So mom moved to SN floor after rehab and more confusion and disorientation set in. She is wandering around unit yelling quite offensively at other residents; she is now touching others patting them on the back or arm, (that has been more when she is "friendly" and not yelling but still an issue) which is concerning to other families. She is on depakote twice a day (started a week ago) and remron at bed time. They are hoping that when she is on the depakote a little longer things may change, but who knows. They say that they cannot distract her when she gets this wound up and don't have the staffing to constantly give her the one on one attention. They asked if she had any means to hire a one on one aide to keep her busy. Today they said she really needs one at night, basically when she starts to sundown in the late afternoon, until bedtime, and she is not going to sleep early like she was before but staying up and wandering. She seems to have no sense of boundaries, goes in other rooms, and can only participate in activities sometimes. She is one of the few ambulatory people in the unit, most others are mostly in their wheelchairs, or just don't move. She does not watch TV, does not seem to recognize anything in her own room, will not self entertain. We've giving her projects to do, but then she starts to look for "things" that were not part of the project. I have given them "about mom" pages and reached out to her former social daycare provider who said that they were staffed specifically to be able to give the seniors lots of direct attention. They are trying to give her "jobs" but this still does not address the times when she cannot be distracted and is beyond reason. Neither my mother, brother, nor I have the means to pay for an aide - in our area it starts at $15/hour but, of course, I am trying to figure something out. I have been told to be very careful about this and setting a precedent. I am worried about her in general and continue to wonder how it deteriorated in this way. I worry about them asking me to remove her when her paperwork with medicaid is not settled. I have not taken her "out" for a ride (she always wanted to "go out for a cup of coffee) because we just don't know how she would behave and what it would mean to get her back in. I will talk to them about it, but I sort of worry if I take her out, they won't let her back in. To visit her is a jack in the box exercise and I know that I could not do that every night for 4 - 5 hours as they are suggesting after working all day...and I worry an aide would lose patience pretty quickly as those that have been assigned to her look at me with such an exasperation. I get it, and am contacting resources but the need is immediate.
My father walked with his own two feet into a memory care unit we had chosen for him (with the help of a geriatric care manager we hired--waste of money, but that's another story). His application for Medicaid was pending when he got there. The second night he was there he wandered into another patient's room and took a swing at the guy. My dad was immediately sent via ambulance to a psychiatric hospital for a medication check. They notified my mother while he was in the ambulance. At the hospital the "medication check" resulted in him being prescribed such a high dose of Haldol that by the time he returned to the memory care facility (5-6 days later) he was never able to get out of his wheelchair again. When I complained to the center director that they had essentially restrained him with chemicals his response was, "Well your dad did something he never should have done" (take a swing at the guy). I know these facilities don't have the resources to follow each ambulatory patient who restless, agitated, or sometimes violent, but it was really awful to see my dad physically reduced to invalid status within a week. Meanwhile, while application for Medicaid was still pending, We moved him to a kinder place several months later that was much better managed and had CNAs on staff who built a healthy and upbeat rapport with him. They lowered his Haldol so he could smile and feed himself again and was no longer a zombie. He never walked again though which is still hard to think about. So lessons learned: a) some facilities can handle more difficult patients better than others; b) pending Medicaid status is not a barrier to finding a new facility; c) stay on top of the medication situation and understand what they are giving her and what the intended effects are; and c) get to know the CNAs and nurses and bring in treats from time to time.
My dad lives in a place where a few that walk wander all day. They are safe and they are free to do as they please with no extra help except at meals (they feel to make sure they are eating). There are lots of places to sit down for these few, too, to rest or nap. Other rooms are locked so no one can enter when residents are in activities or out of their rooms. It works quite well.
Depokate worked quite well for my dad. It takes a bit to find the right dosage...(where did they start her off?)
It takes 1-3 months for most to settle in a new place. There may always be a few that are more high maintenance than the others. The director should know that!
Be transparent with the director that you don't have the means. Get the doctor on board. Check her for UTI to rule that out, too.
All the best!!
And that this NH is not designed to deal with those that need a higher level of psych care and medication monitoring. Depakote to me is an across the board RX to quell bipolar / mania & will cause drowsiness & Remeron for depression and to stimulate appetite & helps once you fall asleep to stay asleep. (( My mom went onto Remeron when she moved into IL and for her it took about 2+ weeks to fully take but it did quelled her anxiety, slept for the most part throughout the night and definitely increased her appetite; it’s a super low cost generic too, which is a plus for payment by Medicare. My mom stayed on Remeron when she moved over and into a NH and remained on it till she went onto hospice.))
To me, the sticky part will be how mom’s stay is being paid for. You mention she was in rehab, so if that rehab was from a post hospitalization, then her first 20/21 days 100% covered by MediCARE. Then afterwards if she’s not progressing in rehab, she then goes from rehab benefit to regular NH section & that’s either private pay, LTC insurance or Medicaid. You wrote she has no funds to pay for extra care, so I’m guessing that mom has filed for Medicaid but application not yet approved, correct?
If so here’s my thoughts... the issues for those who just recently applied for Medicaid runs both ways... for the NH AND for your mom....
- the facility needs to have her continue as their resident so when she’s finally finally finally cleared eligible for Medicaid, they get reimbursed 1st & foremost & that’s also a part (in addition to helps no mom settle) of why they want you to hire & pay for a shadow for mom as it enables them to keep her there.((Medicaid eligibility took 5 & 1/2 months for my mom)). So this NH is first in the line for Medicaid to pay them...
- if she’s not cleared Medicaid, other facilities are going to likely be hesitant to accept her as they didn’t get the opportunity to review her documentation that accompanied her Medicaid application to determine if they would accept her “Medicaid Pending”. So a new NH may not do “Pending” but require private pay till ok by Medicaid.
- plus for your mom, she’s may be viewed as non-compliant for care.
- if mom has allowed for the NH to become her payee for her SS and other retirements, they are getting her $ every month and using that $ for Medicaids required copay. Changing SS (& other retirements) from old NH to a new NH will not be simple. SSA does not recognize DPOA, so thats another hurdle. If your mom has not redirected her SS payee status, DO NOT LET HER DO THIS. Again do not let mom sign off to have this NH become the payee for her SS, etc. The NH cannot required this to be done; You as mom’s DPOA can write a check to the penny for the required Medicaid copay from her bank account that gets her SS etc. checks. This way if she needs to move to a new NH it will enable her to pay the required Medicaid copay to whatever NH she is at.
If you find your going to move her, pls post that as a new ? as folks will have suggestions as how to do this.
Medicaid follows the person enrolled. So if she moved to a new NH, when she finally clears eligibility, the reimbursement goes to her at the new place and then there’s going to be a clawback done for old NH to get paid..... it’s cumbersome plus happening months later, so old NH isn’t getting paid Medicaid reimbursement till forever.
If you cannot afford an aide, make that clear. Don’t try to be nice and say your trying to find a way. She’s a resident of this NH, they have to find a solution. The nuclear option would be they call the police to have a Baker Act removal of her. Although that may sound scary, it may be a good thing as it places mom for a psych evaluation at the hospital. If the old NH tells the hospital discharge planner (usually a SW) they cannot take her back as she’s beyond this NH level of care, then discharge planner has to find a place for her somewhere. They may try to have you take her into your home me to live with you, so gird up to say absolutely NO! to that. The Medicaid application still would be sticky but at least she would move into a facility that hopefully can deal with Geri psych residents. Good luck in this.
My mom too had to have a caregiver, that she paid for, while in memory care, off and on over two plus years. Mom required more care than facility could provide. Staff have many residents to care for, other than mom. Eventually, nothing helped mom and she was kicked out. She ended up in a much smaller care home which was better for her. But, she still needed the additional caregiver from time to time.
A Geriatric psych hospital would help to determine if there is a med combo that would help with her behaviors. My sympathies to you, sounds like my mom. Some people just cannot be helped permanently, it is always a challenge to find meds that will help.