My mother-in-law has very advanced dementia (she was diagnosed with Alzheimer's in Venezuela, but based on her symptoms and disease progression, we think it's more likely LBD). My husband, who is a U.S. citizen, brought her from Venezuela to take care of her due to the dire situation in that country in terms of access to medicine, food, etc. He has petitioned for residency for her, but even once that is granted, she will be ineligible for any kind of government benefits for at least 5 years. In the meantime, he and his siblings are footing the bill for in-home care. She is living in our home. First she had a live-in caregiver, but due to a host of problems with that individual, we are now trying to coordinate a couple of caregivers who come for the day, and we take care of her on the weekends ourselves as best we can. Neither of my husband's siblings live in the U.S.; they have been helping a lot financially, thank God, but are not around to help shoulder the day-to-day physical and emotional toll of providing care for someone who does not even know who or where she is anymore, let alone who we are.
She cannot walk, talk, feed herself, use the restroom, anything. Her mind is completely gone; the only thing she can still do is eat. And eat she does. She will keep eating as long as you keep putting it in her mouth. Given this and her lack of any other life-threatening physical health problems, I fear this situation could drag on for years. Meanwhile my husband has had to sacrifice his career to try to care for and coordinate care for her, and the environment the situation has created within our home as well as the constant stress over who is going to take care of her and how it will be paid for is weighing heavily on our household and myself.
Everyone agrees she should be in a nursing home at this point, but at $4,000 a month minimum, it's just not within the realm of possibility. She has some savings but they would run out within a couple of months of nursing home care. Even split among the 3 siblings, trying to afford that level of care for more than a few months would be nearly if not completely impossible. And again, we're talking a minimum 5+ years before she could possibly be eligible for Medicaid, even if her petition were granted tomorrow--which it won't be; the attorneys are saying that these applications are currently taking a year or more to process. The 5 years would start when the petition is granted. So realistically, that means 6+ years. We previously inquired into ALF, but none of them will take her because she can't walk. We almost got financial assistance from Vitas for hospice care, but then they found out about a pension she gets in Venezuela--which would be about $10 a month if you could actually get it out of the country--and we were denied and told it would cost us $5,000 a month for someone to come once a week.
That is my vent and my rant. My question is: Does anyone know of any sources of funding for nursing home care for people who are ineligible for Medicaid but who don't have the means to pay privately? Any kind of charitable funds, foundations, etc.? Every day is filled with anxiety at what will happen if this drags on for years. I know we have to take it one day at a time, but we also have to plan for the future and anticipate that this could go on for years. She's only 76 and again, no serious physical health conditions that we know of besides the severe dementia and Parkinson's, and she is still eating with gusto.
Any advice or suggestions anyone could give would be very well-received. Thanks for reading!
Yes, I know you are
desperate. You sound like you are on your last nerve.
I was in the same situation with my mother and she's an American citizen. They told me she had too much $ in the bank ($5,000.) and made too much $ on Social Security ($1,800./ mo.). She did not qualify for anything. She was in stage 5 Alzheimer's and unable to live alone anymore. I have to keep working.
We live in Tijuana, Mexico and a social worker gave me the names of 3 facilities, one in Tijuana, one in Rosarito and one in Ensenada. We chose the one in Rosarito for its homey feel. The price WAS $1,300./mo. but, over the course of 2 years (and her dementia getting worse and needing more care), increased to $1,900./mo. Still a good deal BUT we don't have $ to contribute, so her SS wasn't enough. We found another place here in TJ that's much cheaper ($750./mo.) Good medical care but not the fanciest of living conditions (older house, older furniture, etc.).
I saw that you folks moved TO Florida. Where did you come FROM?
Would it be possible to move to a US border state (Calif., Texas, etc.) and place your MIL in a Mexican care home for less than half the price? Your husband may have more job opportunities in another state also.
Hey, I know it's a long shot and this option is for less than 1% of the American population. But desperate times call for desperate measures. The added benefit would be that they speak Spanish.
I tried to have my mother in my home but she was getting naked and urinating on the floor. Also, she wouldn't let my husband help her at all. He works from home so it would have been great. I commute across the border for my job and spend a lot of time on the road.
If nothing else, this is another option to consider. From the sound of your posts, I hope you find a place for her soon.
If this might be an option, I'd be glad to help you.
Buena Suerte!
But I’m also going to suggest you get into being involved whatever Venezolano diaspora community that is in your area region. There’s going to be others out there & dealing with the same issues & will have realistic suggestions. Like in Houston, huge community although more Marachucho as they worked oil & gas industry.
Catholic Charities has a lot of programs in Florida (not knowing your religious background) including programs for indigent persons, immigrants and refugees. Here is the website and description of services in Central Florida.
cflcc.org/healthcare
They have many locations in Florida - if you're in another part other than Orlando, they may be able to refer you to another agency.
The Area Agency of Aging in Florida may know of immigrant programs. With her health problems, private insurance is most likely not an option. Here is the website for the Florida Department of Elder Affairs.
elderaffairs.state.fl.us/doea/arc.php
The Alzheimer's Association Or Parkinson's Foundation may be able to give you referrals.
Unfortunately, there is so much need for services in the US for citizens and refugees that the 5 year stipulation was put into the immigration policy for newly arriving persons. As you and your husband know, when you sponsor someone, you agree that the person or you as sponsor can cover expenses for the 5 years without government assistance. Most states are overwhelmed already with citizens and legal residents that there just isn't a lot of extra help other than natural disaster, temporary help. I am so sorry that your mother-in-law's situation is so dire and admire your desire to help.
You or she may qualify for SNAP, aka food stamps, as citizens.
@Guestshopadmin: Thank you for the ideas. I will check into those. I agree re agencies and foundations and charities already being overwhelmed by the costs of citizens and permanent residents and refugees. Long term care is so expensive and people are living so long, outliving their minds by so many years. It really makes you question the utility of scientific and medical advances to keep people alive longer than they actually need to be.
I am trying hard to take it day by day and be as supportive as I can of my husband, but I find it very challenging indeed. It is hard for me to see his mom or spend more than a few minutes a day with her; it's just too depressing and leaves me feeling desperate for it to end. I try hard to keep my mind from going into anxiety loops of thinking this will never end and that I will be dealing with this and living like this for the next 5 or 10 years, and watch him sacrifice everything for someone who doesn't even know her own name, let alone his, and who has no hope of ever getting better, but only of getting worse and worse.
In the meantime, we are lucky in the sense that, because she is so far gone and can't walk anymore, there is no risk of her wandering or, as you mention, doing things like peeing on the floor (or dangerous things like lighting the gas stove, etc.) So her care is easy in a certain way, but difficult in the sense that she can't do anything for herself, so it's a lot of changing diapers, spoon-feeding her, etc. The caregiver whom we recently let go bathed her every day, but just about broke her back lifting her from the hospital bed to the wheelchair and then to the chair in the shower. She not only doesn't walk, she doesn't do anything to help you pick her up--it's like picking up a 120-pound bag of potatoes. Dead weight. She also just slumps over in her chair or wherever you put her, so you have to hold her up to keep her from falling over sometimes.
Thank you for the suggestion! I will bring this up as a possible benefit of moving to San Diego.
Small world, I was born and raised in San Francisco.
For a large city, the way it's divided into neighborhoods, makes it "homey." I miss it and the old friends who are still there. I Don't miss the rental prices of apartments however.
My mom had a 2 BR apt. on Dolores St. (The palm tree street) for 50 years and was on rent control. She paid $1000./mo. When she left, they painted, put in new cabinets and carpet. It rented for $4,000./mo!!
On the other side;
We rent a 2 BR/1Bath home with secure parking for 2 cars, tiny front "yard" and a back yard and patio in one of the best neighborhoods in Tijuana, less than 1 mile from the border, for $450./mo.
As they say, location, location, location.
Hopefully I'll still be on this board when you move. If you choose the San Diego area, you'll already have a neighbor.
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