The Lie

I have learned a lot about assisted living and caring for the elderly over the past few years. Now that my mom is at the end of her life and is living with Alzheimers, my brother and I are very involved, some might say over involved, in her care. She is lucky enough to live in what we think is the best of the best assisted living communities in our area, and we are very grateful to have her there. Regardless of what I am about to say, we maintain that she is in the best of the best facility in our area. That said, once you get in the world of elderly care facilities, you then suddenly are surrounded by people who are all in the same boat as you. You become an expert in elderly health care issues, facilities, the breakdown of the aging body, and all kinds of issues about which you previously had no knowledge or interest. In these past few years, we notice that there is a trend in assisted living facilities where there is a gap between what they say they provide and what they actually provide. At first, I thought it was specific to the assisted living communities that we have dealt with directly, but having spoken to many families on this issue, I now know it is the general experience of many, not just my brother and me. 

As I track it, assisted living facilities, in general, promise a whole bunch of services that they are not going to fully deliver.  They will have a good reason not to deliver the service, and that good reason will keep the not-delivered-service on their menu of services provided. The main way they accomplish this is they make ambivalent promises, some might even call them lies, which, when challenged, will be presented as an innocent loop-hole to the promise. They then expect we, the people paying almost $10,000/month, to understand why the promised service was not provided. For instance, they have the “legally required ratio of staff to resident” on at all times. I have been told that the place where my mom is has three staff members during the day and evening hours. What that may mean, however, is that they can have 20 residents, all in different stages of decompensating physical and mental health, in one room, with one staff member, while the other two staff members, who are there, are not with the 20 residents. The other two of the three required staff are taking care of one or two more critical residents. If there is an issue in the room with the 20 residents, then the one staff member can call for help. Caveat – can call for help, not will get help. I have seen this situation get really out of control, dangerously out of control, more than a couple of times. Each time it has happened, I have reported it and have been assured that they will handle it. When pressed about handling it, they say it is a “staff training issue,” which they are addressing in a meeting and the situation will be “taken care of.” And, yet, I see the same thing over and over again. 

The last time there was an incident that looked pretty dangerous to me, I was so frustrated that when I spoke to the staff about it, they accused me of “screaming at the top of my lungs” and “demoralizing the entire staff” in the process. One of the managers who I allegedly screamed at, was in tears and couldn’t do her job. When I asked why neither of the people at whom I was allegedly “screaming” asked me to lower my voice, one said that she felt it would make things worse, and the other didn’t say anything out of respect. These are two people in management positions, people with whom I have had many conversations about these very concerns over and over again, people who I speak to all the time, who I have supported publicly and privately, who I talk and laugh with pretty frequently, but, suddenly, they didn’t think they could say something to me when they felt like I was “screaming” at them. 

As the kids say, I call bullshit. What I really think is that they got caught with their metaphoric pants down. They all knew that I had had these concerns in the past, that I had voiced them in the past, and that they had told me that they had “handled the issue” in the past and, truth be told, they had changed nothing that was evident to the observer. They get two points from me for their next strategic move. THEY escalated. There was a meeting called, three administrators spoke to my brother and me, and the experience was the equivalent of being back in high school being threatened by the mean girls who had all the power. There was the veiled threat that we could move mom if we were not happy, otherwise, they wanted assurances that I will not “scream” again. I reiterated that I was not screaming, but I said I would not voice my frustration again. I also said that my brother and I get a lot of mixed messages from them, but that didn’t get addressed in the conversation. My concerns also didn’t get addressed, in fact, they got completely dismissed as not being of imminent danger to MY mother, and therefore the concern was none of my business. They have the required ratio of staff to resident there and if we were not happy we could move mom.

That’s when I got it. That was when I figured out that the game was to shut me up because, with me silenced, the lie can continue. It was both painful and relieving to get to the truth.  Between my brother and me, we are in and out of there five times a week at a minimum. We are there at all hours of the day, we interact with the staff, we speak frequently with the hospice providers, the nursing staff, the paraprofessionals and so forth. We are constantly being updated about Mom’s care, her needs, her health, her experience there. I would venture that, with the exception of one other resident, we are the most involved family they have. We very rarely see other residents’ families visiting, which might mean that they visit, say, one time a week, and they don’t actually witness what we witness. If you visit with your loved one once a week, you really could miss what may be going on there. But us? We’re there all the time. And we are talking to staff all the time. And when you talk to staff all the time, you hear the frustrations and the complaints that don’t get to the administration. When you talk to the staff all the time, they tell you that it doesn’t matter what they say, the administration doesn’t care. When you are there all the time, you know that the repeated calls for help that don’t get answered happen all the time, not just the occasional time. And, once you talk to the administration enough times, you begin to track that the we-are-handling-it and the we-will-hire-more-help lines are part of the lie. Not to say that they are not doing something, but the that they are not actually addressing the issue in any way that is evident from where I sit. For instance, on August 14thI had a conversation with an administrator where I was told they are hiring additional staff. It was said as though they are hiring as soon as possible, but what they mean is that they are hiring, if and when needed, eventually, regardless of my concerns. It’s the assisted living version of “thanks for sharing.” So, message issued, message received.  The Triumphant called us together, issued the veiled threat that they could kick our mother out of there at any time, and we got the message.  

This is my experience in the best facility that I have ever seen. The staff there are warm and nurturing. It is clean and they provide great care for the residents in general, my mom specifically. And I am not even arguing that they are not doing the best job that can be done, but I am saying that they lie about what they provide. I have watched the programs that are supposed to be daily programs, not happen at all. I have been told they are hiring critically needed staff to replace staff who are no longer in those roles, but no replacement is there. I have had skilled care and paraprofessionals tell me one version of why something isn’t happening, just to have the administrative staff say different version. I have watched staff call and call and call for help with no response because people were busy with other emergencies. I have watched a resident threaten to attack a worker while that resident’s own aid was paged over and over again for the better part of a half hour. No response. And, don’t misunderstand me, I am not saying the worker being paged was not responding without good cause. I am sure the lack of response was because of a prior emergency, but it leaves the lie hanging in the air for me. Luckily, it isn’t an issue though, because it doesn’t affect my mother, therefore it is not my business, and they have the required ratio of staff.

I am not sure what I would like to see happen to solve this issue. It makes sense to me that a facility providing this kind of service would be, let’s call it, secretive, about the inner workings of their facility. In many, many ways, people who work in health care facilities have one of the most unenviable jobs in America. They are providing the best care they can for one of the most vulnerable populations. They have staffing and training issues. There is no doubt they cannot pay what they really should pay to hire people who will manage and care for the elderly – none of us could pay what should be paid for that job, and most of us couldn’t even do the job, no matter what the pay. Even in families where there is money to spend, there are issues with spending large sums of money each month. It’s a unchoreographed dance between wanting to spend the money on excellent care for your loved one, and the fear of the money running out and having your loved one in an even more compromised position.  People running and managing these facilities have all these issues to handle and that doesn’t even include the issues of dignity, death, and dying.  It also doesn’t include issues of accreditation, licensing, insurance, and compliance. It makes sense to me that they would tell families whatever they have to say in order to preserve the lie.  They do it because they have to keep the lie alive in order to survive each day. They do it so that they can provide the best care they can and the lie helps them do that. They do it because it is not their mother, it is their business and, after all, they have the required ratio of staff.