Rehab requiring 24/7 sitter and worried it will never end. How can we afford this!? Give me advice and your experiences please!!

There may need to be sooner than later division of assets and finances here, so that your Mom can have placement, and can access medicaid when her own portion of the marital finances are spent. Consider seeing an elder law attorney with these questions.

Do not hire a sitter for your mother. The rehab she's in is already collecting a fortune for her care. If they cannot provide the care she needs it is their responsibility to communicate with her family (you) and find her a facility that can meet her needs. Do not hire a sitter at $600 a day. That is ridiculous, Tell the rehab that she does not have that kind of money to hire one and that they (the rehab) should not have accepted her into their facility if they are unable to adequately care for her. Remember, your mother is not staying in rehab for free. They're getting paid but don't want to do their job. Part of the job at any care or medical facility is to ensure the safety of the patients. Don't hire a sitter.
The rehab will send her to the hospital and they will keep her there until a facility is found that can meet her needs.
This rehab is playing a game of chicken with you and are waiting for you to blink first. Don't do it. Your mother was accepted into the rehab facility. They knew when they accepted her that she suffers from advanced Parkinson's disease and dementia. This information was not kept from them. Now they want privately paid outside staff to be there 24-hours a day for her, but they'll still collect the full amount for her stay with them. What a sham.
Tell them to send her to the ER and the hospital will find an appropriate facility for her. While she's there, they will provide a sitter that is employed by the hospital and paid for by insurance. You won't have to find and pay one.

You’re not blowing money. You’re paying for care. If her behaviors require a sitter the family can be the sitters or you can pay for sitters. The rehab fee does not include one one care 24 hours a day so you are not doing their job. My father had to have a sitter 24 hours a day for over 8 months. Family stayed with him from 11 pm to 7 am. Then a sitter for the other two shifts. It was an expensive but a necessary expense. That’s what he worked and saved for; to pay for good care in his old age.

In a case like this, I do not see any out except to place her into a nursing home and apply for Medicaid. She needs to be where she is safe and cared for and to pay sitters these prices when they are limited what they can do is insane. You need to speak with an eldercare attorney what you can do to protect your father when he needs help. It should not all be spent foolishly. And do NOT bring her into your home - it will be disaster. Say no, you cannot care for her properly and they must find a place for her. If she is at home, find a way to get her placed.

If Mom can't afford a sitter, then don't hire one. Cost of her care should not come out of your pocket. Really, Rehab is just going to have to do it. They are just trying to cover their tails. By hiring a 24/7 aide it takes the responsibility off of them if something happens to Mom. Its called liability.

When I just started to dabble my feet in the waters last year to see what may be options for mom (as she wanted to see and learn about other options for after her stroke recovery) I did look into some local assisted living and even MC as she needs more assistance with many aspects and because of her cognitive deficits I also had them give me info on memory care down the road etc or even starting there and moving down once she rehabbed more and that is where I found out that they can require you to hire 24/7 private aides. Like you - I thought so if mom wants to be on her own and have some independence without me and feel like she has her own space and can create her own life- it will cost her 8/9k for memory care and if they feel it’s too much work she will need a private aide 24/7 and can require such. It is nonsense! They also won’t allow bed rails at all here and my mom has been trained since day one after her stroke to use bed rails - it has been the only way she can help in her ADLs. There are so many ridiculous things I have learned about this healthcare system that make absolutely no sense. Massive stroke survivors should be in very specific brain injury rehabs - not in Poorly run SNF/nursing homes. It’s not the rehab staff - it’s the nursing and CNA training that are overwhelmed because they do not have the training nor time to deal with such high level specific care. I could go on and on and yes I agree with you 100% - I also assumed paying more for memory care included a very specific kind of care that would mean the person would get higher level assistance in all ADLs and activities and not “maybe” need also their own “private 24/7 aide”. But I was warned by many others - if she goes there chances are they will come to you weeks later requiring her to also get her own private care to stay. So I stopped looking at additional places and just kept on our rehabilitation journey to get mom stronger in her body and cognitively before she looks at places again and has found more of where her recovery “landing spot” will be before she tours any places.
I have read many stories here where once the correct medications were found to balance the PD they have seen their loved ones do a 180 so I am wishing the same for you because I also like you see the choices out there are not great options.

My Dad was on Medicare and during one night in the hospital he got delirious and attempted to leave. From that night on the hospital provided a sitter during the remainder of the stay. That record did not follow him through other hospital stays. During Covid, my mother continually tried to get up to use the bathroom. She even climbed over the bed rails. That hospital put into place a monitor with camera that alerted the nurses station. The bottom line is that it's THEIR responsibility to keep the patient safe while in their custody.
You don't provide enough info about your Mom's health insurance but I assume she is old enough to be on Medicare, with a secondary (spousal) insurance from your Dad's employer. If your mom needs a sitter while in rehab, why isn't the rehab providing supports? Wandering, dementia, and fall risks are all very common in the elderly in any hospital/rehab setting. Why you are paying for a sitter - did you volunteer or were you requested to? Some piece of this situation is missing.
As for long term care in any facility, it would be wise to contact an attorney who is well versed in elder care and Medicaid. Medicaid will pay for LTC in a facility or at home if your parent's finances allow. The attorney can advise if she qualifies for Medicaid, and help set her up. At the very least, you will have the legal guidance you need to get the proper care for both your parents. Many of these specialized attorneys give free consultations - don't delay.

That stinks that her meds got so messed up and her condition was so negatively impacted!

How long have you been on this detox/rehab route? Is she improving yet or still trying to figure things out? Is she doing her physical rehab? I can see where maybe rehab would not be able to handle her symptoms at this time. Hopefully she will continue to improve and will not always require a 24/7 sitter. That sure is expensive!

When she is straightened out, I don't know if she will need a 24/7 sitter. Seems like MC or SNF would be better equipped to deal with people with dementia. I know hospitals have bed alarms that go off if people who are not allowed to get out of bed alone try to do so. Maybe other facilities also have these? Sometimes they set up cameras so they can see what the patient is trying to do.

Although the sitter is expensive, it may be necessary at rehab to keep her safe and well cared for.

The long term financial impact of this, I agree that your dad should consult someone that specializes in elder law and can guide him about what to do. At some point your mom will likely end up on Medicare to pay for her care. You might want to put her in a facility that accepts it. That's what we did with my MIL. She's in one now and my hubby is finishing up the application and providing them with everything they need to approve it so they can start paying the nursing home. She had less than 20k when she had a fall and a broken bone and decided not to go back to her senior housing apartment.

Good luck. Definitely a rollercoaster.

If rehab is requesting a 24/7 sitter I would question what treatment/care that the rehab facility is providing and why they want a sitter. It may be a reasonable request based on the patient's circumstances, but the rehab facility should explain that. Ten years ago my husband was discharged to a rehab facility after a near fatal stroke. His respiratory problems resulted in my first choice of rehab unable to admit him. The facility where he was sent did utterly nothing for him, including neglecting basic
hygienic care. He spent a couple of weeks there (on my job insurance) before being discharged to a skilled nursing facility (for which I have no end of praise) before coming home disabled but cognitive. Beware of rehab facilities. Our experience was that the one we got stuck with ran the clock on private insurance for rehab and then hasta la vista baby.

My mom needed a sitter. She did not pay nearly that. The facility that mom was in had some kind of agreement with outside providers that were much cheaper. Heck, that is nearly $30.00\hour! $18,000 a month?!

Now the statement made by some that this is a facility problem without enough caregivers, which could be part of it. My mom needed one on one to keep her engaged and out of trouble. It is unfair to the other residents to expect care be taken from them to transfer that to your mom. My mom was a danger to herself and others.

Eventually mom was kicked out and hospice recommended a much smaller, homier care home. It was cheaper than the large facility, it had a better care ratio and worked much better for mom. She still needed a 24/7 on occasion but the total cost became more manageable.