They're living in your home rent free is a whole DIFFERENT story. My 23 year old son came home for almost a year while finishing his degree. I did all the cooking and he did all the errands, all the cleaning, walked my dog twice a day, and took me to my doc appointments. He always made sure there wasn't a conflict before making plans. This wasn't me being demanding either.

You can't expect either to support you emotionally though--it's too draining. If you need to vent do it here or with a therapist. --I'm not saying not to ever discuss things but you have to be careful.

If she's helping temporarily, fine. But she can't/shouldn't change her life's course for you.

If she decides to leave then you can rent a room or two out and use the money to get a housekeeper. You might also qualify for some in home assistance.

My frustration comes and the conflict happened as a result of multiple attempts to find workable solutions for everyone. She wouldn't say a word. I KNOW she is sacrificing and I don't want her to. Certainly not for as long as she has. The plan was to get things done enough for her to get a job & start school, etc. Between the two of them, not much gets done on any given day, including but not limited to the assistance I need personally. The real conflict began when he decided to get stuff for a built in closet system for the room they are in...no real plan with it...just because he wanted to. Because I tried to get them to develop a plan with it, since it was a built in system and they wouldn't be taking it with them, he got bent out of shape. A few days later, they announce they are leaving for TN for a few days and left. I had no help whatsoever or any time to get anyone to change their plans to be able to help. Fine. I dealt with that the best I could and when they got back we discussed the position I was put in. Flash forward 6 weeks, he announces they are going to leave early to TN/FL for a wedding (I had my son coming for a few days but he works FT & goes to school but hadn't planned on 10-14 days). That was when she & I had conversation about commitment/reliability. That's also when we came up with some methods to help me be more independent (I'm terrified to take a shower by myself; we took the handrails off the stairs to put them on the other side so I had a handrail all the way down the stairs-they're still not back on yet & that was 3 weeks ago). I am going to be looking into some kind of helper service because I cannot place total dependence on to my daughter.

Even having help come every other week to do major cleaning is a tremendous help.

If they're not voluntarily contributing in a meaningful way, then you need to decide what expectations you have and perhaps figure out an appropriate amount of time that needs to be spent in exchange for rent. Help can be had for $10 per hour or less in many places. Even if you want to be generous and give them more than the going rate, figure out what this breaks down to in rent. If either were working it might be a different story, but they shouldn't come and go as they please. How old are they, btw???

My son made sure he checked with me before going on trips and before taking a new job across the country because he knew it would complicate things for me since I was expecting to undergo several surgical procedures. I don't ever want him to feel like he needs to change his life plans for me, and I worked things out, but I appreciate that he cares enough to at least ask!

You do need to learn to adapt as much as possible. Hopefully as new meds are added you'll become more functional... In the meantime, would you be capable of doing more if you had a wheelchair at this point? Would you need mechanical help getting into the wheelchair? (It doesn't mean you have to use it all the time if you're concerned about losing more function.) If your issues are mostly with your lower body, than you need a comfortable set up to do things like meal prep while sitting. If that's impossible, consider Meals on Wheels for yourself. If you can't vacuum, consider a Roomba, etc.

Have you looked into swimming/pt in a warm pool? This might be a big help with increasing your function.

Have you checked to see if there is a ride service for the disabled locally?

You might want to consider buying down into a smaller home with less upkeep and lower taxes. Even if you are approved for SSDI, you'll likely still struggle unless you have other resources. Or, if rents are high in your area, you might consider renting it out and finding a small rental for yourself. --You might want to stay with or near more reliable family...

Rereading your post, how exactly are either of them sacrificing when you say they do very little every day? Are they using your health as an excuse for an extended vacation? While it might make sense for her to be home with you, why isn't he working???

It's a long story. I moved to TN in 2006 after my second son passed away. In 2007, I fell down a flight of stairs, shattering the left side of my face. My fall in 2013 that fractured my knee was the turning point. My youngest son had moved in Dec 2012 and was wanting to move back to IL after my fall. That would leave my daughter to be the only one helping me. So we all talked and collectively decided to sell the house & move to IL. My son went up 2 weeks before we did to get a head start on finding a job. He was working in 3 days at a place 5 minutes from his dad's house (where he was staying when he went up). My daughter is 19 tomorrow, her boyfriend is 26 (and damn well ought to behave more responsibly IMO). While my daughter & her BF moved up with me, I let my son off the hook because his job was so close to his dad's (and his step-mom is still recovering from several ruptured cerebral aneurysms). I believe my son thinks everything is fine, even though I've shared my concerns with him. I have gotten him to come every Saturday to help out, but he won't move in unless the BF or both move out.
When I bought this house in Aug., I bought it with the idea both my son and daughter would be living here and therefore more help with the move & everything that needed to be done. Because it was empty for so long, it's mostly been deep cleaning but we have had trouble with the sump pump, tore out all the carpet & need new flooring installed, re-built the pantry for ease of access, painted, replaced the water heater, replaced light fixtures and are waiting on a new window.
To be fair, when we first moved in, my daughter was called to CA to help her sister-in-law (brittle diabetic) who found out she was pregnant 3 weeks before my son deployed & was having trouble with my 5 year old grandson. BF & I traveled out a few weeks later because my daughter had no clue how to parent a 5 year old and my d-i-l was fully taking advantage of her (having my daughter go get her a drink while she was watching TV; having my daughter go to school with my grandson while d-i-l slept or shopped, etc). I think that started the whole caregiver role strain that fell on to me.
Also, when it was just he & I here, he was quite accommodating.
Physically, I got significantly worse, particularly on the way back. I'm not sure if going from sea level to 10,000 ft above sea level within a few hours drive had a factor or not considering I experienced significant pain and swelling on the way to CA as well.
For whatever reason, once we all returned to the house, it became a different story. I became the insignificant needling interfering with them playing house in my house. When I would say anything (anything at all, especially about my personal needs or what I wanted done with the house), attitude spewed from one, the other or both of them.
We developed a notebook with everything that needed to be done so they could just pick something, but that we would talk about it first so I knew what was happening & could maybe help. I discussed breaking things up. An hour on the house; an hour on what they wanted to do; an hour for me. Nothing. I asked my daughter "What is the goal here? Is the goal making things comfortable for me to be her by myself so you two can move out? Is the goal making things comfortable for you two? Is the goal making things comfortable for all of us to be here together until you two can get your own place?" She shrugged. I told her "Well, since I paid for the house it's pretty much either comfortable for me or comfortable for all of us."
Again, to be fair, he has fixed the sump issue (for the time being and not without some issues), he's put up all new light fixtures, door knobs, replaced a door, re-built the pantry, installed flooring in 2 areas so far & is planning on installing all the rest of the flooring.
Now, in the scheme of things is that a lot? No. Is it worthy of 4-1/2 months of a free place to live? Not really, but it may be when the rest of the floors get done. THAT is all wherein lies the problem. They don't communicate any type of plan. They don't follow any type of plan and therefore nothing has really gotten accomplished. The fact that I have to practically beg for food some days leaves me feeling quite alone and betrayed.
Funny though, he left 2 days ago for TN to do a job (he is part owner of a construction company). My daughter is flying to meet him on Tuesday & they are both then headed to FL for a wedding. She has been AMAZING since he's been gone. Much like he was while she was gone. I don't get it and have no clue what (if any) resolution there might be. My daughter has helped me a lot money-wise, so I do not feel asking her for rent is a comfortable position for me.

I cannot believe I just spewed all that....

This one thing worried me a bit, "I let my son off the hook because his job was so close to his dad's."

Is it fair to have those type of expectations for your independent, grown child?

I should have been more clear in my spew. My son said "I'm not leaving you to fend for yourself until you are back to work." When I told him he should stay where he is (at his dad's), he argued "I told you I wouldn't leave and I'm a man of my word." Because of that mindset, letting him "off the hook" is the only thing that removed his own feelings of guilt. My insistence he do what he needed to do for himself was not going to be enough.
Another clarification: I have 5 children. The son I'm referring to is #3, the daughter I'm referring to is #5. My son in the military (with baby #2 on the way) is #1. My son that passed was #2. #4 (also a daughter) lives in CO.

That makes sense!

And I realize there are people that DO expect their children to take care of them. (The book/movie Like Water for Chocolate" is an excellent example of this.)

Have you checked into community based services for the disabled? It looks like in IL the program is run out of the Health and Family Services Dept. Being on Medicaid and your level of impairment should qualify you. In Texas the workers for the agency assess the level of disability and determine how much care is needed - which can vary from one day a week assistance to full time. This program keeps a lot of people in their homes and independent.

Sending Healing Love,
Littlepaw

Since the RSD/CRPS is a new diagnosis for me & I am just starting to seek out assistance. Thank you so much!!