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So far as I’ve researched it’s self pay. With her disease, she’s only going to become harder to care for so I’m not sure I have options.

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Get connected with a local social worker who can advise you about your mother's options. It's also helpful to be connected with local senior networks and agencies that can advise. Every state is different.
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If she has no income, apply for Medicaid at once. Whatever you do, if she has dementia, do NOT allow her to come home - it will destroy you. Trust me on that. She needs to be in a facility. Let the pro's involved know you are physically and mentally unable to take this on and you won't do it. Do not wait. Accept what is and research for the best outcome.
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candeelyn: You will have to apply for Medicaid.
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I hired a company to help me navigate the Medicaid application process (including spending down appropriately, setting up a Miller Trust, etc.), get my mom approved, and find her a placement in a facility that met her needs. These are things that perhaps I could have figured out on my own, but it was a very stressful time - my mom was declining quickly, and all of her CNAs (including hospice care) suddenly pulled out because one of them tested positive for Covid. If you find yourself in an urgent situation with your mom like I did, you might look into whether there is a similar company in your area.
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Try to place her in an AL (her money will last longer). Be upfront with the sales person. You are moving her in to spend her down. Make sure the sales person is knowledgable around Medicaid. Once you mother's funds are used up, she will be eligible for Medicaid (depending upon your state, that will mean that her monthly bill at a nursing home will be covered. Some states let Medicaid cover assisted living, but not many). Before you get close to running through her funds, be sure to prepay her funeral expenses and stock up on eyeglasses, hearing aids, clothing, etc for her.

You may want to do a consultation with an Elder Law Attorney to make sure you aren't breaking any rules that will come back to bite you, but it's not really necessary to hire them (expensively) to assist in the process.

DO NOT let anyone in the family use your mother's funds for their own expenses. Be very careful about 'gifts'. There is a look back and money that is dispersed now must be accounted for. If it's not an allowable expense, it will be deducted from what Medicaid will pay.
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IF you have POA, get in touch with an Elder Attorney asap and get things set up, they will help protect some of what she has. they will help get medicaid set up when the time comes, etc. Not just any attorney, but an Elder Attorney........wishing you luck. We used one for dad when he had to go into NH and now mom is there and we used same attorney...he was ranked the highest in our area.
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Apply for Medicaid now sometimes it takes months to be approved but it sounds like she is in need. All the best....very hard to watch the lady who took care of her children suffer with this horrible disease.
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Get information about different nursing homes and narrow it down to the ones that will take good care of your Mom. Then take a tour of them to see the staff interact with the residents, how clean the place is, what the response time is to residents pressing their help buttons and activities that center around your Mom's needs. Talk to the social worker and admittance coordinator and tell them about your Mom's financial situation. They should be able to give you information on the government funded program called Medicaid. It pays for an elderly person's care when they run out of their own money. A disadvantage of Medicaid is it doesn't pay the full cost of nursing home care to the nursing home, it pays less than what a private pay resident would pay. Your Mom may have to pay a small amount if she receives social security or a pension. Make sure you stick to a nice nursing home for your Mom that accepts Medicaid. Visit her as often as you can. That will keep the lines of communication between you and the staff at the nursing home open. There are elderly services programs that are run by the local county that she lives in also. These are government run programs that have social workers that can offer help in her care. It can be a confusing and stressful task to find good care for a parent I wish you good luck.
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My mom has been in assisted living for almost 8 years now with dementia.  The facility called a meeting with me a month ago to tell me that they feel mom needs more hands on care and should be in memory care.  I agree but the finances are definitely an issue.  She only has enough money to be in memory care for a year.  I have explained this to them and they said for me to let them know a good 3 1/2 months ahead of time before her money runs out and they will help me apply for Medicaid and find a nearby facility that takes Medicaid.

I appreciate that they will help me navigate this process.  I dread another move for mom.  I wish she had the funds to stay where she is but...

If you only have 5 or 6 months, I would look for a facility that takes Medicaid right off that bat.  By the time you get it approved you will only have a couple of months of spend down before it would kick in.

Good Luck Candeelyn
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Geaton777 Jun 2021
Jamesj, you wrote, " I wish she had the funds to stay where she is but..."

Just to clarify no facility will let her stay in AL if she is no longer capable of living partially independently, no matter how much she pays for it. Memory Care is for people who can't carry out any of their ADLs due to memory impairment and/or are a wandering risk. She will need to move eventually. I totally get grieving this change.
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Look for placement into a facility that takes Medicaid. Usually the social worker at the facility can help you/her file for Medicaid when it is needed.
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Definitely talk with the Medicaid office before proceeding. If they are of no help, find EC atty's - many will give a limited free consult. Try several if you can. The ins/outs of Medicaid vary by state, so it's best to get expert advice.
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God help you if you take her home. She will get worse and worse and your life will end as you know it now. Let Medicaid take over and place her in a facility at once.
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Well, it’s going to depend on the type of facility or care your Mom needs. Assisted Living is not required to accept Medicaid although many will after the person is a resident for 2 years. Nursing homes are required to reserve a number of beds for Medicaid residents. In my research I found that most Memory Care units are part of AL facilities and follow the same rules as AL. Each type of facility would assess your Mom to determine if she is appropriate for their facility.

I suggest that you immediately contact your state's Medicaid office and get an interview with a case worker to discuss your options. Medicaid will also pay for in-home care needs. There is a lot of paperwork involved and the application approval takes +6 weeks so start now!

FYI if one of your parents was in the military during a time of war she might me eligible for an Aid and Attendance pension from the VA.
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Talk to her doctor to determine if he will document that she needs NH level of care. Then find a facility and let her self pay for period of time that her money will last. NH will then start process of applying for Medicaid to coincide when her money will run out. Seamless process.

When you are talking to NH's, let them know what's going on because you need to be sure she goes to a facility that has self pay beds now and Medicaid beds for future.
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disgustedtoo Jun 2021
"Then find a facility..."

Find a facility that 1) accepts Medicaid and also has a Medicaid bed "available."

Also, best to check with Medicaid office to be sure her income won't disqualify her (didn't check when it was last updated, but a PA web page mentioned $2130/month.)

It would stink to get her in only to find out she doesn't qualify, because NHs are generally more expensive than AL/MC and care homes, so she'd deplete her assets much sooner, and then what?
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This is what I did. After living in a AL for 8 months Moms house had not sold and she was running out of money. She had 20k left. I started her Medicaid application in April, placed her in LTC May 1st. She private paid May and June which spent her down. In June I checked with the Medicaid caseworker to make sure he had all the info he needed, he confirmed he did and Moms Medicaid started July1st. Medicaid in my State gives you from date of application 90 days to spend down assets, get the info they need and place the applicant in LTC.

I suggest you use what money Mom has to private pay for her in LTC. It will be easier to get her in by private paying.
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Yes, you will need to apply for Medicaid for her. What you should know about Medicaid:

- not to be confused with MediCARE
- its rules differ from state to state
- the application has a "look back" period that varies by state: no less than 2.5 years up to 5 years. Check your state for the look back timeframe.
- family can inadvertently delay or disqualify their LO because of how they handle their finances -- especially non-documented transactions that appear as "gifting" of money or assets! This is why you should invest in a consult with an elder law attorney who knows about Medicaid planning for your mom's state of residence.
- being on Medicaid in a facility most often means a shared room.
- being on Medicaid in a facility does not mean your LO will receive lower quality attention or care.
- Medicaid in some states will cover some or all of the cost of AL. In other states it won't cover AL. It always covers LTC and MC.
- if your LO doesn't have many or complicated assets then the application is not that difficult to fill out but you will need your LO's sensitive information: SSN, birthdate, banking info, medical debt info, knowledge of her other assets requested on the form (mortgage, car, properties).
- Medicaid does not "take the house": it puts a lien on the home which will need to be satisfied when sold.
- Medicaid does not leave the other spouse destitute.
- Medicaid pays the facility directly using all but a small amount of their SS for the recipient for personal use. In my state it is $90, other states it is differing amounts. My MIL in LTC and on Medicaid does not need $90 worth of anything in any given month.

I hope this answers most of your questions/concerns!
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disgustedtoo Jun 2021
"- Medicaid in some states will cover some or all of the cost of AL. In other states it won't cover AL. It always covers LTC and MC."

I would check with Medicaid for the state before assuming it "always" covers MC, as each state has it's own rules:

"Special care units
Medicaid will cover memory care units in
nursing homes. Staff in these units have
specialized training in caring for people with
dementia."
https://www.cms.gov/Outreach-and-Education/American-Indian-Alaska-Native/AIAN/Downloads/Medicare-and-Medicaid-Benefits-for-People-with-Dementia.pdf

but, following a link there:

"Need for nursing facility services is defined by states, all of whom have established NF level of care criteria."
https://www.medicaid.gov/medicaid/long-term-services-supports/institutional-long-term-care/nursing-facilities/index.html

Then there's this:

"In almost every state, Medicaid will pay for some care in assisted living / memory care residences. However, an important distinction must be made. Medicaid, by law, is prohibited from paying for the cost of room and board or “rent” for its beneficiaries who reside in assisted living residences. Rather, Medicaid can pay for their cost of care in those residences. In very ballpark terms, half of the monthly cost of memory care goes toward “rent” and the other half towards the care the residents receive."
https://www.dementiacarecentral.com/medicaid/alzheimers#memory-care

This last site also says:
"In Nursing Homes
As mentioned previously, in all 50 states and Washington D.C., Medicaid will cover nursing home care for persons with Alzheimer’s or other dementias. This Medicaid coverage is an entitlement. Unlike, memory care communities, states are not prohibited from covering the cost of room and board in nursing homes. Medicaid will pay for the individual’s room, meals, and their care. Do all nursing homes accept Medicaid patients? No, not every nursing home will accept persons on Medicaid. There are private pay only nursing homes. Fortunately, the vast majority of nursing homes do accept Medicaid. In California, for example, it is estimated that 90% of nursing homes accept Medicaid. Complicating matters is the fact that nursing homes may only accept a certain number of Medicaid beneficiaries. If one enters a Medicaid nursing home as a private payer, and then becomes Medicaid eligible, the nursing home, by law, must continue to house and provide care for that individual."

It would be worth checking into, however I recall many times reading that NHs often require a need for NH care, above and beyond dementia. This doesn't mention it, only that not all NHs accept it, many that do have limited space.

Best to contact Medicaid directly or go through an EC atty.
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LTC Medicaid. Find a facility that accepts Medicaid, usually a skilled nursing facility, that she can self pay for the first 5 months and then transition to LTC Medicaid once her funds are depleted.
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Candee, get a referral from the local area on aging for a needs assessment. Explain to them what is going on and what you feel she needs for care. This is the 1st step to placement. Also, get a list of vaccinations required. In AZ you need a current clear TB test, now maybe a covid vaccine??

This will help you find the best facility and they can provide you with a list of Medicaid facilities.

If she has a monthly income and it is too much to qualify for your states Medicaid program, check into a Miller Trust, before you spend all of her savings.

If she has any medical issues that would require a visit to the hospital, well, that is the fastest route to getting in a facility. You tell them that you can not care for her safely and for her to be discharged to your home would be a completely unsafe discharge. They will help you find a facility.

Best of luck. I know that this is very challenging to do but, you know what is the best situation for all involved.
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disgustedtoo Jun 2021
"Miller Trusts are not recognized in Pennsylvania as an income/resource exclusion."
http://services.dpw.state.pa.us/

As for Medicaid, each state has different rules and coverage. Some will only cover NHs, and the person must need specialized nursing care. Too often dementia doesn't qualify. From what I could see, PA income limit is $2130/month and seems to require nursing care. You'd have to check it yourself, but it may not cover AL or MC. That doesn't mean give up, it means you need to contact the Medicaid office to find out what coverage there is. It does appear that PA covers some in home care. That may help keep her home longer, reducing cost needed for a facility.
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