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#1 of 44 Old 04-24-2011, 07:13 PM - Thread Starter
 
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I am a full time caretaker for my disabled husband.  A rundown of our history...

 

Before we got together and even when we did, he was in the military and I was in college and then working.  I quit my job due to his health issues at the end of 2005 (after only a few months of work at my first "real" job post-college).  We lived with my mother-in-law and I had lots of savings, and it wasn't a hardship for me to take work off to help him go to therapy, etc.  I did think I was going back to work but was unable to find another job.

 

He looked like he was improving; I got pregnant in the summer of 2006.  I was unable to work during pregnancy because I was on bedrest, or during our SN son's first years.  With therapy, inpatient programs, etc., DH improved some, and we were hopeful.  He was getting a small disability payment.  I inherited a house when my father died, and we moved there.  The disability checks barely but did cover our cost of living expenses, barely.  He went to school and graduated last spring.  He got a decent job, but his ability to work ended right at New Year's when he was hospitalized again. 

 

He will be unable to work again, and I am unable to as well because I am his full time caretaker.  (And believe me, he needs it.)  We also have two preschoolers, one of whom is on the spectrum and was receiving weekly therapy for a year or more but he has since graduated therapy and is thus not coverable by social security - but he can't attend daycare either because he is considered "not a good fit" - I'd have to look further into getting more evaluations for him, but right now that's not even a priority, as he's doing fine at home.  Not like we can afford preschool for him anyway - the state childcare assistance only works if both parents are working... H has a note saying he can't parent the kids but I also can't work because he needs a full time caretaker (he was just released from the hospital not long ago) and that's me.  But the state doesn't care WHY I'm not working... just that I'm not. 

 

In the meantime I'm trying to get some sort of verification that I am a full time caretaker and not just unwilling to work.  But even when I was looking for a job actively, every day etc I couldn't find one because I have no job history and it's a cruddy market - despite my education, etc.  No one cares that I had an excellent internship back in 2004, y'know?

 

Anyway.

 

We are currently in ridiculous debt because I had a miscarriage and it involved stupid amounts of money that Medicaid will not cover, and won't because it happened a year ago and it is now in collections, and we have moved out of state.  So that's like, 20,000 worth... and we have no income.  H's disability comes to about 14K a year and barely covers our rent here, never mind food, utilities, gas, anything.


He has applied for full disability from the VA and from Social Security, but that could take up to a year or more to go through.  In the mean time we are not eligible for social programs because we have too much assets - because we still own our old house (we can't afford to put it up for sale) while we are staying in another state for his medical treatments.  We are actually going to me moving clear across the country (from Washington state to Florida) incurring yet MORE bills, breaking leases, etc. when we have no credit anymore anyway... just to stay with my mother because we can't afford to live on our own here.  He can get treatment there at the hospital system.

 

We have always lived within our means, VERY frugally, and never had a cent of debt before this past year with the medical bills, etc.  I am just despondent over this, and to top all the stress off, they just discovered H has lesions on his brain as well, which look pretty serious, and he could essentially drop dead or become paralyzed suddenly.  That's a really good chance, according to his doctors - and since it involves his brain stem, there's very little hope.  He's already experiencing symptoms which show that it's really serious by now.  We are still only in our 20's.  This is not supposed to be happening.

 

Basically... where do I go from here?  I want SO, so much to be financially independent, but there's no way to do it.

 

We can't even afford to go back to where our old house is and sell it.  That's what has to be done but I can't just up and leave the husband here while I go off there.  I've tried to generate income from home in various ways but I can scrounge a couple of hundred a month maybe, and that's at the expense of sleep - and between caring for everyone I'm down to about 3-4 hours a night as it is.  We don't have any family except for my mother, but she's a very toxic individual and I'm not at all thrilled to be moving in with her under her roof, but we have literally no other option at this point.

 

We can't go back to our old house.  That's the only thing that would make SENSE but, I don't want to get into the reasons why not, but we can't.

 

I think with time it will work out because H will def. get the 100% disability, eventually we will somehow sell the house, and even if we have to pay off our debt with it and take a significant hit, we can probably still afford to buy a house, even a more modest one.

 

But basically, what happens if he dies?  That's my biggest fear.  I mean, it's NOT about finances that I'm afraid he's going to die, it's just a horrible thought on so many levels, but since this thread is about finances... how on earth would I then go about life?  I haven't even worked and have two babies to support, and I doubt we'd be getting much if anything in Social Security payments since we are so young and H only worked for like... I dunno, 6 years total?  What would happen financially?  How would I be able to be completely on my own, financially, emotionally, etc. to care for our babies, when practically all I have done for my adult life is be an unpaid caretaker for either my husband or son?  Incidentally my father was ill from when I was 8 until he finally died when I was pregnant, so all my life it has been like this, this stress.  I am falling apart and I'm unable to see clearly right now.  I know, I know, "get support" sounds easy to say but I can't even leave my husband alone, nor do I have money for a babysitter or gas to get anywhere supportive, and we're going to be moving soon anyway, so it's not like I can just up and find a support group or get a mental health break. 

 

Everyone is counting on me, his doctors are all just assuming I can support us financially until the disability goes through, and that could be months - theoretically even years - and if God forbid he dies, then no more disability, the end, that's it.  But I can't find a job.  Literally.  When I was looking for a job, and I promise it was a good effort, I couldn't find one to save my life.  I was applying at low end jobs, mid-range jobs, entry level, this that, cold calling, networking, trying to be self-employed, trying to freelance or get doula clients, etc etc - NOTHING.  Not one client, not one interview.  I don't get it; I never had a problem back in the day when I was looking for work.  I have college and some grad school under my belt, a varied job history (though they're high school or college jobs) etc... But no, nothing.

 

I am panicking and need some clear thoughts on how to proceed.  Not just immediately but in formulating a long term plan - if one can plan around this sort of situation...

 


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#2 of 44 Old 04-24-2011, 07:37 PM - Thread Starter
 
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Also, I am just so, so tired of the stigma of being poor.  I know this is totally neither here nor there, I just wanted to vent.  I grew up upper middle class - took trips to the Caribbean and Europe every year, lived in a privileged town, went to a nice private college with tuition paid for from a fund, the family had nice luxury cars, etc.

 

For my entire adult life I have been poor.  Not just not doing as well as my parents, but qualified-for-welfare poor.  I can't afford to get my kids an ice cream cone on a hot day sort of poor.  Never mind traveling, I'd like to be able to walk down the street without worrying about being raped or mugged.  Never mind new clothes, I've worn the same pair of summer sandals for 16 years now.  No typo there, sixteen years.  I'm so tired of it.  I think of frugal living as a challenge, a fun one, and even if I had all the money in the world I would still yearn to live the same sort of lifestyle - thrift stores, gardening, cooking from scratch, etc.  But now it's getting to the point where we can't even afford to garden anymore, we have to buy Ramen.  And there's no end in sight, in fact it's just getting worse.  I don't ever complain in person about the fact that my husband is disabled.  It's not his fault and I wouldn't choose any other man.  But by God, I feel like I'm constantly being judged for choosing (when things looked different, health wise) to have children with him.  I had no idea that he would be permanently unemployable and that our son would have special needs that didn't let me work for several years, nor could I predict a recession or the fact that I would simply be unable to find a job despite all the effort in the world I have put into it.  I.  Just.  Don't.  Get.  It.   I don't get why we can't get ahead.  Not even to upper middle class, not even to regular middle class, for goodness sake, I just want to be able to MAKE it, somehow, anyhow.  To not be nearing 30 and watching everyone I grew up with being independent, and I'm... well, I'm not.  My family's not.

 

And not to mention that I see everyone living LIFE.  I don't really have a husband (he's physically present but that's about it), I can't give my kids the childhood they deserve, even though I do my best... and I don't even mean a ritzy one, just a normal, healthy one - library, playdates, parks...  We can't even do free things together as a family because of H's disabilities.  And I can't just leave him alone - I have to be with him practically all the time.  The only other choice is for him to be an inpatient.  And as someone who has visited him daily in those inpatient hospitals for months at a time, year after year, I would go without all the sleep in the world rather than have him have to stay there.  And even if he did... That's a great life too, single mom to two, one SN, with no husband at all.  At least this way I have someone to fall asleep at night with.  When he's gone, it's physically painful to me to miss him... and who knows how long he even has left?  They said they'd put him in a group home too, but then we're right back to square one... I'm not with him, he's not there, and he wants to be with us, and we want to be with him.

 

I have had a free ride on so many levels.  Free college tuition AND a free house.  OMG.  How many people would KILL for those??  But I haven't earned any of it, and even with those blessings, it's still like, we're still not making it.  I don't have college debt, but I can't work either.  We have a house, but we can't live in it.  And I don't see, realistically, how we can make up for all these years.  Even if H miraculously stays alive for the next thirty years, which isn't likely... then what?  I still am not making any money, we can't get ahead.  And if he dies, then I'm basically stuck on my own trying to start an entry level job search at like, what, a decade or two after all my peers?  I might as well not have a college degree at all since I went so long ago.

 

I'm so negative and I *realize* it, but whenever I try to think positively I think about... oh, I'm grateful for the sunshine.  Or the cat.  Or the smiles on my kids' faces.  Or whatever.  And those little zen things are great and wonderful and awesome, but they're not helping me get ahead when life's problems just seem insurmountable.


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#3 of 44 Old 04-24-2011, 08:04 PM
 
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I couldn't read and not respond. 

 

I think a lot of my decision-making, were I in your shoes, would hinge on what your husband's diagnosis was, and what his prognosis is.  Additionally- is it tied to his service, and what benefits can he tap into there?

 

 

I would also need to look at what the barriers are to living in a home I own free and clear. That is a lot to  walk away from, particularly when your income is limited.  On the flip side, is owning the home so great an asset that you can't get aid you need to feed your family?  If it is- sell the house asap. 

 

The zen moments can get you through the daily grind, but you need to formulate a way to improve this situation without leaping headlong into something more toxic by moving in with a relative that will create a miserable life and add more stress. 

 

Also, you need to find a way for the kids to have a life outside of watching you care for their dad.  You need to be able to get out with them just for the sake of going to the park and having fun.  Maybe respite care is something to consider- again- this would be a matter of what the problem is. If he has a diagnosis that will allow coverage for inpatient care, sometimes it will also pay for someone (including a spouse) to provide supportive care at home. 

 

It's the story of putting on your own oxygen mask first, and it sounds like you aren't able to let yourself do that.  You need help, and you need a break. 

 

The scary part about the what ifs-  you will manage.  Many other women have.  You put one foot in front of the other and you forge the path when there isn't one already there for you. 

 

You are stronger than you think. 

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#4 of 44 Old 04-24-2011, 08:19 PM - Thread Starter
 
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Thank you for the reply.

 

In the past, when things weren't so... dire, with him, the kids and I did have a lot more time on our own.  We got out a lot more, we had a backyard, etc.  It's only in these past few months that we've been essentially housebound, and only in the last two months that their dad has been here with us.  That's one of the reasons we're even considering moving in with my mom.  She will happily watch them for short times so I can go off on my own, or else she will stay with the husband while I get out with them.  They are happy enough and reasonably well content, although obviously the upheaval has been stressful on them, but I've tried to shield them as much as possible.  The worst part is moving from our house into an apartment where they have to be quiet... With my mom they'll be able to have their own rooms again, have a backyard, be able to make noise (they love to make music), etc.  And I'll hopefully not be so sleep deprived.  My mom is... she's very nice, overly nice, just very controlling in a passive aggressive way, if that makes sense.  We have issues such as religious disagreements, and just general who-runs-the-house stuff - she doesn't want me cooking, etc, when I like to cook for my family, etc.  But it's... she's not horrible, and it's a short term solution until our house sells.  I still don't like it though. =/  I don't like not being independent.

 

The reason we can't go back to Colorado at the moment is actually a decent one that I don't want to share on a public forum at the moment.  If you'd like, I can PM you further, but I don't think it's that, um, relevant really to say all the details.  And no, it doesn't involve any legal issues or anything like that, it's a personal one.

 

What I want to do is on the way to Florida try to somehow put the house up for market, maybe as is... it needs serious yard work, some roofing repair, the garage door and mailbox need replacing, and some painting/cleaning.  That's about it.  And then hopefully that house will sell about the same time as disability coverage kicks in, and maybe we'll look into some respite care etc.  We'll see.  Ugh.  It's just... I have my moments when it seems doable, and then others that seem not so doable.

 

Also, if I'm not mistaken, there's also a program where you can be a teacher while you study for your teacher's certification... I'm trying to look into that - IF it seems like respite care might work.  I don't know... if a job has to happen that might be a good way to go.


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#5 of 44 Old 04-24-2011, 08:37 PM
 
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I couldn't read and not respond either.

 

I know you will be far away from your house, but is there any way you could hire a property manager to take care of your house and generate some rental income until you're in a position to sell it?  We did this once when my ex's job took us overseas for a couple of years.  We didn't have to pay the property manager outright, he took a cut of the rent every month. 

 

 


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#6 of 44 Old 04-24-2011, 08:44 PM
 
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I'm so sorry for what is happening to you.  greensad.gif

 

You have a lot of things going on.  My time is short, so just a couple of questions.

 

Since you can't live in the house, why can't you sell it, even as is?  

 

If his condition is related to his time in service, when he passes (I'm so sorry, again) would you receive benefits from the armed services?  I'm assuming he does not have life insurance, and it would be almost impossible to get it now.  

 

Do you need to be his full-time caregiver because of physical needs, or neurological needs (as in, he's not safe being left alone because he could injure himself or others)?

 

What assets do you have that make you ineligible for aid?  


Mom, wife, full-time student.  And tired.  DH, DS#1 (9/99) and DS#2 (9/09), and 2 dogs.

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#7 of 44 Old 04-24-2011, 11:52 PM
 
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Quote:
Originally Posted by MagnoliaDragon View Post

Thank you for the reply.

 

In the past, when things weren't so... dire, with him, the kids and I did have a lot more time on our own.  We got out a lot more, we had a backyard, etc.  It's only in these past few months that we've been essentially housebound, and only in the last two months that their dad has been here with us.  That's one of the reasons we're even considering moving in with my mom.  She will happily watch them for short times so I can go off on my own, or else she will stay with the husband while I get out with them.  They are happy enough and reasonably well content, although obviously the upheaval has been stressful on them, but I've tried to shield them as much as possible.  The worst part is moving from our house into an apartment where they have to be quiet... With my mom they'll be able to have their own rooms again, have a backyard, be able to make noise (they love to make music), etc.  And I'll hopefully not be so sleep deprived.  My mom is... she's very nice, overly nice, just very controlling in a passive aggressive way, if that makes sense.  We have issues such as religious disagreements, and just general who-runs-the-house stuff - she doesn't want me cooking, etc, when I like to cook for my family, etc.  But it's... she's not horrible, and it's a short term solution until our house sells.  I still don't like it though. =/  I don't like not being independent.

 

The reason we can't go back to Colorado at the moment is actually a decent one that I don't want to share on a public forum at the moment.  If you'd like, I can PM you further, but I don't think it's that, um, relevant really to say all the details.  And no, it doesn't involve any legal issues or anything like that, it's a personal one.

 

What I want to do is on the way to Florida try to somehow put the house up for market, maybe as is... it needs serious yard work, some roofing repair, the garage door and mailbox need replacing, and some painting/cleaning.  That's about it.  And then hopefully that house will sell about the same time as disability coverage kicks in, and maybe we'll look into some respite care etc.  We'll see.  Ugh.  It's just... I have my moments when it seems doable, and then others that seem not so doable.

 

Also, if I'm not mistaken, there's also a program where you can be a teacher while you study for your teacher's certification... I'm trying to look into that - IF it seems like respite care might work.  I don't know... if a job has to happen that might be a good way to go.

 

This is Teach for America. http://www.teachforamerica.org/ I don't know what your degree is in, but they welcome all kinds of people. Teaching is a pretty intense job though (speaking from experience). I mean, long hours in the first few years. Really long hours. Not just if your DH is in respite care, but the kids are in daycare a full day plus. That's just the first few years though.

 

Thought I'd weigh in. Best wishes for you. I understand about the house - we had a house we were under water in and moved for a job, very far away. Couldn't rent it, couldn't sell it - it went into foreclosure. Sometimes a house is not empowering, its a trap. Good luck.

 


K: high school teacher and mama to DS1 (7/07), loss (10/10) and DS2 (7/12). Married to my best friend and soon to be elementary school teacher!
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#8 of 44 Old 04-25-2011, 04:40 AM
 
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I couldn't *not* reply.  I've never heard such of such a desperate situation.  I am so sorry you are going through this.  I'm at a loss for comforting words and in your situation I don't really know much more that you can do other than what you've done.  I guess for starters, forget about the medical bills.  Let them go and don't worry about paying them.  I think it's a crime in the US that people go hungry because they can't afford their health care.  That should never happen in a civilized society.  Just don't worry about paying your hospital bills.  Let them go to collections.  They can't garnish any disability payments your dh might receive, so let it go.  You have no taxable income, so they really can't do anything.  If you have to, you can eventually file bankruptcy on them and there are ways to protect your assets such as your house.

 

The other thing I was thinking about is the house.  Is there anyone that you trust that you could "gift" the home to?  Someone who would not sell it out from under you, but would keep it for your future and gift it back to you?  I'm thinking this must be the asset that is preventing you from getting social services.  I know this sounds risky, but you might try to talk to a lawyer (I'm sure there are those who will help pro bono) to see how you might get the assets off of your own books, but protect them for you to get them back in the future.  I have no idea if that is even possible.

 

I know that for privacy reasons, you don't want to disclose more information on a public forum.  I don't blame you one bit, and I'm cautious, as well.  Some of the nuances of your situation may mean that there ARE other options available, but based on what you've written, I just don't know what.  All I can say is that you sound like a very strong woman and wonderful mother and wife.  With everything you are dealing with, I commend you for still being able to get up in the morning.  Again, I'm so sorry you are going through this.  Best of luck!!

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#9 of 44 Old 04-25-2011, 06:20 AM
 
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You shouldn't have to deal with all this on your own, you need help. I would start calling/meeting with:

  • social worker at hospital? They exist, right? (I'm not 100% sure about USA stuff). 
  • local community centres etc (we have one nearby that offers free counseling/support groups for caregivers, free playgroups, and they are also able to refer them/fight on their behalf for any services they need)
  • churches which may offer counseling, playtime for kids, community
  • food banks
  • thrift shops-some have bag sales to get rid of extra clothes now and then. ours has a sale every week (fill a garbage size bag for $6.50) but others usually offer it in spring/fall to get rid of seasonal clothes. 
  • libraries-many libraries deliver books to those who are house bound. Free entertainment for kids. 

 

I would try to sell the house. Moving in with your mother sounds a little stressful but hopefully she would be a great help. You didn't mention ages of kids, will they be going to school soon/in a couple years? At that point I would focus on getting a great job. For now I would enjoy the time you have as a family. hug.gif

 


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#10 of 44 Old 04-25-2011, 06:36 AM
 
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Keep looking & asking for resources.  For example, WIC does not look at assets, only income.  So you will qualify for that until your youngest is 5.

 

I agree with selling the house as-is, or using a property manager.  Even if it sells for less than you thought.  Since you inherited it, you aren't under water.  So hopefully you can just get it sold.

 

Toxic situations are difficult to get out of.  Are you REALLY sure that is the only option?  That is truly better than living in CO?  (for your kids? for your own sanity?)  Search for "toxic" on these forums to see other mama's experiences to see if any of that rings a bell... or if you will be able to be immune to her passive-aggressive and controlling behavior.

 

Lots of mamas here have experience finding resources ... for healthcare, for your SN son, etc.  Ask on other forums too.  Keep asking different people (officials) the same question until you get an answer.  I would hope that home ownership wouldn't mean that you don't qualify for any help.  People have to live somewhere, and that house isn't costing you mtge/rent money!  Keep looking around mama.

 

Good luck mama.

 

 

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#11 of 44 Old 04-25-2011, 07:11 AM
 
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Oh, mama.  I'm so sorry for your situation.  I wish I could do more to help you, but I can give you one piece of information that may help put your mind at ease a little for the "what ifs" you're worrying about....

 

You said your DH has applied for disability through the VA - which says to me (as a fellow former military spouse) that his condition is service related.  If the worst happens, you and your children will become eligible for what is called DIC (Dependency Indemnity Compensation).  You and your children would also qualify for educational benefits from the VA, as well as being able to use his VA loan if you should want to.  I hope that it doesn't become necessary, but I at least wanted to let you know this.

 

Please know that I am thinking of you, your DH and your babies.  hug2.gif

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#12 of 44 Old 04-25-2011, 07:29 AM
 
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Have you looked into becoming a copes worker (I think you said you are currently in Wa.  I don't know if they have it or something like it in Florida as well)?  You can be paid to be his caregiver.  It isn't alot of money, but it is more than nothing and might be a start?  I don't know what the income/asset eligibility is and whether the house would disqualify you, but here is an info page...

 

http://www.lawhelp.org/documents/1541615102EN.pdf?stateabbrev=/WA/ 

 

It sounds like getting rid of your house ASAP is key, if you can't live in it...

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#13 of 44 Old 04-25-2011, 07:44 AM - Thread Starter
 
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The military wouldn't give us anything because the condition causing his physical health issues is the brain lesion which is in no way provable to being due to his time in the service.  It could very well be from a TBI but there's no way of proving it.  And yeah, life insurance could never happen - he can't even get health insurance, and the VA only pays for limited health insurance, and even with the stupid low disability we have we make too much for Medicaid.  Never mind affording health insurance for the rest of the family.  The kids qualify for Medicaid and that's fine and well but me, I'm screwed in every sense of the word.

 

The house is worth about 200K.  Well it's worth about 230-240 but realistically 200K is about right.  It's got 3 floors, 3 bedrooms, 2.5 baths, a finished basement, a small yard that I planted up with grapes and berry bushes and herbs and fruit trees when we had the money for it.  It's paid off but we're still paying utilities, taxes, insurance, etc. on it and it needs at least 10K of work to go into it before we can sell it.  We just don't have credit or money to do that.  I don't know if there's an option where it can be taken out of the final price; I'm going to talk to an agent today.  And it still has stuff in it.  I don't want to just... to just let it go.  The way assets work is that if a home is not your PRIMARY residence, it can be repossessed or whatever before you get any social services (including Medicaid for the kids in this state).  Since we're not physically there at the moment it's not our primary residence.  So if I applied for any services they could theoretically go after that - and I'm afraid collections could go after it too if I don't pay the medical bills.  I'm not sure, though.  I had a person who was going to rent it out and clean it out for one month's rent but she bailed on me after I moved, and I didn't have the ability to go back to find someone else.

 

I don't know if it's worth it for me to put up with my mom's stuff but I do think it'd be a better environment for the kids.  In the past week our apartment (which costs like 1300 a month and is as cheap as it gets here) has had one rape, one unidentified woman screaming bloody murder in the middle of the night, several muggings, all the cars in the garage had their windows broken (except ours and one other car), a bunch of vandalism, and weed smoked in the halls, and even our doormat was stolen from in front of our door (and this is controlled access) - and this one guy said "hey beautiful, I've been watching you" to me as I walked with the kids on the elevator as he followed me down the hall.  OK.  Excellent.  Never mind LEAVING the apartment and walking to the park - and two people got randomly shot on the public bus this past week, so forget just taking the bus somewhere safer.  Even if my mom was controlling and passive aggressive and spoiled the kids to death with her TV and plastic toys and totally undermines me and my parenting in every single way... at least she lives in a ritzy gated community where I don't have to worry about criminal activity every two seconds.  And for the record, I would be more than willing to go back to our old house, but H isn't.  And I'm not willing to go without him.

 

Oh, to the poster who asked - H is able to take care of himself physically for the moment - minus things like reminding him to eat or sleep, and he can't drive himself anywhere.  He also has a thing where he won't prepare food for himself or even go in the kitchen, even to make himself a cup of tea or a sandwich or something.  I mean it's not like I have to change bandages or wipe him or anything like that.  But that may change, as he is quickly losing the ability to even sit on a chair without falling over due to balance issues.  But he can't be left alone because of a myriad of issues.  He can't really function in society, gets very paranoid, doesn't think clearly, will take too much or not enough of his medication, sometimes judges that he should just take the entire bottle of whatever he has, or he has a panic attack, or, or, or.  Or he'll be fine one minute and then all of the sudden have this cloud on him where he thinks that everyone, including me, is out to get him and need a few hours to calm down. 

 

We separated for a little while last autumn, when he was working, before he was hospitalized again... and I had no idea what was going on with him, but he fell to 130 lbs (he's 6'1") because he wouldn't eat, he wouldn't sleep at night, but would just drive around all night aimlessly, etc.  I have no idea where the money he was making (about 3800 a month plus disability) went, as I never saw any of it.  It wasn't drugs, but I don't know what it was.  I know he bought a lot of expensive clothes and spent tons on gas, dating services, and some expensive electronics... but the rest of that money just basically vanished...  He's fully and truly incapable of taking care of himself on any level...  But the only real option the doctors give is that he can be an inpatient in their very... standard unit where everyone from Alzheimer's patients to schizophrenic patients to whoever else go.  It's really a nuthouse.  People will be screaming out or cackling or ranting about aliens or time travel all hours of the day or night, while they don't get to even shower without supervision, get to shave once a week, don't get to have shoe laces in their shoes or use their own brand of toothpaste or have any of their own possessions, and they eat hospital food every day.  They even have to stand in line to get a pencil sharpened, and never mind having a pen.  He couldn't even visit with the kids without a social worker supervising - and the one time I was able to arrange that privilege, the social worker got called away so he didn't even get to see them that day.  It's that, or him being home.  I'd do anything I could to keep him out of there.  Imagine a man you love being forced to live like that, week after week, month after month with no end in sight.  And every time I want to visit him I had to get a babysitter.  Before kids, when I was pregnant I was driving up every day despite supposed to be on bed rest, drove two hours there and two hours back every day just to keep him company during visiting hours... but that's impossible to afford now that we have kids and gas costs.  So I got to see him maybe once every two weeks for an hour, and talk on the phone whenever the nurses with control complexes felt it was OK - I'd call twenty times to be let through to him for three minutes of a monitored phone conversation...

 

OK, now I'm totally just rambling.


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#14 of 44 Old 04-25-2011, 07:48 AM - Thread Starter
 
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If he manages to get rated at 100% (which they're only counting his mental state, not the brain lesion stuff) then we will be eligible for stuff - and also for medical benefits, educational benefits, etc for the kids and myself.  That would be awesome.  They have already denied him a few times cos they won't like to give 100% out to someone so young, but as of his last hospitalization his doctors all say it's a no brainer that he get it.  But it could take months or even years for the paperwork to go through, we might have to appeal, and every time we change states the process starts over again.  So that's the bad part.  If he keels over tomorrow without him getting 100%, then we're not eligible for any survivor's benefits because we can't prove the brain injury was service related - for all we know it's been there from birth (although that's not likely).


There's also several types of 100% - there's unemployability, then there's being rated at 100% but without family benefits, and there's 100% with family benefits.  That's the one we're going for, but that's the one that's also hardest to get.  So it will probably take years of appeals etc.

 

The care giver option is interesting... I'm going to have to look further into it...  Thanks.  :)

 

ETA: Yeah, I checked http://www.military.com/benefits/survivor-benefits/dependency-and-indemnity-compensation#1 and he wouldn't be eligible at this point because his death wouldn't be a direct cause of his service.


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#15 of 44 Old 04-25-2011, 07:50 AM - Thread Starter
 
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Sigh.

 

"COPES can pay for personal-care services in your home in two ways. It can pay a private agency or it can pay a person you hire directly (called an “individual provider”). An individual provider may be a relative but may not be your spouse."

 

WHY?  WHY the heck is it set up like that?!?


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#16 of 44 Old 04-25-2011, 08:25 AM - Thread Starter
 
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Those are great - library delivery sounds fantastic, for one...  I'll also look for a church when we move...
 

Quote:
Originally Posted by HeatherAtHome View Post

You shouldn't have to deal with all this on your own, you need help. I would start calling/meeting with:

  • social worker at hospital? They exist, right? (I'm not 100% sure about USA stuff). 
  • local community centres etc (we have one nearby that offers free counseling/support groups for caregivers, free playgroups, and they are also able to refer them/fight on their behalf for any services they need)
  • churches which may offer counseling, playtime for kids, community
  • food banks
  • thrift shops-some have bag sales to get rid of extra clothes now and then. ours has a sale every week (fill a garbage size bag for $6.50) but others usually offer it in spring/fall to get rid of seasonal clothes. 
  • libraries-many libraries deliver books to those who are house bound. Free entertainment for kids. 

 

I would try to sell the house. Moving in with your mother sounds a little stressful but hopefully she would be a great help. You didn't mention ages of kids, will they be going to school soon/in a couple years? At that point I would focus on getting a great job. For now I would enjoy the time you have as a family. hug.gif

 



 


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#17 of 44 Old 04-25-2011, 10:27 AM
 
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My DH is also disabled, and we've been through a lot of what you are going through.  I've come to terms with the fact that we are, and always will be, poor.  It's still hard to deal with from time to time. 

 

If you need to talk, feel free to p.m. me. 


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You own the home in Colorado, and there is a program there that will help you.  It would take an act of God to get me to give up having free housing and being in a state that would provide care for my family in a way we needed it.  I'm sorry, but this really looks to be the best scenario for now.  Go home, get this program in place, wait out the time for disability determination, and get the house ready for sale.  

 

http://www.colorado.gov/cs/Satellite/HCPF/HCPF/1210324172195

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#19 of 44 Old 04-25-2011, 01:04 PM - Thread Starter
 
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H refuses to go there, and I can't go without him.  So it's really not up to me, it's not like I can convince him.  I've tried, believe me... =/


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#20 of 44 Old 04-25-2011, 02:59 PM
 
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Well, perhaps he needs a reality check.  You are responsible for caring for him, you, and your children.  You are the head of the household right now.  If CO is the best place financially and emotionally, I think you might need to make a tough decision to do the best thing for everyone. (Easier said than done, I am sure!)

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#21 of 44 Old 04-25-2011, 04:12 PM
 
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I'm sorry you're going through this. My sister-in-law faced similar circumstances last year, although her husband passed away unexpectedly only a couple of months after becoming disabled.

 

She did daycare, which let her care for him at home, but I don't know how she managed it. Her DH couldn't feed himself or manage his own hygiene.

 

Have you considered one of those companies that buys homes? I've seen them advertised, I don't know if they are legitimate or would give you a fair price. But in truly desperate circumstances, it might be worth it to have the house not listed as an asset when it's only costing you money (in taxes and utilities).

 

Best of luck mama.

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#22 of 44 Old 04-25-2011, 04:31 PM - Thread Starter
 
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...


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#23 of 44 Old 04-25-2011, 04:57 PM
 
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I think you're doing the absolute best you can, given the circumstances. I know when my brother-in-law was experiencing problems, he was less able to reason like an adult would. He was already prone to jealousy and it became toally out of control, and he just had a hard time realizing why he needed to stay in the hospital, then rehab, why his family couldn't always be there (whereas in his right mind, he would have FLIPPED OUT if his children had missed school for any reason, even to be with him). Given what you've described, it seems like it would be detrimental to your DH's well-being to return to CO.

 

I really think that getting the house sold would be a huge thing, OP. Even selling it for cheap - if that let you move FL, NEAR your mom but not WITIH her, get a little house or condo of your own, pay cash for it, and not have it count against you because it'll be your primary residence. . .well, that would be a huge thing, wouldn't it?

 

Also, if COPES let someone else take care of him, maybe that would be the mental health break you need? If you can hire someone of your own choosing, so it's a good fit, it might be ok. I would revisit that idea periodically.

 

And I also want to say, that I don't think there's a thing wrong with deciding to keep him home and not going back to CO. One of the things that comforts my sister-in-law, now that her DH has passed, is that she did everything she could. She brought him home, she cared for him, she fought for him every step of the way. It comforts her and her children to know they tried everything they could.

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Quote:
Originally Posted by HappyMommy2 View Post

Well, perhaps he needs a reality check.  You are responsible for caring for him, you, and your children.  You are the head of the household right now.  If CO is the best place financially and emotionally, I think you might need to make a tough decision to do the best thing for everyone. (Easier said than done, I am sure!)



Exactly.  I am all for supporting him since he needs that now, but you can't do that at the expense of the rest of the family.  

 

Are you his legal guardian at this point in time?  If you haven't put that in place- it's probably time given his erratic behavior.

 

You are doing so much for your family, and are stronger than I think I could ever be.  

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#25 of 44 Old 04-25-2011, 06:05 PM - Thread Starter
 
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Incidentally, moving back to CO wouldn't really solve our financial problems either, at this point.  We were basically scratching by with his disability payment (1470 a month) and that was when we didn't have any debt at all - now it's in the tens of thousands.  I guess it would improve things, but we would still have to find a way to move back there, break this lease here (which is another, like, 4000) - one moving pod worth of things is like 1500 to move, not to mention actually getting back there, fixing up the house, etc.  So we'd be like, 30 K in debt and that was the town where I literally applied to pretty much every last position and contacted every possible lead as far as finding a job, with no bites at all.  I'm serious, I spent months making about a hundred phone calls per day.  And I pretty much ran out of the goodwill of the child daycare supplement support people there.  They thought I was frauding them because literally EVERY week that the kids were in daycare one or both of them got sick in the middle of the week, and the school policy was that they would then have to be brought home for 48 hours.  And the CCCAP office literally didn't accept the school's word and my word that that was the case, they thought I was just trying to scam free daycare from them - esp. since the rate was figured without DH in the picture.  They wanted to send child support after him but right when they were going to do that, we ended up getting back together - and I never got a job (I was searching, but I never found one) and they were just basically upset and said my case was closed and I couldn't expect to get daycare assistance from them without stupid amount of appeals - and I don't have any more documentation to back up my case, either, so why would they let the appeal go through?  And there is NO way that I could get a job that paid for two kids in daycare as well as the amount needed to cover our rising debt.  If I could even GET a job, and like I said... that's doubtful. 

 

DH doesn't trust anyone, he barely trusts me.  I could offer him the option of another caregiver but I don't think that would go over super...  And the VA discourages people from getting power of attorney over their vets.  I guess they had legal issues a while back so they counsel heavily against it, because for some reason military culture is paranoid that all spouses want is the military bennies - and I guess the same goes for VA ones as well.  Urgh.  So although he was amenable to me getting POA for him while he was in the hospital, his social worker basically talked him against the idea and now he won't hear of the idea.  He says if anyone is getting POA over him it's his mother... and that's a nice long post for another day.  She just got fired and would love nothing more than to have him move back in with her so she could collect his check.  So I hesitate to push the POA issue too far - because the few times I've brought it up he viewed it as "proof" that I was just trying to manipulate him for his money.  He even came up with a scenario where Mr. Stalker and I were trying to get him committed before he and I run off together with DH's benefits.  (One of his diagnoses is paranoia, after all.)  Etc. etc. etc. 

 

The FIRST time he was awarded any money it was backpay (back in 06) for like 12,000.  He spent it all in two months.  To the last dime.  On what?  Who knows.  Cigarettes (he's since quit) and video games and I don't even know.  He spent like 900 on coffee alone, he just kept driving down to get coffee after coffee.  When I told his doctor that the first time he was an inpatient, wait no, second time, the doctor just shrugged and said that they were his benefits to spend as he pleased.  Like, what?  They said there was no way they'd give someone as young as me POA when he was relatively healthy.  Maybe the situation now has changed, but obviously the VA doesn't care one way or another what happens with the money once it's gone.  Even if he's incapable of dealing with it.  Which isn't even the case at the moment, really, cos he gives all the money to me voluntarily... but again, it's... it's touch and go.

 

It sounds like I'm making excuse after excuse, doesn't it?  Sigh.


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#26 of 44 Old 04-25-2011, 06:22 PM
 
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....... don't have much time but had to say that you seem like such a strong woman. Things will not always be this bad.

Someone suggested "gifting" your house to a trusted party. Would that benefit you so that on paper it appears that you own nothing? Then, it will always be there for you if you ever need it.

I wish you well. Sorry, wish I had some real advice but I am thinking of you here.


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#27 of 44 Old 04-25-2011, 06:37 PM
 
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I'm so sorry this is happening to you and your family.

 

2 things-

  • if you really cannot move back to CO, then you really just have to sell the house.  It's not helping you, it's draining you.  I like the idea of gifting it to someone, but I will warn you that social services usually looks for things like that- transfer of property, money, etc right before applying for benefits.  In fact, I think they look back about 2 years.  
  • The VA cannot tell you husband he can't pick a healthcare POA.  However, it looks like you've already crossed that bridge and your DH will not voluntarily make you POA.  There is the possibility of going to court and having him ruled incompetent to make his own medical decisions, and the judge can make you healthcare (and legal and financial, which sounds necessary) POA.  I know that sounds painful, but it may be the only way to protect yourself and your children.

 

I wish I had more advice.  I don't think things are going to get better leaving them the way they are.

 

 


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Quote:
Originally Posted by MagnoliaDragon View Post

Sigh.

 

"COPES can pay for personal-care services in your home in two ways. It can pay a private agency or it can pay a person you hire directly (called an “individual provider”). An individual provider may be a relative but may not be your spouse."

 

WHY?  WHY the heck is it set up like that?!?



Ugh...  I am sorry, I didn't know that...  If they would pay someone else to care for him, maybe you could use that time to get at least a part time job out of the home and bring in some money?  Maybe find out how much time you could get coverage for?

 

 

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#29 of 44 Old 04-25-2011, 06:50 PM
 
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Personally, I would keep the house. You mention one of your worries is your husband passing away and leaving you with nothing & no way to support the kids. Having a home free and clear (well, just taxes and upkeep) would go a long way toward reducing your monthly expenses should that happen. If it were me, the only way I would sell the house would be if I could buy another house free and clear with the proceeds. Money has a tendency to get spent, especially with medical bills and collection agencies involved, whereas a house is a house is a house. If it were me, though, I'd move back to CO now (or maybe after the lease in WA expires) in spite of wishes to the contrary. Financially, it makes sense.

 

In the meantime, there's renting, as other PPs have mentioned. Or how about a house swap? People do that. CO is a desirable state & many people would love to be there.

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#30 of 44 Old 04-26-2011, 06:04 AM
 
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I would sell the house as is (don't worry about fixing it up! it isn't necessary or worth the bother right now!) and buy something smaller, in a place you might be willing to settle down in. 


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