My Mom cannot afford her long term care. I cannot either. What options are available to us?
My mom, age 76, was diagnosed with Alzheimers about 2 years ago. Her parents and only sibling are deceased. My 2 siblings refuse to help financially or emotionally. Ironically my brother and brother-in-law are both Southern Baptist Ministers. My Bro-In-Law insists he and my sister are not responsible for our mother's "poor financial decisions" (Mom was on SSI Disability from age 50 until age 65 when she began drawing SS retirement. She naively assumed Medicare would take care of her medical needs) Therefore, they have no intention of contributing one penny. Legally, I guess he is correct but morally, I would beg to differ. As for my Brother, he will continue to ignore the situation. He says it isn't his concern. I am sure that if there were an inheritance involved, Mom would have scads of attention.This is our mother, yet they offer no Christian concern for her. I wonder how their congregations would feel if they knew.
My husband and I work construction. With no one else stepping up, we left our home of 23 years and moved 1400 miles back to our home state to do what we could for Mom. Since our jobs require us to work out of state approx 7 months a year, we cannot keep Mom in our home. When not traveling for work, I visit Mom at least 2x a week including at least one "field trip" away from her assisted living facility. When we are away, I pay a companion to visit and keep an eye out for Mom. I believe she will be treated better if the facility staff knows someone will be dropping in regularly.
Presently, Mom is in an ALF. She is capable of some self sufficiency, ie, bathing, dressing herself and and other personal hygiene tasks. Her ALF changed ownership about a year ago. I'm no longer comfortable with the level of care her facility provides but we cannot afford to move her anywhere else. That scares me. I feel trapped in this facility because it is the only place we can afford. Mom even shares a room with another lady. The room is designed for one resident and is only divided by a curtain, This helps keep costs down for both ladies.
My mother has no assets and an income of $1710 a month. Needless to say, this is far below the cost of her monthly care. My husband and I are spending between $1900-$2600 a month to subsidize Mom's care incl. the ALF, companion, medical copays and deductibles,meds, personal care items and personal hygiene products. We cannot keep this up indefinitely.
Her income is too high to qualify for medicaid and I don't know where to go for help. SC is limited when it comes to elder care resources. I can't get information or answers about someone in my Mom's financial situation. With an income in excess of Medicaid guidelines, yet not nearly enough to pay her bills, I'm at a loss for solutions.
I live in fear that as this disease progresses and Mom continues to deteriorate, the rising cost of her care will overwhelm us financially and it will still not be enough to pay for her care.
We have already spent most of our emergency savings and had to stop contributing to our retirement last year. He has been wonderful, but I just cannot ask my husband to sacrifice everything we have worked for to provide for my Mom.
Although Mom has never been declared incompetent, I do have her MED & legal POA. She still knows her name, DOB & SS# though many other things do escape her mind. Each month Mom signs a check in partial payment of her room fees drawn from her account. This account has direct deposit for her SSI and small retirement check.
The only way her ALF would allow Mom to move in was if I signed as a secondary party to guarantee payment of their fees.This is the only document I have signed promising payment. I am not the guarantor for any Medical bills or other expenses.
The contract I signed was with the old owners. Does that contract automatically transfer to the new owners along with the physical property? I was never asked to sign a new contract after the sale.
Legally, what are my financial obligations? If Mom requires additional care at a price I cannot afford can they just put her out on the street? What happens when the time comes that she needs to move to a skilled nursing, lock down Alzheimers unit? The cost of that type care is easily triple what we are paying now and I can't pay that.
You'll need one to do the Miller Trust anyways.
Advocates...if by that you mean an ombudsman, then they are about resolving specific problems rather than helping to manage elders affairs.
Now for dealing with the day to day stuff, that would not be an attorney as that is not the best use of their time or your & your mom's $ imho. A geriatric case manager might be what you need. My mom is in TX and I'm in another state, I am a freelancer so I can either be very busy for several days or weeks @ 14 hr days or have nothing to do after invoicing (lol). If I had a regular job, I would have hired a geriatric case manager to work with my mom & I. I looked into doing this but as I can come in on the odd since I freelance, didn't feel the need so far. At my mom's NH there are a couple of retired RN or BSW/MSW that do this - runs about $ 40 - 80 an hr - and they all seem to do a weekly visit and email you with a photo(s) of the week and give you a weekly update on their weight, activity and other needs (shoes, $ for beauty shop or better yet walk/wheelchair them down to the beauty shop) to going to the care plan meeting or doing Skype. They also do this for those still living at home or in IL or AL. Word of mouth is how to find one. This is all private pay from you to them unless your mom has assets that need to be spent down to get her qualified for Medicaid. What I would suggest is on your next visit to mom, would be to go to visit several NH (you on your own) and talk with either social services or admissions to get their short list of geriatric case managers who others use at their facility, while at the same time look to find a new place for your mom to move to that is a NH so she hopefully can stay there till forever. (I'd not mention any of this to the AL your mom is in either.)Then call as many as you can to find a couple or geriatric case managers that you like and can update you in a way that works for you (phone vs email or Skype) also they likely will have suggestions as to which NH would work best for your mom.
Also if you move your mom, be sure to look to see what her current AL has as down as notification time for moving her. Most require 30 day and some do 60 days and you have to pay the difference. You want to avoid this if you can. When I moved my mom from her IL to NH, they had a 30 day requirement. So I moved her 32 days after notice and only had to pay for 2 extra days. If she had stayed 8 days, would have had to pay for the whole month but most have a 7 day window after the 30 day notification. NH on Medicaid get reinbursed by the day so they don't care about notification like a private pay AL or IL does.
Another thing that worked for me was to approach the whole mom stuff as if it was a job and did a folder on my laptop for it and a hard copy binder X 3 (1 left at my mom's house, 1 at my house and 1 in my car) and either scanned everything or xeroxed all X 3. All her documents and possessions became inventory or supplies or storyboards or materials to be dealt with and fit into my system. For me, this balances out the crush of emotion that can paralyze you in making decisions or the panic of having to try to find that one piece of paper at 3AM. There is nothing better than being organized with all this and you get a phone call from the Medicaid caseworker that you have like 48 hrs to establish that your mom's life insurance policy is term and not whole life in order for mom to be approved and you have the documents you need to do this right there and get faxed over in time. Also it makes it simple when you have to do the annual recertification for Medicaid. For me this years one was right in the middle of a huge butt project and thank goodness I could just do a few clicks to fill out the form and mail back. For me, it works.
To say I am overwhelmed is an understatement. During the months I work, it is 7 days a week w/12 hour minimum days. This makes it so hard for me to get anything accomplished besides work. Mom is here in SC and I'm leaving next week for 2 months work in KY. I'm not sure if I can (or should) start trying to change Docs until after the first of the year. Then again, we don't know when our spring 2013 season will begin or even in what state we will be working. Last year, I returned to work in early Feb. It is kind of hard to juggle.
I wish I had someone here to help follow thru with anything I can get started. Is this what a paid elder care advocate would do for us? Have you had any experience with paid elder care advocates? Would an elder care attorney help me with this type of issue? The paid companion I have is willing to transport my Mom to whatever Dr. we need to use but she does not feel comfortable with any role beyond companion/transportation. Any other suggestions for me?
I'm glad that I have found this forum. I've had more real advice in 24 hours than in the past 6 months chasing info elsewhere. Thanks so much for your response.
Medicaid - which is needs based - looks at income and assets for financial.
On the face of it, she should qualify. If her income (the $ she gets monthly like SS and retirement or an annuity) is above the limit, she can do a Miller Trust to get her under the Medicaid limit. Miller is used all the time & is totally legit - must be done by an attorney though.
Personally, I'd forgo AL and work on getting documented for her medically needing skilled nursing care in a NH and finding a NH that takes Medicaid for her to go into.
She not going to get better, this is not going to be easier. The facility where she is at now has no incentive to do that as she is private pay. If they have no social worker..well it sounds pretty minimal in providing services.
It may be that she doesn't have enough in her AL chart to make the medically needed grade for NH. If they are living at home or in IL, and need to move to a NH, you will need to work with their MD to get the criteria in their medical history to show they need skilled nursing care. Just because they are old, or have dementia or incontinent, etc. is not enough. My mom went from IL to NH and bypassed going to AL. She was able to do this as she had a critical weight loss (more than 10% in 30 days), critical H & H and some other conditions. Sometimes the MD will need to change their meds – like go from Exelon pill to Exelon patch (more “skill” to apply); or change a med to one that needs to be compounded daily which you can’t do at home. Each state has it’s own criteria for admission under Medicaid. They will be evaluated at the NH and often are denied because they don’t have enough “critical” conditions because there is no history when living@ home. You will have to work with NH and your parents MD’s to get whatever done to establish the need for NH if they are coming from being at home or IL. There is a whole medical appeals process in each state for this and separate from the financial appeals. For those still living at home or in IL or AL without a huge disease history, becoming a patient of the MD who is the medical director of the NH is good as they will know how to create & write up the health history chart so that it passes Medicaid medical review. Call about to NH's in your region and find out who is the medical director and get mom to become their patient. Usually there will be a couple of doc's who are medical directors of 2 or 3 NH, those are the one's I'd see. They know how to structure a chart to make it work. What will likely happen is that she moves to the head of the wait list at the NH as she is their patient too.
Oh another thing, (this concept is actually Jeanne's) think of yourself as an only child - your siblings have basically washed thier hands of dealing with mom and dumped it on you. You & your dear DH are beyond wonderful to do all that you have done to this point but you have to think long term for your own situation and financial security first and foremost. Imho that means mom moves into a NH and under Medicaid. about 70% of NH stays are paid by Medicaid nationwide so most of us will deal with this either with our parents or for ourselves. Good luck.
I've had a hard time finding the right contacts for elder care information. I have spoken with 2 Elder advocates, one I found on the internet and the other was recommended to me thru a different ALF in our area. Both told me we couldn't afford their services.
I am going to attempt connecting an elder care attorney in our area but it will be a crapshoot as to who to contact. We have only been back in SC after 27 years away. I do not know anyone locally that can recommend a lawyer to me. The facility where my mother resides does not have any type of social worker so there are no references available there. The eldercare advocate I found on the internet gave me info for the ombudsmen assigned to our county but my calls to that office were not returned.
Is there any type of road map to help me navigate this bureaucratic mess or is a lawyer the only option?
Have you had to deal with a similar situation in your area? What has been your best source for info where you are? I am heading to KY to work next week. In the past I've heard radio programs on elder care including informational resources for that state. I wish SC had something similar.
Thanks for your responses and advice. I appreciate all the help I can get. Keep us in your prayers as we plod thru this. If any other ideas come to mind, please let me know. Thanks again.
I am sure that there is financial help for your mother. You just need to make the right contacts.
You and your husband are being extremely generous, and perhaps also a little foolish. You've dipped into your savings. You (understandably) have no money to put toward your retirement. If you continue to do this another 5 or 10 or even 20 years, who is going to take care of you in your old age? Here is a clue: it won't be your siblings!
You have no obligation to financially support your mother. You have whatever obligation you signed with the alf. And yes, they can evict your mother for non-payment.
I think what you need to do is spend a little more money and consult an Elder Law attorney regarding starting the Medicaid application process, and consult her county's Social Services regarding what other services she might be qualified for. It wouldn't hurt to contact your local Alzheimer's Association, too. By doing these things you will be honoring your mother.
Good luck to you!