What happens when the money runs out for round-the-clock care for dementia?

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tedleimbach Asked May 2019

What happens when the money runs out for round-the-clock care for dementia?

My dad is a young 70 year old who is extremely able bodied and in fine physical health EXCEPT for the fact that he has advanced dementia with aggression and wandering. I've now learned that memory care facilities, despite sometimes being called "locked" dementia units, are not actually locked due to fire codes. It seems that most people in memory care are relatively frail, so the concept of someone being able to literally push open the door, set off the alarm, and run out makes my dad a liability, and this level of physical capability to elope from the facility is not actually common.

So my dad apparently requires an additional "private duty aid" to sit there with him 24/7 and make sure he doesn't run away. Obviously this is extremely expensive, and will drain all his assets in no time. What happens when all his money is gone? We've heard a number of rumors that SOME facilities will allow residents to stay and will somehow find a way to bill Medicaid, despite the fact that no memory care facility advertises this. Has anyone dealt with the draining of assets and the process of what comes next? Obviously people will not be thrown on the street, but I'd like to know how it all works.

Alzheimer's & Dementia Memory Care Paying for Care

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score 0 · Answer 1

While state regulations may vary, I am perplexed by this situation. Even if there were a fire or other emergency, so everyone needs to get out, clearly those with dementia would need someone to find/escort them out. You can't change regulations, but I would determine first if this IS a regulation. Meanwhile, perhaps inquire at other facilities to see if there is one that can remain locked OR has better oversight for those who are 'escape artists.'

The facility we chose has locked and alarmed doors. The staff need to use a fob to unlock the doors that allow egress (central garden area doors excepted, as there is no way to leave the premises from there.) Mom only "tested" the doors when she had a UTI and was adamant she needed to go home as she had guests coming. Otherwise she doesn't bother with the doors.

(some NH do have memory units, however my understanding is that in general NH is for those who require skilled nursing care, not just oversight for dementia - they are, in general, more expensive too, given that they would need more nurses for that skilled care.)

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score 0 · Answer 2

It sounds like your dad is in a large facility. Look into getting him into a small (6 bed) "Residential Care facility for the elderly" or RCFE. The cost is much less that the corporate large places and he will get better care if the staff is competent. They should not be charging you extra money, but rather have the door alarm on. We are not allowed to lock them in, but the door alarm help in small homes as one can get to them fast. Sometimes residents try to escape when they want to go for a walk, or are new and need to settle in. The staff should be taking him for a walk. As the disease progresses they sometimes stop wandering. Get him a bracelet from the Alzheimer's association and inform the local police department that he is in their area.

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score 0 · Answer 3

When assets are used, he shoukd be eligible for Medicaid.
I had premium insurance including long term care. It was useless because I kept Christy at home.
I had to enroll her in Medicaid when I retired early to care for her.
Medicaid in this state is exceptional and will provide 24/7 care in a facilty or in her home, if needed.
However, there are no facilities capable of her care. The managed care health plans deceive and manipulate to win the contract bid, then do as they please.

We had to relocate family members from other states to be home care attendants.
They are paid by Medicaid for 3 shifts 7 days per week.
That is Congress intent to keep her out of a facility.
I am respecting our much criticized Congress.

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The OPs problem isn’t Medicaid eligibility, the problem is that in his city/state it is difficult to get a bed in a facility when you are on Medicaid.

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score 2 · Answer 4

Money can be drained quickly. It would be best to ask the trained medical professional, i.e. social worker and attorney on which course of action to take.

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score 0 · Answer 5

I don't know where you are but in California my girlfriend's hubby was I a lockdown facility. Very beautiful,good care, it had a double fence around it. Both inside and outside fences had locked gates. There was a key for EMS.

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score 1 · Answer 6

I'm in the same boat with my mom. She's an exit seeker and the MC charged and extra $300/month because of it. It's so expensive. I'm not sure what will happen when her money runs out in a couple of years. She'll have to go on Medicaid and the MC she is in now doesn't accept Medicaid, so she'll have to move to another facility. I don't know the timing of all this? When do we apply for Medicaid and start looking for another facility? What happens if there's a waitlist for the facility yet she can't afford the MC anymore?

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score 6 · Answer 7

Where my mom was, the residents all had ID bracelets [like at hospitals with name, room number & colour coded for different issues] that had a proximetry sensor so that when a resident went too close to a door the alarm would go off - this system was for all & there was a code to shut off alarm that the staff used - ask if your dad's place has this or is going to get it as that seems the easiest & most cost effective way - except for the main door all doors opened into lovely gardens that were fenced in with chain link fence [so as to minimize visual blockage] & main door was beside the receptionist & bookkeeper to monitor that door

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score 1 · Answer 8

My daughter was a CNA in a NH in the memory care unit. One of the posts per shift was to sit by the exit doors. Naturally, other posts were to tend to the patients and the wanderers. One of my neighbors is at this facility now and she is a big escape artist! She never managed to escape and she’s been there for over 2 yrs. This was my daughter’s favorite area of the NH to work. So the aides and others who work there are very good with the patients and I don’t think you should be concerned about him in the memory care unit.

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Good to hear that there are places with trustworthy and caring workers... Thanks 😊

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score 4 · Answer 9

Please check into other facilities. Even check a different state. There may be different rules.

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score 2 · Answer 10

A good nursing home will take care of your dad, even when his money runs out. That's when Medicaid takes over. I volunteer at one of these amazing places with hard-working, dedicated people. Take action now and find a place near you if possible. Then tell your dad that you will visit him every day. Now...that might not always be possible, but do your very best to make that happen AT FIRST. You don't want to make him feel abandoned. Get in there early the next (first) day. After a month, he will feel right at home. I would still keep visiting him. When my mom was in a nursing home, I would even take her on vacations with me and to the movies and on car rides. Don't do that too soon after you have placed him in a nursing home yet, and ALWAYS make sure he knows that you will be bringing him back to the nursing home afterwards. If you do not think that you can physically get him back out of the car and into the nursing home on your own, alert the nursing staff in advance. This might be hard on your heart at first, but your job is to keep your dad safe. Do the best you can.

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score 4 · Answer 11

It's not sustainable. I know the situation, too, with my dad.
I finally moved him into a small senior group home.
A residence transformed in a home. There are alarms on all the doors.
2 to 6 ratio days. 1 to 6 midnights.
If he calls out, they can hear him.
It's a god-send....
Not all the bells and whistles, yet he's no longer interested in all that...
They do engage with residents during the day to keep them occupied.

All the best to you and yours

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score 0 · Answer 12

We had the same challenge. Sounds like your father is in Memory care AL. If it was the dementia wing of a NH then there is no 24/7 charge. I'm a little confused because Medicaid was mentioned but I read it as your father is private pay. Also Medicaid does not pay for any form of shadowing so a facility could never bill for this. It is not only your father getting out of the facility that is their concern - it could also be he is wandering into areas he shouldn't be or showing agression towards their other residents they also need to protect. Your father if private pay won't be thrown out on the street but your family will get a discharge letter once he runs out of funds for the 24/7 shadowing. Also look in the Admissions contract from when he first moved in. It will be in there as well. When the money truly runs out it is time for a NH and Medicaid. Sorry. It's not an easy situation.

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score 11 · Answer 13

If this dementia care facility isn't able to deal with typical dementia issues, you need to think of moving your dad to another care home. It is THEIR job to keep him safe without your having to pay a small fortune because they are unable to do this. I would love to know the name of this place.

Helpful Answer (11)

^^THIS!^^
You should not have to pay for 24/7 shadowing in a MC facility. It would be cheaper to have him in the alz wing of a SNF.

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score 3 · Answer 14

When a resident of my mother’s Memory Care tried to escape, the alarm sounded. It was so loud and accompanied by a very loud buzzer and a fire alarm like bell clanging. Everyone who was available headed for that zone and no one was “strolling”. They were either at a run or a very fast walk. No one who was able to get out that door ever made it more than a few yards.

Find out for certain and not from rumors what goes on. I can say that the facility told me my mother needed an aide to stay with her. It was self-pay and $20 an hour. I finally put an end to it when she proved, at least at that time, not to be a flight risk. When they put wander guard ankle monitors on her and she cut each one off, we moved her to Memory Care.

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$20-an hour?
Branwow, I was hired to "babysit"
A patient in NH.@ $8- AN HR.
goodness, must they profit families to death!!!

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score 6 · Answer 15

I'm surprised that a MC unit wouldn't have a system, it isn't that uncommon for dementia patients who need MC to be physically fit and in fact fleeing is often the reason families can't do it at home any longer and place a LO. The facilities around me that take dementia patients, some are mixed some just MC, have alarms. The patients that are a flight risk wear a bracelet, anklet or pendant that set's off an alarm when they go through any of the doors outside. When I was working rescue we had to remember to look for and remove these when transporting a patient to the hospital and more than once crews set off the alarms! These days they probably have trackers and can identify each patients exact location as well as deactivate it for a particular patient when the ambulance is called or family takes them out. I'm surprised any MC facility wouldn't have some form of this.

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What happens when the money runs out for round-the-clock care for dementia?

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