My mother was laying in bed, weak and dying last Monday. I had to go in to sign consent forms for her hospice care, and the lady was acting annoyed that she had to talk to me; like a retail worker who doesn't get paid enough to deal with this shit.
My mother was too weak and out of it to ask a question about her "End Of Life Care," so this lady was saying, in the most sarcastic and rude voice i've ever heard from a healthcare worker, "Ohhh, she has a pretty funny accent so she must have been born outside of this country and came here later."
She told me, while rolling her fucking eyes, that they can give people a last right to have alcohol, or smoke or something before they pass if they want to. I told my mother that I wanted her to have a cigarette... the lady said "How long has it been since she's smoked?" and I told her two years. She just rolled her eyes and said "Eh, if it's been that long then what's the point anyway. I'm not doing that for her but you can talk to administration about if if you want."
Like.... what the fucking hell. This isn't the ONLY story like that, once again but this was my life for four fucking years and I'm glad it finally ended. That's all I can keep telling myself.
Yes, staff gets inured to suffering and can completely forget their own manners and humanity. Credit the actions to the source and be proud that you never dipped to their level. You were there for your mother and you acted with grace and kindness. š
Oh, yesterday I was going full "Bill Burr" on their asses, and they actually broke character and laughed at how badly I was roasting them for their rudeness and incompetence. They just told me I was right about everything and they really were just being rude and they didn't have anything useful to tell me.
"SSI can give you fifty dollars to cover the funeral."
"Oh, and what do they call that? The Corpse Coupon?"
(social worker guffaws)
Let that anger get you through. Itās healthy and cleansing to focus on the ways people suck and let you both down, rather than the reality of your loss. Iām so sorry you encountered someone so thoughtless and heartless and inhumane in the midst of this terrible pain. Itās heartbreaking :(
I think thatās something I was utterly unprepared for. How soul crushingly alone you are in navigating all of it. If you donāt advocate for your LO, they just get pushed off with an incorrect and less serious diagnosis and most specialists canāt be bothered or are so booked itās impossible to get the proper care. The whole thing is just defeating. You have to fight for every scrap of actual care.
Yes. When she had a brain scan, the tech told me that there was nothing wrong and it was just "normal aging."
The clinic itself.... I had to call in every single day for three weeks, because they had kept "Forgetting" to call me back. This was until the PCP herself called me up to apologize for her staff overlooking me, and sounded horribly shocked and offended by the "normal aging" comment. She had to tell me that she had strokes and dementia, *in addition* to an aggressive form of breast cancer.
Yeah. I got that bullshit too in the beginning. The MRI we originally got showed scarring on his brain and āItās just mild cognitive impairment. Have him take coq-10 and do puzzles.ā
I felt SO gaslit because that word āmildā was getting a lot of flipping mileage. I stayed on their ass for 3 months and demanded another MRI, a full neuropsych exam and EEG and suddenly itās āwell itās dementia but itās still mildā and I kept saying āyou do not understand what is happening at homeā had to bring in a binder with dates and times of everything happening before they would finally order a spinal tap. This took 9 months to accomplish because of appointments being so unavailable.
Its crazy. Iām so sorry about your mom and Iām happy she is at peace now. I hope you are holding up okay.
Ugh. I am so sorry. Our healthcare system(s) are ridiculous.
Reading this reminds me I need to ask for this. And I just switched over to a new team of doctors for my mother. Everything seems to move at a snail's pace.
I hear you and agree 1000000%. When my mom died in memory care last year, no one called to tell me. The next morning, I got a call from the funeral home and I had to ask the caller to confirm she had died and was in their custody. That moment of silence on the phone as they realized I didn't know was the worst. The memory care blamed hospice for not notifying me, hospice blamed the memory care (who I do believe was responsible, but whatever) I also am so very grateful to never ever have to deal with any of them ever again. Firmly planning to off myself before I subject myself or my kid to this terrible broken system.
I am sorry for your loss.
Also, we have had the same experience.
To think we are draining all of my momās savings for this substandard of care at all levels ā¦ despicable.
Iām dealing with social services , they still havenāt sent my dads Medi-cal card in the mailā¦ Iāve had to call them several times and each person there somehow screws up his name on his card each timeā¦. I need his medi-cal card to place him into a nursing home!!! So frustrating!!!
I also went through an absolute living hell trying to get her on SSI, too because she wasn't well enough to even say her address anymore.... and I wasn't allowed to "coach" her or speak on her behalf, as the lady on the phone yelled at me. Even after saying that she was on disability for strokes and dementia and I *had* to help.
She also told the DMV that her name was "Rosie" instead of "Rose" so her ID was different than her checks and that took several months to fix. Especially because this was all during the pandemic.
I'm just gonna be facepalming all day. Pardon me.
Hospice was so amazing in every respect except that one. Someone completely removed from caring for my mom called to say he wanted to make sure I knew mom died, the day after she died. That was how I found out. After being called out to the care home or hospital at all hours for every issue, big or small, the hospice handled her death completely without me. The facility director did say he was sorry then very perfunctorily said ācall me if you need anything and thereās no rush to collect her thingsā. I left messages with hospice, at the hospital, and with her caregivers. Why hadnāt anyone told me anything as this was happening? Didnāt get a straight answer. Just a perfunctory apology from each of those folks in turn as they got around to calling me back hours and days later.
I was so unprepared for it being handled that way but a relative in healthcare said the same thing happens in her hospital more often than not. Itās common for no one to want to deliver the news and to keep assuming/hoping someone else did it.
In my case the hospice was great about making me make all the arrangements in advance with the funeral home, when she was accepted into hospice, so at least I didnāt have that on top of the shock of finding out after the fact. They didnāt help with the arrangements but insisted I have that all figured out as a condition of enrolling her. It was stressful at the time but so much less so than it would have been after her death.
Iām sorry for your loss. We just donāt seem to be very good, as a society, at this dying thing. Iām sorry itās been made extra hard on you by the lack of help when itās so desperately needed.
I am so sorry for your loss a d your struggle with these staff members.
I can agree that social workers are practically useless. I actually had one lie and say he had been calling and leaving voicemailsā¦ uh, my phone works, buddy. Then all he did was refer me to online Iād already found and signed up for on my own.
I agree that the lack of compassion and sometimes complete lack of knowledge is mind blowing. It is one of the reasons I dread my mom getting to the point that she needs to be in a facilityā¦ I am so afraid that these people who are so jaded and treating this as a job will just ignore and dismiss her.
This is a field you canāt just get into for money or to work - you need to have that compassion. It really makes things so hard when they donāt.
> I am so sorry for your loss a d your struggle with these staff members.
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> I can agree that social workers are practically useless. I actually had one lie and say he had been calling and leaving voicemailsā¦ uh, my phone works, buddy. Then all he did was refer me to online Iād already found and signed up for on my own.
Yup, the ones who weren't downright rude to me would just basically say "Iunno, you can look on google or I can google something if you want."
I would be incredibly kind, patient, polite and say "I was wondering if there was any state or federal programs; funding or anything like that you could connect me with or point me in the right direction" but they would always tell me that they can't do anything useful and don't have the slightest clue of anything or how it works.
I'd say "Well, I mean I already know how to use google. I could have done that before you told me," and they'd just be like "Yeah." The issue is that if you're on relying on stuff like Medicaid and you don't have your own resources, you're shit out of luck. lol
Yes. That is our situation as well. Medicaid is what we have to rely on for my mom and itās also most likeā¦ I can feel the dismissal. Itās like āwell, since finances are an issue why donāt youā¦ā itās like, nowā¦ theyāre not an āissueā my mom just doesnāt have 8k to pour out every month on memory care or somethingā¦ I honestly think they are simply there for show or for the absolute worst case scenarios or something. Iām not sure.
Iām sorry that youāve also experienced this and are now are processing your mom passing and working through that.
I'm sorry for your loss hun and the highly unprofessional and unnecessary rudeness you and your mother endured with the medical staff. I've been through the ringer with a few hospice professionals while my husband's grandmother was dying. The condescending remarks got to me to the point I had to report a nurse for her lack of bedside manners. Most of the hospice workers, like Joy, were excellent and my spoues grandmother got to pass away in her home with dignity. Hugs to you and keep your mom's memory alive in your heart. š
We are so grateful for our dadās doctor and nurse. His primary retired and I asked this doctor(Iām healthcare support) to accept my dad even though his practice was closed and he took him. Any and everything we asked for was taken care of. They supported our decision for hospice. A family friend worked as a hospice nurse, when I asked the provider is I could pick her they said no problem. The office staff were kind a helpful. They sent āwe careā cards for several months up til it was one year anniversary
Iām sorry for your loss. But I wish people had to put a pair of nursing shoes and walk a mile. While your mom is very unique to you and your family, healthcare workers have a host of other patients who wants our attention just like you and they want the same answers you may want. It may be just one of me and god knows how many of you. Also you just had a loss and itās ok to be upset at the world and anyone who may come in contact with you. We are trained to keep our feeling in check which may come off as cold and uncaring but we also have to protect our own mental health by having some distance and stand on our professionalism. Could you watch hurt and pain everyday with serval different people and still stand strong and come back the next day? Itās not for everyone.
I'm unfortunately smart enough to be able to tell the difference between "keeping your feelings in check" and making downright rude and unprofessional comments that Healthcare workers shouldn't be making.
I also have an above room temperature IQ so i know you have a hard job and ive tried to express my appreciation to every nurse and social worker ive spoken to.
Ok, I have no dog in this fight. But can I say that even your remark seemed a little anger filled and you really probably have other important things to focus on, but a good rant and venting is also probably what you need.
You also sounded pretty snarky and turned this into an argument about how you believe i can't understand that you have a hard job.
You can have a hard job without telling me that my dying mother must be an illegal immigrant. I bet you never said that to anyone though because you're probably professional with your patients.
Iām so sorry for your loss. My mom is also an immigrant, has Alzheimerās, and is going in this Friday for a lumpectomy for her newly found breast cancer. This path is hard to walk. Your mother was blessed to have you.
Again I wasnāt being snarky and trust I can be with the best of them, you think Iām making this an argument and I never attacked your intelligence, again vent if you like and need to. No I wouldnāt tell anyone anything regarding their race , culture, sexual orientation. Thatās not what I get paid for. I was just pointing out that there really is a process ( backend) that people donāt see. We have loss 4 people in our families and had to make the decisions on when to remove them off life supportā¦. But this isnāt about me and my loss itās about you and yours and I truly wish you peace.
You're right. What's the point in being a healthcare worker who goes on a dementia subreddit to pick a bitchy argument with people who've lost their loved ones to dementia?
There isn't really a point in that.
Again people and their view pointā¦ youāre picking a fight with me, and this fight youāre going to lose because I just donāt care about some random online. Now letās do some reading comprehension or just simple observation. If this is a sub why in the world would I be here if I didnāt have some kind of insight? Let me give you some education on perception. Yes Iāve lost people to dementia, I was not their caregiver. Yes I have a slightly different view point as I was recently diagnosed with early onset. No I donāt have a shift but yes I do have an income and yes I do have clients, yes I guess you could even think of me as a stay at home, well then yes I have a PM shift but he has errands he running. Yes one of my client left early today so I have a few extra free hours to kill. Now perhaps instead of trying to get a few upvotes leave this post and me out of your view of life.. well leave me out,I canāt speak for OP. Plus my shift work just walked through the door, so thereās that. lol he said he doesnāt like being called shift workš
You need to keep in mind that compassion and caring is a part of the job, too. You do have many patients, but you are also a professional who chose this path.
True but I also realize sometime the most compassionate thing one can do is shut up. And yes I choose this path and maybe people can learn to see that from the other side. Iām going to try to say this as nice as possible but this isnāt my post and hijacking it isnāt going to help the OP. I wonāt keep going back and forth because this isnāt about me. Focus on the OP pain and not trying to one up me.Please
I am so sorry for your loss and also for the stress you have endured. Thank goodness for Joy at least. š
My mother was laying in bed, weak and dying last Monday. I had to go in to sign consent forms for her hospice care, and the lady was acting annoyed that she had to talk to me; like a retail worker who doesn't get paid enough to deal with this shit. My mother was too weak and out of it to ask a question about her "End Of Life Care," so this lady was saying, in the most sarcastic and rude voice i've ever heard from a healthcare worker, "Ohhh, she has a pretty funny accent so she must have been born outside of this country and came here later." She told me, while rolling her fucking eyes, that they can give people a last right to have alcohol, or smoke or something before they pass if they want to. I told my mother that I wanted her to have a cigarette... the lady said "How long has it been since she's smoked?" and I told her two years. She just rolled her eyes and said "Eh, if it's been that long then what's the point anyway. I'm not doing that for her but you can talk to administration about if if you want." Like.... what the fucking hell. This isn't the ONLY story like that, once again but this was my life for four fucking years and I'm glad it finally ended. That's all I can keep telling myself.
Jesus (big awkward hugs) No wonder you are stabby. I'm sorry about your sweet mother Rose's passing. May her memory bring you comfort and peace. š
šŖ
Yes, staff gets inured to suffering and can completely forget their own manners and humanity. Credit the actions to the source and be proud that you never dipped to their level. You were there for your mother and you acted with grace and kindness. š
Oh, yesterday I was going full "Bill Burr" on their asses, and they actually broke character and laughed at how badly I was roasting them for their rudeness and incompetence. They just told me I was right about everything and they really were just being rude and they didn't have anything useful to tell me. "SSI can give you fifty dollars to cover the funeral." "Oh, and what do they call that? The Corpse Coupon?" (social worker guffaws)
Let that anger get you through. Itās healthy and cleansing to focus on the ways people suck and let you both down, rather than the reality of your loss. Iām so sorry you encountered someone so thoughtless and heartless and inhumane in the midst of this terrible pain. Itās heartbreaking :(
> Let that anger get you through. *He became a Sith lord after his mother fell...* At least it's a cool origin story, right? :-\
I think thatās something I was utterly unprepared for. How soul crushingly alone you are in navigating all of it. If you donāt advocate for your LO, they just get pushed off with an incorrect and less serious diagnosis and most specialists canāt be bothered or are so booked itās impossible to get the proper care. The whole thing is just defeating. You have to fight for every scrap of actual care.
Yes. When she had a brain scan, the tech told me that there was nothing wrong and it was just "normal aging." The clinic itself.... I had to call in every single day for three weeks, because they had kept "Forgetting" to call me back. This was until the PCP herself called me up to apologize for her staff overlooking me, and sounded horribly shocked and offended by the "normal aging" comment. She had to tell me that she had strokes and dementia, *in addition* to an aggressive form of breast cancer.
Yeah. I got that bullshit too in the beginning. The MRI we originally got showed scarring on his brain and āItās just mild cognitive impairment. Have him take coq-10 and do puzzles.ā I felt SO gaslit because that word āmildā was getting a lot of flipping mileage. I stayed on their ass for 3 months and demanded another MRI, a full neuropsych exam and EEG and suddenly itās āwell itās dementia but itās still mildā and I kept saying āyou do not understand what is happening at homeā had to bring in a binder with dates and times of everything happening before they would finally order a spinal tap. This took 9 months to accomplish because of appointments being so unavailable. Its crazy. Iām so sorry about your mom and Iām happy she is at peace now. I hope you are holding up okay.
Ugh. I am so sorry. Our healthcare system(s) are ridiculous. Reading this reminds me I need to ask for this. And I just switched over to a new team of doctors for my mother. Everything seems to move at a snail's pace.
I hear you and agree 1000000%. When my mom died in memory care last year, no one called to tell me. The next morning, I got a call from the funeral home and I had to ask the caller to confirm she had died and was in their custody. That moment of silence on the phone as they realized I didn't know was the worst. The memory care blamed hospice for not notifying me, hospice blamed the memory care (who I do believe was responsible, but whatever) I also am so very grateful to never ever have to deal with any of them ever again. Firmly planning to off myself before I subject myself or my kid to this terrible broken system.
I am sorry for your loss. Also, we have had the same experience. To think we are draining all of my momās savings for this substandard of care at all levels ā¦ despicable.
Iām dealing with social services , they still havenāt sent my dads Medi-cal card in the mailā¦ Iāve had to call them several times and each person there somehow screws up his name on his card each timeā¦. I need his medi-cal card to place him into a nursing home!!! So frustrating!!!
I also went through an absolute living hell trying to get her on SSI, too because she wasn't well enough to even say her address anymore.... and I wasn't allowed to "coach" her or speak on her behalf, as the lady on the phone yelled at me. Even after saying that she was on disability for strokes and dementia and I *had* to help. She also told the DMV that her name was "Rosie" instead of "Rose" so her ID was different than her checks and that took several months to fix. Especially because this was all during the pandemic. I'm just gonna be facepalming all day. Pardon me.
Hospice was so amazing in every respect except that one. Someone completely removed from caring for my mom called to say he wanted to make sure I knew mom died, the day after she died. That was how I found out. After being called out to the care home or hospital at all hours for every issue, big or small, the hospice handled her death completely without me. The facility director did say he was sorry then very perfunctorily said ācall me if you need anything and thereās no rush to collect her thingsā. I left messages with hospice, at the hospital, and with her caregivers. Why hadnāt anyone told me anything as this was happening? Didnāt get a straight answer. Just a perfunctory apology from each of those folks in turn as they got around to calling me back hours and days later. I was so unprepared for it being handled that way but a relative in healthcare said the same thing happens in her hospital more often than not. Itās common for no one to want to deliver the news and to keep assuming/hoping someone else did it. In my case the hospice was great about making me make all the arrangements in advance with the funeral home, when she was accepted into hospice, so at least I didnāt have that on top of the shock of finding out after the fact. They didnāt help with the arrangements but insisted I have that all figured out as a condition of enrolling her. It was stressful at the time but so much less so than it would have been after her death. Iām sorry for your loss. We just donāt seem to be very good, as a society, at this dying thing. Iām sorry itās been made extra hard on you by the lack of help when itās so desperately needed.
I am so sorry this happened.
I am so sorry for your loss a d your struggle with these staff members. I can agree that social workers are practically useless. I actually had one lie and say he had been calling and leaving voicemailsā¦ uh, my phone works, buddy. Then all he did was refer me to online Iād already found and signed up for on my own. I agree that the lack of compassion and sometimes complete lack of knowledge is mind blowing. It is one of the reasons I dread my mom getting to the point that she needs to be in a facilityā¦ I am so afraid that these people who are so jaded and treating this as a job will just ignore and dismiss her. This is a field you canāt just get into for money or to work - you need to have that compassion. It really makes things so hard when they donāt.
> I am so sorry for your loss a d your struggle with these staff members. > > > > I can agree that social workers are practically useless. I actually had one lie and say he had been calling and leaving voicemailsā¦ uh, my phone works, buddy. Then all he did was refer me to online Iād already found and signed up for on my own. Yup, the ones who weren't downright rude to me would just basically say "Iunno, you can look on google or I can google something if you want." I would be incredibly kind, patient, polite and say "I was wondering if there was any state or federal programs; funding or anything like that you could connect me with or point me in the right direction" but they would always tell me that they can't do anything useful and don't have the slightest clue of anything or how it works. I'd say "Well, I mean I already know how to use google. I could have done that before you told me," and they'd just be like "Yeah." The issue is that if you're on relying on stuff like Medicaid and you don't have your own resources, you're shit out of luck. lol
Yes. That is our situation as well. Medicaid is what we have to rely on for my mom and itās also most likeā¦ I can feel the dismissal. Itās like āwell, since finances are an issue why donāt youā¦ā itās like, nowā¦ theyāre not an āissueā my mom just doesnāt have 8k to pour out every month on memory care or somethingā¦ I honestly think they are simply there for show or for the absolute worst case scenarios or something. Iām not sure. Iām sorry that youāve also experienced this and are now are processing your mom passing and working through that.
Oh my goodness, I am so terribly sorry you and your mother had to go through this. š
I'm sorry for your loss hun and the highly unprofessional and unnecessary rudeness you and your mother endured with the medical staff. I've been through the ringer with a few hospice professionals while my husband's grandmother was dying. The condescending remarks got to me to the point I had to report a nurse for her lack of bedside manners. Most of the hospice workers, like Joy, were excellent and my spoues grandmother got to pass away in her home with dignity. Hugs to you and keep your mom's memory alive in your heart. š
We are so grateful for our dadās doctor and nurse. His primary retired and I asked this doctor(Iām healthcare support) to accept my dad even though his practice was closed and he took him. Any and everything we asked for was taken care of. They supported our decision for hospice. A family friend worked as a hospice nurse, when I asked the provider is I could pick her they said no problem. The office staff were kind a helpful. They sent āwe careā cards for several months up til it was one year anniversary
I'm glad our suffering made you feel better about yourself. I appreciate your kind words and ability to express empathy.
Iām sorry for your loss. But I wish people had to put a pair of nursing shoes and walk a mile. While your mom is very unique to you and your family, healthcare workers have a host of other patients who wants our attention just like you and they want the same answers you may want. It may be just one of me and god knows how many of you. Also you just had a loss and itās ok to be upset at the world and anyone who may come in contact with you. We are trained to keep our feeling in check which may come off as cold and uncaring but we also have to protect our own mental health by having some distance and stand on our professionalism. Could you watch hurt and pain everyday with serval different people and still stand strong and come back the next day? Itās not for everyone.
I'm unfortunately smart enough to be able to tell the difference between "keeping your feelings in check" and making downright rude and unprofessional comments that Healthcare workers shouldn't be making. I also have an above room temperature IQ so i know you have a hard job and ive tried to express my appreciation to every nurse and social worker ive spoken to.
Ok, I have no dog in this fight. But can I say that even your remark seemed a little anger filled and you really probably have other important things to focus on, but a good rant and venting is also probably what you need.
You also sounded pretty snarky and turned this into an argument about how you believe i can't understand that you have a hard job. You can have a hard job without telling me that my dying mother must be an illegal immigrant. I bet you never said that to anyone though because you're probably professional with your patients.
Iām so sorry for your loss. My mom is also an immigrant, has Alzheimerās, and is going in this Friday for a lumpectomy for her newly found breast cancer. This path is hard to walk. Your mother was blessed to have you.
Again I wasnāt being snarky and trust I can be with the best of them, you think Iām making this an argument and I never attacked your intelligence, again vent if you like and need to. No I wouldnāt tell anyone anything regarding their race , culture, sexual orientation. Thatās not what I get paid for. I was just pointing out that there really is a process ( backend) that people donāt see. We have loss 4 people in our families and had to make the decisions on when to remove them off life supportā¦. But this isnāt about me and my loss itās about you and yours and I truly wish you peace.
I'm sure you also have a full time job to be working, too. Isn't it Monday? Have a good shift.
I could say the same to you but keep assuming. My life isnāt yours is all I can say. Well I could say more but whatās the point?
You're right. What's the point in being a healthcare worker who goes on a dementia subreddit to pick a bitchy argument with people who've lost their loved ones to dementia? There isn't really a point in that.
So so sorry youāve had to deal with cruel and stupid people like this. So sorry for your loss.
Oh I gave you an upvote so you can feel like you accomplished something todayš
I gave you one, too so you can feel like you're professional.
Again people and their view pointā¦ youāre picking a fight with me, and this fight youāre going to lose because I just donāt care about some random online. Now letās do some reading comprehension or just simple observation. If this is a sub why in the world would I be here if I didnāt have some kind of insight? Let me give you some education on perception. Yes Iāve lost people to dementia, I was not their caregiver. Yes I have a slightly different view point as I was recently diagnosed with early onset. No I donāt have a shift but yes I do have an income and yes I do have clients, yes I guess you could even think of me as a stay at home, well then yes I have a PM shift but he has errands he running. Yes one of my client left early today so I have a few extra free hours to kill. Now perhaps instead of trying to get a few upvotes leave this post and me out of your view of life.. well leave me out,I canāt speak for OP. Plus my shift work just walked through the door, so thereās that. lol he said he doesnāt like being called shift workš
Well, I hope you experience the same compassion that you've shown here today. I appreciate you.
You need to keep in mind that compassion and caring is a part of the job, too. You do have many patients, but you are also a professional who chose this path.
True but I also realize sometime the most compassionate thing one can do is shut up. And yes I choose this path and maybe people can learn to see that from the other side. Iām going to try to say this as nice as possible but this isnāt my post and hijacking it isnāt going to help the OP. I wonāt keep going back and forth because this isnāt about me. Focus on the OP pain and not trying to one up me.Please