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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If she doesn't understand that YOU are not in charge of getting her pain control meds, then you need Lorraine to understand that.
Just saw your new message! That sounds like reasonable advice -- maybe it will resonate with your mom. It sounds like Lorraine "gets" where your mom is coming from. I hope you are doing ok.
She also said to tell mom that she is STILL in control of her life..
If for any reason she doesn't think that hospice is working for her, she can stop it.
Also Lorraine did mention that there have been occasions where the patient was doing so well with hospice (they were eating regularly, managing pain, maintained their weight, etc) that they've actually have been discharged from hospice by the agency.
So if my mom thinks that she CAN make those decisions, she may be more accepting of trying it..
We shall see.
Explain that the doctors have told you that there may be brain Mets and THAT may be what is causing your mother's disordered thinking.
Find out what they suggest. Your mother is very ill and deserves pain relief even if she can't request it herself.
Your Mom has signs of a mental illness which prevents her from getting the help she needs. imo.
There is NO definitive diagnosis yet on the metastasis to lungs and brain. She needed that MRI.
Both you and your Mom are viewing this from a hopeless perspective, and your mother's thinking cannot be trusted.
Say this: "Mom, you will see a doctor for treatment, OR
have hospice come in."
"I am going home now, don't call me until you have a doctor's appointment. If you want to die, you are doing a good job of it, and you cannot take me with you."
"There is hope and you are not accepting it."
(Hugggs)
This may be a question for Lorraine. If your Mom does agree to sign on with Hospice does there have to be a caregiver with her 24/7 to monitor the medications and be responsible for your Mom. I know you don't need anything else to worry about but it is something you need an answer to so you can prepare or get a plan together.
My Stepdad signed up for Hospice thinking they would provide all needed support. Hospice would not allow my Mom to be the required caregiver because she had the beginnings of dementia. I assumed the required caregiver role.
I don't know what the Hospice requirements are in different states/areas. That was just my experience.
I hope someone comes here soon to respond and give you some wise advice
Thinking of you dear 💜
But at the same time she's experiencing a LOT of pain in her hip (osteoarthritis) and I & the palliative nurse (Lorraine) explained to her that since she has never been to see her new primary doctor (old doc left the staff & new one took over her patients), mom would need A doctor (presumably the hospice doc) to prescribe pain meds if/when mom needs them but my mom still doesn't want to "officially" sign up for hospice so we're stuck..
She'll scream & complain about the pain to me & I tell her "mom, I can't do anything for the pain, I'm. Not a doc", but then she gets very upset w/me & says "I hope you don't have to go thru this when you get old"..
I'm thinking mom just hopes & prays that she goes in her sleep (major heart attack) before it gets really bad.
I don't know.:(
Maybe her mom already rejected a consult. If that's the case, I was thinking that the hospice nurse could come out and talk to her mom again, and answer questions the mom might have since it is a difficult decision and the nurses know that.
The thing I don't understand, Hangingon, is that your mom already chose the scariest aspect of hospice (choosing not to treat the illness) but she is refusing all the beneficial aspects that would make that choice less scary for both of you: visiting help, comfort measures, pain relief, spiritual support. Do you think she is just in denial or has social anxiety and doesn't want people around? I wonder if her primary care dr could give her something for anxiety -- sometimes drs will Rx something for the short term when people are going through an episode of accute stress. I really hope for both of you that she comes around quickly on this.
you have had sooo much patience
Keep crawling or running here for
help!!!!
Still kinda in same d*mn boat as you and learning from your journey with your mom...I can sympathize with you but have no correct or wise answers, yet. That's why i come here
😍
My mind is like in a mixing bowl everyday...1 stubborn, difficult, dysfunctional parent, and a whole lotta luv...throw in whatever ya want and see what ya get...ugh for me...but that word "love", which is the main
ingredient in my bowl, is changing to a "tough" ❤️ love
This is sooo hard....thinking of you and still watching and listening how
you and your mom get through this.
Come here everyday for your dose of strength and courage hanging on 💕
Hanging, they have told you that the cancer has spread certainly to her lungs and possibly to her brain. The fact that the cancer has spread to her brain could be the reason for her illogical thinking. Or maybe she's never been a logical person.
If she doesn't go on hospice, who is going to be prescribing and managing her pain meds? Does she have a doctor yet?
Can you ask her why she fears hospice? Does she understand that without hospice, it's going to be very very difficult for YOU?
Your mom must be panicking and possibly feeling some regret; is there anyway she could talk to a counselor even once or twice? Even something like Catholic Charities or the American Cancer Society might offer low-cost or free counseling in your area. The ACS also has this on their website in the "Treatment and Support" section: "the American Psychosocial Oncology Society (APOS), can connect you to someone within 2 business days through their toll-free service at 1-866-276-7443." Even if your mom won't talk to someone, it might help if you could talk to somebody.
I don't think your mom is the first person to approach her health problems this way. A lot of people are in denial when they get a serious diagnosis. There have to be medical professionals (doctors, hospice staff, social workers) who've encountered people who are in your mom's boat. Has her primary dr (or whoever it was you dealt with at the hospital) offered for her to speak to an oncologist? She probably needs to talk to someone who can tell her in a gentle but objective manner how other people have handled things. Maybe not having someone say "This is going to happen to you" but instead "This is what most other people have the best outcome with" might be helpful. (Even if Lorraine or another hospice nurse came back out it might help clarify things for your mom.)
Your mom having hospice in place I think will be relief to you and to her. She needs to be at peace with the decision though. But don't forget that as much as this is about your mom, you are also are experiencing this as her daughter -- it is too much for you to also need to be her medical manager, therapist, errand girl, housekeeper and nurse too. That would be too much for anyone. You have a right to tell your mom that you need help too.
You have been doing great trying to get our very dysfunctional health care non-system to give proper care to your mother. The outcome is not your fault. Your mother is very ill. Make peace with that fact and be kind to yourself.
So I called mom & told her I'd like to come over & bring her stuff & also one of my pups so I did & I wasn't there an hour & she got pretty upset when we were talking about the earlier visit during the afternoon w/the nurse.
Mom says "I don't like Lorraine"..
"Do you like her?".
I answered "yes, she was very nice, she was very thorough & took her time examining you, explaining everything & answering our questions".
Mom says "no, I don't like her, she kept pushing that hospice & I don't need that.. not yet, I don't need that".
But she DOES need some help, she continues to call me at work & screams at me that she's in pain, to go pick up her pain patch @ the Walgreens, she says "it's ready, go get it right now".
I call the Walgreens & they say "no, it's not ready because we need a doctor to prescribe the prescription it has expired & we don't see a primary doctor listed for your mom..
My mom never went to meet her new doctor after her old one left the staff & the hospital so she's basically w/out a primary doctor..every time I told her she needed to get in to see the new doctor, it would turn into an argument & she say "you're upsetting me, I don't want to talk about it".
I told her "mom, I'm at work & will go as soon as I'm finished, and also told her they can't fill it yet because she doesn't have a doctor"..
She screams at me again & says "my God, I'm dying, can't you handle that, tell them I need the prescription!!"
She screams back & says "your mother is dying over here & you're telling me to wait!!"..
This has happened a few times now since she's been home for the hospital..
So back to the nurses visit.
I said "mom, she's not trying to push anything on you, she's suggesting based on her professional medical knowledge of what she feels you are going to have a better quality of life with, and that entails have nurses who can be called anytime of the day or night, a doctor who will come to the house to make visits"..
So mom gets really angry & says to me "YOU planned this whole thing right?
You scheduled her to come here & push the hospice didn't you?"
I said "no mom, the doctors & the social workers suggested it when you were discharged from the hospital"..they gave me the brochures & contact numbers to call".
She said ""but you knew it was for hospice didn't you"?
She kept saying "are you on my side or what!"
I knew what she was trying to do, my mom is constantly shaming me & wanting me to feel guilty and I don't know why she's doing this..
Is this a common thing when people get sick?
I told her "all I'm trying to do is help you & get help for you the best way I can, I'm not plotting anything, why am I a villain??"
She didn't answer & I was getting pretty upset so I told her I'm was tired & was going to go home..
Should I just make the sign of the cross & make peace w/the idea that my mom doesn't want any outside help, no one there to monitor her health or anything, only me & when she's alone in the house, in her weakened state if she should fall or have an emergency I may not be able to get to her in time & she can die.
How can a person psychologically be "ok" w/that & not feel "guilty".??
For your own sake, you need to step back and let this take its course.
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.
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.
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?
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.
How are they different from eachother?
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.
From what I understand, hospice is only if the patient has a 6 month or less time to live as the prognosis?
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.💖
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?
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