As per my other thread my mother's caregivers of two years quit around two month ago due to agencies no longer paying OT. My mother went from two caregivers that were okay with working 12 hour shifts to five caregivers.
My mother has not adjusted to the new aides. We have gone through two agencies so far. With the help of a friend my mother was able to get 168 hours a week. She cannot do live in since she does not sleep throughout the night. She would not give the caregiver 8 hours of sleep.
We are currently exploring medications her assessment for psych will be in Feb until then her PCP and Nuro will not give her anything.
Her current caregivers keep citing that my mother tells them no so they cannot force her. I tell them she has dementia of course she is going to say no. She still needs to eat, and stuff.
I have been told it she tells the aides no then technically they don't have to push the issue. Oddly enough they also refuse to take her for walks when she asks because they claim it is too cold or unsafe.
All they do with her is watch TV. I have reported them to the agency but then I am told if I keep complaining they will drop the case because they cannot staff it. They suggested hiring people myself via medicaid. Problem is as I told them they don't pay worth a damn no one I know will do said job for what they pay.
Placement is technically not an option without me abandoning her so to speak. Her needs can still be safely met in while being in the community. As per how I got her hours I have a friend that was able to represent her and got her hours through the fair hearing process.
Since it comes up often from social workers and stuff. No I do not have family that is willing to help. Also no her old caregivers are not willing to keep working for less than 5k a month. Which is what they made with OT.
Open to any suggestions outside of placement. I have already toyed with placement and had her do a medcaid assessment via her MLTC for placement no one accepted her assessment due to stating she needs a 1to1 and complete hand over hand care. Also does not help she lacks a skilled need cause I was informed dementia in itself is not considered a pure skill need in itself.
You had a friend who advocated and fought for your mother to receive 168 hours a week for round-the-clock caregivers, in your home, I assume, paid by Medicaid.
Unless you "abandon" her.
As far as the Medicaid case manager is concerned, your mother's needs are being met. But they are not.
I think you will have to abandon her. Tell the case manager you can not safely manage your mother's care in your home, and the care workers are not able to provide adequate care.
It's not clear to me what exactly your mother's condition and needs are. And I don't quite understand your dilemma with the medicaid assessment for LTC placement. Perhaps you are looking into the wrong level of care for her needs (?), because there are many placement options which offer differing levels of care, and they have their own rules to determine if a patient is a suitable fit.
You mention skill needs. If she is incontinent, or has a medical need, or can not manage her own Activities of Daily Living, she should qualify for long term care in a skilled nursing facility.
You have taken on so much! And you have become so entrenched in the drama that has become your life, it would do you good to take a step back. Take a break from the day-to-day worries. Give yourself permission to let go and let the caregivers take care of your mom, (or not) for now.
Make a plan that is in your best interest and your mother's best interest.
Call the medicaid worker and tell them you are unwilling/unable to meet your mother's needs at home, she needs to be placed in an appropriate care facility.
If you are going to continue her care at home, and she liked the previous two caregivers who quit, could you possibly hire them to be paid through medicaid, and "supplement" their income with a weekly cash bonus paid by mom?
I can So Relate to your frustrations with caregivers who do nothing! I, too, have a respite caregiver for my husband who asks the client what he wants. And he doesn't want that, so she does nothing. She sits on her behind watching TV while scrolling through her phone. It's just not worth having her here, in the way. I cut her days/hours from 3 days a week, to 2 days a week, to one day for 3 hours. Good luck finding someone who will do more. As long as they are being paid for doing nothing, why should they do anything more?
I guess my husband and I have been lucky so far in that the service industry employees we use (our housecleaner of near-20 years; landscaper; grocery store staff) have been pretty reliable. Of course, our area of the Pacific NW is high wage (and high cost!) which may help. We haven't needed caregivers YET, and that may be a whole different, and likely discouraging, scenario.
Know it is far from ideal but many caregivers cannot live on a single 40 hour case many work two or three cases.
If that's what is keeping her out of managed care, then that's where I would start - try and get whoever made that determination to change their position.
Cause by most state guideline Medicaid does not cover safety and supervision and gives them an out yet also limits what a family can do because if they disclose certain behaviors that require one-to-one it puts the onus on the family.
That just doesn't sound right to me.
You also say mom "needs a 1to1 and complete hand over hand care", but then say "does not help she lacks a skilled need cause I was informed dementia in itself is not considered a pure skill need itself". These statements seem to be in conflict with each other. Have you asked the friend who helped you secure the 168 hours of Medicaid funded care to help you with the assessment for mom's entry into a facility? If this friend was able to know the language needed to obtain paid 24/7 care at home for mom, (s)he might be able to help you get mom placed.
Side note her base assessment only granted her 45 hours.
He cannot help with the assessment since that is done via the MLTC we have no control over her assessment.
Knowing the language for getting homecare hours differs from getting her placed in a facility. Her Medicaid assessment states 1 to 1 for an example. If the facility accepts her assessment and allows her in with that that means they accept they will provide a 1 to 1 which will not happen.
Best way I can explain it. Fair hearings have a human element. A human element can be persuaded. The hours also granted by fair hearing do not last forever. Since often if the hours are granted based around emotions or empathy depending on the person over seeing the hearing. The hours themselves cannot be justified under Medicaid guidelines. They are technically not official Medicaid approved hours.
Same with even medical external appeals but those bare a little more weight. The hardest part was getting the 12, but once you get the 12 is easy to get the 24 since you just need documentation the client cannot sleep, and even better if that client has a history of falling while on sleep aides. Since the argument can be made that the chemical intervention poses a greater risk to the person when an alternative is available that poses less risk. In this case physical caregivers.
That is how you can bypass the safety and supervision aspect of getting HHA hours via medicaid. Unfortunately none of that works with Medicaid placement.
Since we have no real control or say what goes on the assessment that is sent to nursing homes.
To start with, any of these agencies? They are usually contracted; they are usually run by corporations. They are very much for profit. I think that they can also no longer find people who wish to work in caregiving given the other jobs now available to them. So, given they do not pay well, and are not preferred positions, they do not attract the best employees.
As to those best employees--where are you finding them these days? Grocery store? Not at mine. Transit? Not on mine. Retail stores? Not on mine with a few exceptions (I love love love Trader Joe's).
I think it's a sign of our times, personally. People say they will show up and don't. And truly don't even bother to let you know, and that's whether they are coming to fix your mom, your leaking roof or your mom.
Wishing you luck.