10-12-2021 Touring new nursing facilities, so far no good

(Tricia)

Now that we have moved to a private pay situation for Linda, her room has become much, much quieter. Although we were told by the facility's case manager that Linda would still receive three sessions of week of "restorative therapy" (therapy meant to help her maintain her current abilities), she has, as far as we know, received no therapy at all for the past week. I now have a message to the case manager to ask how the restorative therapy will work and how much skilled therapy, if we wished to add that service on, will cost. It is exhausting to try to keep up with it all.

At the same time, we have toured two other facilities to see if we might find more consistent care elsewhere. So far, though, we have not been reassured. We toured one facility, The Boulevard in St. Charles, and it was beautiful. The rooms and facilities seemed luxurious, almost like they would be at a nice hotel or resort, compared to NHC St. Charles' more clinical, hospital-like environment. And the second, The Villages at St. Peters, seemed very homey and comfortable as well. Both offered larger, airier rooms and private full bathrooms, which would be wonderful, because Linda's room is now cramped and confining, and she has access only to half bath that she must share with her next-door neighbor.

But, unfortunately, the man giving us the tour at The Boulevard could not assure us that they could keep Linda's meals diabetes-friendly, especially given the fact that her sugar levels swing so wildly and she currently does not have the capacity to make good food choices. The woman who gave us a tour of The Villages outright said that they don't do special diets. 

But there must be some facility that will help maintain consistent healthy meals for residents who cannot maintain them on their own! For us, a facility that will provide carb-consistent and healthy meals, along with easy access to therapies, is paramount. Over the past two weeks, Linda's sugar levels have been swinging almost daily to 45 to 65 in the morning to 400+ or even 500+ in the evening, and the staff at NHC can't figure out why.

Additionally, while the man at The Boulevard gave us a base price, he said that additional charges would be added "depending on the level of care required." When we asked him how high those charges might go, he couldn't give us a ceiling. So, basically, we would be receiving a bill for an unknown amount each month. We're OK with the possibility of different "pricing tiers" for different levels of care, but leaving it open-ended? No. Just no.

To set up both of these tours, we worked with a representative of A Place for Mom. But that rep, Deborah, is now dismissing our concerns. She responded to our feedback on the first two facility tours by saying that diabetics can choose to eat perfectly healthy in assisted living so that we do not need to worry, ignoring the fact that Linda is now not capable of choosing her own food wisely.  Deborah now has tried twice to talk us into moving Linda to The Boulevard, even after we told her we were uncomfortable with the "blank check" approach to pricing and were no longer considering it. So, we are about done with A Place for Mom, as it seems likely that Deborah is pushing the Boulevard on us for reasons unrelated to Linda's needs.

We just want to find a facility that will take Linda's full needs into account and design a care plan for her. What we're finding is that these facilities will say they do that one moment, and then tell you everything you're responsible for setting up and paying for on your own the next. I have heard how difficult it is for families who have loved ones with special needs to find help, but now we are seeing that for ourselves.

That seems to represent American healthcare system at its finest. If someone has needs outside of a certain, stereotypical framework (such as "memory care" or "injury recovery"), the system becomes much, much less navigable. Our doctors and hospitals are great at fixing a broken leg, removing a ruptured appendix, or even treating cancer--and, don't get me wrong, we are grateful for the medical professionals who literally saved Linda's life. But once the crisis has passed and patients need ongoing care for atypical conditions, they are often very much on their own.

Meanwhile, over the last week, we have been continuing to visit Linda nightly. Her condition and mental clarity have continued to improve, now that her gastrointestinal issues have stabilized a bit and she has completed her round of antibiotics. But her muscles are still weak, and that situation is unlikely to change if she continues to receive no therapy at all. I hope to change that as quickly as possible. 

A few nights ago, she was in her full sense of humor. She was cracking jokes with us, and laughing, and commenting about whatever television show we were watching. We actually had a good time! She also recently received a humorous book from our cousin filled with quips from the cartoon character Maxine (thank you, Bernie!), which she read on her own--she even read aloud to us the pages she found the funniest. 

But last night was a completely different story, as her mood had shifted decidedly downward. She was especially inconsolable about the fact that she could not get up and walk on her own. Just as before, as she becomes more aware of her situation, her sadness over it increases. 

At one point, I tried to tell her that she had some control, because she could do therapy to help herself recover from her brain injury, and she responded "I don't WANT this! I don't WANT to have a brain injury anymore!" It was as if she was trying to change her situation through a force of will--which, of course, will not help matters at all. I only wish she would apply the force of her will toward the work that actually will help her get stronger.

We do know that we need to get her as much help as possible, so we will continue to tour facilities and reach out to people for recommendations. Tomorrow afternoon, we will be taking Linda to a doctor's appointment--her first trip out of the nursing home since she arrived there in late July. The appointment is with my own endocrinologist, who agreed to work her in as a new patient, and we are extremely grateful for that! I am hoping that the endocrinologist will have some insights on how we might better keep Linda's blood sugar stable, and maybe even know of facilities that could help us manage it reliably. 

We hope that we will find someone who can offer Linda a care plan that is better suited to her needs and fully directed to the goal of helping her continue to recover. The insurance company, and even her current nursing facility, might have given up on her. But we most certainly have not.