I'm too drained and too exhausted at this point to write it all out again, if you would like to know how I got to this situation I have other posts here (you can find on my profile) about it.
Short jist so you don't have to read all those: Caregiver for mom last 5 years, she got 2nd time this year (both nearly fatal because she refuses to go to a doctor until she physically can't say no/resist) was in the hospital for a few days, whoever her doctor there was an idiot and she was still extremely sick/incoherent, unable to even drink water yet when he discharged her.
They almost sent her home in an ambulance to drop her off when no one (I.E me) was there to take care of her, because apparently these people I'm dealing with are idiots. They even lied multiple times to try and justify trying to send her home with no caregiver saying other people in our family (who don't even live here) said it was okay.
Got into with them over this and how we (I.E: me, since I'd be the only one there to care for her) can't take care of her in that/this condition.
They finally caved and sent her to a rehab place, shes been there little over a week but now the social worker keeps calling non-stop because she wants to send her home because I guess the place they sent her to insurance doesn't seem want to cover and she's having trouble getting her on medi-cal (I've also been running myself ragged trying to get her back on it or find another place which I have no idea how they're so incompetent because the first time she got sick the other hospital she went to had no problem taking care of all this stuff) so she's insistent on trying to send my mom home.
Despite my constant refusals that I can't take care of her on my own anymore because she's gotten to the point I'm killing myself, such as seriously injured back from transfering her the past 5 yrs, she's a bigger lady, easily 200+lbs which would be even worse now because as she is she can't even sit up in bed, before she was able to sit up and stand up for a seconds or two rather well, which helped make transfering her possible. On top of general not-taking-care of myself (such as not eating or showering for days in a row, never going to see a doctor because I can't leave her for more than an hour) because I'm either doing something for her or too tired with what little time I have to myself that I use it to rest.
Despite explaining all of this and basically making it clear I'm pretty much cannot do it anymore, physically at this point and in the condition she's in I cannot turn her, lift her, everything else you need to do to care for someone like that. Despite it, the social worker keeps calling and wanting to set up her discharge to home. Her last attempt was "well lets see if we can work something out that'll help" her suggestion was to send a nurse here I think it was 3 times a week? For about 2 hours a day. Which is no solution at all if you know the kind of care my mom needs.
What do I do in this situation? Do I just keep refusing? Can they do anything if I do? Like they aren't going to try and send her home and I get a knock on the door one day and mom is on the door step. I am literally at my wits end. Like I can't even explain, I don't think I've ever been closer to the idea of suicide in my entire life because it's beginning to sound like it's going to be the only way out.
I ask these questions because the way I'm seeing it is you have two LO's needing assistance here and while they may have been helping each other out and may or may not be able to continue doing so they each need to be looked at as separate individuals, the same as they would living in different states because legally they are not a couple. Your dad may need financial assistance and there may be some available to him through programs other than mom or his children just as if he didn't have people who loved and were helping him financially. All three of you need to disentangle your finances and set yourselves up independently that way even if you live in the same house you each need to be contributing like roommates and setting yourselves up individually with a plan for the time you aren't all living together. This may be a great time for several reasons to put some focus on dad and making sure you are both prepared for any medical emergencies/aging that might develop with him, this way you wont have such a rocky time of it the way you have with mom.
It sounds like you have somewhat of a plan for mom, I know there are some current bumps in the road but that's likely to be the case throughout and if you can get yourself centered enough again to know your objective and abilities hopefully you can start to see them as just that bumps and not the life threats you have come to think of them as. To break that down, Mom is safe and cared for in a facility that it doesn't sound like you have any huge complaints about. Making it possible for her to stay there is what's on the agenda and I don't think there is any possibility of them simply discharging and dropping mom off at your house or her house without a firm plan they have verified as safe for her in place so take a few days and catch your breath. Work on the options for keeping her there or moving her if that's the better option but don't feel like there is pressure to get that done in a day or even two, take back some of the control and take your time to make the best decision for you, Mom and family thinking about the long term. So we are back to finances, Mom's finances. I think I read that she was once on MedCal, why was she then taken off of that (I don't know the in's & out's of that program) and why might it be difficult for her to go back on? If your mom's income is SS & pension as you know when she enters long term care she will need turn that over either up to the point that it covers the whole bill or MediCal takes over to pay the rest. The ship I think has sailed on setting anything up prior to turning everything over so have a meeting with the person who takes care of the financial end and make sure you understand what's going on and they know you are there to assist. Then you can turn to getting Dad's ducks in order so your set should the need arise. If you they don't have POA/DPOA's and M Directives set up, get them set up. It looks like doctors and family alike go to you for this anyway so you must be listed by your mom as the person to share and consult with by doctors and while that might be enough so far as you get into the LTC stuff having POA will probably be beneficial. I'm not clear as to what the medical issues are or if memory is an issue but if not get that done.
I hear you that all of this seems to have fallen on you but partly that's because you have been so skilled on taking it on, if you need help let your siblings know that & what they can do to help. Make sure everyone is kept up to date on important info, makes it easier & care for yourself too.
Deep breath's and get yourself a notebook for each parent with sections for conversations with doctors (to record what you are hearing), notes for NH stuff, names of nurses or personnel you are having issues with and exactly what you heard when, notes on the great caregivers you come across and notes on info you get from picking their brains and a little entry about each of Mom's days, how shes doing fun interactions or concerns, a diary for later and for much later as well as a running list of questions for doctors, social workers, admins...
Recharge and take charge, give your heart the space to lead you in the right direction because you obviously have a heart that will.
No rehab will keep her. It will be clear on admission to rehab that she cannot be helped and for them to charge the government for rehab would lose them their license. She must now have placement. There can be no argument. There must be a closed door policy. "My mother will NOT be coming back to my house because it is NOT SAFE for her, because there is no one here any longer able to care for her. You will not be allowed to place my mother in my home. Now it is up to you to find safe placement for her. Please look upon my mother as someone who now has NO FAMILY".
This sounds so harsh. I spent my life as a caring and loving nurse. But I have seen families go down to ruin both financial and mental and physical trying to do this. You know you have tried and done what you can. Now let the world say what they will about you because you KNOW better. And lay it on the line and walk away. I mean LITERALLY walk away if you must. Refuse to speak with them, and walk away.
I am so sorry that this is what is happening to you. But hon, what happens if this kills, or worse yet disables you for life? Tell me then who will step in to care for you AND even to visit with Mom when they finally realize they must place her.
My heart goes out to you. But you are going to have to stand strong and let them call you a witch or whatever rhymes with it. You have done ALL YOU CAN. You KNOW that. No one needs to tell you. You KNOW it.
When Mom is on the doorstep yes, exactly. SHE CANNOT COME IN. You can cry about it all you want, but at this point you dare not risk your life for it. Because the facts are clear and you have done all/more than all that is humanly possible.
I find SWs don't think out of the box. They really don't listen to why it can't be done. My Mom was in a lower room that is half underground. Meaning, the steps from her room go up out of the ground. SW kept insisting I could put a ramp there. No u can't. Round and round we went.
I talked to some places and got her some more time in a facility for now but as it is if she's gonna be there long term she has to pay/sign her social security checks (basically everything she has) over to them to cover the portion insurance won't.
Should be fine? No, because upon this enlightening I just found out from my dad my mom helped pay some of the bills at my dads house; and the past few months and foreseeable future he's been so strapped that he's *needed* her help with those bills or they wouldn't of got paid.
So now, I'm dealing with trying to figure out how I'm going to get a job asap (which don't get me wrong, having a job and a semi normal life is all I've wanted these past years) but on top of dealing with everything else I'm dealing with right now, so that I can help pay for a place I'm staying, that my mom might end up coming back to which if she does somehow I know I'm gonna be the one getting sucked into taking care of her again, then what...I quit whatever job I've acquired and go back to taking care of her?
This is beyond insanity. My anxiety is through the roof and it feels like someone is squeezing my head and shaking it non-stop. I get one problem seemingly solved, at least temporarily, and then another problem I never even knew we had pops up.
DONT accept her back. Tell the powers that be you are not mentally or physically capable and check with other family member. Pretty sure your mother can be made a ward of the state
family , healthcare are all using you to move the problem along. Have a rest, get a job and move on
Calling the Ombudsman of the facility Mom is in (at the present time) may help.
Focusing on the patient only may help, as in, "if you send the patient to this address without 24/7 care her condition will get worse" "She cannot care for herself". That error will be on the social worker, imo.
Key words are"the patient will get worse without care".
Then ask for her full name, spell it please, what is your license in (social work?),
and who is her employer? The hospital, the rehab, ????
ExtremelyTired,
even if you cannot make any of these calls, if you cannot answer the phone, there are so many solutions other than hurting yourself that you will not see or understand until you get past this difficult time. Take care of yourself for 3 days, then take another view of the many solutions. Be sure to call a suicide hotline if you have plans of suicide. You count too! You really do!
Hugs.....
ET, you do matter. Get yourself help if you needed!
You need to stick to your guns and keep saying "no."
Do you have your own Dr? How is your relationship with him/she?
I ask because what a Physician says can hold a lot of weight. If you could get a Dr to write you a note stating that you are in poor health and need rest as in defently. Furthermore, that you can not lift anything or anybody over 40lb. I can't say this will work.
I would also do what Barb has stated!
I really am trying to figure this out because taking your life is Not the answer!
It is clear that the SW is like a dog with a bone meaning she/he will probably not give up so easily.
As for the hospital, some hospitals have a policy that states "if a pt has no health insurance or has not so good health insurance then those pts can only receive basic medical Tx and must be discharged. This in the health field is called "treat & street them!" I know this because the hospital that I worked for (no longer there) does just that and unfortunately this is more common than what people think! Every hospital bed needs to make x amount of dollars and God forbid, if a Dr thinks a pt has some underlying cause and needs more testing and doesn't have health insurance or very good insurance then the Dr's hands are tight! There is nothing he or she can do!
Give me some time to chew on your problem maybe I can come up with something more and hopefully others will time in as well.
Hang in there!
Tell the social worker that she needs to find a facility that will accept moms insurance and get her supervisor on the phone.
I had a similar situation with my dad, see he's ready to go home, he can transfer from the bed to wheelchair, can't tell he pooped his pants but he can go home. NO, NO, NO, NO and then they wouldn't send the paperwork to the new rehabilitation facility that I found. I physically stood over the incompetent nitwit as she did her job to get him moved.
Hugs! Stay strong and tell them to get the state involved if they have to but your home is not a safe release plan.
You also do not need to explain yourself to the social worker. It is traumatic for you to do so, every single time she badgers you about taking your mother back.
As Barb suggests, keep it simple: "I can no longer care for my mother. Let's talk about placing her in a long term care facility." Then be quiet and listen. If social worker continues to badger you, be direct: "I feel you are not listening to me. I cannot care for my mother anymore. What long term care placements will you pursue?"
If you need to get their attention real quick, tell the social worker that you will be reporting your experience to CMS.
Now if it were a matter of just getting a little more time before discharge, that would be one thing, but it seems like that is really not a solution - the problem remains and will recur. Better to act.
Just keep it simple. "I am unable to take care of my mother. It would be an unsafe discharge to send her home."
Repeat as often as necessary.
That's what I've been doing but she keeps calling, she even resorted to calling the house phone when I wouldn't answer for a day and my dad said she tried talking him into it, which he learned after the last incident not to talk to them.
I think it's also time to get in touch with the Area Agency on Aging and ask for a recommendation for a lawyer.
ExtremelyTired, meanwhile you DEFINITELY keep saying NO. Her needs can't be met at your home, therefore it would be an UNSAFE discharge.
Not that I've got anything against social workers, but harden your heart towards this one. She is just doing her job - "placement comes first" - and following the line of least resistance. Don't let that line be you.
Honestly she'd probably try and go down the EC (emergency contact) list and try and get other family members to take her. But I have to keep my phone on in case there's an emergency (since I'm pretty sure my mom could die any day now, which further scares me about the idea of trying to give her half-assed care at home, only rushing the process)
I think she's making the assumption I can do it because I did it the past 5 years, but I explained back then she was a lot more well/independent. Seriously, about 6 months ago (before she started getting sick) there were some days she could get out of bed and into a wheelchair by herself. I would wake up to rustling in the kitchen at 5 am and it was her, in her wheelchair, getting herself a cup of coffee and taking it back to her room. She would wheel herself to the bathroom and wait for me to come help her transfer. She had at least some independence, but even with that little bit of independence it was still hell taking care of her, because for every little thing she could do there was so much that she still couldn't. But it was just barely manageable.
All of which I explained to her SW, and that if I ever decided to take care of her again, she'd have to be in a condition where they can show me, before I take her home, she can do all those things by herself again because that extra help from her is the only thing that allowed me to care for her the way I did because she is so heavy and can't be budged even an inch without her lifting most of her own weight or multiple people there.
Which as of now, she's gotten in such bad condition from repeatedly being sick and bedridden that she can't even sit up in bed by herself anymore.
They can't MAKE you take her home, can they? If you are unable and/or unwilling, as you have stated, other arrangements need to be made. Transfer her to a nursing home since, especially if she's been in the hospital for at least 3 nights, since it might be paid for for XX days.
I'm not sure what the position of the person you need to talk to at the hospital is to get it through to them that you can NOT do it, but keep going over people's heads ("I need to talk to your supervisor") until you find someone who can help you.
Please, please, please take suicide off the table as a solution. If you are seriously contemplating this, go to the ER and tell them this? Run away if you must, but do NOT kill yourself. There is hope and you WILL get things to improve.
And trust me, I've thought about just disappearing because I have 8 other siblings that can and should be helping deal with this, but most of them (so far only 1 sister has even attempted to help) just let it all fall on me and I have no idea what I'm doing most of the time; problem is I started taking care of my mom when I was 19? So I have absolutely zero education past high school or any job experience, and no finances what so ever. And because I don't have any friends there's no one I can turn to to ask if I can stay with them for a while until I can try to get on my own feet.