MS Housing Options

[dm0329]

Hi All,



As you may know, I have been living in my familial home since my father's death in 2008 (2009-present). The house was granted to my brother and I as 50%/50% but in 2012 my brother sold his 50% to me for $1, which was extremely nice. My brother is three years younger than I and will be retiring in 2025, so he will only have his pension, unless he finds another job. He has worked for the USMS since 1994, ironically, the same year that I was diagnosed with multiple sclerosis (I was age 26 and he was only age 23). He lives in Florida, and I am in Pennsylvania. He told me Friday that he "has no money" to help me with house repairs etc. anymore, and that I should move out and get an apartment. Ouch!



Okay, I guess I understand, but my head is spinning. First, I don't know where to turn. I am divorced and live alone and have no friends but thank God for my rescue kitty. She has provided me so much comfort since I adopted her. So, this is officially the fifteenth year that I have been living here. My brother has helped me with replacing both furnace and hot water tank in 2020, but as you know things break, etc.



Although I pay all my property taxes, county taxes, etc., I thought my brother would help me if something happened, well, I guess he will be "retired" and "on a fixed income" and states I should leave the house. Since I am a SLMB, the state of Pennsylvania, pays for my monthly Medicare supplement, and because my medical expenses are above $35 a month, I get $23 in food stamps and do get LIHEAP assistance for my gas heat in the winter. Every little bit helps, right? I am thankful that I worked more than twenty years after my MS diagnosis, but SSDI only goes so far, and I don't know what to do about my situation. I need advice and input. It appears my brother is cutting me out of his life (financially and emotionally). This hurts.



But, I don't think he has really accepted my MS diagnosis. He thinks I should still be working. I reconnected with a friend and went walking with her a few times a week. Perhaps my brother is bitter, as he "in essence gave me the house" and has helped me out but he is no longer doing it. He said for me to move into an apartment so a "landlord" can fix things when they break. As I said, I pay for all taxes, etc, so I have little money to repair things when they break, etc. I don't know where to turn.



Since I get assistance with my monthly Medicare premium, I also get the LIS ( low-income subsidy) with my DMT, so selling the house, impacts things for me, as this house is the only asset that I have. How do I sell it and move to an apartment? I am only age 56 but turning age 57 in March. In about 5-7 years, age 62-64ish? I thought about moving into a Continuing Care Community, which is very expensive, but with the proceeds of both my automobile and my house, I may be able to afford it? My head is spinning, and I am devastated as he is not emailing with me and will not return any of my texts.



In sum: I don't know where to turn. I'm seeking input. Do I stay here until I am old enough to sell the house and move into a continuing care community? Or to I stay here and hope that "charities" or the like can help me if something breaks? I am low-income and disabled, but still so young only age 57 and although SPMS, "I still look so good." But I am devastated. I don't know where to turn and don't know what to do. I can't quit crying or get a full night's sleep anymore.



What advice or options can you share? I don't know what to do. If I sell the house, my only asset will become "liquid" and I don't have anyone who would agree to help me with a special needs trust. And I am not old enough yet to move into a continuing care community, and what do you do if you "out-live" your money? I am blessed in many ways, but now I am quite distraught and confused and don't know where to turn (my brother is my only family) and I don't have the money to hire an elder law attorney to guide me, etc.



Thanks so much for your input. Any advice is greatly appreciated. Blessings!

[REG53]

I'm sorry you are having to go through this. I can only imagine what you are feeling. I don't have any advice just wanted you to know that
I am praying for you.

[Seasha]

I am also sorry you are having problems, dm0329.

I did a little searching and came up with a few resources that may be able to help you:

https://usafundingapplications.org/v...stration_form/ This is a USA funding program. Just fill out the form, scroll down and click home repairs, add other pertinent info and submit.

https://www.hud.gov/states/pennsylva...ip/homerepairs This is for the state of Pennsylvania. You need to search within your city/town.

https://dced.pa.gov/whole-home-repai...m-agency-list/ This is a list by county and directs you agencies, phone numbers and email addresses.

I don't know if any of these are helpful, but you can look into them. And of course, many charities in your area can indeed help you! Maybe someone else from Penn. can chime in.

Good luck and hopefully you can get the help you need.

[pennstater]

Some of the assistance is by county. If you find out where your local office is for aging assistance, they may be of assistance in getting resources. While it references elderly, they also help disabled. Their goal is to keep people independent.

https://www.aging.pa.gov/local-resources/Pages/AAA.aspx

Our church has a food pantry/clothing area. In addition to that,they have grant and donation money that help our clients with emergency home repairs, rent/mortgage assistance, car repairs, etc... The clients do not have to be part of our church, most are not, referred by other churches, schools, township officials, etc... Quite possible, there may be organizations like that in your area. Call some and see if they can be of assistance.

I am sorry your brother's assistance had to come to an end. Retirement can affect any discretionary income drastically. I hope you can salvage your relationship. Hopefully, if you assured him you understand, he will realize your are not asking for more help, just for your brother. It could also be he may feel guilty hearing your hardship when he can't help. But for both your sakes, hope you work it out.

[pennstater]

Just another thought. With everything so expensive for most people, any chance you would be open to a roommate? If you do, definitely have a contract. It could be a way to offset some expenses. Of course, it does come with potential liabilities, so make sure you are covered.

[dm0329]

Thank you all for your input. I really appreciate it. I'm just confused as to what to do? I really thought about trying to stay at the house until I turn 64, which would be seven more years, and then selling it and moving to a continuing care community. But, I am only age 56 soon to be 57 currently. So, that's seven more years. I would think that he would understand and help me figure out what to do, but perhaps he is stressed for himself as well as for my situation, you know?

Thanks to all for your input, I do think I should wait until I am at least age 60, whereas, I reach a certain threshold in Pennsylvania, of age-related assistance, but, a continuing care community is probably best, but the house is my only asset, and I'm hoping I can swing it for seven more years perhaps? Again, thanks for your input, I may return as a plot along trying to figure things out.

Happy New Year Everyone!

[Jules A]

I'm sorry your brother is no longer able to help you financially. I agree with pennstater and hope you are able to express to him that it isn't about the money but your love for him and the relationship.

For some reason I thought CCRCs minimum age was 55?

My thought is if you can't afford your home, now still seems to be a seller's market in many places, I would sell asap and move into a modest apartment with a one year lease to allow you time to strategize. Owning a home is expensive and a never ending source of updates and repairs. Please keep us posted.

[pennstater]

I would still reach out to the department of aging. They may be able to give you some guidance, maybe even find a financial adviser who volunteers services. A professional would be the best to give you advice.

If you are determined to try and go it without contacting any organizations for help, make a pros/cons just of different options. Also spend time being realistic about your house - determine what things most likely will be ok and what you night feasibly have to replace based on age. So consider how old your roof, appliances, etc are and assess whether you may need to replace it.

There are always emergencies, but there are some things that can be known. If the roof was a 20 year roof, and it is now 25, it needs to be replaced. You also mentioned water issues. If that continues to get worse, what other problems could arise - foundation issues, wood rotting? Is your house original plumbing and sewer lines that may need to be replaced?

Finally, you could always reach out to a real estate agent to get an estimate on the property valuation. You don't have to list. The agent also could point out if there are any code issues that would need to be addressed before listing. You don't want to be surprised when you do go to list eventually.

It sounds like things are really tight for you. Taking proactive steps to plan is the best way you can preserve the assets you do have. You don't want to be in a position where you have a major repair needed, have no resources to complete the repair, and are forced to sell at a very discounted price. My best advice is to reach out and see if you can find agencies to help guide you.

[dm0329]

Many thanks to everyone for your input. You have all shared many good points. My head is simply spinning as I spent all day on the telephone with the National Multiple Sclerosis Society to get their input, and yes, I need an elder care attorney to navigate how to sell the house, if and when almost becomes secondary as the house is my only asset. I am officially an SLMB, who qualifies for the low-income subsidy's help with my DMT. Preserving what little aid I receive is my focus at this point.

I understand that he is retiring and perhaps has forgotten how "trapped" I am living here without the guidance of an Elder Care Attorney and perhaps someone to step up as a Special Needs Trust administrator. Sometimes my brother really doesn't get it. If it was just the MS to deal with, but it's the yearly paperwork etc., to maintain my modest assistance (Pennsylvania pays for my monthly Medicare premiums, and the much-needed low-income subsidy for my Aubagio.

Again, thanks for your input. Blessings!

[pennstater]

I understand that he is retiring and perhaps has forgotten how "trapped" I am living here without the guidance of an Elder Care Attorney and perhaps someone to step up as a Special Needs Trust administrator. Sometimes my brother really doesn't get it. If it was just the MS to deal with, but it's the yearly paperwork etc., to maintain my modest assistance (Pennsylvania pays for my monthly Medicare premiums, and the much-needed low-income subsidy for my Aubagio.

Again, thanks for your input. Blessings!

Have you asked the NMSS or other agencies if there are any charitable organizations that help provide an administrator? I have to think there are agencies out there, as I am sure,there are plenty of people who don't have anyone capable of serving in this role. It could also be a question for the elder care attorney.

If you want your relationship with your brother to survive, you probably need to let go of any expectations that he will be able to assist you in any capacity or that he doesn't get it. Given the generous help he has provided over the years, it sounds like he did what he could. We don't always know what someone else is going thru. Maybe give him some time, reach out, let him know you miss him and have no expectations of assistance, just want your brother back in your life.

[lukeduke]

I understand. I was also diagnosed with MS at 26. I received help with the co-payments for my MS medicines. First for Rebif and then for Tysabri. I went through two hearings before an administrative law judge before being approved to SSDI. I stayed with my chosen career for 9+ years post diagnosis. I wanted to go back. The HR director where I was working said if I got my sleep issues taken care of he would talk to them about letting me come back. I should have known though that I wasn't going to be able to go back there.
I actually tried for a different position there when I went to the Department of Labor and got a referral for a position there. I had to go to an employment agency. I had to explain to them about I had worked there before and wasn't sure if they would let me come back. They worked and found out that I could be rehired. The problem then was that the position was under the member of management that didn't want me back there. I was never going to get anywhere under her because my skin was not dark enough and I didn't like to suck up to people, I wanted to do it on my own.
Now it has been 17 years since I was diagnpsed and I am on SSDI but my Dad gets my check and doles it out as he sees fit.n He doesn't like to pay for things. I need to get my cell phone back. It died and would not charge. As first it was the battery needed to be replaced. The guy at the repair shop actually did not charge me for that one because he had the phone for so long before he got it fixed. The bad thing though is that after I got the phone back it wouldn't charge. Now he has it again to replace/repsir the charging port on the phone.

[lukeduke]

I will say too. I don't live in my familial home as you said you do. I actually live in the double wide mobile home my Dad bought when him and my mother divorced. I have lived here mostly since I was 17. I have left three times, once to go to college, once because when I came back at 21 I didn't like being treated like a teenager, and one last time to help my mother. She also had MS. I moved back in the weekend my father got married again.
My stepmother is great. Between my Dad and her there are four of us boys. I am the baby of everybody. I have been joking for a while that I am scared that if I left this mobile home again and tried to come back that it wouldn't have me back. I am married and have a wife, a stepdaughter, and a daughter. My daughter is 8 and lives with my Dad and stepmother. My stepdaughter is 18 now and has moved in with her aunt(wife's sister) so she can babysit her kids and she failed out of high school so she is working on getting her GED. I wish her the best. Unfortunately a few years ago she missed the first week of school because she was in the hospital in Atlanta. She was diagnosed with Type 1 Diabetes. I felt sorry for her because I remembered how bad she was about needles when she was little.
Thankfully she has handled it better than I would have. She is actually handling the injections she has to give herself better than I handled it when I found out that I was going to have to start giving myself injections. I don't give myself injections anymore since I switched from Rebif to Tysabri.