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My uncle has been in AL for about two years. He originally went in with mobility issues (wheelchair bound.) During the last year he has started some mild cognitive decline. He is being more forgetful and is getting angry at the staff for small and unimportant issues.


Ever since this happened, our dealing with management have really changed. The meetings and phone calls have become tense and unpleasant. Even though my uncle is paying privately out of his own savings (almost $90K/year), it seems that the customer is always right maxim has been reversed. Now, it seems like the AL management views it as they are doing us a favor by allowing my uncle to stay there. Phone calls from them are now usually about something he did that was problematic and will necessitate an increase in care costs. For example, he didn't listen to instructions when transferring from his wheelchair to bed and almost fell on the floor. He used a profanity and yelled at the staff when he wasn't happy about something.


When a patient reaches this point, does the family and patient enter a very weak bargaining position? From talking to the management, it almost seems like they would not care if he left and went somewhere else. The problem is, that once he is listed as having cognitive and behavioral issues, the range of places he can go is restricted and the costs increase. I am wondering if the highest quality AL homes are the most likely to deny difficult patients?


Are patients just basically screwed when this situation occurs? Basically, do we have to just accept whatever care costs increases they demand and hope they don't tell us he has to leave?

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An Assisted Living is, basically, as my bro assured me "corporate" and a "business". Yes, they decide the level of care needed. The more time they need due to physical or mental or medication or mobility or assisting changing, dressing, addressing outbursts then the more costly he is for the Assisted Living to deal with. You ask "Are the patients basically screwed". That is one way to look at it. The other way is that your elder now requires more care.
And yes, you will quickly come to the point in any adversarial situation where they will say to you "We feel that perhaps you and your uncle would be happier at another facility." This of course, realistically, is saying "We are pretty ready for you to move on. Too much trouble and too much work and Uncle is no longer worth it to us".
It was explained to us when my bro signed all the papers at his facility, and copies were given to him and to me, just what needs fell into what levels of care, what the costs were, what the circumstances were that you would be asked to leave, what the average rental increases and care cost increases were yearly. It is a relief when it is this clearly understood in the beginning.
I am so sorry. But this is the reality. Assisted Livings are not regulated in the way nursing homes are. Basically when you are out of money they are over you. And yet many who work in many facilities do this as a vocation and an avocation, and are very dedicated. My advice is to form the very best relationship you are able with the very best facility you can, and to understand that old age comes down to our throwing ourselves upon the kindness of strangers, all too often. It's very hard. For family and for residents, and quite honestly for caregivers as well.
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When it becomes a problem for staff or a danger to staff there might be some tension with phone calls to family. Most if not all ALF can not use "equipment" to transfer a resident if they can not or will not cooperate with the transfer. Some may even consider a "2 person" transfer beyond what they should be doing.
Is he currently on anti anxiety medication? That might help.
It might be time to look into transferring your Uncle to a Memory Care Facility or if the ALF where he is has a MC that might be a good solution.
It is possible that the Director does not want to have this discussion with you as many are resistant to the idea of MC.
Not to mention this is not a good time to look for another facility or possibly even transfer within a facility. There is a good possibility that they will have him quarantine for 14 days prior to joining the rest of the residents in MC and that 14 days can be frightening, confusing along with the transfer to another place. During that 14 days he may decline more.
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Helperson132 Aug 2020
They actually told me that he is not a patient that needs memory care and is a ways from that. That's good because his AL has a separate MC unit and he has seen those patients. Seeing how diminished mentally they are was disturbing to him. I really don't think he would accept being put in MC voluntarily. He wouldn't have to seriously decline further to the point where he would no longer know the difference.
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Tell them that to be fair they should allow you inside to talk with him. During the lockdown, the facility could be saying anything they want.
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No facility wants a resident who gets aggressive. Which his Dementia maybe causing. Could be he realizes something is happening to himself and is taking it out on staff. And if suffering from Dementia, of course he cannot follow instructions. Early on reasoning and being able to process what is being said is effected. The staff should be trained to handle Dementia patients. Him being isolated does not help.

I would approach it as you understand the problem. Is there a way that his or their doctor can prescribe something to settle him down. You understand theirs but they need to understand his. He is isolated and scared, especially if in early stage of a Dementia. With the virus there is not much you can do. I mean really, I bet he is not the only one they are having problems with. You can't isolate people and expect them not to take it out on staff. The fall they needed to call you about. State regulations. The cussing, OMG you should have heard one of the residents in Moms LTC. Cussing like a sailor to the aide. I walked by and she said "love the blue top you have on" I said "thank you". She then went back to cussing out the aide. Really, a CNA or Nurse has not heard this language before?

They need to handle things. Thats what they are trained to do. That is what Dad pays the big bucks for. I don't think during the pandemic they can kick him out.
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For that much money maybe you can find a nicer place that is more pleasant toward customers.
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Hi Helperson132, have you or other family been able to video chat with him during the lockdown?

The isolation from family is causing a lot of problems for residents. For example, my mom thinks she did something wrong and has been locked in & rejected by her family as a result of whatever it is she can't remember she did wrong. We can't talk her out of this mental loop she's in.

Video chats are not a true solution but it might help if someone can call you on the chat when behaviors happen so he can be helped by someone he recognizes and loves.

For my mom, I try to partner with the staff on this sort of thing. It took a month or two to establish the communication consistently, but now they reach out on FaceTime when I might be able to help. Just a thought. I hope you're able to find a way!

PS - there are a lot of loved ones (and advocate organizations) uniting over the visitation issue. These groups have been changing state directives to allow for 1 designated "essential family caregiver" inside to support them while following the same safety protocols as staff. Minnesota, Indiana, New Hampshire and now Florida are some of the states with this in place to mitigate the risks of isolation. More states are looking at following their lead.
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$90K for Assisted Living? That seems awfully high. My mother had skilled nursing for considerably less than that, but I know the prices are very high in some areas (as BarbBrooklyn can attest).
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Helperson132 Aug 2020
I know that seems high, but it in our area, that actually not super high. That sorts of mid-range. The really nice AL places start at $10000/month. So, we are in the NE close to a high cost of living city (not NYC though) Real estate and labor prices vary so much in this country that you can really only evaluate these issues on a basis relative to the average in your area.

There are nice places that are a little out of the way in our area, like maybe 30 minute drive for us that are somewhat cheaper ($6500/month) that I've been trying to convince my LO to consider. But, he gets nervous being really any distance from family, so it's a tricky situation to deal with.
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Whew, that is one expensive home! My dad was a very difficult patient and staff I am sure was aggravated with him. I had to private pay a sitter while he was in rehab every evening! He was non compliant and kept trying to get out of bed when he was non weight bearing. Dementia did not help. He ended up trying some anxiety meds which helped a lot. Can you speak with his doctor about something to help? It's hard to take care of a patient like this especially with aggression.
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Isnt it funny how staff/management act like this is the first and only resident to have these issues. Then go to family and put more stress on the situation. Why not say we think its time he see a doctor to change his meds. He might be more comfortable with anti anxiety meds that would quiet his combative moods? Maybe they think family will balk at adjusting meds, so they put pressure on the family like its their fault.
This isnt their first rodeo!
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"Small"? Behavioral issues? Small becomes urgent for no apparent reason, maybe a UTI or even "eggs are not scrambled the way I like them"! Anything can set them off, they did my mom.

You need a plan n place should there be an eviction. They will happen during covid because facilities need to keep everyone safe, staff, residents alike. My mom was one of these and was kicked out. She was on hospice at the time. Hospice recommended a care home where all residents had been kicked out of their previous facilities.

This home would have been better for mom from the beginning. There was a better staffing ratio, the care was better and it was even cheaper.
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Helperson132 Aug 2020
I hope it doesn't come to a forced eviction. What kind of issues would be cause for an eviction? Would he have to become physically violent with the staff?
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Please get your LO a doctor's appointment to make sure that the behavioral issues are dementia and not something reversible. Blood chemistry imbalances, infections and pain that keeps people from sleeping well can also cause "problem behaviors". If it is dementia, usually feelings of frustration and lack of control can cause surly attitudes. This can be addressed with "appropriate choices" (instituted by attentive staff) and calming medications (prescribed by the doctor). Please check into memory care facilities and options since cognitive problems usually get to a point that assisted living is not the best option.
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shad250 Aug 2020
In other words, drug until almost catatonic?
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No, you're not 'screwed' but you do need to recognize that they have to be able to provide care for him. If it will take two people to move him because he won't assist, that will take more staff time and his level of care charge will go up.

As for abusing the staff, unless he gets physical, their tolerance for his behaviors is really up to them.

To answer your question, it's been my experience that it doesn't matter how 'high quality' or fancy an AL is. It's more about whether or not they can manage care without endangering the resident, other residents, and staff.

Keep in mind, that behavior management is a legitimate reason that people need to move to SNFs when they cannot be managed in an AL.

Is there a geri psych eval center in the area? They can often work wonders when people go in for a 'tune up.' Or, at least do a psych consult.
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Imho, you could try to find the source of the aggression. Good luck and prayers sent.
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Find a place you are comfortable with after researching reviews. Nobody needs all these issues when there is enough stress going on already.
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