SO IS POVERTY REQUIRED?

[RockysMom]

Never ever ever

When the time comes for you to enter a nursing facility for the long term and they start to ask about your home, definitely hire a good, reputable lawyer to negotiate w/ the facility to allow your husband to stay in your home for the rest of his life or

I will never live in a nursing home. Ever. I decided that when I got home from one the last time. I was stuck in a hot room next to a terminally ill person who couldn't tolerate air conditioning. When I had a bowel movement in my depends, which was messy cuz of the gallbladder surgery and nasty antibiotics for recovery from that, I had to wait anywhere from half an hour to an hour and a half, once or twice it was two hours!!! So I had constant UTIs.

This is NO PLACE for someone with MS! There I was on Tysabri and they give me a roommate with MRSA! I complained so they said they were putting her in isolation. They just put her next to someone else. They just lie, lie, lie all day long. The only truth you get is from GNAs and they fire them all in cycles. Then the therapists are hinting around that I might be demented cuz hubby brought me a cute stuffed animal or because I wish I could have a vegan diet or because I'm a reformed Catholic whose Buddhist leaning, or because I'm a wildlife conservation advocate and get pissed off when an iconic wild animal is shot down by some rich scumbag. They try to discourage me from having an interests.

So I decided I'm going to stay home forever. If I do need rehab, I will go to the ones my folks went to in the city where they're so busy they just want out of their ASAP. They don't hunt for lifers, they get you set up at home. My mom even found out she can get hospice care right at home. That's the future. This boonies stuff is nonsense.

We have a dear family friend who has advanced MS and he's staying right in his home. He has an aide for 8 hrs a day and his devoted wife for after that. I'm going to find out how they can afford that. I'm going that route and soon our state will have a right to die law so when I'm 90, I'll have that option. These sharks can just shove off.

Now I know Medicare will seize your house of assets after you die but we'll see - it will probably be gone soon anyway the way things in the world are going.

Ok I better simmer down and I gotta see what kind of ripoff this Medicaid is next. Do they take your organs when you die? What'd the catch there. Sorry if I sound angry. I am - I'm supposed to depend on the 'community'? Yea well my house is going to end up a Franciscan sanctuary folks, not bread and butter for places that are always so short staffed and can't give you anything but very subpar care because they're always firing everyone because they're afraid to get sued. I'm not like that ever but I fight the system and I'm used to winning! Sorry, I got all my faculties. Academia is in my DNA.

[RockysMom]

THANK YOU

for CNA's that would give them credit hours toward their degree for volunteer. I work with a lot of CNA and home health providers...maybe contact a local nursing school to see if they have something like that as part of their program. I know I used to get a lot of volunteers for hospice patients (respite care)from local colleges.

Or, if your home would provide space for a student you could do a room and board exchange for assistance.

I am sorry for your challenges, I wish that instead of paying for those that need care to be in a nursing home they would just allot those funds to home care. Maybe someday....

You are in my prayers. Sadly this is an all to common occurrence in healthcare today.

Will do but they probably go to the lousy area nursing homes to learn the whole broken system. Maybe I'll start something new. Thanks.

[RockysMom]

just to let you know, I put a copy of your question in theSocial Securitydisability questions answered by attorney Rich Feingold

Wow thanks hunterd. I'm pretty sure I don't qualify because of not having worked since 2001. But thanks!

[pennstater]

I would contact social security to see what if anything, you may be eligible for and start the process.

SSDI, has a recent work and also duration of work requirement. As I understand it, recent means you worked 5 of the last ten years. And duration varies by the age at. So at age 50, you need 7 years work history. The older age at disability, the more work credits you need. I know you have been sick for awhile, I don't know how far back you can date the "onset of disability". Can you back date it to 2005, which then meets the work requirement? I am guessing not, but it has to be in the SSA rules somewhere.

If you don't qualify for SSDI, there is SSI, which may help. There is an income requirement, as well as asset requirement. I believe your primary residence is excluded from assets, so you can still own a home and qualify. Of course, when married, it is joint income and assets.

It can't hurt to discuss with someone knowledgeable and/or go to SSA.gov website to review requirements. I would apply if you are unsure, the worst they can do is say no. You could check with local NMSS to see if they offer any assistance with completing the applications.

[Tawanda]

Ironically, I read your post and this post, one right after the other: "Letter to myself 10 years ago after being dx with MS". I thought how can M.S. could take such vastly different courses and how unfair it is for you to be stuck in your present situation. You have practically been "punished" on top of it all for being an unpaid volunteer! I do not have the answers but for whatever prayer is worth, you, your husband, parents, etc. are in mine. (((Ricky's Mom)))

I also love the avatar. My animals are better medicine than any pharmacutical!

[KatieAgain]

Rockys Mom

I did not mean for your husband to leave. I meant for him to stay and you divorce on paper. I was thinking as a "single" you might have more benefits.

There is a HUGE VOID in this country when it comes to long term care for people under 65.

I really appreciate you taking the time to share your story with us.

[Jules A]

I will never live in a nursing home. Ever.

So I decided I'm going to stay home forever.

Unfortunately that isn't an option for many of us.

My plan is to go to the crappiest nursing home in the area to hopefully hasten my death from neglect when the time comes. I'm tired of fighting MS already so my plan is to just going quietly which I figure will be better for my family also.

[poppydarling]

Is this America? Where healthcare providers work in cahoots with the insurance company to drive you into poverty and then hold you prisoner and just barely alive so they can milk the gubmint as long as possible?

What on Earth do I do now? I feel like sending this text content to a big newspaper to expose the seamy corruption that's out there. I'm just stunned.

I'm so sorry to hear about what you have been going through. It's not fair!

Have you tried calling United Way? You may be able to dial 211 in your area – check their website. They are a clearing house for all sorts of social services, all provided free. The people who answer the phone are so kind in listening to all of our issues as well! It sounds like you have a good head on your shoulders, and I wish you well in finding some solutions.

[RockysMom]

That is an EXCELLENT IDEA

I'm so sorry to hear about what you have been going through. It's not fair!

Have you tried calling United Way? You may be able to dial 211 in your area – check their website. They are a clearing house for all sorts of social services, all provided free. The people who answer the phone are so kind in listening to all of our issues as well! It sounds like you have a good head on your shoulders, and I wish you well in finding some solutions.

Poppy darling, thanks for this excellent idea! It's on my to do list at about #4 which is high priority. It seems I spend entire days on the phone when I'm not getting PT or bed baths from an aide but I will explore this ASAP - thanks!!!!!

[RockysMom]

Would break his heart

Oh that's not a touchy subject to me. We've been married 20 years now and he could never survive without me. I don't think he could handle an details of running a household on his own. I've always done every little detail of that. He's like a kid who is totally reliant on household authority figures yet he's rebellious as well. It would be me kicking him out if anything and yes I have an excellent lawyer 😉 Ask Rocky 😜

My DH has overcome the kind of obstacles in life that Hollywood could make a blockbuster movie franchise from. (sorry bad grammar but still better than Siri!).

The thing he's most proud of is that he has been married for 20 years. It's something he has stuck with and been successful at while neatly all of his old friends are divorced or dead because of how they abused themselves or someone else. Our marriage is his rock.

We won't be doing that but I appreciate the suggestion and it is something to be aware of just in case he suddenly turns into Ray Rice. Truth is stranger than fiction, they say.

So thanks!!

[RockysMom]

Rock star Rocky

Ironically, I read your post and this post, one right after the other: "Letter to myself 10 years ago after being dx with MS". I thought how can M.S. could take such vastly different courses and how unfair it is for you to be stuck in your present situation. You have practically been "punished" on top of it all for being an unpaid volunteer! I do not have the answers but for whatever prayer is worth, you, your husband, parents, etc. are in mine. (((Ricky's Mom)))

I also love the avatar. My animals are better medicine than any pharmacutical!

Thanks for your concern and prayers. I do believe in the power of prayer. It can move mountains and rekindle one's inner flame after it has died out. I think this very forum does that for me. Thank you!!!! 💛 🔥

[RockysMom]

Long time

I would contact social security to see what if anything, you may be eligible for and start the process.

SSDI, has a recent work and also duration of work requirement. As I understand it, recent means you worked 5 of the last ten years. And duration varies by the age at. So at age 50, you need 7 years work history. The older age at disability, the more work credits you need. I know you have been sick for awhile, I don't know how far back you can date the "onset of disability". Can you back date it to 2005, which then meets the work requirement? I am guessing not, but it has to be in the SSA rules somewhere.

If you don't qualify for SSDI, there is SSI, which may help. There is an income requirement, as well as asset requirement. I believe your primary residence is excluded from assets, so you can still own a home and qualify. Of course, when married, it is joint income and assets.

It can't hurt to discuss with someone knowledgeable and/or go to SSA.gov website to review requirements. I would apply if you are unsure, the worst they can do is say no. You could check with local NMSS to see if they offer any assistance with completing the applications.

I left work in 2001. I did work part time for 6 months in 2006. I was diagnosed in 2001 which is why I left work. I was so harassed by my company I didn't want to leave on disability.

How do you think that affects things? Thanks for your help 😁

[RockysMom]

My Avatar

Yes that's my big sweetheart Rocky. He's 10 now and we have his sister too. We call him Crocodile Rock, Rockahula, Rockybilly and Hollywood Rock.

Unfortunately I don't get to see him except once a month or so for various reasons 😪

His nose is so big he has bigger nostrils than Brad Pitt. His paws look as big as bear paws. And his tail is like Indiana Jone's whip, don't let it get you!

Gosh I love my dogs. I have to think of some way I can see them more.

[pennstater]

I left work in 2001. I did work part time for 6 months in 2006. I was diagnosed in 2001 which is why I left work. I was so harassed by my company I didn't want to leave on disability.

How do you think that affects things? Thanks for your help 😁

I would guess SSDI is out for you. But SSI may be an option since that is for people disabled, but without enough work credits to collect form SSDI. Again, joint income and asset based when married. You can still own your own home and qualify, as your primary residence is excluded.

If by chance your husband is ever on SSDI, you can collect as well, as one of his dependents. The award could be up to 1/2 what he collects.

Prayers are with you.

[palmtree]

My 2 cents:

I'm not going to a nursing home either. Anyone who has been to one and gotten out alive isn't likely to go back (IMHO). When I can no longer care for myself and there is no one to care for me I'm going on the mountaintop by a stream and live with the wild animals until my time. I may not live long but my last breath will be fresh cool air.

Regarding the practical things we have been talking about, SSI is a federal disability program that is not based on employment history. Disabled children can receive it. I will research it for you but I believe there is a monthly income equivalent to SSDI and that you receive Medicare. The difference is that it is means based but from what you are telling us about your income, you should have no problem with that.

Medicare will not take your house after you die. Medicaid is the one you have to be careful about. The way to avoid this is to arrange for another family member to "buy" your house. This is a complicated maneuver so it requires a lawyer. I just know that my mother in law had my husband buy her house. If you have a senior citizen center in you town they have lawyers that will help you. You don't have to be a senior citizen.

You could be helped by applying for food stamps. They don't buy you in home care but if your food is paid for, it might free up some of your income.

I think your ticket is to apply for SSI and Medicaid and food stamps. Medicaid will pay for your health insurance premiums (Medicare) and the co payments on your medications.

If you can get rid of those impossible health insurance costs, you might be in good shape to get the care you need AT HOME.