My 84-yr-old MIL has finally been found to be suffering from some sort of dementia after years of issues and now rapid cognitive decline. PCP has ordered in home evaluations, PT, OT and medication mgmt reviews. We are waiting for the DPT of Aging appt to schedule appt to get precise diagnosis. Mean time, we've moved her in approx a year ago and she essentially took over top floor of home for safety. It is a 24/7 endeavor, as literally, daily, something else occurs cognitively, she doesn't sleep at all, and definite sundowning, etc etc. Literally told yesterday that the facility recommended to us to get her socialization, light care and transportation to appts, etc. does not fit our needs. She has medicare and a supplemental insurance. We keep landing in this place where she doesn't qualify for most of these services because they are Medicaid driven or you could "self pay" at a rate of full nursing home. She has a little bit we have been saving for her for when we know she will have to go into a facility. She only has about two years worth, not counting anything surgeries or emergencies that will happen. We continually find ourselves "in limbo." She has too much for real assistance and not enough for all the "self-pay" options for in home assistance. Then that brings us to the next level of issues which are that she doesn't have "the diagnosis," yet which tells everyone the level of care she "needs" right now. She physically can still move around fairly well, and lucid enough most times to fight and argue. She is not totally bid ridden or unable to function. So, in every way, we feel so trapped in the middle of everything seemingly with nowhere to turn. We haven't had more than a couple of consecutive sleep hours in this year, and I have already suffered a mild heart attack. The physical and mental toll this has taken is surreal. My husband, her son, is in denial about the degree of decline and care needed. So most has fallen on me. I can't seem to find anyone willing to take time to HONESTLY tell me which road to take and in what order. Our alleged social worker gave us the reference to the PACE facility and said how amazing all the services were, down to transport back and forth for which she is not eligible unless we pay out of pocket at ridiculous rate for daily care. IT seemed too good to be true, as our prayers had been answered. Not the case. So, when she realized she made a mistake, and it wouldn't work, we were given a sheet of paper with numbers for in home care in an "oh well, you'll figure something out" sort of way. We have no support system. This is all new. Horror stories about keeping track scheduling, and cost of the in home people. How to know who is trustworthy and exactly what level of care she needs at this point? Financially, this could cripple us to the point of having to sell our home. But, if we can't get her some help and us some sort of respite at least a couple times per week, we may both expire before she gets to the point of full time care in a facility. We are heartbroken, exhausted and frustrated. Any advice navigating this process and in what order is valuable. Thank you.
Secondly, this is how you get her level of necessary care diagnosed by her doctor.
You tell them everything you are telling us. The sundowning, the up all night, the wandering, the fighting and arguing. Hold nothing back.
Next the social worker who told you "oh well, you'll figure something out" needs to not only be reported to their supervisor and superior, but also reported to every state agency that is even remotely connected to them. If I was ever told such nonsense as you were I would not rest until I made that person unemployed.
Your MIL is likely over-incomed to get Medicaid for homecare. That happens often.
However, if she has savings she can go into assisted living. Many AL facilities operate on the premise that a person can cash pay for at least two years. Then they become eligible for Medicaid and Medicaid starts paying. You can search yourself for AL facilities in your area that operate this way.
Should the time come when she needs a higher level of care, she can go to a nursing home or memory care on Medicaid.
I was a homecare CNA for 25 years and now operate a homecare business. How it's supposed to be done when a new client is going to be put on service the agency comes out and opens the case. Someone meets with the client, or in your case you and your husband to discuss what the client's needs are and what you expect from a caregiver. Then the agency tells you what care services we provide and what we don't.
The price is the price. Medicare will pay for some hours if the doctor orders homecare. They don't give many hours, but it's something. Medicare also pays for up to two weeks of respite care in a facility. Many people don't know this, but they do. It's for if their caregiver needs a break.
Some homecare agencies will offer you a special discounted price if you contract a certain number of hours a week with them.
You say your MIL has about two years worth of savings that can cash pay her in a facility.
All right then. Why isn't this being spent on her care? Start spending it. Bring in as many hours of homecare as you need and want. Then when that money is gone have her placed. The facility you put her in will take her monthly income, but they will also get her on Medicaid to pay the rest.
If you no longer want her living with you and none here will judge you, put her in assisted living. Let them know how much money she's sitting on and they will accept her.
As for her socialization needs. Does your town have a senior center? These places are free. You pay a once a year membership fee. They even provide transportation.
She can also go to adult daycare a couple of times a week for socialization (this must be paid for). Start spending her money on her care. When it's gone, she gets placed and goes on Medicaid.
There is no outcome that ends in you selling your home to pay for your MIL's needs. Or having another heart attack because of the stress an elder can put on someone.
Call APS if you have to. Explain your situation. They will point you in the right direction on what to do with your MIL.
Good luck and please keep us posted.
"Next the social worker who told you "oh well, you'll figure something out" needs to not only be reported to their supervisor and superior, but also reported to every state agency that is even remotely connected to them. If I was ever told such nonsense as you were I would not rest until I made that person unemployed." Granted that every state is different, but what are the state agencies that you would report this social worker to? You don't have to give the names, but what they are in charge of. Thank you.
PS: the advice to find a Senior Center to join is very good. They may have not just social activities, transportation, etc. but also a Social Worker on staff or contracted for certain hours available to members. The one I just joined has a Social Worker with a specialization in Geriatric Care, which is great. Well worth the membership price.
As you have to be “at need” for a NH to be eligible for PACE, you would not ever be going and traveling. If your MIL ever would be visiting beyond your city, that would pose a serious problem for health insurance coverage as she only has insurance tied into the PACE system.
The PACE in NOLA draws on an existing very low income community, widows, lots from congregate housing. They have vans that bring them to the center. The 2nd PACE that opened on the westbank is different population; more educated and affluent, more 1 older spouse at need for a day program to give the well spouse a break and the type of couple that owns their home. There’s a lot of federal & oil/gas retirees on the westbank. FEHIB types. And that posed a problem as PACE really was set up for Medicare & Medicaid “duals” and to have them also do Medicaid community based program too. Filing a Medicaid community based application over age 55 enables the State to be able to take an action to place a lein on your home as a part of the Medicaid Estate Recovery program to get a repayment on all costs Medicaid paid. Folks said “I don’t think so…, you cannot make me do this….
LSS in this drama, couple of folks took the State to court over the requirement to have to enroll in Medicaid. They won. You DO NOT have to enroll in any Medicaid program in order to participate in PACE. Only MediCARE is required. You will however have to do a copay. Copay varies by State.
I mention this because you wrote having to pay for PACE.… “a ridiculous rate”. I’ve got to ask just what what’s the $ amount the PACE wanted MiL to pay? What was it based on?
It could be that hubs, or MIL, told PACE that MIL did not want to give up her current health insurance?. MiL can do that, it’s similar to westbank folks not wanting to give up their old insurance & go onto Medicaid. But she’d likely have to do a copay. The westbank folks pay $3K a mo upfront ea mo and really that’s pretty fair rate. Not cheap but fair, If this possibly is what happened, you & hubs may want to rethink this…… if your MIL owns nothing, there’s no reason why she shouldn’t go onto Medicaid for health insurance & go onto Community based Medicaid as well. Probably would mean no copay for PACE.
community Medicaid program, by & large, does not look into assets. If she’s actually over a limit, then find something legit to do a spend down on and keep the recipients as you’ll need them for her eventual LTC Medicaid application. Community may have her do a copay based on mo income for any inhome care, that pretty standard. As she’s still living in the community she’s expected to have $ to spend so it never will be her entire monthly income. (Fwiw she could be paying y’all rent ea month). It’s LTC Medicaid (NH) program application that has 3-5 yr detailed look back on financials. Please realize She’s going to have to do a spend down of her assets down to 2K for most States to ever get a Medicaid bed in a NH.
YES, for her to have Medicaid NH eligibility for most States her asset max would be $2,000. 2K! Spend her $ now. Doing a copay at a PACE would be a legit spenddown to get her along that path.
MiL has $. If not PACE, then use her $ to hire in-home care so that you can get some rest. Just do it. Spend it to hire 24/7 help and you go & stay at nearby hotel for a long weekend away and rest. Then next weekend have hubs do the same. Rinse & repeat. Doing things to help her save $ at this point in time, imho, is a total waste of your time, energy and sanity as it’s effecting your own health and happiness.
If hubs cannot see this, then just book the hotel for Easter and make next week your own special Easter break alone. Enjoy your own bag of jelly beans and peeps!
Did anyone from PACE speak with you, hubs (the POA, right?) on having Mil file for community based Medicaid program? PACE is kinda set up for the participants to be “ duals”, that is on MediCARE and Medicaid for health insurance and then on Medicaid community based program as well (this is different than insurance and covers other items that insurance doesn’t). If not, did anyone from the PACE discuss MiL paying a monthly copay to participate in PACE?
if your community has PACE and it’s being really pushed for MILs enrollment, it could very well be that in order for MiL to be able to get into a NH (a skilled nursing care facility) she will have to go through a PACE assessment as a part of the process to be approved.
It’s - imho - important that you understand what it is & why. This may be more detail that you need but I think it’s important & may be more than 1 post. This sh*t is overwhelming for most of us. PACE - to me - is the current cute girl in town for the States to place state $ & $ from CMS aka Centers for Medicare & Medicaid into. CMS is the federal entity that handles all thing’s MediCARE (like the payments for & coordination of benefit services statements you get) but CMS also determines the federal share % of $ that each State gets for Medicaid programs and if they (the feds) will allow a “waiver”. Waiver means a request to the required by law $ used to pay for LTC in a NH to be waived to be used to pay for a program that benefits the same demographic. And why PACE specifically will mention “for those who otherwise would be eligible to be able to be in a NH”.
Yours is now maybe the 5th or so post in past couple of weeks on this forum alone that specifically has brought up PACE. So to me - as a very jaded former health planner- means a lot States have decided PACE is the way to do cost containment/ cost efficiency for their Medicaid $’s. PACE has been around for years but rather limited as most places did not have existing partnerships needed to set up initial networks to make it work. My city (New Orleans) was early into having PACE as Catholic Charities has a long-standing healthcare division and has existing SNF/ NH & congregate housing programs to draw staff from and a elderly poor population from. So once they found a deep wallet patron to pay for their 1st center (the Benson, & it’s quite the showpiece) and partner up with LSU/Tulane Hospitals & Healthcare Systems (full on health science centers), they could open a PACE. Now 6-8 PACE run by CC; they are the health care mafia for south Louisiana, plus nonprofit tax status so oodles of tax credit abilities abound.
What makes these PACE work is that it becomes the complete center for the elders health. Elder assessed as to # of days per week to come to the center and if they should perhaps need a drop in aide over the weekend. I’d guess 3 x a week 6 hr days for most and they leave with a hot meal; transportation provided. The elders MediCARE and Medicaid as they are “duals” but actually gets a new # under PACE, so PACE does all billing; PACE now schedules all health care within their partner network. HealthCare is either at the day center done by full time PACE staff or by the affiliates of the PACE or PACE set up whatever outside appointments need to happen and accompany the elder if family cannot do it (like they need to see ophthalmologist). In theory everyone enrolled is “at need” for a NH but can continue to live in their community with outside support, which is what the PACE along with family and friend provide. Once that balance changes, there’s a huge medical chart to show need for skilled care. So the elder can segueway into a NH with a Medicaid bed if there is one available.
and that’s what I think PACE is really geared to doing…. More in part 2.
So many are lost in all this and I most certainly am.
When people are needing help dealing with these things do they just google "Health Care Planner" in their town to hire some help? Is that the title one looks for?
Because from applications to choosing programs for care, health care and etc. I think most of us just blank on all this. I worked with Social Workers in hospital who knew so much.
Who can someone out here dealing with an elder and assets and placement get as PAID help to walk them through choices and applications? What "title" are they looking for on google?
She has too much money for help if she has enough for 2 years in care. I would not spend that on aides in the home. You still are going to have problems because she lives there. I would put her in an AL or MC. The AL can actually evaluate her for which one she needs. In my State, if you pay privately for at least 2 years, Medicaid may pay for MIL to stay where she is. The AL has to except Medicaid and have not met their quota of Medicaid recipients they allow. You can talk to the AL Administrator about this.
Once MIL has spent all her money on the AL/MC you apply for Medicaid. This should be done 3 or 4 months before she runs out. My Mom did not have enough money for 2 yrs. She had 20k when I applied for Medicaid in April. That paid privately for two months in Long-term care. So she paid May and June. By June she was spent down and all the info requested was in the hands of the caseworker. I verified this with the caseworker and her Medicaid started July 1st. In my State, you only have 90days from date of application to spend down, get info requested and place them if not already placed. I moved my Mom from an AL to LTC. In two years they can decline so much. I liked LTC, it took a lot off my shoulders.
How and why did you end up with MIL? Is your H an only child?
I love Barb's idea to book a vacation for yourself and leave H to do all the care.
Once you had your heart attack, MIL should have been moved out of your house somehow, even if H had to resort to the ER dump.
Problem solved.
That's one way to do it.
Did she not do a "needs assessment"?
Was the PACE program recommended based on her care needs? You have to be medically eligible for Nursing Home level of service to qualify for PACE (at least in my state).
What medical issues does MIL have besides dementia?
Look up the Canadian Frailty Scale. It will give you an idea of where she is in terms of what she needs assistance with.
The easiest and fastest way to get placed in a facility is post-hospitalization. That's why the ER dump is probably the best idea.
Your MIL was taken into your home, and when one does this it always makes placement more difficult and complicated when it must be done.. But it must be done "eventually"., imho if you are to have a life.
Who is POA? Is there a POA? If not, what are the plans to get A) diagnosis and B) guardianship?
Those are the first questions to address. Diagnosis. POA/Guardianship. Then on to looking at placement. The POA gathers assets. Then you either do yourself or get a company such as A Place For Mom to help you with looking into placement options, be they Nursing Home, ALF or Board and Care. If there are few assets it will be necessary to consider if there will either be a move to medicaid facility or if you can find a current facility that will accept medicaid after assets are gone.
Your other choice is to continue in home care which will become more and more difficult. Your MIL should be in the loop on plans for the future, whatever the family decisions are. In many cases in our own country there IS no family to be involved in any of this. Placement then is done through guardianship of the state and their fiduciaries and social workers.
These are the hard facts. The hard steps that can only be taken one at a time. 1. diagnosis 2. POA/guardianship if not done 3. decision where MIL will stay and how long you can do the care 4. asset evaluation and placement.
We live long in this country now, and for many this is how it all ends. It is so hard for everyone and outside these hard cold facts is all the torment for the senior and for his or her family. Not everything can be fixed; some things are endured the best way we can. I am so very sorry. It seems to me on some level, given all you HAVE done, that you understand all of this, and already know just how difficult it is.
Start by finding a certified (www.nelf.org) elder law attorney. I would go with a big firm that has social workers on staff.
You need to know about how to get MIL eventually qualified for Medicaid and what facilities in your state accept Medicaid--NH care is an entitlement if one is medically and financially qualified. Memory Care and Assisted Living vary from state to state.
There are ways to get qualified for Medicaid--Miller Trusts, spend down--again, state-specific.
You use MIL'S money to pay for this consult.
Get MIL to a Geriatrician or Geriatric Psychiatrist for evaluation for meds NOW. She needs meds for sleep and sundowning.
Consider an ER dump. The next time she acts out, call 911 and have her transported to the ER. Ask to speak to a social worker and tell her/him that MIL is no longer safe residing in your home. They will find placement.
Do NOT agree to take her home--they will tell you they will find you help, but they won't.
The department of aging does diagnose. They will do a "needs assessment " to tell you what level of care she needs.
You can as easily call A Place for Mom or any other "Senior Advisor Service" and get a pretty decent assessment of her needs.
Using her money to pay for facility care NOW may get her into a better place that will keep her as a Medicaid client down the road. These regs are very state-specific.
It seems to me she needs facility care NOW. Because you will pre-decease her.
"Mild heart attack"?
In your shoes, I might schedule a 2 week vacation (alone, leave DH at home to do the care). Go anywhere.
Maybe his denial will clear up once HE is doing 24/7 care.
You're right. They cannot agree to take the MIL home if they do an ER dump.
The hospital will make all kinds of promises about unlimited resources and homecare being made available to them if they agree to, but it's not true. They will deliver on none of it.