My Dad is 94 with Parkinson's, in a somewhat "hands-off" assisted living place. Just found out he contracted COVID a few days ago, and he must stay in his apartment for 10 days. No visitors, not even at his door to hand him something. The problem is, he has begun having a LOT of delusions in the last week, and we don't know if it's from the COVID infection or from some recent medication changes to his Parkinson's meds, plus the addition of a new antidepressant. He had very mild delusions before that, but has had moderate cognitive decline or mild dementia. Anyway, his delusions may spur him to try and leave the apartment, in which case, we'd have to find a place for him to stay, and we DON'T HAVE ONE. He could not stay with us, no room. Hotel doesn't seem feasible either. What nursing/rehab home would take him with COVID? And so, I'm in bad need of ideas. Even hiring a home care person from an agency to go to him; would anyone do it if he has COVID? I just don't know what to do but I am panicking. I have written to his neurologist about adjusting his meds back to where they were, and that we needed input TOMORROW since the resident director nurse only works weekdays. Any brainstorming ideas? THANK YOU!
He may not exit the hospital & easily go back to the AL. Heres why:
usual path if hospitalized (MediCARE coverage) is for them to be discharged to rehab. Rehab is done in a SNF aka skilled nursing care facility or a NH with a rehab sector. His old AL - unless they have an actual rehab sector that’s staffed - will not be able to provide the rehab services. Rehab is based on ICD-10 codes set by diagnosis…. Like post hip break is within a 28 day rehab period. The usual - magically! - is 20/21 days as that is what Original MediCARE pays 100%. Rehab in theory (& some places tout this up) can go up to 100 days but at 50% coverage by Original Medicare & the other 50% at his secondary insurance or private pay BUT he has to be measurably “progressing” as a rehab patient as notated in his chart that MediCARE pretty much reviews close to in real time. Rare imo to ever get to the 100 unless it’s was auto accident / TBI recovery in a specialty rehab facility for a younger elder. Pls realize that rehab in a SNF/NH will have OT, PT, ST that will come to his room and work with him in his room or wheelchair or walker him to the rehab unit. Unit will have all sorts of equipment. The regular NH residents also get time there as they get maintenance therapy. Like my mom had “gait training” & Medicare pays for this for those in Long Term Custodial care.
If his AL does not do rehab, in theory, he could go back but you or your siblings will need to take him to a free standing rehab center several times a week. If he discharge care plan says rehab needed, he kinda needs to at least attempt to do it. You don’t want him to ever be written up as being AMA aka against medical advice.
If he has a Medicare Advantage Plan (not a fangirl, actually think they are the devil) the payment stream may not be there for rehab. Advantage Plans rarely have rehab in NH in their network.
The discharge planner at the hospital will have lists of rehabs. They try to match up best fit. But everywhere has staffing shortages right now.
Fwiw SNF/NH love rehab patients. Original Medicare pays like 2X-3X per diem more than a LTC Medicaid custodial care pays. What tends to happen is rehab patient comes in under 20 day care plan. Within first 2 weeks it’s determined that elder really cannot return home / IL / AL. So determination made that they are best off staying. They sequeway from rehab patient (MediCARE) to custodial resident (private pays, LTC insurance or LTC Medicaid). They have the big fat health chart so can easily meet whatever criteria needed medically for long term care. 60-70% of all NH residents enter via rehab.
Try to have a frank & clear talk with his MD and the hospitalist MD assigned to him as to what he is likely to be at ADL in 60 days. No sugar coating! Ask if his encephalopathy may be his new reality. If it was caused by an infection that’s 1 thing, but if it there’s a tumor or mini TIAs nobody ever suspected, that’s another. I did a quick search and it as a result of Covid seems to happen as a delayed effect with severe Covid cases; your dad had mild Covid, so try to get other causes for encephalopathy ruled out.
I think finding out their experience as to what’s likely for dad is important cause if he’s likely not to be at the baseline needed to ok in his old AL, having him go rehab and then remain there to become a SNF resident there may be the path to take.
I know you don’t want to hear this and your Dad would be totally not accepting of being in a NH. I’d just be worried that he goes back to that $7500 a mo AL & you find a private pay aide for more $$; then in December the AL calls to tell you they “oh so love your Dad but he needs a higher level of care and this is his 30 day notice”.
Theres a couple of RNs on this site, perhaps one of them can provide some insight on encephalopathy.
AL, like IL, contract usually require a written 30 notification to them that the resident is moving out to have billing stop. Dad is under his AL contract right now whether he's actually there or in the hospital or away on vacay. AL in my experience do not ever do a “bed hold” like a SNF/NH does; AL are 30 Day full pay contract.
And that’s my dear, is the rub…. Rehab tends to run at least 20/21 days (as that’s the 100% Medicare coverage standard). If he exited the hospital EOW to go into rehab, rehab likely will take him into November. If his AL contract states payment due in full every month, then his Nov AL rent of $7,500 will be due. If flat not feasible for him to return to the AL, you / dad need to notify then asap of this to get his DECEMBER AL rent prorated or not due at all. Again look at his AL contract for termination of lease.
$ 7,500 a mo for Level 1 Assisted Living is definitely high side. My goodness what does this place charge for Level 3 AL???
What do NH charge for private pay in your area? $15K? More??
$7500 is what folks - where I am - private pay for NH out in a smaller town (& the kids do this rather than pay 12K for Uptown New Orleans facility, it $7500 a mo 45 minutes down the road in another parish for MeeMaws NH). I don’t know how well set your dad is financially. But you or your deals w/house stuff Sister might want to do some projections as to how long his $ will hold out. Average NH stay is 2.5 years. You don’t want to have to move him yet again a year or 2 from now to a less expensive place IF you can help it. They can & do outlive their $. My mom did & she was backside of her 90’s when she hit “impoverishment”. It can be a beyond difficult convo to have with a parent about this at best and it only gets way more challenging if they have earlier stage dementia, infirmities and are a narcissist. Wishing you well on getting through this week.
Conside that you will have the benefit of the discharge planners (we were blessed with good ones) who will advise you on what the next placement needs to look like.
Start looking at Rehab places, you may need to make a choice on short notice.
Good luck.
Move across the country is in & of itself major adjustment. As someone pointed out, time change combined with weather / environment change is huge for anyone. There been major downsizing from big house to a sm apt, so even more confusing. For your dad, the move is even more pronounced as he has all this PLUS his entire being as Mr Kablooie who was a very important person in state government means nothing in Seattle. He was still in his old home where he knew where everything was & ostensibly could do things around the house (lol), and had a RN caregiver who knew who he was back in the day and he lived in the neighborhood he had been in forever with your mom who was well liked. He was known & respected & catered to and for a narcissist this is beyond important. For your dad, all that is gone. His Library of Congress remark, omfg, I know someone almost that level of narcissist, you have my empathy.
So he has Parkinson's, dementia, no vision in 1 eye and low in the other so cannot really read, pretty well deaf and has issues wearing hearing aids (this is concerning as he has to be able to do or recognize what to do on a fire drill), advanced prostate cancer. And now Covid! He cannot on his own do meds so has a $500 a mo added medication management fee added to his $ 7,000 a month AL. $7500 a mo AL.
Putting aside having Covid, I’d be concerned that he’s really not right for AL. His care needs really needs more 24/7 oversight and that’s a NH not AL. There could be some resident remorse on the part of the AL and they would really like it if he was to go into a higher level of care and the admins probably have been mulling this over. Then Covid hit and Covid is an excuse to have this happen & why they are pressing you to come and take him. Ask your siblings if they have felt a vibe that Dad is just not fitting in, that staff has mentioned things he is not doing. If they were to send him off to the ER, it could be a way to get him placed into a NH. I’m sure you really are not up for having to research, visit, look all over again. Could be a win-win. But you & your siblings have to stand together that none of y’all will come & get him. Your immunodeficiency, it’s a nonstarter as an option plus it should be an unsafe discharge as no oversight as you work. Make that your mantra 🕉 & make sure the siblings do the same.
Also dad still has his old house, right? Are all siblings 100% ok on this or are they ok as long as it never effects their time or wallet?? Will it’s rental cover all its costs and provide for an emergency fund? Is the sibling that’s dealing with the house live locally & able to realistically do whatever needed on anything house & from your dads $? Keeping a house once they go into a facility can be done but may be challenging.
I’d be concerned if there are in-laws who hate the idea (or hate your dad) as they can make sure their spouse doesn’t do a thing of pay a penny yet if all the siblings are equal beneficiaries for how the revocable trust is set up, they get their share no matter what. You know your family best & if stuff like this is likely. Good luck.
Given how sick he sounded the last time any of us talked to him on the phone (before it was knocked off hook), we were quite worried about the course of his illness, after finding out from the ALF earlier in the day that COVID had broken out after 2 years of no cases. We finally got through to his primary care doc, who sent a medical transport, since the resident nurse director had his hands full and was dithering about calling the paramedics. I don't think he or staff knew how sick my dad was until the afternoon his doc sent for him, which bothers me. Short version, dad was admitted to the hospital yesterday afternoon with covid and acute encepholopathy, which explains his delerium and confusion. He thinks he was "abducted" to a "state hospital" by police-like paramedics, which I'm sure it must have felt like since he was awakened from sleep and immediately whisked away on a gurney, apparently without time for Dad to get his bearings. He's definitely still confused this afternoon, is talking about what happened in terms of consipiracies and such. Doesn't believe the letter I put in his goodie bag and gave to the nurse was written by me. He's not sure which coast he's on, which city. He seems stabilized with the covid, thank goodness it wasn't severe since he had some kind of anti-viral the minute he got there. No UTI. But the big concern for me is that his encepholopathy will linger, or perhaps be permanent - which happens often with older covid patients. If he's that loopy when he comes out it's going to be a lot harder to deal with him.
Unfortunately nobody is allowed to visit, due to state/county and hospital covid protocols. These seem archaic by now, even here in Seattle in a nice world-reknowned, high tech hospital. So we can only talk on the phone for now.
As againx100 says above, he may well need a higher level of care once he comes out of the hospital if things don't improve enough, which we can ask the ALF to do... all we have to do is pay through the nose. But I'm gathering they are having staffing shortages like everyone else, so maybe eventually he gets moved elsewhere...
(I won't go more into the house situation since that was from an older post that has since been resolved.)
Love of heaven, why haven't they got a protocol for this by now? When you say it's a hands off AL, wow, you meant it.
Maybe once you figure this out, you may want to move dad to a more 'hands on' AL. He is not going to get better with Parkinson's and maybe this is somewhat of a wake up call. He probably needs a higher level of care.
At this exact moment, I do not know what I'd do. I don't know if a hospital would accept him with covid as long as he is not sick enough to meet the criteria.
I was just reading also that COVID can cause permanent brain changes in the very old who also have cognitive issues... keep your fingers crossed.
How are you aware of all this? If this is all verbal, tell whomever at the AL you need all this info and details in writing, like email or snail mail.
Look at his AL contract, especially as to what this place is supposed to be providing….. that he is paying for & has gotten in the past (pattern of & continuity in an agreement). It is on the AL to provide for whatever as per the contract and on them to provide for whatever changes needed at their expense. Like if there was a fire in the kitchen, its on the AL to find a way to do the agreed to as per the contract food service. If the van for weekly shopping trip went out of service, the AL has to find a substitute. If a resident has an incident, like gets pneumonia or Covid, they have to have a plan as to how to deal with it within the facility.
imo they are shifting this onto you cause they do not have the staffing and do not want to spend the time or $ to do what is needed. They need to have an overall plan for dealing with Covid + cases and provide it to him and all other residents. They know that they have got you all worked up & in panic mode & will take the o key off their back. Don’t let them do this! They have a responsibility and a contract to adhere to.
So if you did not go & get him, what would they do?
They cannot discharged him to a homeless shelter as he’s Covid + plus he’s current on his payment, so cannot use that excuse. The worst they could do would be to call EMS to have EMS take him to the ER. Then when the ER or hospital discharge planner calls the old AL, the AL tells them they cannot take dad back.
Should this happen, you make this work to your dads advantage, like the discharge planner will have to find dad a bed in another facility and it will likely be a NH that has a program for dealing with Parkinson’s. He’ll get better care in a NH. And by refusing to take him back they broke the contract, so you get an attorney to write them a letter for compensation.
Out of curiosity, is this AL part of a chain that starts with a “B”?
The delusions could be from an Urinary Tract Infection [UTI], he needs to be tested.
Have you spoken to the Assisted Living facility? Or are you getting your information from your Dad?
Hope everything works out for the best.
I know UTI is a common cause of dementia but I'm fairly sure, after reading about it last night, that studies are showing that COVID can change the brain of elderly folks with cognitive issues and worsen delusions and other things. Often, it is permanent. As I said to drained above, let's hope it's not... :-(
I would ask where he contracted it, because if it was in the AL, well, he shouldn't be quarantined, IMO.