Potential Home Sale: Special Needs Trust, Etc.

[dm0329]

I've been living in my deceased parent's home for nearly ten years now (it's in no condition to be sold. . .yet. . .but with some polish. . .LOL) it's old and everything will need replaced and I simply don't have the resources to maintain the home much longer. Now, I am on SSDI, I am divorced (no family in the area) and can feel my MS progressing (just had my 25 year dx anniversary). I'm stressing a bit now.

I've been self-injecting Avonex for 22 years. I qualified for the LIS (Low Income Subsidy to assist with my DMT payments while on Medicare). Now nearly ten years later, I'm concerned about staying here much longer because I cannot afford the upkeep.

I'm lost and unaware of what options, if any, I have? Do disabled homeowners get any assistance from the state with home repairs, appliance replacements, etc. Where do I turn?

Is it possible to sell a house (that you've inherited through your parents death) but may have to sell it due to MS disability and your resources are limited. Upon the sale of the home, how do you maintain your LISubidy assistance for your Avonex?

My head is spinning and I'm seeking suggestions of where to start and to begin to look for assistance with a potential home sale. Or is it possible to stay here with very limited resources? Any state services available? Charities? I'm so overwhelmed. Where to begin?

Thanks, in advance, for your input.

[Jules A]

Hi,
I don't have any resources to recommend but wanted to say I think you are wise to sell the house before you are unable to care for it or something major goes wrong with it. In many areas, especially now that everyone wants to be a DIY or flipper homes will sell even if they are in need of repairs provided it is priced appropriately.
Best of luck with this.

[Seasha]

In answer to your question about assistance for home repairs, I found this- https://www.handyworkxmobility.com/b...-disabilities/

Federal and State Grant Programs for Pennsylvania Homeowners with Disabilities lists different agencies you can get in touch with.

Towards the bottom of the page there is a section listing State Resources for Pennsylvania Home Modification Grants. And further down you can submit information for a free consultation.

Also HomeRepair Geek's website offers helpful suggestions and tips for getting started- https://homerepairgeek.com/home-repa...s-pennsylvania

You might want to consult with a local attorney about your concerns about LIS or make an appt with your local Social Security office to obtain answers.

I'll try to keep looking for other resources. It's good that you're taking some proactive steps even though it seems overwhelming. Start first with just one objective, then tackle more as time goes on and you are clearer on what direction you want or need to take.

And good luck!

[rdmc]

I've been living in my deceased parent's home for nearly ten years now (it's in no condition to be sold. . .yet. . .but with some polish. . .LOL) it's old and everything will need replaced and I simply don't have the resources to maintain the home much longer. Now, I am on SSDI, I am divorced (no family in the area) and can feel my MS progressing (just had my 25 year dx anniversary). I'm stressing a bit now.

You can sell to a "flipper" at a much reduced sale price OR you can have the fixing up done before selling. A Home Equity Line of Credit can easily access some of the equity in the home and provide you with the funds to fix the home up by hiring tradefolks to get the jobs done.

As far as taxes, if you've lived in the home more than 2 years there is an exemption for the first $250,000 of the sale price.

You mentioned "your parent's home"...the first issue to be settled would be to have the house transferred into your name and a realty lawyer could help you with this.

[Mamabug]

MSAA

Multiple Sclerosis Association of America may be able to help. Call their helpline number.

MSAA allows individuals with MS, family members, care partners, and friends, to speak directly with one of MSAA’s Client Services Specialists by calling:

(800) 532-7667, extension 154.

https://mymsaa.org/publications/about-ms/help/

[palmtree]

I would recommend contacting HUD although the agency has been gutted in the past two years. They would be able to advise and maybe help you do repairs on the house.

Another option would be a reverse mortgage. Most people say it’s not a good deal but in your particular situation it could make sense. It’s a resource. That is if the home is in good enough shape for you to have a roof over your head.

You could use the money for your care and whatever urgent repairs come up. It’s very hard living alone with advanced MS but the alternative means turning over all your resources to an assisted living or nursing home. The people who work in those places are not going to care for you like someone you choose and you pay.

[Jules A]

It’s very hard living alone with advanced MS but the alternative means turning over all your resources to an assisted living or nursing home. The people who work in those places are not going to care for you like someone you choose and you pay.

It is difficult living along long term with MS or really even just advanced aging. The problem is there comes a point where we will likely be unable to advocate for ourselves and effectively manage hired help so without family to assist it is crucial we plan for this in advance. I think in most cases that includes an assisted living type scenario.

[palmtree]

You are absolutely right. I am running into the same train wreck myself. The only difference for me is that I don’t have a house. I have family that loves me but they don’t know how to do these things. My son says, “I would do anything. I just don’t know what I should do”. This reminds me. I need to write out some detailed instructions. Both he and his father seem to have a chromosome missing when it comes to managing finance and keeping paperwork together. I gave them an advanced directive and they can never remember where they put it and they don’t read it.

Do you ever wish you could clone yourself while you can still manage things so he/she can be the supervisor?

I am really stubborn when it comes to going to assisted living. It means being treated like a child by deadbeats whose life aspiration was to be a CNA. And it means you can’t come and go as you please.

I am going to do everything I possibly can to stay afloat no matter how difficult things get. The fact that we have the internet technology and smartphones means we can do things long after it would have been possible thirty years ago. I continue to hire, train, stay in touch with and surround myself with people who know my needs and I can trust.
There is a POLST in my refrigerator with instructions to paramedics. The rent and bills are all on autopay. Income is on autopay. I am constantly thinking ahead to make sure I have backups for everything: an extra phone, extra tablet, extra toilet paper...all the basic necessities. There is a generous cushion in my checking account so I am not overdrawn. As long as my mind is alert and I can type I think I can stay here. My bedroom is really small and from my bed I can reach everything: Kleenex, credit cards and many unmentionables for the times my legs won’t work.

I wrote instructions in 2010 after dx but they are sadly out of date. It’s time for me to get to work and think about what a new set of instructions would say.

Thank you for bringing up such an important topic. The system is not designed for people with MS. All we have is our own ingenuity.

[Jules A]

You are absolutely right. I am running into the same train wreck myself. The only difference for me is that I don’t have a house. I have family that loves me but they don’t know how to do these things. My son says, “I would do anything. I just don’t know what I should do”. This reminds me. I need to write out some detailed instructions. Both he and his father seem to have a chromosome missing when it comes to managing finance and keeping paperwork together. I gave them an advanced directive and they can never remember where they put it and they don’t read it.

Do you ever wish you could clone yourself while you can still manage things so he/she can be the supervisor?

I am really stubborn when it comes to going to assisted living. It means being treated like a child by deadbeats whose life aspiration was to be a CNA. And it means you can’t come and go as you please.

I am going to do everything I possibly can to stay afloat no matter how difficult things get. The fact that we have the internet technology and smartphones means we can do things long after it would have been possible thirty years ago. I continue to hire, train, stay in touch with and surround myself with people who know my needs and I can trust.
There is a POLST in my refrigerator with instructions to paramedics. The rent and bills are all on autopay. Income is on autopay. I am constantly thinking ahead to make sure I have backups for everything: an extra phone, extra tablet, extra toilet paper...all the basic necessities. There is a generous cushion in my checking account so I am not overdrawn. As long as my mind is alert and I can type I think I can stay here. My bedroom is really small and from my bed I can reach everything: Kleenex, credit cards and many unmentionables for the times my legs won’t work.

I wrote instructions in 2010 after dx but they are sadly out of date. It’s time for me to get to work and think about what a new set of instructions would say.

Thank you for bringing up such an important topic. The system is not designed for people with MS. All we have is our own ingenuity.

Count me totally impressed by your moxie and preparation! I love it and wish it was something I aspired to do because your plans sound spot on. You will no doubt be successful and able to remain in your beloved home environment.

Please do consider there are CNAs I know who are some of the finest, most hardworking, caring people. Some aspired for a different role in life but were consumed by caring for their family and making ends meet so they stuck with what pays the bills, others are happy doing what they do and treat their patients like family.

That said however trying to give full care to another person is a several person, full time job and often the resources are just inadequate at nursing homes. My personal plan is to live at home for as long as I am able to care for myself independently and after that check into a nursing home with a solid advanced directive indicating no medical treatment at all except pain medication. And in the meantime I'm starting to spend my money now on fun things while I'm able.

[palmtree]

Thank you, Jules, for the encouragement. I think what gives me the motivation is that I spent 24 hours in a nursing home after a small stroke in 2012. If someone has a stroke they suddenly starting calling you “dear” or “hon” and strap you to a gurney so you can’t move and haul you off in a ambulance to your new “home”. I asked for water and they brought me a pitcher that looked like a cremation ashes container. A nurse told me with an exclamation point that the woman next to me had been there two years (and she hasn’t died yet) was the implication.

They come with a TB test. I had already spoken with my doctor at 8:01am and said “get me outta here!”he said “done”. So when I told the TB test people people I was leaving they just said, laughing, like that was a demented person saying they are leaving. I looked them straight in the eye and said I AM leavin please check with the front desk.

One person after the other told me insistently they wanted me to stay and I kept repeating “my son is picking me up at 8:00pm. There was one small dirty bathroom with a note not to use any water so I was able to cath but brushing teeth was not going to happen. No shower. Dinner arrived. It was beef broth, red jello cubes and a glass of water.

Pain medication? I seriously doubt anyone gets pain medication. If a patient dies it’s too much liability for them. My doctor prescribed my sleep medication but they did not give it.

My son picked me up and I was babbling on the way home like a demented person. It said, thank you for rescuing me. Do I sound like a crazy old lady in a nursing home? He said, you do! Ha ha.

So if anyone has considered a nursing home the easy way out this might change their mind.

[Mamabug]

So if anyone has considered a nursing home the easy way out this might change their mind.

I'm sorry you has a bad experience. Not all nursing homes are like that.

I volunteered, weekly, at a local nursing home, for seven years. I personally knew about half a dozen residents who lived there -- some who were very clear in their minds and in assisted living, and some who were dealing with dementia and were in health care. I have also visited relatives in nursing homes in other communities.

In each of those cases, I was thoroughly impressed by the courtesy, professionalism, and gentleness shown by the nursing staff to the residents.

Your negative experience is not the norm everywhere.

[pennstater]

Thanks mamabug. I tend to agree. Over the years, when a few extended family members wound up in a nursing home, 3 of the 4 were good experiences. The 4th was difficult, partly because the person had advanced dementia. But the staff showed no compassion or empathy.

If you live in an area where you have choices, as with any life decision, research and do more research! Ask about their quality control for medications, activities of daily living, etc...

[palmtree]

That is good to hear you have seen good nursing homes. The one I went to was supposed to be one of the “good” ones. A guy came in and said, “wow this is such a nice place. The other ones are dirty”.

I think the real difference for patients is those who have family with them all the time. The staff behaves better when the patient has someone to protect them.

This may be just one if my personality quirks but I wouldn’t want anyone I love to be enlisted with that responsibility. Whether it is my husband, my sister, my cousin or my son. It makes me happy to see they are free to live life to the fullest. They work, they travel, they go on adventures