Long term disabled. Has anyone faced how to live when caretakers die & housing disappears?

[deborahjoy429]

I am in my mid 40s and not in the position of having a tight knit family. I'm currently housebound/bedridden and living with my parents who are extremely elderly. I became ill suddenly on a mission trip as a minor.

I do NOT have siblings who are compassionate, believe in following medical science rather than pushing the body in unhealthy ways in "faith," and in housing situations that would be suited to my particular needs. My SSDI barely covers my out of pocket medical expenses and food--not housing, property taxes, or utilities. Yet I'm ineligible for more helps.

I've been advised that it is extremely crucial to have my parents purchase some sort of small real estate for me in a trust or something like that. It's one of the few things I can legally own without it effecting my eligibility for the program that pays the premium for basic medical insurance.

But I'm still just not seeing how to pull this off, especially if I'm going to be within a couple of hours of ANY family member, as my family members who don't live overseas live in extremely pricey areas of the east coast. Property taxes are HIGH. Suitable housing for my needs (first floor living and laundry only, no carpeting, quiet bc of both my long hours in bed and nervous system issues, etc.) but still small is rare and usually involves steep HOAs (and is usually 55+ to boot!).

Has anyone else faced this? Even though I've connected w disabled folks online, including those w my illness, there was only one person within a couple of hours of me. And she did not succumb to the illness until after she'd had enough years in a successful corporate job as to go 50/50 w a relative on building a new home. She had both savings and insurance from her job in addition to SSDI. My only resources are SSDI. I certainly don't know anyone to go in on housing with. And although I did have some years where I could get out to church while I was living in a different part of the country, I literally don't know anyone in the state I'm now (a state whose border edge is close-ish to some of my siblings) other than medical providers or persons who've been hired at times to assist me.

There is also that matter that I really do need regular help with a variety of things and don't know how to predict the future on the front, as I've gotten weaker trying to do to many things without sufficient understanding support.

Has anyone else sorted these things out?

Has anyone perhaps been in a situation where you were trying to rent out part of your residence perhaps as to cover costs--but a residence that's not on the rental market specifically?

 

[HarleyER]

I am in my mid 40s and not in the position of having a tight knit family. I'm currently housebound/bedridden and living with my parents who are extremely elderly. I became ill suddenly on a mission trip as a minor.

I do NOT have siblings who are compassionate, believe in following medical science rather than pushing the body in unhealthy ways in "faith," and in housing situations that would be suited to my particular needs. My SSDI barely covers my out of pocket medical expenses and food--not housing, property taxes, or utilities. Yet I'm ineligible for more helps.

I've been advised that it is extremely crucial to have my parents purchase some sort of small real estate for me in a trust or something like that. It's one of the few things I can legally own without it effecting my eligibility for the program that pays the premium for basic medical insurance.

But I'm still just not seeing how to pull this off, especially if I'm going to be within a couple of hours of ANY family member, as my family members who don't live overseas live in extremely pricey areas of the east coast. Property taxes are HIGH. Suitable housing for my needs (first floor living and laundry only, no carpeting, quiet bc of both my long hours in bed and nervous system issues, etc.) but still small is rare and usually involves steep HOAs (and is usually 55+ to boot!).

Has anyone else faced this? Even though I've connected w disabled folks online, including those w my illness, there was only one person within a couple of hours of me. And she did not succumb to the illness until after she'd had enough years in a successful corporate job as to go 50/50 w a relative on building a new home. She had both savings and insurance from her job in addition to SSDI. My only resources are SSDI. I certainly don't know anyone to go in on housing with. And although I did have some years where I could get out to church while I was living in a different part of the country, I literally don't know anyone in the state I'm now (a state whose border edge is close-ish to some of my siblings) other than medical providers or persons who've been hired at times to assist me.

There is also that matter that I really do need regular help with a variety of things and don't know how to predict the future on the front, as I've gotten weaker trying to do to many things without sufficient understanding support.

Has anyone else sorted these things out?

Has anyone perhaps been in a situation where you were trying to rent out part of your residence perhaps as to cover costs--but a residence that's not on the rental market specifically?

Hi Deborah

Without understanding some of your personal and private situation, if your parents are willing to help, I would seek the advice of a financial planning lawyer immediately. A good attorney knows the nuiances of the law, how to protect and grow your assets, and any government assistance programs that might be available. They are not cheap (we paid $3000 for ours). But I just listened to a pastor who wife has a degenerating disease which required a nursing home. He said he spent the money to find a good FP lawyer who was familiar with the law. Doing so, he was able to get his wife into a nursing home at minimum cost to him.

Your case might not be as severe and the situation sounds different. But I think a good FP lawyer might steer you in the right direction. It be worth calling around and seeing if they can help. Sometimes the initial consultation is free.

 

[deborahjoy429]

Hi Deborah

Without understanding some of your personal and private situation, if your parents are willing to help, I would seek the advice of a financial planning lawyer immediately. A good attorney knows the nuiances of the law, how to protect and grow your assets, and any government assistance programs that might be available. They are not cheap (we paid $3000 for ours). But I just listened to a pastor who wife has a degenerating disease which required a nursing home. He said he spent the money to find a good FP lawyer who was familiar with the law. Doing so, he was able to get his wife into a nursing home at minimum cost to him.

Your case might not be as severe and the situation sounds different. But I think a good FP lawyer might steer you in the right direction. It be worth calling around and seeing if they can help. Sometimes the initial consultation is free.

Thank you very much! Yes, a lawyer will soon be involved, but I need to come up w possible courses of action first and am at a complete loss the more I learn about the laws. I’m unable to have the conversations of be present for the appointments.

 

[Joseph G]

Don't really have any useful advice to add - kinda in a similar boat with uncertain future financially and care support. Just wanted to let you know that I prayed fervently that God would make His path clear for you. If you are like me, He has a pretty good track record of providing for all my needs. He is Jehovah Jireh!

 

[deborahjoy429]

Don't really have any useful advice to add - kinda in a similar boat with uncertain future financially and care support. Just wanted to let you know that I prayed fervently that God would make His path clear for you. If you are like me, He has a pretty good track record of providing for all my needs. He is Jehovah Jireh!

Thank you, Joseph!

 

[Hazelelponi]

When my husband dies I'm like you, I need the physical help and there's little way to afford caretakers

With your parents see if you can't get them as you said to secure the home in your name now.

It has to be out of their name a certain amount of time or the state might come after the property for any outstanding medical the state had to pay during end of life care.

The last 6 months of a persons life is the most expensive thing ever for most people. And some states have determined to come after the homes after death to recoup some of these costs the state ends up paying out.

The first year I was disabled my medical bills exceeded 1 million dollars, I'm not sure by how much because after that they stopped telling me, I hit a twist in the health insurance policy at that point causing the rest of my medical covered at 100% instead of 80% for so long as I kept the policy.

But the last 6 months of a persons life is much more expensive than some disabilities... My father's last 6 months he had hospice, but my daughter was completely hospitalized for a majority of her last 6 months and had several surgeries.

So, talk to attorneys about getting the real property in your name right now. Right now. Talk to them very seriously about this, it's not you taking from them, it's making sure they can leave something for you.

If they cannot. You are stuck with rents that charge according to your income level. They are more expensive than your income can actually afford, but it's not full price so it's at least some relief.

You need to live in town for grocery delivery and pharmacy delivery services, but Walmart and regular grocery stores offer online shopping and they deliver if you live close.

Your medical will pay for in home care if it's needed, but they don't pay for anyone to help with house cleaning.

And if you live in a town you can get medical transportation to and from doctors appointments.

If you are going to need help with house cleaning and cooking you may end up in a nursing home young, it's just that simple. I've seen it before... I'm a bit worried I'll be there myself too young...

But I've not gone through this yet, like you I've just been looking at all the facts with a wary eye.

I'll keep you in my prayers.

 

[deborahjoy429]

Hi Deborah

Without understanding some of your personal and private situation, if your parents are willing to help, I would seek the advice of a financial planning lawyer immediately. A good attorney knows the nuiances of the law, how to protect and grow your assets, and any government assistance programs that might be available. They are not cheap (we paid $3000 for ours). But I just listened to a pastor who wife has a degenerating disease which required a nursing home. He said he spent the money to find a good FP lawyer who was familiar with the law. Doing so, he was able to get his wife into a nursing home at minimum cost to him.

Your case might not be as severe and the situation sounds different. But I think a good FP lawyer might steer you in the right direction. It be worth calling around and seeing if they can help. Sometimes the initial consultation is free.

Thank you so much for chiming in here and for your prayers especially. Almost everything you say has significant extra complications and barriers for me. I do not have access to the services yo name in my state, could never afford the monthly costs of the home we are currently in and would likely lose many benefits in reselling it, and there are many more more personal and even more overwhelming family issues…. I’m really stunned and at a loss. You underscore the vulnerability and severity of my position. But I’m going to need many miracles in hearts and provisions. I have at least offered some early actionable steps and strong words, but they’ve not taken any of them.

 

[Joseph G]

Fervent prayers lifted up for you, Deborah, my heart goes out to you. I am on disability too and am facing the fact that I won't be able to afford nursing home or hospice when the time comes. All I can offer is some poignant Scripture when the doubts and fears threaten to overwhelm. It does comfort and encourage me to be at peace and concentrate my energy on serving Him faithfully each day. He has never failed to provide for us so far, right?

Isaiah 46:3-4 NIV

"Listen to me, you descendants of Jacob,
all the remnant of the people of Israel,
you whom I have upheld since your birth,
and have carried since you were born.
Even to your old age and gray hairs
I am he, I am he who will sustain you.
I have made you and I will carry you;
I will sustain you and I will rescue you."

And...

Psalm 92:12-15 NIV

"The righteous will flourish like a palm tree,
they will grow like a cedar of Lebanon;
planted in the house of the Lord,
they will flourish in the courts of our God.
They will still bear fruit in old age,
they will stay fresh and green,
proclaiming, “The Lord is upright;
he is my Rock, and there is no wickedness in him.”

Hope this blesses you!
Joseph

 

[deborahjoy429]

Thank you so much, Joseph. I am sorry that you are also facing a degree of “but that’s impossible” regarding your eventual future. May God provide for you in surprising ways!

Even though I’m still on the younger side of things (I’ve been ill since I was 21) the Isaiah 46 passage has been a favorite throughout illness.

 

[Christopher Range]

I have been disabled(brain aneurysm, hydrocephalus, epilepsy), pretty much since birth(I recently had my 57th birthday). I lived with family until three months into my marriage(1992-2000). I n' my (ex)wife moved out, because. She n' my mother(who I was living with at the time) kept arguing. She chickened out, when I had a seizure. By running out of the bedroom. When we separated, I lived with my father n' step-mother for six months, then my mother for six months. Then, Over the next four years. I lived in single-family home that was zoned for one lease only, but. The owner had five leases on the property. Then two different apartments' living in a platonic relationship with the same woman. Why, Did I risk my life doing that, when my health obviously didn't matter to her. I lived out-of-state, with my mentally-ill (now ex)fiance. I had two seizures in front of her. She didn't bail on either one.

I am already looking to move closer to the church congregation I am a member of.

I have no intention of having a caretaker or living in Assisted-Living. Because their only interest is $, not my broken heart.

 

[dzheremi]

Hi, OP and others.

This is my situation, so yes I have. I have been physically disabled since birth (CP), and my mother passed when I was 14, my father when I was 37. I'm 41 now, though for various reasons related to my dad's own health condition I had already been living on my own since approximately age 24, with three years between then and now when I was back to living with my father and having to be his full-time carer because he was dying (which, as you might imagine given my own situation, did not go well). So I guess I'm proof that's possible to navigate this situation, though it sure isn't easy.

I never had parents purchase any kind of property of housing for me (my father, rather, did the opposite by selling for his own personal gain what little property he had been given after the death of his own parents, thereby cutting me and my brother off from the "inherited wealth" that many of my generation are benefitting from, but that's another story), so I can't speak to that, but I have been employed off and on (mostly off) for most of my life, which helps to supplement the meager SSI I get and makes life a bit more bearable a lot of the time (summers, ironically, are the exception, since I work in education, so the time between the last week of May and the second week of August is pretty tough in some ways). I know that you are bedridden, OP, so that definitely would limit what you can do, but I also require alternative arrangements due to my own limitations and was able to find work online, though it took 13 straight months of searching multiple hours a day every day to find my current gig. Like most things, it is made exponentially more difficult by circumstances, but it is thankfully not entirely impossible -- just less likely to pan out than it would be if we were able-bodied. That's the cards we're dealt, I suppose.

One thing you may want to look into (and I don't know if all states have their own equivalents of this, but it's worth researching what your state may have) is the option to have a government-backed savings or investment account for the disabled. In my state (California), these relatively new accounts are part of what is known as the "Cal-Able" program, which exists to help disabled people manage their money and have a way to accumulate some savings without risking losing their eligibility in state-run health programs like Medi-Cal and Medicaid. It has been a while since I looked at the limits and requirements for everything (since it's kind of hard to care about them when you're not bringing in a paycheck at all right now...), but from memory, in my state it is something ridiculous like a two-thousand dollar 'ceiling' before you start getting into trouble, meaning that if your number comes up in a random audit and you are found to have more than $2,000 total (across all accounts taken together -- checking, savings, etc.), you will lose your eligibility. With a Cal-Able account, however, I believe you can have up to around $20,000 per fiscal year before it starts potentially causing problems, but I'm nowhere near that, since I can only afford to put in $28 a month right now. The potential drawbacks of this account are that there is a flat fee person contribution ($3.08), and at least at the time in which I set it up, you were required to choose a blind stock portfolio in which to place the contributed money (I have heard this has changed in 2024, but I don't know the details). Thus it is not technically a savings account akin to what you can get at a bank -- it is an investment account, preforming according to the level of risk you are willing to tolerate. To use myself as an example, I have a balanced portfolio of 50% stocks, 50% bonds designated "moderate risk", and am currently sitting on a mighty $85.17 from a principal of $168.54, so this year has so far not been kind to me. Looked at from a big picture perspective, however, I believe it is still ultimately worth it for me, since losing $83.37 over 6 months is better than having to obsessively check on all my accounts to keep from being threatened with having all my medical assistance taken away (which has happened to me in the past, just by the way, before I was aware of these limits; I thought I was being good by saving up roughly $3,500 through a combination of frugal living and selling as much personal property as I could manage, only to get a letter from the state six days before the end of the month informing me that if I did not "spend down" the $1,500 overage before the end of the month, I would lose my Medi-Cal...yikes! Thankfully I had a close friend who needed a car to replace the one she had that had recently become scrap, so I was able to 'force-donate' my way out of this problem, as ridiculous as being in that situation in the first place was).