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Mother has Advanced Parkinson's and dementia. She currently is in Rehab from a geriatric evaluation gone bad (over medicated/ messed all her PD meds up where she couldn’t walk or talk.) Pulled her to a different hospital to detox and get back to baseline. Rehab has required a 24/7 sitter. This is $600 a day! Trying to figure out MC or SN for her level of care. Since a sitter has been on her record since her detox hospitalization I feel like anywhere we go will require a 24/7 sitter. She is a fall risk and roams. Her balance is off from her PD and she’s going through delirium from all the medication and moving around. Anyone been through this and have advice? How in the world can we afford $7K a month for MC or $10K a month for SN + 24/7 sitter? Dad is on Medicare and worked SO hard his entire career- what to blow it on a sitter b/c facilities see it as an easy out to not provide care. Let the family pay for a sitter so they don’t have to go in the room and check on my mother as frequent. I’m so frustrated with the system the last 60 days have been a rollercoaster!

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Folks don't realize, or at least we didnt, that when someone with dementia is in the hospital, there is no one to "watch" them to make sure they don't get up and walk out or fall down a stairwell or go into another patients room. When my husbands aunt was hospitalized he had to take time off from work to sit with her or we were going to have to hire someone, which we couldn't afford. It is awful that there really is not set up for folks with dementia, but every day there are more and more of us diagnosed with it, so our society had better get on board with how we are going to handle these types of things.
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Frankly, dementia is the real deal-changer. These rehabs/hospitals/skilled nursing centers are simply not equipped to handle someone with a physical ailment and dementia. They seem to be afraid to deal with a patient and just want them out ASAP. That's where you are right now.

First, I'd recommend memory care for Mom, not skilled nursing. My mom was originally in SN, and they simply ignored her because she didn't really need that level of care but she also had dementia and they didn't want to deal with it. As a result, she slept about 18 hours a day to just shut out the world.

I moved her to a MC care facility, and they did a couple of things -- first, they moved her into a wheelchair full-time because walking and falling were simply too much of a risk, and they brought her out of her room and involved her in the activities whether she could participate or not. Her dementia didn't faze them, thank goodness.

The other decision I made was a year ago after a traumatic hospital stay much like your mom's where they didn't know what to do with a dementia patient. Once she was done in the rehab place and back at her MC, I had her put on hospice, and I made the decision that whatever ailed her would be treated where she was with no more hospitals brought into the mix. (Of course, if she'd broken a hip or something, we would have gone to the hospital.) It made her last months much less stressful for everyone, because she wasn't subjected to the agonies of being in an unfamiliar place. That's the hardest thing on a dementia patient -- scary, unfamiliar places.

You have to decide what the most important thing is you want to address in your mom's care. I decided that her heart failure and creaky knees weren't going to get better, so I focused on keeping her mind stimulated. That's what led me to Memory Care, and honestly, I wasn't even 100% sure she was qualified for it at the time. (She turned out to be MORE than qualified for it.) In Memory Care, she wasn't treated like a patient, which is what you're going to get in Skilled Nursing. In MC she was in a friendly, homey environment, and she thrived as much as she could. She literally never slept more than the normal eight hours at night and a small nap after leaving Skilled Nursing because there were things to keep her engaged and stimulated. I can't stress how important that is.

Yes, it's horrifically expensive, but if Dad can't afford it, get with someone to help them apply for Medicaid. Otherwise, yes, it's sad that he worked so hard for so long to save for retirement and that's not what they expected to spend that money on, but life doesn't always go as we'd like.
Good luck.
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Going thru something similar with my mom. Dementia stroke patient who lost the ability to walk but thinks she can walk. If she is not watched or restrained she will fall. Had 2 ER visits within 24 hours at a highly rated SNF so we had to pull her out after 5 days. Moved her into a boardncare home which has raised the price from 4800 per month to 6000 per month after just five days. 24 hour in-home care would be 14,000 per month. Note we are in California. Now looking at a memory care facility that claims they will be able to keep an eye on her, which starts at 7500 per month. Unfortunately there are no affordable options in this category of care if you want them safe.
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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.
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My father had advanced Parkinson's and was in a NH. The NH ensured his safety by placing him in room where more eyes would be on him, a room located in a central location. There was no money for a sitter, the NH did what they had to do to keep him safe.
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mh1983: Do not hire a sitter as this is the rehab's job.
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I haven’t been in this situation so this is just an idea to toss around:
I’d likely say “I appreciate your concern but this is your business, not mine. You hire employees to care for your customers. I don’t. If you need additional resources, I suggest you talk to management. With all due respect, this is your problem, not mine.”
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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.
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What facility doesn't have access to containment beds? And what about soft restraints to keep her in a wheelchair when up? Most facilities have video monitoring of patients who need it, with a trained nurse or other staff member at the nurses' station watching a split monitor for those patients. This also allows the patients to ask for specific assistance when needed, instead of just pushing a call button and then forgetting why they did that.
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Starmuser Dec 2021
This is true, but in the US, many states require a medical POA be in place before any of the restraints you mentioned can be used. We ran into this with my father. It literally killed him, despite his having had 24/7 sitters.
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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.
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PeggySue2020 Dec 2021
Riley is 88 or almost so, and she's here to tell us that Seniors don't have to take over our lives. As long as they're independent legally, in their own house, then they can hire whomever they wish or try to get along themselves. As they lose independence then they need to be grateful about it and graceful about what is to come as NHs, whatever, have been around since the 1950s.

Certainly Riley's peer group knew that, which is what she's trying to tell us. It's enough to have children who care for you enough to even get you situated. All these seniors should be grateful for that.
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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.
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AlvaDeer Dec 2021
I agree. I hope that no one in the family is paying for these sitters, because when everyone has gone broke and on welfare the sitters will stop. Many people who are fall risks or who are mentally impaired with acting out features are placed in nursing homes, and they do not have sitters. They are, however often medicated, and this all falls under the purview of "not everything has an answer." Our elders often float from agitation and acting out to being drugged into an almost zombie state because there is almost never a happy medium. Like most things in life the pendulum swings from one evil to the other side, with little swinging gently in the middle common sense. The family needs not to use all of the assets of the other spouse, nor their own. Placement in some sort of memory care will be a necessity. Just one of the awfully sad facts in life, the limitations of living a long life with a care system without perfect answers.
And yes, I can promise, as a lifelong nurse, we would LOVE for all patients on Q15 minute checks to have a sitter. Would certainly get OUR votes, and we would not be concerned about WHO is paying for it.
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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.
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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.
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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.
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dspd77 Dec 2021
That's nice of you have family that helps, but if your on your own it's a different story. You have to find sitters who you can trust.
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When a loved one is hospitalized, please ask if they are being seen by a Hospitalist-description is copied from their official web site.

"In addition to their core expertise managing the clinical problems of acutely ill, hospitalized patients, hospital medicine practitioners actively support the implementation of evidence-based guidelines and practices to facilitate optimal continuity of care and enhance the performance of hospitals and healthcare systems by:
Managing day-to-day care and providing prompt and complete attention to all patient care needs including diagnosis, treatment, and the performance of medical procedures (within their scope of practice)
Employing quality and process improvement techniques and practices to make the hospital a safer place and improve patient outcomes
Facilitating collaboration, communication, and coordination with all physicians, healthcare personnel, and care team members caring for hospitalized patients
Supporting safe transitioning of patient care within the hospital, and from the hospital to the community, which may include oversight of care in post-acute care facilities
Practicing efficient and judicious use of hospital and healthcare resources
Through these practices, hospitalists provide efficient care delivery and improve clinical outcomes, reducing mortality rates, enhancing care coordination, preventing hospital-acquired infections, and facilitating comprehensive transitions of care. The hospitalist’s extensive clinical experience in caring for some of the most complex medically ill patients as well as the hospitalist’s focus on providing patient-centered care translates into safer, higher quality care for hospitalized patients." Society Hospital Medicine.

My husband was one of the first hospitalist practioner in the country. He taught, trained, mentored many doctors in this field-including one who was a past president of the hospitalist association.
Hospitalists are trained to untangle messed up meds, get everyone on board to streamline care and to work with patient's families.
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Isthisrealyreal Dec 2021
That is what it used to be. Times they have certainly changed.

Not my experience with hospitalists in the least.

I wish that was what they still did.

Your husband would be appalled at what it has devolved to be.
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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.
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NYCmama Dec 2021
I think you are referring to Medicaid (not Medicare). Medicaid pays for long term care if you qualify financially.
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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.
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Myownlife Dec 2021
I hope they can find one for less than $600/hr. which is what my Mom has had to pay the elder attorney here.
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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.
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