What are our options for care?

Ma, where do you live?
In some states, Medicaid covers Al's , but not not in others.

 In NYC, where I live, Medicaid covers 24/7 in-home care. Go figure.

It so much depends on your individual state.

I believe the local Area Agency on Aging would be a good place to ask questioms.

I live in Maryland. I know for nursing homes, assets have to be paid down to $2500 before Medicaid will kick in. (That means funeral expenses have to be pre-paid.... or where would we get the money for that???)  It would be great if they covered in-home care here, but I doubt it. I called the Medicaid office to check on how the family home figures in. One person gave me the numbers for two different people who take care of assets. I left a message for both, but no one ever call.... I guess I shouldn't be surprised...

I didn't word my "questions" right... In addition to what Medicare/Medicaid would cover, I don't know where Mom would "fit" based on her condition. AL is more like an apartment, where people can live independently. She can't be left alone. Would that mean a nursing home or memory care center are the only options?

Yes. The Area Agency on Aging Barb mentioned could help evaluate your mom and guide you on which nursing homes and/or memory care accept Medicaid and which you need. Your hospice staff might have suggestions as well.
Your mom has to be medically qualified as well as financially qualified for medicaid at the time you file. Utilizing a certified elder attorney well versed on medicaid might be a good course of action especially since you have a handicapped brother to also be concerned about.

It sounds to me like she'd need a nursing home. But I'm not a trained needs assessor! The Area Agency on Aging can help you arrange an assessment by someone who knows what they are talking about.

What is her prognosis? Do the "experts" think she is in the end stage of her life? Is hospice care likely in the near future?

I suggest you consult an Elder Law attorney and get some guidance about applying for Medicaid. If the money will run out in a few months, get started on this now.

Best wishes to you all. Keep us informed about how this is going.

jeannegibbs, Mom is receiving palliative care from a hospice program. She has been at 40% on the palliative care scale.

Good suggestion about the elder law attorney. Thanks everyone!

why not do the arrangement you are now doing until such time assets are spent down, then go to a nursing home with Medicaid.

2 months of funds left & owns a home is actually good as she can easily get whatever spend down needed between paid caregivers and property costs. Although you’ll be busy setting things up!

Most hospice groups do both in-home hospice and also in-facility hospice. Hopefully your current hospice does both. If so, I’d start by asking the current hospice group which NHs they currently go into. Then contact each of those NH to ask if they take Medicaid, will accept residents as “medicaid Pending” and if any open beds. Then go to see all with open beds.

Even if the NH is somewhat far, go to visit. Once your mom clears Medicaid, she can transfer to a NH more nearby once they have an open bed. Medicaid allows for transfers and without any 30 Day Notice penalty placed.

The NH will likely ask from the onset what mom has for income, it’s often referred to as her “awards letters”. As it gives NHs an idea as to what her copay or SOC (share of cost) will be and if she’s within Medicaid income limits. For those on SS, the awards letter is a trifold from SSA in Oct/Nov that state to the penny what SS will be paying her for the incoming year. Pensions and civil service annuities also send out “awards letters”,so if mom gets those too, bring them to NH visits. In theory what a resident has for “awards” is not supposed to make a difference as to admissions but thats not what I found.... my mom had abt $1900 a mo and the NH were positively giddy about the 1900 as many elderly have just a small like $800 SS income. The income shown in the awards letters will be the only $ the NH is getting till your mom clears Medicaid & Medicaid starts the daily reimbursement for room&board. That could be months to process (my mom’s was 5 1/2 mo).

Remember that her assets have to be under 2k. So any savings, life insurance that has a cash value, investments will need to be spent down. If anything like this exists, try to get started on this ASAP. Cashing out a whole life policy could take 3 weeks or so.

Your mom’s house will be an exempt asset for her lifetime, then upon her death goes from exempt to a nonexempt asset of her estate & subject to an attempt by Estate Recovery / MERP to repay Medicaid from its sale. MERP has all sorts of exemptions and exclusions. It sounds like your older brother maybe might qualify for disabled heir and perhaps you for caregiver exemption (full time caregiver 2yrs to NH entry). You need to find out clearly if this can exist for you all and that means mom sees an elder law atty ASAP & one with MERP experience. 

Also IF your older brother is considered a legal dependent of your mom, (like he’s her dependent on taxes filed) that too will affect her Medicaid. If he’s actually a legal dependent of hers, he can apply for a waiver to get some of mom’s SOC to instead go to him. He should be getting SS from her or his late dads SS earnings. If he’s not already her legal dependent, establishing this will be sticky & will probably have its own thicket of paperwork & needs an atty to deal with. I’d guess it will be a pretty high hurdle to do. But if he’s a dependent the Medicaid spend down still is required but mom could likely shift funds into a SNT for the disabled dependent son without a transfer penalty. These are NOT DIY projects but need an atty with disability experience as well as elder law Medicaid. You know the situation best, is bro truly disabled or more shiftless 

If mom’s going to keep her home, she can spend down by paying on house costs. Say mom has 9k in savings, she’s over Medicaid asset limits by 7k. So she pays utilities, taxes, insurance, whatever house to get slightly over 7k spent & cleared through her bank account this month so that next month when she applies for Medicaid she’s totally under Medicaid's income & asset limit for how it appears in her bank statements. 

Remember the copay or SOC must be paid each month, so if older brother is dependent on mom paying utilities, groceries etc each month, that goes away once she’s on NH Medicaid if he cannot establish legal dependent of hers.

I am from Illinois but now in Colorado. I am in a similar position and will do my best
to investigate both States. Also AARP is, as it happens, sponsoring a one-day
program in late April in Denver focusing on us 24/7 folks, so AARP may have lots of good information on this particular topic.
on this very topic!

You’ll need to have mom assessed to see if she’s appropriate for AL. Sounds to me like she could be. The people who give care in an AL have the same credentials as the person you’re paying for overnight care (probably more) and they are supervised by a nurse. The questions would be: how high a care level does mom need and does MA Medicaid pay for AL.
You could have had mom in an AL on private pay already for as much or less than what you’re paying for overnight care. She’d be getting 24 hour care and you and your siblings would be way less stressed.
You can move her in right now if you can determine what MA pays for once she is spent down.
You’d do well to invest in a visit with an elder law attorney.

Also, when you visit or call the AL, be sure to mention that mom is getting hospice support. That may reduce the assessed care level and thereby save money. Be sure to call a few ALs. They are not ‘one size fits all’ in terms of care they’ll take on. The lines are blurring between AL, IL, and SNF. Consumers need to be specific when gathering info so they can compare apples to apples. And don’t sugar coat your mom’s needs. If the AL doesn’t have a accurate picture of the care required, the rate will go up when mom is next assessed.

IsntEasy, I suspect you meant MD Medicaid if you are referring to Medicaid in Mapotter's state of Maryland. (MA is the code for Massachusetts.)

You need to get an elder care attorney NOW while you have money to pay for it, and look into having a pre-need burial plan in place. They can’t touch your home, or ONE vehicle, and can’t make your disabled brother move out. He is on disability, right?
Most important, see an elder care attorney NOW. First visit is free and he will shower you with questions on financial status and health condition. Know the basic answers before you go. It takes a few months, normally, to even get the Medicaid. Some nursing facilities will allow the patient to stay there, knowing their Medicaid is pending.

In response to IsntEasy's very helpful remarks, I'd add that I was not able to find AL for Mom for less than you're paying for in-home care, Mapotter. We pay about $500 more a month for her care in AL. She's in KS, which is not one of the more expensive states. I can only afford it because she has LTC $ coming in right now. This will end in about a year and a half, so I am already in the process of retiring from my job in OH and moving to KS so that she can live with me. But that is the retirement capital of the world, right???? :) JK, of course. And I must add how grateful I am for this site. I read it daily to keep my sanity, and I'm only caring at a distance now. I take care of almost everything, even with siblings in the area....

This is not an answer, but I'm in almost the same circumstance as Mapotter with Dad running out of his own money fast. I am definitely going to meet with the elder law attorney we used in 2011 for Dad's VA Aid & Attendance qualification, which included Medicaid planning. My big question at the moment is what happens the minute an Medicaid application is approved? Does Dad then have 30, 60 or 90 days to leave his home? Or can the Medical approval lay "dormant" until we find a facility that seems right for him? Dad can't remain in his home without VA A&A, and Medicaid wipes out VA A&A. I guess want to squeeze the last drop of pride and pleasure he can have about remaining contented in his beloved home until I absolutely have to move him, when either his money runs out (about 3-6 months) or he has a medical emergency.

I would not call assisted living 24 hour care. I guess if you mother is able to pull the help cord she will get assistance at all hours, but even that takes a while. My mother was in AL for about four months ( a very nice one) and she had dementia to the point that she would not pull a help cord if she needed it. At the most, they would check on her every two hours. She also had hospice but they came daily at the most for about an hour. A nursing home is a higher level of care and sound more like what your mom may need. ALs are just that, assisted living. People that need 24 hour care really are not supposed to be there. You are going through so much, take a deep breath, you will get through this!