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I have been caring for Mom for 6 years. I have always supported her financially, and was taken out of school at 8 years old to keep house for the family. Somehow, I managed to get an education and then a good job, which began my providing financial support to my family. I have very little left, now spending my life savings to pay for Mom's caregivers. Dropping out of work would mean 0 income, loss of the health insurance I need for chronic conditions, and no connections to the outside world. I will likely end up homeless when caregiving ends, unless I keep working. On the surface, I look successful, with a nice job title, office in a good location, etc.


Not a month goes by that a nurse or other upper-level caregiver, always females, doesn't insist I should quit working to care for Mom fulltime. I make it clear the cost to me: loss of health insurance, not enough money for food or medicine for me or Mom, because I'm her financial support, and then, eventually, me living in my car. They shrug their shoulders and say "figure it out," or "you'll be fine!" or otherwise make it clear that it's selfish/unreasonable of me to even think of my own survival. Just to be clear, I am crystal clear that Mom will suffer, too, and they just shrug.


When Mom is in an inpatient facility, they love her for two days and then start demanding I sit there all day and nurse her myself. How is that even legal? They get quite hostile when I say I can't sacrifice myself to that extent; I have already given up all my life savings nearly, and my health is very poor. I go to the doctors maybe once a year, even though I have several conditions of my own that I manage. They make it clear that that, too, is selfish.


What is going on? Has anyone else experienced "care" staff that refuses to help with ordering appropriate care for a patient, then becoming this hostile? I was just told by another visiting nurse that I will do fine being homeless.

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I don't understand, I've never heard of anything like this. The nurses get paid for their time, don't they? Why are they telling you to do their job? Unless Medicare is only covering a certain amount and they are telling you to hire an outside agency or do it yourself for the care that is needed when they are not there? Is that the case? If so, I've had some experience with that. Before I discovered this forum and new anything at all I had some bewildering conversations with nurses and stress-fully came to the realization there are serious gaps in our system people can fall through if they are not prepared, and the help wasn't there from the doctors or nurses. You do not have to sacrifice your future for Mom's care and shouldn't be paying your retirement either. There are ways to get your Mom care without you going bankrupt.
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Reply to mstrbill
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Just say no and start looking into Medicaid and a facility for your mother. Time for you to start living your life.
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Reply to DollyMe
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The best phrase I learned here was "I can't possibly do that".

Stated with conviction and direct eye contact.
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Reply to BarbBrooklyn
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You know, when my mom was in memory care, a CNA who we'd hired to look after mom 1 to 1 ( long story) said to me " why is your mama here if she has a house?"..

The clear implication was that we should hire this lady to look after my mom in her home. And that I should manage all that.

People are looking out for their own bottom lines sometimes. Is that possibly what is going on here?
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Reply to BarbBrooklyn
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HopefulD Oct 6, 2019
Barb, you are probably right, too. It's a combination, I think, of being overworked and seeing someone who can be pushed to take on part of one's workload, and the perverse incentives in healthcare. The facility where a nurse told me to lift Mom singlehandedly had lots of "awards" from their corporate office for running an efficient operation. It's horrible to think what happens to people with no one to protect them in these "efficient" places.
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I am with Barb in asking for more information. Do you live in the United States. I was in nursing for my entire career and I have never heard of anything like this.

If you mother needs care and you need to work then there is of course no question of quitting, and anyone who suggests it is worthy only of hysterical laughter in return. The whole "we can make it work" thing is usually a platitude I only saw from Social Workers desperate to get families to take elders back home. There is no "we" and of course they won't "make it work".
And to be blunt, Nurses cannot "demand" anything whatsoever. Not even a decent wage in some parts of our country.

My real concern here is that you have spent up your funds and your savings in the care of your mother. I am not certain that leaves anything for you, and I doubt there will be anyone to pay for you when you are in need.

I have also never heard of any care facility that expects family to sit by while they provide care for elders at quite some cost. In the case of memory care I would say on average 10,000 a month.

I am quite in awe of the advice, suggestions, and etc that you are getting. And this is the reason I am asking where you are living. There are many elders without family whatsoever, who are cared for in our system. There are many who are cared for when family cannot do so any longer. I think that you are perhaps showing up at the care facility too much, and that expectations on you are becoming a bit unrealistic. That is about all I am left with. I would cut back on visits.
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Reply to AlvaDeer
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HopefulD Oct 6, 2019
I am in the US. You hit the nail on the head, it just never occurred to me: when I was better, I sat in the facility for hours a day. (She rotates between rehabs and home). I had FMLA, and when I didn't, I came after work and stayed every night until late, providing all unskilled care: food service (Mom didn't like the facility's food and refused it), bandaging, etc. So yes, they got real comfortable and used to my being there 4-8 hours a day, nearly every day. And then when she's home, I used to stay home with the caregiver too, several hours, and did all the heavy work till I could not. This might be the reason for the blowback? I can't do it anymore and now they have a challenging patient making demands on them, that I previously shielded them from?
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These nurses are out of their minds and should be reported to someone.

Sorry, but it is not legal to take a child out of school at 8 years old. I'm surprised your family did not get a visit from social services or from the school. How did your parents explain that?

"now spending my life savings to pay for Mom's caregivers. (That's a mistake! Use her money but if she has none, get her on medicaid.)

Dropping out of work would mean 0 income, loss of the health insurance I need for chronic conditions, and no connections to the outside world. I will likely end up homeless when caregiving ends, unless I keep working. [ you also said, I have already given up all my life savings nearly,] (no you will end up homeless if you continue to spend your life's savings on your mom."

Your own health is poor and these nurses are telling you that taking care of your own health is selfish. They all sound like a group of narcissistic people who should not be in the medical profession.

Telling someone they will do fine is insane!

Did you know that something like 40% of caregivers die before the person they are taking care of does? Tell that to those selfish nurses. Also, your poor health shows that you are already heading in that direction and then who will see that your mom is taken care of. She will become a ward of the state if you live in the US.
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Reply to NoTryDoYoda
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HopefulD Oct 6, 2019
"Homeschooling" is completely legal and it's easy to manage the minimal oversight if a child is scared.

My only explanation is that, like in a lot of industries, frontline employees get some incentive to "cut costs." If that means bullying, denying care, etc, then so be it, they get rewarded for pushing as much as they can onto the elders and kin.
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Where do you live? Are you in the US or elsewhere?
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