My dad and stepmom live 3 hours away. SIL lives next door and provides transportation and some limited assistance.
They are NOT eligible for Medicaid.
Dad is 87 and beginning to experience mild cognitive decline. Stepmom is a few years younger and has mid-stage Alzheimer’s, as well as diabetes which has caused serious nerve pain in her feet. She’s barely capable of walking at this point and will likely be wheelchair bound in the future. They are both still fully continent.
Their home is an unmitigated disaster. Just piles a stuff everywhere. A LOT of clothing - the guest room is full of it, the living room sofa has clothes piled on. The dining room table…just everywhere. But there’s also just papers and junk and filth everywhere. There’s so much you can’t even begin to dust, sweep, mop.
My visits up there are limited as I have my BIL living with us who is bedbound, on hospice dying from metastatic lung cancer. My mom is nearby in memory care with late stage Alzheimer’s, and I have my sister (stroke survivor, paralyzed and in cognitive decline) who’s 90 minutes away and requires my occasional presence, as well.
Dad and stepmom both have LTC plans which provide up to $120/day. There is no limit as to how long they can use it.
Dad is searching for the LTC Policy paperwork so that we can call them and see what our options are. Because these two desperately need help.
Stepmom has severe COPD. Dad remains awake all night next to her for fear she’ll pull off her CPAP and die. He sleeps from 5 am to noon. She gets up around 6 am. She’s been left to take her own morning meds (which she often forgets).
What sort of options might be available for someone to come in to their home? What sort of help can be provided? Can they get help with medication administration? Any possibility they can get help with their household?
All advice is welcome and appreciated. Thank you!
Care at home is very hand to manage. Care in a facility provides 24/7 care and you won't have ongoing emergencies such as home caregivers not showing up,
Please get your family to rally around and change their thinking. No matter what you promised before about keeping them at home, don't. You need them to have the best professional care possible, and good luck.
But dad is still self sufficient. He’s just got very mild short term memory issues. And it really started this year as the stress of caregiving has overwhelmed him. But bottom line is he will absolutely not agree to be placed himself. And I don’t believe he’d be willing to allow his wife to go, either.
Step one is getting some home help. And we’ll work on it from there. Once she becomes wheelchair bound, it’s going to be a whole new ballgame that he’ll need to come to grips with.
The family situation as a whole has virtually all of them falling apart simultaneously. Mom ran out of money 18 months ago and we’re actually paying all of her memory care. And we’ve yet to find a Medicaid room for her within a hour’s drive because of the Alzheimer’s.
I imagine they are all insistent on staying at home, right? Imo the issue will be in finding a In-home health agency who will take them on as clients in their home without someone else living there as they do not sound capable & cognitive enough to be just them. Once he finds policy, look at how needs assessment is done / required. Going to be super important as the insurance payment will depend on appropriate placement.
So next ?, Why ineligible for Medicaid?
Is it an issue of being over resourced (too much $ in the bank), then they spend down to get to the point of whatever the $ amount are needed for them to be eligible. If I’m not mistaken that LTC policy $ will count into “income” as resource. It’s not an “asset”, it’s income. Excess income can be dealt with, like a Miller Trust or QIT done.
How you described their health needs, it sounds like 1 becomes a NH spouse (stepmom) and community spouse (your dad) situation. The system on getting this done correctly for LTC Medicaid, imho, is not at all simple as there’s a segregation of income and assets that has to happen and likely changing of existing legal (like will in which they are each others beneficiary aka a pour over, that needs to be changed so codicils gets done) needs to happen. It’s CELA level of elder law attorney work so dad stays in the home, dad seeks a waiver to get as much of her income as plausible so he’s ok financially; she’s LTC Medicaid eligible even if her required copay of her solo income to the NH is teeeny tiny + the $120. But isn’t simple, best off attorney expertise to do.
OR
ineligible for Medicaid due to them gifting $ or assets fairly recently? Way different type of problem. Sometime those can be dealt with by an experienced in Medicaid attorney.
OR
is it they refuse to leave?? If so sadly wait it out till one or both have a fall. Fall places them in a hospital (Medicare) then discharged for rehab (post hospitalization Medicare benefit) then determine they cannot safely return home so stay in the NH and private pay till impoverished, file the LTC policy benefits & spend down 2b eventually ok for LTC Medicaid.
fwiw their home remains an exempt asset for Medicaid for their lifetime. If need be, and they both end up in a NH, the house could essentially get locked up and then over t…i..m..e, the family deal with getting the crap moved out. If the folks flat won’t hear about selling it, this might be a way to manage the situation. Like you kinda fib and tell them eventually they will go back but knowing that is not happening. If it takes 3 years to have time and energy and sense of humor to deal with it, it is what it is.
Now if doing this, property costs will need to be paid by the family cause if both are in a NH, their income (SSA, pensions, LTC insurance, etc) becomes a required copay to the NH under LTC Medicaid rules. But a modest value older house, paid off so no mortgage, left empty so low utilities could be manageable $ for the kids to do the costs on while over time y’all get in and jettison stuff, knowing they are safe & secure & being cared for and no more of that drama/ emotion & time of dealing with them in that nasty home. Something for you, hubs & SiL to think about.
Keep in mind, that Medicaid cannot make family / heirs deal with the house. We do it under a sense of familial responsibility or a fiduciary duty as a POA if feasible. Families do choose not to deal with homes.
FIRST - there is no Will. They never could agree in terms. I’ve worked with them over the past year to tie up some loose ends. We got the POAs in place (my stepsister is POA for both). We got beneficiaries added to all but one bank account. And they recently sold their home to my SIL as this was the only solution they could agree upon.
They sold their home for fair market value to my SIL who lives next door. She pays all expenses on the home except utilities. All taxes, repairs, etc are paid by her.
They were paid approximately $150K for the home. Their checking accounts have always been separate. They split the money and both purchased CDs.
At this point, dad has around $175K total between checking, savings, and CDs. Stepmom has around $70K. Even though neither of them drive, they own one automobile - a 2010? Chevy Volt.
Dad would definitely be the community spouse and stepmom requires NH.
If stepmom goes into a nursing home, Dad would be entitled to keep around $120K or so, yes? But I’m sitting here thinking he’s just not going to allow it considering he’ll not be able to drive every day to visit her. And my SIL is not likely to agree to do so every single day.
I’m going to try to reach out to her about the situation and see if we can come to a solution.
I’m guessing plan was a stepsister (SS) was going to move in without paying rent to be their principal caregiver. Everyone all kumbaya as both sides (Dads kids which is U & SiL hubs) AND his wife’s kid - the SS- would do their part so the folks could age & die at home.
That SiL next door did what she did because enable this to happen & legitimately take financial strain off the folks 100%. Medical aspect taken on by his wfs daughter who was to move in but has bailed. Maybe expecting LTC insurance to pay SS?
Is this what’s happening??? And why now in home health services (IHHS) is being thought about? & U/SiL now in a bind?
if so, iHHS provided by Medicaid will be quite limited. Most IHHS is private paid. The folks have SSA income & maybe other $, so $ to pay. There is a poster on AC, BurntCaregiver, who does this as a business, so maybe she’ll post as to what all that entails & costs d abt LTC insurance paying. Not my wheelhouse.
For IHHS paid by Medicaid, it’s under community based program funding within a States huge Medicaid system. For Medicaid to do IHHS, need to be lower income (assets usually not looked at all) & “at need” with an assessment as to # of hours for each. States can do live-in family paid or outside agency paid. Some do zero family CG. For the live-in CG, tends 2b slightly above States min hr wage & 20-24 hrs a week & fully taxable income. States do not ever want it to turn into over 32+ hrs or FT care or wage territory with exception of couple of States (eg NYS). The sticky will be the assessment, bc if stepmom comes in to over 32 or so hours, for States that tends to mean she will be evaluated best off in a facility, so no IHHS.
Also if State is pushing PACE, folks may have to be evaluated for that 1st & foremost and only when either goes beyond what PACE center and it’s adjacent in-home agency visits do, will they be written up for at need for a NH or MC. & the PACE helps coordinate the placement & LTC Medicaid approval. fwiw PACE is imo the new cost containment approach for States to shift Medicaid funding to. If u find that PACE is in the mix for them, post that, if you would please.
So what to do, personally I’m a fan of getting a needs assessment done first step. Their Area on Aging may have info on who does these. Often NH has an assessment team & some do independent work. So definitely know where level of care is for each. It sounds like she is NH & can stay at home become a community spouse for LTC Medicaid once she spends down her $. Let the assessment guide you on what type of care plan they each need. Does help to get some of the emotion out of decision making.
But if they flat refuse any of this, it’s wait for 1 to fall and then when they go post hospitalization into a NH for rehab, they never exit but become a long term custodial care resident. Rinse & repeat.
it may be y’all actually missed a bullet on SS not moving in to caregive. 2 elderly huge amount of work. Doing if only for “free” rent is just not enough and there is required tax reporting paying SS as considered household employee for IRS. Plus need others hired as it cannot be only SS. Perhaps preferences in care of her mom over your dad. And if things went badly, & SiL had to make her leave….. SS is a tenant, she lives there, it’s her residence so that means the property owner has to go through legal eviction process, even if it’s after the folks are gone. Good luck in your decision making!
Are you referring to the hoarder's home? The one that is...
"...an unmitigated disaster. Just piles a stuff everywhere... papers and junk and filth everywhere. There’s so much you can’t even begin to dust, sweep, mop." ?
I don't think any agency would allow their workers to be forced into such an environment. It's a health and liability issue. I'm not sure any private aid would want to, either. You will need to give full disclosure up front to anyone you are thinking of bringing into their home to provide care.
You may need to use some of their funds to clean up the house first. If no other reason but for the sake of your SIL.
I am a private pay self employed care provider and find your micromanaging of caregivers a bit over the top.
You sound like you had very elementary skilled labor.
I have been doing this type of work for almost 20 years. I go out and market my skills and my focus and expertise is Alzheimers Disease.
Please do not lump all care providers together. I have 2 college degrees and 75 hours of training in Dementia.
Please know that there are care providers like myself that are sought after and we are professional corporate woman, and would find your micro managing offensive. You most likely received care aides that were very limited in their skills and were young and very inexperienced.
Thank you for having an open mind.
Start with the facts.
First, you need a copy of the policy to answer your question about LTC insurance and whether it covers in-home care. One way to find the insurer's name is to check their bank statements for monthly LTC insurance payments to the insurer. You pay premiums, usually for as long as the policy is in effect, and make claims if you ever need the covered services. The only way to be certain your dad and step-mom have LTC insurance is to verify it. They should still be paying monthly premiums. A copy of the policy will spell out exactly the terms of the policy.
Not all LTC insurance policies are the same. Most policies require policyholders to need 90 consecutive days of services or disability. For example, if your elimination period was 90 days, you would need to be in a hospital or disabled for 90 consecutive days before any coverage begins. After the elimination period is satisfied, the benefits of the maximum monthly pay-out may kick in or not. My LO's LTC policy would only pay one-third of the maximum monthly benefit for in-home care. After LO moved to AL, the monthly benefit increased to 2/3 of the maximum monthly benefit. LO's LTC paid the maximum monthly benefit only when he was in Skilled Nursing Care. In my LO's case, Memory Care did not qualify for a maximum monthly benefit payout.
Obtaining a copy of the LTC policy is a must. Good luck!
If your stepMom has been diagnosed for dementia and severe COPD, she could be eligible for a certain amount (not a lot) of home health care. Depending upon your Dad's capabilities (or lack of capabilities), he too could qualify. In order to qualify, their PCP would have to make the diagnosis.
The real problem that I see is that they might be living in a situation where home health would not come into their home. In that case, as much as they may not want to do this, maybe they will have to be moved out of their house so that their house can be cleaned, before home health can be employed to help them. The memory loss that they are having, could be contributing to the hoarding situation. It almost might be easier to move them into managed care while "you" clean up the house and either rent it or sell it.
You have a lot on your plate. I commend you for doing all that you are doing and still staying sane.
A separate issue is that before anyone can enter their home is the "unmitigated disaster" that will have to be dealt with by possibly professionals.
Good luck!
If they have not been making payments it is possible that the policy has been cancelled/forfeited. . If there was any value to it if they are entitled to any the State Treasurer may have it in "Lost Cash" check their State Treasurer Website for any cash in their names.
If dad is a Veteran he may qualify for some services through the VA. Contact your local Veteran's Assistance Commission and they can help. (there is no fee for their service)
You need professional cleaning help (hazmat team) to go into your parents’ home to do a thorough cleanup.
I feel very lucky to have had a rehab hospital that recommended a PT who recommended our current in home caregivers. I also investigated aplaceformom.com and had many offers for help. I was using it for cost comparison to find that what I had was the best cost there was. Cost ranges were significant and really depends on what is needed. They WILL NOT clean up the mess. The caregivers clean up after the person they are caring for. You have to be VERY specific and watchful with caregivers. EVEN IF you have a family member living with them, I suggest they have an outside caregiver to handle bathing, getting up and dressed, going to bed. Those things take a personal touch and can be difficult for family members to get used to.
Encourage family members to help parents sort through things and get rid of items no longer needed. One pile at a time will eventually get there. Progress is important. Gloves can be helpful with sorting - less papercuts and washing of hands LOL,
Depending on your loved ones insurance, some plans do cover a few hours a day for in home care. Also, depending on where they live, some communities have volunteers that would assist. There's also Meals on Wheels and other organizations that volunteer. I would try asking a local church. I know that Medicare pays for first 20 days in nursing home but that doesn't seem to be something you need right now. My mother just passed in June at age 93. Whenever I would visit her I would sneak old magazines and things she had laying all over her assisted living place out to the trash. She had so much she didn't miss it. Sorry I can't be of more assistance.
At 95, my mother fell and broke her femur, was hospitalized, went to rehab, got an infection, went back to hospital for another surgery, and ended up in hospice, which although Medicare pays for certain things, they do not pay for the 'room/facility'. Although mother qualified to activate her LTC, we were on the hook to pay the first 90 days. Mother passed away 3 weeks after entering hospice, so the policy never got going.
However, one thing I did learn was that to notify the LTC insurance company the minute one figures they will be needing it - i.e., when mother went into rehab, I contacted them to advise them - going on record.
One does have to prepay while the policy is reviewed for the applicant but once approved my experience with my mother's policy was that we were paid back for that initial period of self pay. Most meals in AL facilities are prepared by staff and generally served in a communal dining room. Meals prepared by residents may apply to IL facilities.
But just to update the situation:
I went up and helped dad clean up one of the rooms - took a few days. In the process, we found the LTC policies!
Dad and SM gave permission for me to speak to LTC company. I spoke in depth with them. Only a 20-day elimination period. SM would be qualified, dad would not. No housekeeping services would be available through LTC.
So, potentially LTC would send someone in to administer meds and help with bathing, etc for a few hours each day. A separate person would need to be hired for housekeeping - maybe three days/week and only AFTER we get the place cleaned and organized with the hope the housekeeper could maintain it.
Another trip up right after Thanksgiving - I had approached dad about the possibility of moving to assisted living. I looked into local facilities and found one that appears excellent! The LTC payment would pay the bulk of the rent. And dad surprisingly agreed to the move once I took him over for a visit.
I then took SM over to check it out. She was impressed, as well. But also frightened about the prospect.
After further discussions which included their primary care physician (who encouraged the move), and also with my SS, I discovered that my stepsister was willing to quit her job and move in provided she was given a fair salary. My father agreed. And SM was VERY happy!
This scenario will work for the time being. Things could/will get rough as time passes by. I’ll keep in close touch with my SS to ensure she is managing well and is still happy with her decision to move in.
Btw, I continually have to be painfully reminded that some tales that are told aren’t the whole story - and some tales are complete fabrications. Why my SS was hesitant to move in was because of tall tales she had been told by someone who’s not of their right mind. And the tale I was told about my SS was also not the complete story and lacked much context (which had been told to me by dad who had never bothered to actually discuss the situation directly with SS). A dinner alone with my SS cleared everything up! Hopefully I’ve actually learned a lesson this time and will always seek out perspectives from the players involved…versus listening to rumors.
Bottom line is everyone is happy and safe, for the moment. :)
In my area, caregivers from an Agency cost about $35 an hour. So $120 a day would be used up by 3. 5 hours of time at that rate.
$120 a day is $3600 a month. That may cover the cost of room and board at assited living. Depending on costs in your area. Some assisted living places allow 2 people to live in one studio room, at a modest increase in price (usually NOT double the rent). something to consider as far as how far the dollar goes