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Try to ignore these stupid comments and just see them as part of her ongoing illness, not the real person inside. What I want to say is "Don't take it personally" which is such a dumb remark when you are in the middle of it. Hoping you will insulate yourself, even if it means leaving the scene.
Anyway, in the last two days I've been called cruel and stupid - I'd like to leave and drive back to NC early, but will go to the doctor visits tomorrow so that I can definitively tell the palliative care social worker ( the good one, not the bad one) that I am simply done as far as making any arrangements. Today my mother told me to F off in the car when I was taking her somewhere and didn't follow her directions (which were wrong).
I think I would respond to the in the car remark with: OK. Then, well F off...that is quit trying to help. For the person in my life who might say something like that, the one thing that has helped me the most is to realize and really, really accept that I can't really help her. I used to think that I could help her. That I could change her or get through to her. I thought that maybe she could change...and that I could influence whether that happened. I now know that I can't help her. If she changes it will not be because of anything I did or didn't do. I have no control over the situation.
Try to ignore these stupid comments and just see them as part of her ongoing illness, not the real person inside. What I want to say is "Don't take it personally" which is such a dumb remark when you are in the middle of it. Hoping you will insulate yourself, even if it means leaving the scene.
That is the real person inside. Always has been.
Quote:
Originally Posted by Koshka2
I think I would respond to the in the car remark with: OK. Then, well F off...that is quit trying to help. For the person in my life who might say something like that, the one thing that has helped me the most is to realize and really, really accept that I can't really help her. I used to think that I could help her. That I could change her or get through to her. I thought that maybe she could change...and that I could influence whether that happened. I now know that I can't help her. If she changes it will not be because of anything I did or didn't do. I have no control over the situation.
I'm done. She just did it again. I texted my uncle and said I'm out.
Location: Went around the corner & now I'm lost!!!!
1,544 posts, read 3,599,512 times
Reputation: 1243
Quote:
Originally Posted by NM posts
Having breathing issues today. Need to vent.
Virtually every entity of some sort offers "information" and "advice" but no actual help. The palliative care worker doesn't know about medicaid for assisted living. The care manager that my mother refused originally said really only one of the assisted living places might work but gave mixed information about medicaid saying that they generally don't pay for assisted living. This care manager has no problem sending emails about what won't work and I am still waiting for actual help.
My mother says something different every five minutes and tells everyone different things. she is insistent on visiting INDEPENDENT living facilities (not the same thing as assisted) and now has random people picking her up for tours.
I cannot continue to be looked at as the solution provider when my mother is the one who legally must make the decisions and I'm hearing different things from different people, and I'm in another state. and I. Am. Not. Moving. In.
This just doesn't seem like how it's supposed to be. I would at the very least have expected the palliative care social worker to actually KNOW about medicaid and not "presume" as she had told me.
*screams*
Palliative care is a type of care that make the patient "comfortable" as they progress in their illness/age or the patient is dying; it does NOT to improve their health. Now knowing that fact, you can assume no one is really thinking this person will survive much longer, yet some do last for years.
It sounds like your mom goes on these tours for social interaction, a free ride and a free meal...nothing wrong with that when you're lonely or just want something to do. Medicaid doesn't pay for assisted living which runs into the thousands of dollars per month. It may or may not pay for an senior apartment which also may run $700 and up per month but the benefit of this type of housing is it restricted for only seniors, have adapted facilities, planned activities, within a gated community. The other option is a group home where several seniors live together with the owner of the house providing meals, activities and trips to medical visits. I suggest taking her to different senior apartments and group homes so she can have a look at those options. Because as she ages she would have the knowledge of such facilities and make a good decision.
Medicare and Medicaid will change the rules in the middle of the game so that is probably why you never get an answer from anyone...they REALLY don't know and don't want to tell you something that is no longer true. You also have some states have different rules. For example when I went home to care for my mom, a friend told me that in IL, they paid the caregiver $800/mo to care for their family member but in IN where I was taking care of my mom, no such program existed. Go figure??? Other states have programs that will help with housing, home improvements to stay within their homes, free legal aid, low income dental and medical services etc but YOU have to find them. I got free medical exams, OB-GYN exams, bone density testing, deeply discounted dental and vision for myself while in Indiana just because I had no income due to the fact I came home to care for my mom. I found out about this from a lady I RANDOMLY met that worked at such a facility.
Today you could possibly get on NextDoor app and see if someone out there may have some knowledge about your issue, find Legal Aid services for Seniors that can point you in the right direction. Go to Senior Health Fairs which have a ton of vendors trying to educate those caring for or working with seniors.
Hope this helps but I must say it's a "seek and you will find" situation when it comes to caring for our aging parents.
Palliative care is a type of care that make the patient "comfortable" as they progress in their illness/age or the patient is dying; it does NOT to improve their health. Now knowing that fact, you can assume no one is really thinking this person will survive much longer, yet some do last for years.
It sounds like your mom goes on these tours for social interaction, a free ride and a free meal...nothing wrong with that when you're lonely or just want something to do. Medicaid doesn't pay for assisted living which runs into the thousands of dollars per month. It may or may not pay for an senior apartment which also may run $700 and up per month but the benefit of this type of housing is it restricted for only seniors, have adapted facilities, planned activities, within a gated community. The other option is a group home where several seniors live together with the owner of the house providing meals, activities and trips to medical visits. I suggest taking her to different senior apartments and group homes so she can have a look at those options. Because as she ages she would have the knowledge of such facilities and make a good decision.
Medicare and Medicaid will change the rules in the middle of the game so that is probably why you never get an answer from anyone...they REALLY don't know and don't want to tell you something that is no longer true. You also have some states have different rules. For example when I went home to care for my mom, a friend told me that in IL, they paid the caregiver $800/mo to care for their family member but in IN where I was taking care of my mom, no such program existed. Go figure??? Other states have programs that will help with housing, home improvements to stay within their homes, free legal aid, low income dental and medical services etc but YOU have to find them. I got free medical exams, OB-GYN exams, bone density testing, deeply discounted dental and vision for myself while in Indiana just because I had no income due to the fact I came home to care for my mom. I found out about this from a lady I RANDOMLY met that worked at such a facility.
Today you could possibly get on NextDoor app and see if someone out there may have some knowledge about your issue, find Legal Aid services for Seniors that can point you in the right direction. Go to Senior Health Fairs which have a ton of vendors trying to educate those caring for or working with seniors.
Hope this helps but I must say it's a "seek and you will find" situation when it comes to caring for our aging parents.
I just want to make a corr croon regarding Medicaid. Medicaid most definitely does pay for assisted living. They won’t pay the full amount, so many won’t take Medicaid patients but many will. My mothers assisted living facility agreed to allow her to stay once on Medicaid once she paid privately for at least 18 months. She’s been there for 5 years, the last 3 or so on Medicaid. They send us a monthly bill for over $9000.00. Our portion is $1700, which is my moms income minus $40.00. I don’t know how much Medicaid gives them but I’m sure it’s a fraction of the bill.
The facility I work in now takes Medicaid even if the person can’t private pay first, although it’s much easier to get without funds if you’re there for rehab first.
We hired a geriatric care manager who found facilities I would except my mom on Medicaid and that was with the places we toured. The facility I was working and then declined my mom because they knew she would run out of money and they did not want Medicaid patients, however our care manager was able to give us a list of half a dozen very nice places who all said my mom would be able to stay once she spent down to Medicaid.
Location: Went around the corner & now I'm lost!!!!
1,544 posts, read 3,599,512 times
Reputation: 1243
Quote:
Originally Posted by ocnjgirl
I just want to make a corr croon regarding Medicaid. Medicaid most definitely does pay for assisted living. They won’t pay the full amount, so many won’t take Medicaid patients but many will. My mothers assisted living facility agreed to allow her to stay once on Medicaid once she paid privately for at least 18 months. She’s been there for 5 years, the last 3 or so on Medicaid. They send us a monthly bill for over $9000.00. Our portion is $1700, which is my moms income minus $40.00. I don’t know how much Medicaid gives them but I’m sure it’s a fraction of the bill.
The facility I work in now takes Medicaid even if the person can’t private pay first, although it’s much easier to get without funds if you’re there for rehab first.
We hired a geriatric care manager who found facilities I would except my mom on Medicaid and that was with the places we toured. The facility I was working and then declined my mom because they knew she would run out of money and they did not want Medicaid patients, however our care manager was able to give us a list of half a dozen very nice places who all said my mom would be able to stay once she spent down to Medicaid.
This fact does vary from state to state. So far in the state in which I live, I have yet to see any ALF in my area accept those on Medicaid in their facility; the senior apartments will because its based on income. The goal of most ALF in my state is to make as much $$$$ as possible so giving a room to someone that really can't pay the full amount is not their goal. They want someone who can pay the full amount.
I hope you won't get surprised at the end of her life that this ALF comes after you for the outstanding amount just because you are/ have the POA...READ THE CONTRACT REGARDING THE POA RESPONSIBILITIES OF PAYMENT. They are sending you a bill showing you the $9K owed? Unless they are sending you an itemized bill showing every detail of the bill showing you what has and has not been paid and by whom.
I have had several patients I treated that left ALF because of the cost of living there and the nickel and diming them because they asked someone to help them with laundry, help with a bath, bringing meals to their room,etc...they simple ran out of funds.
OP I'm going to give you some hard advice to follow but that is needed.
The best solution in these situations is always to remove your emotions from the situation. Especially when your parent is being uncooperative. Let them sabotage themselves because legally there's nothing you can do about it until the Doctor approves the POA. You have to distance yourself emotionally. As impossible as that sounds it must be done. You are the parent now and now the roles have reversed. Just because a medical professional doesn't deem them clinically mentally invalid - Does not mean they have not become delusional and regressed to a juvenile state of mind. These things happen gradually and not overnight. Your mother's cantankerous capricious behavior (unless she's always been like this) is the tell tale sign the mind has started to degrade.
I'm warning you - Do not sacrifice your personal health or job for this. Most employers don't care and aren't sympathetic to anything going on in your personal life. They are heartless and WILL NOT HESITATE to get rid of you in the middle of all of this. They don't care how you will pay for the care manager or lawyer. When she's gone and you've got to pay for the funeral expenses you will need that JOB to pay for it. You need money. Prioritize the job first and your mother second. Make sure to let the Doctor know you are in NO financial position to constantly attend to her needs you have to work. When you provide the social worker information depending on the situation they are usually NOT helpful. But still make sure they know clearly what your situation is and they will eventually stop calling and do the legwork themselves. You just have to keep repeating yourself and remain stern and strong. When you appear weak in these times (as any human would) callous healthcare administrative professionals see this as an opportunity to prey upon you and get you to pony up as much as possible or try and manipulate your emotions to get you to get your parent out of their books and make them some other facilities problem. As another poster said you'll need to get in touch with an advocate and someone who specializes in this situation which is VERY common but nobody at Hospitals or the Government in general is tasked with streamlining this process. They think everyone is rich and hiding money and trying to milk the system. Expect empathy from no one! Assume they are there for one reason only : To Bill.
My mother has already been there and done that with my grandmother and she is not even sick nor does she have dementia. We went through the POA and nursing home debacle with my Grandfather during his last days - It didn't last long as he had wernicke's encephealtis which when combined with severe alcohol withdrawal and insufficient palliative care and nutrition is usually fatal. He had unresolved issues from childhood abuse and in that generation you did not talk about your problems. So that contributed as he did not have the will to live without alcohol. But improper care certainly contributed. They do not adequately treat the disease in most nursing homes (ideally you need weekly IV solutions of B-vitamins because your gut and pancreas typically can't absorb B-vitamins orally after 30-40 years of heavy alcohol abuse). In general they don't treat any disease well that doesn't require just daily pills. Without B-vitamins your brain literally atrophies.
I am not sure how people quit their job to provide care - When care costs money. If she doesn't like it she should have thought about how she would be living now when she was younger. Don't even think about quitting your job unless you want to end up homeless after she passes away - Because it doesn't sound like your relatives are involved or care about the stress you're going through - They aren't helping you now and won't help you later either.
When the POA is finally available throw her in the best facility you can get her in and ask other relatives in the area to pitch in. If they don't - Cut them off - PERIOD. When Christmas time comes around do not answer calls block their number. You cannot take off work excessively to take care of her - You've got to worry about your own life and how YOU are going to live when you get to that age.
This fact does vary from state to state. So far in the state in which I live, I have yet to see any ALF in my area accept those on Medicaid in their facility; the senior apartments will because its based on income. The goal of most ALF in my state is to make as much $$$$ as possible so giving a room to someone that really can't pay the full amount is not their goal. They want someone who can pay the full amount.
I hope you won't get surprised at the end of her life that this ALF comes after you for the outstanding amount just because you are/ have the POA...READ THE CONTRACT REGARDING THE POA RESPONSIBILITIES OF PAYMENT. They are sending you a bill showing you the $9K owed? Unless they are sending you an itemized bill showing every detail of the bill showing you what has and has not been paid and by whom.
I have had several patients I treated that left ALF because of the cost of living there and the nickel and diming them because they asked someone to help them with laundry, help with a bath, bringing meals to their room,etc...they simple ran out of funds.
They don't advertise it, and many won't take straight Medicaid (i.e. you need that 'carrot' of ability to private pay for a specified amount of time) to get in the door, but I would be highly surprised if none in your area take it. Most ALFs hate empty apartments and when the census is down they will take people they might not otherwise. I've worked in ALFs and SNFs in only 3 states so of course can't speak for the country, but my mom's for instance is a chain with facilities across the country. Most are. I have though worked for several including the one I'm in now, who have allowed rehab patients in the skilled nursing unit who are determined to be unsafe to go back home, to transition to the assisted living and helped them apply for Medicaid to do so even without ability to private pay for very long.
The facility discussed the Medicaid process with me, and worked with me when it took longer for her Medicaid to be approved but she was already spent down. They aren't trying to trick anyone. Their policy officially is once you're on Medicaid, you have to share your apartment with someone else on Medicaid, but so far no one has asked my mom to move to another apartment nor moved anyone else into hers, and it's now been several years.
Yes, my mom's place does charge for extras, and I pay for them when she does. She developed a habit of asking for room trays rather than eat in the dining room (she has hermit tendencies) which I had to out a stop to, and of course I pay for the hairdresser and we do her laundry, but everyone involved is well aware she's on Medicaid and knew before we moved in. Their policy is after 18 months of private pay, you can stay under Medicaid. Other facilities required 2 years of private pay. My mom was actually able to for almost 3 years.
There are very few people in any given area who can pay $9,000 or $10,000 a month for a decade or longer, and that is the situation today with people living longer. If facilities didn't allow people to stay once they run out, they would have half the building empty, as well as a very poor PR appearance. Of course many facilities will not take Medicaid and will kick people out, but that is all disclosed upfront, and anyone who didn't ask about that before moving in is foolish.
They don't advertise it, and many won't take straight Medicaid (i.e. you need that 'carrot' of ability to private pay for a specified amount of time) to get in the door, but I would be highly surprised if none in your area take it. Most ALFs hate empty apartments and when the census is down they will take people they might not otherwise. I've worked in ALFs and SNFs in only 3 states so of course can't speak for the country, but my mom's for instance is a chain with facilities across the country. Most are. I have though worked for several including the one I'm in now, who have allowed rehab patients in the skilled nursing unit who are determined to be unsafe to go back home, to transition to the assisted living and helped them apply for Medicaid to do so even without ability to private pay for very long.
The facility discussed the Medicaid process with me, and worked with me when it took longer for her Medicaid to be approved but she was already spent down. They aren't trying to trick anyone. Their policy officially is once you're on Medicaid, you have to share your apartment with someone else on Medicaid, but so far no one has asked my mom to move to another apartment nor moved anyone else into hers, and it's now been several years.
Yes, my mom's place does charge for extras, and I pay for them when she does. She developed a habit of asking for room trays rather than eat in the dining room (she has hermit tendencies) which I had to out a stop to, and of course I pay for the hairdresser and we do her laundry, but everyone involved is well aware she's on Medicaid and knew before we moved in. Their policy is after 18 months of private pay, you can stay under Medicaid. Other facilities required 2 years of private pay. My mom was actually able to for almost 3 years.
There are very few people in any given area who can pay $9,000 or $10,000 a month for a decade or longer, and that is the situation today with people living longer. If facilities didn't allow people to stay once they run out, they would have half the building empty, as well as a very poor PR appearance. Of course many facilities will not take Medicaid and will kick people out, but that is all disclosed upfront, and anyone who didn't ask about that before moving in is foolish.
A word of caution about the bolded. A few years ago my state changed some laws and it is now a lot easier to kick people out of facilities, even if they were promised a Medicaid bed after their money ran out (your state may be different). My best friend's mother planned ahead and even went so far as to have legal documents/agreements with her nursing home that she could stay in a Medicaid bed after her money ran out in four years. This was handled by an attorney, signed by the facility and everything.
However, when the time came that her money ran out the facility did not have any "Medicaid beds" available as they were filled with other people. The facility gave her one week to get out. The family could do nothing at all to prevent that. Apparently the legal agreement could not be enforced if there was not a Medicare bed available at that point in time. (The facility had something like 120 beds of which only 4 were allotted as available for residents on Medicaid. This is pretty common with the better facilities in my area).
By this time her mom's dementia had gotten really bad and the only place had a vacancy and would take Medicaid from the beginning was a real hell hole.
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