It's a cute title, but the situation has been far from cute. The first fall, which was about the time of Halloween, or thereabouts, was the worst; Betty had to be taken to the hospital next door to Evergreen Livingston where she lives to receive a couple stitches on her head. After that, she had four more falls during the month of November. The last fall was different from the first four in that she fell out of bed while sleeping. All the other falls were while she was in a wheelchair.
Previously they had a seat belt on her wheelchair that prevented her from falling out of the wheelchair. They took the seat belt off because she couldn't demonstrate that she could take it off. Then she started falling. There could be a couple reasons why she might not be able to show that she can take a seat belt off. At this point in the progression of Alzheimer's Disease, she might not understand what we are directing. Also, she might not be capable of taking the seat belt off.
Rocky Mountain Hospice called me on November 25 to discuss Betty's scenario. They were extremely concerned about Betty's falling since Evergreen wasn't working to resolve the matter. Evergreen has a "no restraint" policy that they were enforcing. As well, they were concerned about Betty's eating habits since she was aspirating when she was eating. They wanted to stop what they thought were double portions to stop the discomfort from aspirating most of all, but also prevent injury and illness that would eventually result from aspirating. We understand that Betty will forget how to swallow because of Alzheimer's Disease, and that seems to be happening now.
After speaking with me, Rocky Mountain Hospice tried to arrange a special care conference for Betty between all of us because of these main issues. That was a little confusing because I didn't realize that Hospice was doing this, but we did need to discuss these issues or else put Betty in a facility that was going to take care of her properly. We did finally get it all straightened out though.
Jean and I met with Evergreen Livingston, a social worker, and Rocky Mountain Hospice December 1. The lady who represented Evergreen seemed defensive and took the company line. Hospice took a stance advocating Betty's comfort, which is what Jean and I are mainly concerned with. The social worker acted more as an arbitrator. We discussed the easy stuff first and discussed the falling last. For the most part, Evergreen and Hospice went back and forth, and Jean and I typically listened and interjected only occasionally.
The first issue was about Betty's skin-picking. Jean and I are convinced that at least part of this is connected to obsessive-compulsive disorder, which our family tends to have. As well, with the cuts and bruises that Betty has recently gotten from falling, it's likely that they itch. Everyone at the table was talking about options to dope her up for this discomfort--the possibility, which drug, etc. I really couldn't believe what I was hearing. I asked why they just couldn't put some hydrocortisone where she was scratching. Hospice was happier with that idea, but I didn't understand why they didn't just think of this. Evergreen didn't want to do this to a scabbed place on Betty's eyelid, but they could easily do this everywhere else.
That scab on Betty's eyelid is fairly recent. Although we have not done a biopsy to know for sure, and at this point we wouldn't do anything greater than comfort treatment for it anyway, it is thought that it could be cancerous.
From this meeting we were able to ascertain more information. Since June, Betty has been on large (not double) portions because, according to Evergreen, they weren't sure if she was getting filled when she was eating. I don't know if that's true or not, but it was clear that it was the company line. In November a reminder went to the cafeteria about giving large portions, which seems to have irritated Hospice because of Betty's aspirating. Hospice also believed that they were giving her large portions to keep Betty from losing weight. From Hospice's point of view, it is more difficult to explain to the State of Montana why Betty should remain in Hospice when her weight was remaining the same, since that's one of the easiest measures of determining her qualification.
Me, I can see that as Betty has gotten older, she would suddenly decline and then plateau. She has been on a plateau for several months now, but these falls have precipitated another sudden declination. Her condition needs more attention than Evergreen can give by itself. (Some of that is Evergreen's fault, but I'll explain that later.) I think her weight is irrelevant to the issue, and think that whatever the reasons were behind the large portion order back in June, they don't apply now. I was glad that Hospice offered some transparency to their reasons.
Although Hospice doesn't continue to feed Betty when she starts aspirating, Evergreen agreed to stop the large portions and also stop feeding Betty when she starts aspirating. This seemed to be a "no-brainer" for everyone at the table. Pneumonia and choking are things that we'd like to avoid! However, the fact that we needed to have a meeting to actually discuss something that everyone already knew was a problem and knew how to fix seemed to be more of a prelude to the larger issue--something to talk about before getting down to business, so to speak.
The lady representing Evergreen's interests explained that Betty has been falling asleep more regularly, and this was the main reason that Betty was falling out of her wheelchair. Hospice didn't dispute this, and it was recommended by the social worker that Betty get naps after meals. There are two other issues, though: if she is falling asleep in her wheelchair, someone needs to take her to her room. Jean and I commented that when we arrived at Evergreen, she was asleep in her wheelchair in the big room where the TV was. (When we left the meeting, apparently she was still in that room and hadn't been taken back to her own room to sleep. Where is the person monitoring the people in that room?)
The other issue was about restraint. Evergreen had been modifying the wheelchair so that Betty leaned back more in the seat to prevent her falling out. I asked why they can't put a seat belt on, and of course, Evergreen took their "no restraint" policy and then spouted that they were committed to the health and safety of their residents. I got mad at that--"How is five falls in one month safe!?" She didn't want to believe that there were that many, but she looked it up and told us with a surprised look on her face that it was five. Hospice told me later that they had told her that Betty had fallen that many times, but she wouldn't believe Hospice. She continued on about their policy of no restraint, and even the social worker explained about the liability issues with restraint. In this case, those issues are moot because Betty's simply existing. She's not able to express what she wants and what she doesn't want. We can't be concerned about if she wants to stand up if she can't express that. We know it hurts to fall out of a wheelchair, and we're pretty certain that she registers the pain.
Then I nailed Evergreen. When Grandma and I put Betty into Evergreen, it was because she had hit herself in the head with a piece of metal. She was also violent to Grandma. I told Grandma that we could no longer provide the kind of care that Betty needed. Betty's doctor prescribed and Evergreen administered an anti-psychotic, also known as a chemical restraint. Evergreen's no-restraint policy was inconsistent with what they practiced. Plus, a seat belt is far less restrictive than an anti-psychic, but they're not willing to consider the seat belt. In reply, Evergreen didn't even re-define "no restraint." She sarcastically and defiantly suggested that maybe they should use a kind of chest strap. By the way, in Betty's case, that would be a huge red light because of the choking hazard when she falls asleep.
The social worker made a decision and told Evergreen that if the steps that we had already discussed don't work, then they are to use the seat belt again. Hospice wanted the social worker to define how it will be determined that these steps don't work. Basically Betty has to either fall, or it has to be obvious that she will fall in her condition.
We didn't get to discuss this, but Evergreen is understaffed. This solution that the social worker made basically means in-real-life that Betty has to fall before a seat belt is added. That's unfortunate, but at least he forged a compromise. I don't think Evergreen liked the fact that they were being told that they may have to use a seat belt. But with Evergreen understaffed, I don't think they're going to be able to monitor Betty the way that their policy says they're supposed to. I don't believe that Evergreen is able to come through with their promises. We shall see.
While we were at Evergreen, Jean and I visited with Grandma for a little bit. Jean's birthday was on December 2, so Grandma basically got to see Jean for her birthday. It was getting closer to lunch time, so after our visit, Grandma and Betty were wheeled to the cafeteria.
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