3.5 weeks ago, my brother and I had to take my mother to the hospital after she became delusional in Assisted Living. We were told at that time that she would be in their Geri Psych Unit for 7 - 10 days (max for insurance). She has bounced around from the unit to med surg floor from what was later determined to be "feigning" of catatonia. She's had every medical test you can imagine and all have come back normal. The Neuro Psych doctor told her if she didn't start complying, no nursing home would take her and that it would be a situation which could involve state hospitalization (she immediately became compliant when she heard this). We were told during all of this that she would not be able to return to assisted living so we began the process of admissions into a local nursing home. At first, we thought it would be for rehab then transition into long-term care, but with each passing day, it seems like something else is going on that we are not being made aware of (I can't get a straight answer from anyone). We call every day to try and get updates from case managers and admissions, to no avail. I wake up daily with a sense of dread and sadness that I am doing my very best not to let dominate my life, but it is becoming increasingly difficult. Neither one of us are in a position of being able to provide her the care she needs (and demands). What do we do if the hospital calls and tells us we have to bring her home? I live over an hour away and work full-time. My brother is local, but has his own mental health issues that have lead to frequent hospitalizations and now he is on disability. I am really at a loss right now and while I am doing my best just to focus on the things I can control, I feel like another shoe is going to drop at any moment. If anyone else has ever been in this position I would love to hear from you as to how you managed. I've tried to find hope in other posts on this forum, but mainly find horror stories of people who lose so much in situations like ours. Thanks in advance.
A suggestion, rehab is a limited Medicare benefit. MediCARE pays 100% first 20/21 days and then a % afterwards up to 100 days. So past the initial 20/21 there will be a copay which if she has a better 2ndary health insurer, they pay it. If she has a Medicare Advantage plan that’s more iffy. Whatever the case, MediCARE rehab benefit pays like dbl or triple what LTC Medicaid room & board does, so the NH rehab place will be ok & happy.
BUT
Most elderly post hospitalization discharge to rehab do NOT even go on to use in full the first 20/21. It is beyond mucho importante that she participates in her rehab. Like she has to make an effort and go down to PT, OT etc when the therapist or rehab aide comes to get her. They will ask her about going….. so if she says “no” or says “let’s do it later”, that’s her choice. HOWEVER, She will get written up as non-compliant for care. If she does this 2-3 days in a row, MediCARE will pull her eligibility. The therapist enter data almost daily so it will be in her chart.
She’s your mom, so you know her best & what might motivate her to get up and get on doing her therapy. If it means y’all need 2 go over & become cheerleaders than figure out how to make that happen. She needs to show “progress” in her chart. If she does and doesn’t hit a plateau, she could do 5-7+ weeks of Medicare covered rehab. It will depend on her progress and what her rehab codes are (they r called ICD-10 codes & ea one has a predetermined # of therapy sessions that she comes in on initially, they are hard to get around to be increased in sessions but can have codes added onto). Having her in rehab gives you & bro time to figure out what & where for her placement after rehab is finally completed & start to do or find what’s needed.
For my mom, she had torn rotor cuff surgery & rehab for it. She was very focused on being able to wash & set her hair & put on jewelry. Hey whatever it takes! So she worked at it both for exercises on her own & w the PT & OT at the rehab. She had coverage for weeks. BUT My MIL broke a hip and went from surgery @ the hospital to rehab at a NH. She was all it hurts too much maybe manana. She basically wanted to be waited on in her bed @ the NH. Rehab ended in abt 10 days as she was non compliant for care and showed no progress. Mil went from rehab patient to LTC Medicaid Pending resident. Never stood independently again. This likely would have been avoidable if she had gotten up & made an effort to do the 2x a day rehab & gait training. She was a most difficult person.
My point is your mom has to get on it in doing rehab. Good luck!
Then, read the replies and write down poignant advice (especially the REFUSE TO ACCEPT discharge part. Boldly state you do not have a safe house and will hold them legally responsible for discharge.)
Write a list of questions and call people who know how the game is played and can tell you what can and can’t happen. Take notes. Look for consistent answers.
- Call your county health department and ask for help.
- Call your library and ask if there’s a senior center. If yes, call the center and ask for referrals. Chances are they have a Rolodex of experts.
- Call the nursing homes and ask them what options they suggest.
- Call the pastor at your church. Ignore any guilt trips and request names of organizations and experts.
- Call 2-1-1.
If you need medical answers and aren’t getting them, escalate the situation with “who is your supervisor and what is the phone number?” Then call and tell them you need concrete information and expert advice instead of non-answers and threats to discharge mom to an unsafe environment.
Be calm. Be smart. Be a manager, I think caregivers tend to think like workers when they need to manage the situations for themselves and their loved ones. Think like a general (you) who needs a central intelligence (good information from many sources) so you and your team (of experts) have a strategic plan that works for both you and mom. Don’t let the hospital machine big you down with red tape and take away your power as the one in charge — and ultimately you are in charge of your mothers care.
And, by the way, if mom is contributing to the chaos, you might need a come to Jesus moment with her.
Stay strong. Right now, you only need to get to the next step.
Good luck!
They are all understaffed and have Iike 21 patients to 1 Nurse and 1 Aide.
They hardly ever answer the Nurse Call Button and if you need bathroom assistance, forget about it, you can lie in your on urine and feeces for up to an hour or more.
You can go over 2 weeks before getting a shower or your hair washed.
The Food isn't great and you have to eat what is served as everyone gets what they get and don't make a fit.
If your marked as a trouble maker, you'll be given meds to so Call calm you saying anxiety and or depression which ends up making you zombie like.
Accidents happen often.
Snothing of value gets stolen.
1st night after being transferred from the Hospital, a very nice blanket disappeared the next day and was said to have been taken for Laundry. I've asked several times over the course of 2 months and Never Got It Back.
There were other things to but I ended up having a family member take my ring and necklace home for safe keeping.
You can't have cameras in the room.
People can wonder the halls and walk in your room at any time.
If brother is on disability, why not let mom try living with brother and hiring a Caregiver a couple hrs in the morning and afternoon?
If your mom's husband was in the Military, she could qualify up to 30 hrs a week Caregiver help.
There are many Assisted Living Places, you might check out a different one.
Beleven me when I say Nursing Homes are a Living Hell.
There are Standards that ALL facilities have to follow. If they don't they will be reported.
There are standards how often a shower or bath is given. (In Illinois 2 times a week) And if necessary another if a person has to be thoroughly cleaned.
A facility can't just give you medications. The medication has to be ordered by a doctor.
Accidents happen at home. With many people that need 24/7 care there WILL be falls. It is not a matter of IF but WHEN. I had to call for a "Lift Assist" 9 times for my Husband and he was at home and I was right with him for each incident.
And I can not believe you want Mom with her issues to care for her son with his mental health issues. That is like trying to put out a grease fire with water.
As far as the VA goes. The care is for the Veteran not the spouse. And no help if the Veteran is dead or they are divorced.
The main problem I see that Kelli54 is having is that the medical staff is not communicating. Kelli54 NEEDS to talk to a Patient Advocate to help get this all sorted out and to get proper communication between all parties.
Again PLEASE do not paint ALL SKILLED NURSING FACILITIES with the same broad brush.
once again getting off my soapbox.....
So my advice to you is to keep being a strong advocate for your Mom, never give up on her. Keep doing everything you can for her. I know it is exhausting and you are right it takes precedent over your life for a period of time, but Healthcare is becoming very independent now. Many doctors and caregivers don't communicate what is truly going on, so you have to go there and see, ask questions, demand the care that she needs. A few days ago they were trying to put my Mom into a skilled nursing home and I told them NO she is not going there, because many times patients decline you do not know who or what goes on in these places, especially with the Pandemic they Quarantine Patients that leave a Hospital for 14 days. I have had people tell me their stories and many of their loved ones die alone in these places. It is truly sad. So keep up the fight for your Mom, because you and your family are all that she has.
My mom was in the ICU and that hospital fir about 3 weeks then almost another month in an acute care “step down” hospital before we went to “rehab” (SNF) - due to my moms injuries physically and cognitively she was not safe without a family member there at all times.
We had never been through something like this - I had no knowledge on stroke nor skilled nursing etc. it was a nightmare - I wasn’t mentally capable of “getting a plan” together - everything was learning stroke - learning the system - learning what to do to care for her - the emotions tied to it - the no sleep - the trauma (because it is traumatic) - in first weeks you are in survival mode - and doing your best. I have since learned a lot.
My best advice “right now” is to get a plan for her amongst the family. Does your mom have any monies to help with aides or enough 109% dedicated family to be woth her often? As when they decide her plan of care - and give the 24/48 hours notice of “pick a facility” yours need to be in place and be ready for it.
I took my mom home from SNF after transferring her to a hospital (as she had an infection - but my mom couldn’t even talk at that point and there were too many negligent things that happened in the 3 weeks she was there but after almost 3 months I couldn’t be there 24/7 and she wasn’t safe without a 24/7 advocate with her) -So I went home Alone and did in home therapies. It was slow and it wasn’t even close to what therapy is provided at the SNF. I loved her therapy team at the skilled nursing - it was the care that was horrific. I saw what happened to those who didn’t have family in there with them - sitting in urine - food tray left out of there reach - call buttons ignored or the buttons even placed out of their reach - nursing home patients wandering in and out of rooms - it was awful - and I took mom out as I knew if I wasn’t there every minute she would receive the same neglect and she couldn’t talk then.
What I wish I would have done different was (formed my own team - including hired caregivers and family) to do shifts so my mom could have had someone with her at ALL times in the SNF - so she could have received the more advanced therapies. They need that consistent therapy.
I was beyond exhausted - almost 2 months in hospital stays before even arriving to the SNF - I had zero direction on how this worked - emotionally mentally and physically I was spent by the time we even got to rehab.
I can tell you that therapy is needed - I 100% agree for the level of stroke I’m assuming your mom had (like mine) SNFs are not qualified for that level of care (they do not have enough staff to take on what is needed for massive stroke in the beginning of recovery) and therefore should have and need a full time advocate with them at all times. So I just want you to hear from someone who went through this - I wish I would have known to hire an outside team to relieve me and keep her in there for just the therapy alone. If she has the money - pay for outside caregivers to be with your mom (when u or a family member can’t be) and go to SNF rehab - I think moms SNF therapist were harder working - more knowledgeable and truthfully more determined because they are actually the ones sent the hardest cases - the “acute care rehabs” that allow 2/4 weeks (at most) get the strokes that don’t need as much care or therapy - the SNF therapist mom had for those 3 weeks had more drive than the outpatient “award winning stroke hospital” Rehab we went to after in home therapy was finished. The SNF therapy team can usually get them to reach more goals that insurance will allow her to keep receiving therpay. I wish I knew to do this 3 years ago - my mom would have still come home with me in the end - but I believe stronger out of the gate. Best of luck 🙏🏼
Next time you speak with the hospital make if VERY CLEAR, you nor your brother are safe discharge options. PERIOD! You do not have to explain anything, just say she CAN NOT SAFELY BE DISCHARGED TO US!
When my dad was being released before he could safely return home, I made it clear to the discharge planner that he doesn't have 24/7 care available, no matter what he is telling you and I am not an option. Because I was definite in my tone, she just said, okay, I'll find a rehab bed.
Making sure she is getting the care she needs is taking care of her. Don't listen to anything that says otherwise.
I would throw the doctors under the bus to shoosh people up. The doctors say she needs 24/7 professional care and she definitely needs an environment that has socialization and structure that can't be found in home care.
Great big warm hug! This is hard enough without people laying guilt trips.
opportunities…. Can’t be held prisoner in their own home … if some here haven’t found good care home for their loved one .. it’s because they haven’t looked hard enough or didn’t come with the extra $$ a good place costs. Forego
the inheritance .. sell their house and use $$ to provide the best care you can for your loved one !!!
Let their tongues wag.
Instead, be like Mom's doc and stress HER choices. She has fewer by behaving badly, and she recognizes this as the doctor found out.
Stand strong and say NO. You know she is too much to handle, by taking this on, you’d only be delaying the inevitable and putting you all in danger in the meantime.
Take a deep breath. I know life is crazy right now, but you have to stay strong. Just keep telling yourself what I tell myself constantly: “This isn’t for forever. This is just how life is right now. One day, this too shall pass.”
You say NO. Over and over and over if necessary. Whether she's choosing to do weird stuff at the hospital (my mom is famous for this) or whether she really can't help it the results are the same. If she needs to go to a state hospital then that's what happens. If she can quit monkeying around and go back to her AL then that's fine too.
Remember she is safe and cared for, even if it's driving you insane not being able to figure out what's next. When they've decided they've done what they can for her they'll start calling you and asking/demanding/threatening you to take her off their hands. You have to say no unless you'd like to be 100 percent responsible for figuring out what's next. They CAN figure it out, but they figure it's easier to make you do it.
Your mom was in assisted living (has she ever had episodes or diagnosis of dementia or mental health issues before).
I am assuming they have check her for a UTI and bloodwork. Ask what these results were.
My only other guess or question would be did your mom start any new medications (in the weeks before her hospitalization) and ask to review all and any current meds she is on.
My mom had a severe reaction to an antibiotic that gave her toxic encephalopathy (I can only describe it as it was as if my mom was a patient actually in a psych ward). It was that awful.
Have you been to the hospital to see her? Are either of you her healthcare surrogate? If you have not been there - i suggest you go and ask to meet with each dr and review every medication and test. When my mom got toxic encephalopathy - the floor doctor refuses to listen to me tell him that this was not my moms normal - I researched while spending 3 weeks in the hospital watching her decline mentally - I requested ID who switched the med and she came out of it for 24 hours and then it came right back woth the new one and I finally refused the antibiotic and had to sign off to refuse it - once the antibiotic got out of my moms system - she came to and it took her weeks to recover cognitively from the encephalopathy. Any medication can cause these types of affects - it may not be what is happening but it is worth looking into - they labeled it toxic or metabolic encephalopathy in the end. 🙏🏼
there is her current fat medical chart & old records from the AL that show she is beyond a challenging patient / resident.
Two things ime you must MUST keep in mind….
1 The hospital she is in has a discharge planner who is the point person to find placement for a current hospitalized patient. The discharge planner has the resources and know of what’s available in the area or region.
BUT
2 if family can be convinced or coerced to come and take MeeMaw out if the hospital and back to their home / apt, that is by & large what the discharge planner will try to do. It’s the easiest solution fir the discharge planner. Move the monkey off thier back & over to you. Problem is it’s not a cute impish Capuchin but a difficult old Orangutan.
Please pls pls realize Once you or your bro go and sign mom out, she’s 100&1% totally your problem. Whatever resources they tout mom can get, like in home aides, PACE center, yada yada etc all will require you to be there first and foremost to be moms 24/7 oversight. If you cannot do this, then you need to clearly & firmly let the planner know that you will not be coming to get her, that it would be an unsafe discharge (to your home) and that you cannot provide the oversight needed. You do not need to go into details. If you have difficulty in going into bad bitch mode, then role play this ahead of time with a firm friend.
what that one MD told your mom is accurate, the state can step in and do a placement and this is done by mom being made a “ward of the state”. Should neither you or bro get her, the planner will contact APS and they in turn contact the court to have a emergency order done to make mom a ward and have a court appointed guardian to deal with moms care. It is not a bad thing; that guardian can cut thru paperwork and get your mom placed into a facility that can provide the care she needs. Yeas it’s a hard decision but sometimes ward of the state is the best decision. Good luck.