My LO is placed in a wonderful facility. Yes, they are functionally independent but require more companionship than anything else. I was unable to find residential care for them that fit within our price range, and Medicaid does not cover custodial care. I did happen to find a SNF that had a great social worker that worked with me and did some creative assessing to get Medicaid to cover their care. We had family come down and they wanted to see my LO. I am sure you can tell how well it went--they were upset that their LO was in a SNF.
What my family members do not understand is that wandering risk individuals who do not need assistance with other ADL's "currently" are difficult to place, especially when they have no income outside a small social security check and the selection of available options is not exactly diverse or plentiful. If it were not for the SNF, my LO would not even have Medicaid. We tried many times and they were deemed not suitable for LTC yet. Still, it was a safety hazard to keep them in their apartment without supervision, which I was not going to do nor made enough to pay for. Plus, I have other future commitments in my sibling that I have to still address regarding their special needs.
Long story short, my LO is not happy. I have known this, but they refuse to make an effort to adjust to their new normal. They feel wrongfully placed, which to a degree they are correct, but residential care that takes Medicaid or Medicare just does not seem to exist. Maybe if I looked harder, I could have found something, but while looking I would be responsible and I did not want to deal with that. I also know that if I got family involved, they would sooner or later flake and things would be left on my plate again.
I have told my LO and my family members that safety and care are my priority, and comfort is not my primary concern. If my LO wanted to be comfortable in their old age, they should have prepared better for it. I am not against them being comfortable, but I will not put myself out to sustain it. My extended family have offered to "help," but I know that will not be a long-term solution. They will burnout and leave me to clean up the mess.
Should I consider their offer to help and take my LO out to try to place them again at a later date? I spoke with the SNF care team about this, but the social worked advised me against it because getting them accepted was not exactly easy. The nursing and caregiver staff have told me they do not feel my LO is ready for SNF but understand why I did what I did. I admit I do not visit as often as I could. Being asked by them to take them home or asked when they could leave was too much for me. The nursing staff also told me social interaction is important, but my LO refuses to interact with anyone else. Granted they are the youngest person on the floor. They are treated wonderfully, but understandably so they do feel slighted.
You have not said you are POA. I assume you are as you chose the placement. It is not your job to discuss your LO. It is your job to care for her without interference from others.
If they continue to carry on you can tell them that they will not be welcome to speak with you if their level of interference continues.
I still remember when I had cancer 35 years ago. Trust me, EVERYONE knew what I should do about treatments. EVERYONE and their brothers, too. It was the worst of all of it, adding to confusion and distress. My advice to you with this group is to head them off to the pass.
How is your family prepared to 'help' out with their LO were you to take them out of the SNF? Would your family member(s) be willing to have this LO live with one of THEM? Or are they talking out of both sides of their mouth, saying they'll 'help out' meaning drop by once in a blue moon for 10 minutes?
If you are going to take your LO out of the SNF only to have to place them again at a later date, when would that 'later date' be? Years from now? Months from now? Medicaid is available for LTC so I'm not sure what you mean when you say, "residential care that takes Medicaid or Medicare just does not seem to exist." MediCARE does not pay for long term care, this is true, but MediCAID does, if the person qualifies for it; not if they don't, though.
Have you looked into board & care places or group homes, since I get the feeling your sibling is younger and may like such an environment better?
I don't think you owe your family an 'explanation' of the why's of what you've done on behalf of your sibling. I think YOU are struggling with the decision, however, but I could be wrong? For me, when making difficult decisions, I feel like I have to have ALL the options laid out for me before I can decide the best course of action. Unless that's happened for you with the placement of your sibling, you might be feeling that you haven't explored all the possibilities yet. Might you want to do that, perhaps with a social worker to help guide you? Is that a possibility? I'm just trying to give YOU all the possible solutions here, not say that your decision was 'wrong' in any way. If you feel it was a good decision, then leave things as they are, w/o feeling you need to 'justify' your actions to others. Unless these family members want to take your sibling into THEIR home to care for them 24/7, then their input is useless. Unless they have a specific residential care home in mind for your sibling that would accept their insurance, etc. and there is availability, and you feel it would be a good move also.
Wishing you the best of luck with all you have on your plate.
My sibling is not the one in SNF, that is a different situation I am trying to navigate. I responsible for them, our parents were their primary caregiver but that is no longer the case.
I will hear them out and see what they exactly intend to do and will go from there.
Here Medicaid does not pay for companionship care which is where they are at. The residential care units that take Medicaid are few and far between and they have a cap on how many beds they have. What also limits it is the wandering, very few that deal with memory issues. Same reason why AL is a no go, i would have had to wait for a spot to open up but without their MLTC covering some form of day service care outside of social day care, it would come to me to keep them safe in their home. Which was not possible. They SNF did their thing and got my LO covered.
As the Nurse told me during the MLTC assessment for care, your LO lacks a skilled medical need, Medicaid just does not cover companionship or supervising care. I had documents from a plethora of doctors stating it was unsafe for them to be left unattended.
Sure, maybe I could have fought more, and looked harder.
Period.
No further explanation.
Sounds like you worked really hard to get her placed the first time.
If your LO's are willing to A: cough up serious cash from now until the end, or B: take your LO into THEIR homes, then they do not get a 'vote'. Period.
They could visit more. They could help out in a million different little ways that would not require anybody step in to move the LO out.
A wandering MC patient is truly twice the work and effort. we have a MC facility in our neighborhood and when there's a 'wanderer' out and about--we're all on high alert. He's a slippery gent and while it's a worry to have him slip out the door when someone comes IN, I do admire his escape skills. Doubt I'd feel that way if he were my dad.
The SW is right--you have your LO placed and that is a huge battle won.
But if your loved one's family members have a better idea and are prepared to implement it, consider it. Have they? - or is this all hand-wringing and hot air?
I wouldn't say this out loud in front of them, but I do think you should also keep looking. I appreciate that the SW has done some pretty fancy footwork, and it must be a relief to have a solution which is at least safe; but it sounds as if nobody else feels that your LO is in the right place - actually, even you don't feel that: your heart sinks when you visit, and it isn't only because of the repetitive "when am I going home" questioning, is it. Yes of course safety and care were the priority when you needed to intervene urgently, but without quality of life they eventually just prolong the torment.
How long has your LO been there now? - sorry if you already said and I missed it.
Your last point is 100% true and has been expressed to me by the staff, and you are also correct I do regret it came down to this. I am just unwilling to compromise my own financial freedom and security, because I knew it was possible to keep them in their apartment, just would be at my expense since they have no extra income.
I explored local help, and turned up a short given their current issues or lack of issues in this case.
regarding your question, everyone will have a different opinion.
it’s your life.
your LO’s life.
so you, LO, your family decide.
this is just my opinion, from someone you’ve never met.
“Should I consider their offer to help and take my LO out to try to place them again at a later date?”
yes.
take your LO out.
you said your LO is the youngest there; unhappy; wants to leave; and actually should be in a different setting (too early for SNF).
let family try to help.
you said they might burnout/flake later, and then you’ll have to clean up the mess.
you said you want safety + care.
but if LO is miserable in SNF, it doesn’t help much to be safe + cared for. what kind of life is that?
it’s not about living as long as possible.
but as happy as possible.
——
taking out LO entails risks (you already pointed that out; medicaid, etc.)
——
again, i’m just someone you’ve never met. and i’m not the one who must deal with the consequences of taking LO out.
still, my opinion is:
take them out.
later (even though difficult/impractical), LO can return to a facility. there’s always the “ER dump” (LO is in hospital, you refuse to take home, and they’ll find a facility for LO).
meanwhile LO will get a chance to be happier, with your family trying to help.
maybe it doesn’t work out (family helping).
at least, it was given a chance.
I've been off of aging care since Christmas. Life has been flying by. Christmas went well for our family. I've noticed I am failing fast. I do not deny this, and now my DW even says things are changing quickly. We've had to make some changes on our legal paperwork so that my family can place me in probably a year.
Thank you for your kind reply.
I have not spoken with my sisters in close to 12-13 yrs. Looking at what they stole of mine and forced me out of access to our family camp. All of our kids spent much of their life enjoying our camp and some made friends with my children. I've continued offering prayers for you.
God Bless you,
John