Our mom suffered a terrible fall as a result of being sent home to deal with a burst appendix from the hospital. She incurred TBI (traumatic brain injury) as a result of the fall and had to spend 4 months in the hospital.. most of the time was spent there because it took her body so much time to recover from the surgery to remove her appendix and the TBI took a back seat unfortunately. We finally got our mom into a great subacute facility where she is getting PT OT and speech. Thu nurses, staff and rehab team have been wonderful really. She has yet to regain any movement on the left side of body nor can she talk much. She is also on a PEG for food. As a family our goal has been all along to get our mom back to her apartment while we apply for Homecare Medicaid. But the more we speak to the rehab facility and others about my moms needs which are 24-7 care, the more we are being told that its not safe and realistic to bring her home because we could end up getting very little care from Medicaid. If she could talk and or walk, it may feel different but we are worried that b/c no family member can be there and live with her in her studio apartment that an aide could very easily take advantage of a person who cant speak or walk. On the flip side, if we have our mom go from the subacute part of the nursing home into their long term care then my mom will have to give Medicaid all her $ and she won't have any $ left to go home and pay for extra help *potentially* down the line. As much as we want our mom home, we are also worried that the quality of care from Medicaid will be sub par and will jeopardize her ending up in the hospital and getting sick and never making it out. I am so torn as to what to do? Anyone been in this situation with a parent that can't speak or talk and has had to decide which direction to pivot to?
Please realize that if - IF - she should be eligible for a Medicaid Community Based In Home Healthcare, these programs are NOT all encompassing. She will be evaluated 4 “need” w/max # of hours of service. Family does not determine # of hrs or care plan. Assessment based on real time & review of health chart. If high #, application can be declined as level of care is beyond scope of IHHS as determined best off as a custodial care LTC resident in a SNF with 24/7 oversight. Most IHHS do under 20 hrs wk; maybe 3-4 times wk an aide level of CG comes over to ck vitals & medication management, do bathing, do skin ck, reset the bed, with occasional visit by an RN or PT/OT. Your State law will matter as who can deal with PEG line, as many DO NOT allow for a CNA to deal with them. If so, family will have to deal with her PEG or hire a Nursing service. Higher # of hours can happen…. if limited facilities but otherwise it’s edging into being full time as there is agency administration time so beyond Community program guidelines. These programs REQUIRE a capable adult in the home / apt all other times to ensure safety & security of the client. FWiW in home hospice (Medicare benefit) has same requirement.
IHHS programs are done by agencies under contracts with State Medicaid division, workers tend to be “aides” (perhaps a CNA but perhaps not) who tend to make slightly above State’s minimum wage. If you are in a $7.25 hr min wage, difficult to retain workers. More requests for care than agencies can provide for. Workers on a time clock as probably seeing more than 1 person in their day…. Imo really don’t have time to “take advantage of” that you’re worried about (along with Medicaid copay rules).
- So if mom returned to her studio apt, situation would be there is NO family that is willing to be with her to fully provide 24/7 oversight and do whatever care needed, when there is not a private pay/paid by Medicaid caregiver, correct?
- So mom is unable to effectively communicate, has no movement on an entire side of her body, has a PEG line and is not able to walk on her own, would be left unattended at some point within the day, correct?
- So if there was a fire at the apt complex, your mom could not 100% on her own do whatever needed to call for assistance or get to a safe zone outside her apt?
???Why does moving her to her apt seem like a good plan???
Your mom has had 4 months of in-hospital care PLUS specialty subacute care. If she was able to get better, would have had signs that was happening by now. Yes, TBI do take longer but most of those successful in prolonged TBI rehab are younger & fit before that bad auto / motorcycle / sports or other fall that caused the TBI. Not to be harsh but for most elderly who fall, the path is: hospitalized (Medicare & health insurance pays), discharged to rehab (again Medicare & health insurance pays), stop progressing in rehab at week 5; majority transition from being a rehab patient (Medicare & health insurance) to a custodial care resident who remains at the same facility. Otherwise they return home. For a NH, custodial is private pay, LTC insurance or file for LTC Medicaid once they are financially “at need”. Abt 60-70% of custodial care NH residents are on State run LTC Medicaid.
I would HIGHLY recommend that you find out asap what her status is for health insurance coverage. Insurance will not pay indefinitely. When coverage ends, decision has to be made. Choices are narrow: 1. remains at this NH or moves to another NH and private pays till LTC Medicaid eligible, OR 2. returns home or a family members home, she uses her $ to pay for care or family cares for free or some combo of this OR 3. EMS called by the NH and she’s sent back 2 hospital & becomes their problem (old NH will not let her return). For those medically frail, this is often what happens.
Current facility will not let her stay there indefinitely without payment established.
I think Mom is better off where she is. Since I am 75 and DH 78 I don't consider us old but the medical community does. I lost a friend 2 years ago after he fell and hit his head causing a brain bleed. He was 73 and the doctor said his age had a lot to do with if he pulled thru.
It sounds like where she is now would be a good fit and you already know the care will be good.
I'm so sorry this is happening.
Using your own funds at all is very unwise. It will take a lifetime of good luck, good jobs and hard saving to get to a place where you can sustain your own care needs for your own future.
Your mother may never recover from what has happened to her. I encourage family to seek help dealing with questions as to whether sustaining a life of this quality with little hope of recovery is in mom's best interests. Only you know her, her age, her prognosis from doctors. We don't.
I encourage you to stay on the site and read.
I welcome you to the forum.
And again, I am so sorry for what has happened for your mom.
I’m very sorry.
I had to make the difficult decision for my uncle to transfer rehabs skilled nursing to long term care when he reached his plateu but still couldn't walk or do a majority of DLA.
I was told he could have 24/7 care with medicaid home care. I absolutely knew from my FIL experience that this was severely understaffed and any gap in coverage would fall solely on family to find coverage of do the care themselves. It is not sustainable when family is working full-time and have families of their own.
Your mother requires a level of care best suited to a longterm care facility. You need to set aside emotion in this decision. It isn't what your mother or the family wants but what is needed.
While a long-term care facility has flaws, your mother is in a safer environment there than at home.