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.
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.:(
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.