What do you know about disability and preserving a home?

[BlsdMama]

I am fully abled currently.  However, PLS is a thief.  I will be completely and totally incapacitated.  As DH is older than I am it would not be ideal to depend on him taking care of me forever - obviously I will need some sort of caretaker.

What do we need to think on and prepare for?  We are going to see a lawyer to discuss this.  The home is actually in his home, but not sure that that matters.  As DH will have several children at home - even if it's slow, I do not want him financially liable for my care.  This isn't on his radar yet but it's definitely on mine.  

[fairfarmhand]

You need an elder care attorney. You can file for separation of assets. Start the process tomorrow becuase it’s a time consuming process where they’ll audit your financials to make sure it’s needed. My dad had to do this to get mom on Medicaid when her care was going to bankrupt him. 

[fairfarmhand]

My dad and mom were both 52 when she passed. She was diagnosed at age 40 with cancer and fought it for 12 years. It was brain cancer so she spent many years in and out of therapies and rehab. She had nurses and caregivers for years. Most of that came out of my dads pocket but it came to. Point where he couldn’t any more. He was going to lose everything. He had one attorney tell him to file for divorce on paper. It was less expensive than the separation of assets to divorce my mom, but he just couldn’t do that. He spent the money and got it done.

[Scarlett]

I know nothing useful but I did want to say you are amazing the way you continue to think of others in the face of this illness.  (((Hugs)))

[Ausmumof3]

Sending hugs and praying for a miracle for you.  

[Pawz4me]

I'm no expert, but my understanding is that a divorce on paper isn't a way to help qualify for Medicaid coverage. From what I understand divorce only works if the (former) couple is actually maintaining separate residences. I don't know the history of that, it may be a provision that was relatively recently enacted.

I'm so sorry you're having to think about this, Kelly.

[Faith-manor]

2 minutes ago, Pawz4me said:

I'm no expert, but my understanding is that a divorce on paper isn't a way to help qualify for Medicaid coverage. From what I understand divorce only works if the (former) couple is actually maintaining separate residences. I don't know the history of that, it may be a provision that was relatively recently enacted.

I'm so sorry you're having to think about this, Kelly.

This is how it works in my state. They will deny coverage if the divorce is for financial convenience so the relationship has to end from their perspective, ie. separate residences and if there are minor children involved, a legal custody arrangement. OP, I am so very sorry that you have to plan for this.

[mumto2]

All I can do is send hugs and prayers.  

FWIW, My understanding is this is a issue that is determined by what state you live in.

[Katy]

I think how this is handled is so state dependent that only an attorney can give you advice.

There are definitely legal ways to preserve the assets without fraud, including trusts and separation of assets. You may need an estate attorney as well as an eldercare attorney.

[BlsdMama]

15 hours ago, fairfarmhand said:

You need an elder care attorney. You can file for separation of assets. Start the process tomorrow becuase it’s a time consuming process where they’ll audit your financials to make sure it’s needed. My dad had to do this to get mom on Medicaid when her care was going to bankrupt him. 

So - something to consider - I have none.  The house has always been in his name (alone) and I have zero income.  That's useful, yes?

[BlsdMama]

1 hour ago, HeighHo said:

Perhaps think about working enough, while you can, to qualify for SSDI?  

 

 

LOL.... um, not sure about that.  Can't imagine what job would hire me now where I could just not come in, especially if it's cold, and bring the kids, and take off for all the medical appointments, and, oh yeah, Mayo says my arm is now beginning to be affected, so typing soon is out the window....

I'm not exactly prime hire material.  And I'd need daycare for like a half dozen kids while doing nothing physical or remotely stressful that can accelerate.  I don't mean to be sarcastic, but this isn't likely or a possibility it looks like.  We've thought long and hard about this but my almost complete degree is less than useless.

[BlsdMama]

15 hours ago, Scarlett said:

I know nothing useful but I did want to say you are amazing the way you continue to think of others in the face of this illness.  (((Hugs)))

It's nothing extraordinary, trust me.  I fell on Friday.  It had been a perfect and wonderful day.  Fell - the first public one ever.  Drug down the four year old.  Then got home, brushed it off, had a GREAT night....  We played boardgames, made homemade pizza, got flour on the floor.  I slipped in it and couldn't regain my balance.  Fell backwards, hit my head on the open dishwasher.  Worst fall by far at this point.  Trust me when I say I'm slowly destroying my kids bit by bit by bit. They sobbed harder than I did, including the 17yo.  

[BlsdMama]

3 hours ago, Arctic Mama said:

I’m not sure I 100% understand what you’re asking - as your spouse, and you having been a stay at home mom, he is legally/financially responsible for your care and care arrangements until such a time as it would qualify for state nursing or disability to pick up the tab (which varies wildly by state).  How would he get out of that, legally, short of a divorce? Communal assets you both live in and use are counted, and can’t ‘not be counted’, even if he has paper ownership? Even for our child’s care arrangement, OUR life insurance and 401k valuations were considered and we were applying for him as an individual, to the exclusion of the entire rest of the family.

 

There are some ways to partition assets, but one can’t really just cut off a disabled spouse to protect their own income and assets for retirement, to my knowledge.  Am I just misunderstanding what you’re asking?

 

I’m very interested to hear what the lawyers have to say about this and hope they have good news for the family in terms of finances!  

I think what I'm asking is how will the state be sure that he will have enough to raise the kids?  Will we lose the house we're raising them in?  What can happen here?  No one can expect a man raising nine kids to live in some kind of apartment or something like that? Right?  I have NO idea what I'm up against. We've never experienced this.  Both of our sets of parents are alive and healthy.  My parents are the ultimate planners so they have extended assisted living insurance to cover stuff like this.  My DH has long term disability insurance as well through his work.  We both have life insurance, but that's not useful here.

So, I get when you have two adults, they can take half of the assets for the one.  Can they just swoop in and take EVERYTHING?  Because I've contributed nothing financially - absolutely not a dollar.  And I get that he has a degree of responsibility here - but to more than just me.  And it's bad enough these kids are going to suffer through absolute YEARS of watching this happen and ruin their entire childhood, but what I want to know is - what do I need to do to let them keep the rooms we decorated together and painted together and built together?  What do I need to do to save any semblance of normal and NOT WRETCHED for these kids?

[scholastica]

You really need to speak to an attorney well versed in these matters in your state. They are the only ones equipped to answer all these questions. I'm so sorry you are going through all this and shouldering the knowledge of what this could mean for your family. My heart breaks for all of you and you are in my prayers.

[Guest]

14 minutes ago, BlsdMama said:

It's nothing extraordinary, trust me.  I fell on Friday.  It had been a perfect and wonderful day.  Fell - the first public one ever.  Drug down the four year old.  Then got home, brushed it off, had a GREAT night....  We played boardgames, made homemade pizza, got flour on the floor.  I slipped in it and couldn't regain my balance.  Fell backwards, hit my head on the open dishwasher.  Worst fall by far at this point.  Trust me when I say I'm slowly destroying my kids bit by bit by bit. They sobbed harder than I did, including the 17yo.  

My god, Kelly! This breaks my heart beyond description. I wish I could magically make this better. I wish this could be fixed. 

You are not destroying your kids, though. This illness is the destructive force. You are the one playing boardgames and making pizza. You have already provided exemplary mothering for 20+ years. You have already shown them a level of selfless motherhood and personal integrity that is rare in this world. 

I wish I could answer your logistical questions. 

[Jean in Newcastle]

I would ask about setting up trusts for the kids.  I don't know what the answers are, but that is one question I would ask. 

[Jean in Newcastle]

I would also ask about disability insurance.

[fairfarmhand]

1 hour ago, BlsdMama said:

So - something to consider - I have none.  The house has always been in his name (alone) and I have zero income.  That's useful, yes?

Yes! Very good. Mom wasn’t on her house either I don’t think. Really these laws are set up to protect the system from millionaires milking the system.each state is different and there may be a threshold under which your family is “safe”. 

For my dad it was more than just filing a bunch of papers. He was audited and presented his case before a judge. The judge confirmed that there was a need for separation of assets. It’s not something that anyone can request. It’s an onerous process.

[Faith-manor]

I just found this. It looks like there have been some new laws to help keep families from going bankrupt.

https://www.nolo.com/legal-encyclopedia/medicaid-protections-spousal-income-during-long-term-care.html

This makes me think that the issue with our friends is that income is much higher so some of it can be taken, but the house mortgage, taxes, and utilities are based on needing ALL of her income. They have a pretty big mortgage. So that may be why they are having to divorce and have the disabled spouse move out. It may be the only way she can keep the house, and being underwater on the mortgage means she can't downsize in order to stay married. Hopefully OP you guys are in a little better situation than that.

And Kelly, you ARE NOT ruining your children's lives. You didn't ask for this disease. Blame the disease. But your children love you, and believe me having lived through a lot, very few people get through life unscathed by serious problems. Your children will make it precisely because you and your husband love them so much and will do everything you can for them. You are planning ahead right now. That is such a precious gift to them! That makes you a rockstar of a mother.

[Faith-manor]

And about SSDI, I am wondering if you could find something that is just a few hours per week of data processing at home, and have your children who are older take turns typing while you give direction. You could then set up quarterly payments to SS and just send all the money you do make, not figuring it into your household budget so that the family doesn't become used to the extra income. It might be possible to "work" enough before things get really tough to qualify for SSDI. 

Just spitballing here. You might not like the idea of a child helping with this, but it can be both skill and character building.

[mumto2]

35 minutes ago, Quill said:

My god, Kelly! This breaks my heart beyond description. I wish I could magically make this better. I wish this could be fixed. 

You are not destroying your kids, though. This illness is the destructive force. You are the one playing boardgames and making pizza. You have already provided exemplary mothering for 20+ years. You have already shown them a level of selfless motherhood and personal integrity that is rare in this world. 

I wish I could answer your logistical questions. 

So very true.  It sounds like they are encountering this illness in a pretty honest straightforward way.  I think that’s the way it has to be to not mess them up.  They have to know what is real.  They have no doubts that they are loved, which is EVERTHING!

Total side track story and I know it’s completely apples to oranges but your kids need to know it all and I suspect they prefer to be there when you fall.  So........  My dear friend recently died of cancer.  When given great odds she always ended up in the losing like 3%. Always.  It seemed statistically impossible.   It was horrifying and messy.  Her daughter at 14 always got the whole brutal truth, no sugar coating.  Her daughter is a wonder.  Probably the most put together young lady I know.  She has mourned deeply, loves to talk about her mom, adores her dad.  She is good, really.........I adore her.

 

[maize]

1 hour ago, Jean in Newcastle said:

I would also ask about disability insurance.

Other than the SSDI others have mentioned no disability insurance is going to take someone with this kind of medical problem. If work were an option and she could get hired by an employer with a group plan maybe ...

We've faced this in my family--my husband doesn't qualify for life, disability, or long-term care insurance.

This is where we really need better government safety nets; companies are only ever interested in their bottom line.

[BlsdMama]

2 hours ago, scholastica said:

You really need to speak to an attorney well versed in these matters in your state. They are the only ones equipped to answer all these questions. I'm so sorry you are going through all this and shouldering the knowledge of what this could mean for your family. My heart breaks for all of you and you are in my prayers.

Emailed DH.  We found a lawyer close that specializes in specialized trusts, elder care, etc.  We'll talk to him about it.  Thank you for the recommendation.  I think, even if it isn't good news, it can't be worse than the worst case scenarios in our heads, right?

2 hours ago, Quill said:

My god, Kelly! This breaks my heart beyond description. I wish I could magically make this better. I wish this could be fixed. 

You are not destroying your kids, though. This illness is the destructive force. You are the one playing boardgames and making pizza. You have already provided exemplary mothering for 20+ years. You have already shown them a level of selfless motherhood and personal integrity that is rare in this world. 

I wish I could answer your logistical questions. 

You and me both Quill - you and me both.  I just really hate that they're watching it.  

2 hours ago, Jean in Newcastle said:

I would also ask about disability insurance.

Unfortunately it isn't offered to spouses through DH's work and I could not pick up a policy as the official diagnosis would preclude me.  

1 hour ago, fairfarmhand said:

Yes! Very good. Mom wasn’t on her house either I don’t think. Really these laws are set up to protect the system from millionaires milking the system.each state is different and there may be a threshold under which your family is “safe”. 

For my dad it was more than just filing a bunch of papers. He was audited and presented his case before a judge. The judge confirmed that there was a need for separation of assets. It’s not something that anyone can request. It’s an onerous process.

 

1 hour ago, Faith-manor said:

And about SSDI, I am wondering if you could find something that is just a few hours per week of data processing at home, and have your children who are older take turns typing while you give direction. You could then set up quarterly payments to SS and just send all the money you do make, not figuring it into your household budget so that the family doesn't become used to the extra income. It might be possible to "work" enough before things get really tough to qualify for SSDI. 

Just spitballing here. You might not like the idea of a child helping with this, but it can be both skill and character building.

Thanks Faith.  I'll be honest - I started back to school about three years ago with the intention of seeking my MFA in Writing.  I've been in school, registered for full time credits ever since and I'm only 17 credits from graduating and I'm still opting to drop down to part time this next semester.  

There is an alternative program to SSDI (SSI) - but I'm not sure that it's more than supplemental income.  We wouldn't need the supplemental income - just the protection for care, maybe?  Our ALS Clinic has a lending library and so for things like power chairs, etc., it won't be at a cost to us.  (MDA does a LOT of good.) There are some diseases with which you can be immediately qualified with a few specific diseases.  I know this because of Stiff Person (it was one and part of the reason so many seek that particular diagnosis. I was really surprised when my neuro told me that.)  Motor Neuron Disease can qualify - ALS does but PLS does not auto qualify for SSDI. 

And then again maybe not?  DH's company is in the process of being bought up by a bigger fish.  Currently we have very good medical care insurance with no lifetime out of pocket maximum - but I'm not sure what it would all cover.    

45 minutes ago, maize said:

Other than the SSDI others have mentioned no disability insurance is going to take someone with this kind of medical problem. If work were an option and she could get hired by an employer with a group plan maybe ...

We've faced this in my family--my husband doesn't qualify for life, disability, or long-term care insurance.

This is where we really need better government safety nets; companies are only ever interested in their bottom line.

  

Precisely.



You know it's damned if you do and damned if you don't.  We're committed to homeschooling which is a full time job and then some with nine still at home.  I can't fathom, as stretched as I am now, consciously saying, "Hey, I think I'll go work out of the home 20 hours a week, opposite schedules of the husband I don't get to see enough," considering the situation.  Just cannot wrap my head around it.  Rock vs. Hard Spot  Never been a fan of government medical - quite a perspective from this spot.

[Scarlett]

Kelly I don't want to make you cry, but please just do what you can for the financials but don't fret too much about it.  Keep on  enjoying  your family in the here and now.  Your husband and kids can keep the ship afloat when and if you are gone.....it won't be the money they mourn, it will be you.  

[AmandaVT]

My MIL's husband set up a trust for his house and much of his assets. It was in his adult child's name. He had a terminal cancer diagnosis and he wanted to make sure that the home stayed in the family. I'm not sure how he set it up, but it worked and the kids kept the home and assets. He didn't need a nursing home, so I don't think they had to work with managing Medicaid eligibility, but I remember him saying that is what prompted him to set up the trust.

[Pen]

I agree with lawyer idea.   Probably someone experienced with trusts. 

I would look at other things too like figuring out how a disabled accessible pod (or similar) might be done in your yard or something like that so as perhaps to be able to be at home for your children absolutely as long as possible. And or a possible accommodation for live in care person... if you could afford such. 

Starting to put in good grab bars in tub, accessible handles on doors, etc. 

As well as helping you this also could all help your husband as he ages. 

[Pen]

Btw: Keeping a house where there is a spouse and or minor children still in it should not be a problem in most states I have knowledge of—but a lawyer to help figure it out is definitely a good idea.