The care meeting took place last Friday, November 4. Apparently there is supposed to be one every 3 months and is a bit pro forma. The social worker, the activities director, and the head of nursing attended. We met in the second floor lounge, which used to have a nice table in it and table and chairs, as well as a loveseat and a tv. My brother and I sat in the loveseat because the rest of the furniture is missing. When the other 3 came in I asked what had happened to the furniture. One person replied that they needed the chairs for the big activity room. Someone else replied that the storage room was next door, they had removed the furniture to bring in storage, and never replaced it. Somehow this all didn't surprise me, as most of the time, there seems to be no one in charge of the floor or the whole facility for that matter.
The three of them didn't have much to say, so I brought in my list. I think I handled it pretty well and didn't get them angry. The first item on my list was the fact that it was me that discovered that my brother had put on 15 obs in three weeks and insisted that he get medical attention. The head nurse told me that they are now weighing him weekly. I told her that if they didn't step up to the plate on these kind of things, it made me feel that I could never go on vacation, that I needed to check up on him more than once a week to make sure that his heart was acting up. They nodded. I then told them I would like a diagnosis for his persistent cough. They told me that they were waiting for his labs to get back, but were referring him to a speech therapist. I was kind of surprised at that and asked why. The nurse told me that the speech therapist would look to see if it was a swallowing problem. I then mentioned that he seemed to be walking pretty well but was having more difficulty getting out of his chair, was there any way for him to get some exercise for that (they will check into it.) I brought up that his Lasex had been increased, which meant more frequent and heavier urination, and asked that his diaper be changed more frequently, since the last time I saw him he was soaking wet. I mentioned that his insurance was going to run out in January, and they told me when the time comes to tell the billings person. I also told them I was still getting mail at my old house and the social worker said she would make out some kind of form (again) for new addresses. I mentioned that his physical care seemed to be slipping, he is not getting shaved as often as he is supposed to, and his hearing aid is not getting cleaned. (I reminded them that by not cleaning it, they caused a $400 repair that Manor paid half of). They all agreed to fix these problems.
Then my brother piped up and asked if it was his turn. He said that he really liked the staff at the home, and he was happy to live there. And then he said, get this, I am paraphrasing:"I don't ask for much, but my main goal I want to discuss with you is managing my medical condition, I want to live as long as possible, that's all I ask". I was astounded, it was very moving the way he said it. And then he proceeded to tell them that he didn't want pork or milk. I asked him why he didn't want pork and he said it's because he's Jewish. I remarked this had never stopped him before! I also asked him what the problem was with the milk and he said he didn't like the way it tasted. Fair enough. We were able to persuade him to eat cottage cheese instead. Lastly, he asked them why he was being woken up at 5:30 every morning to get dressed. They asked him when he wanted to wake up and he said some time between 7 and 7:30. They said that was during a shift change and he might not get woken up exactly at 7, he might have to wait a bit and he was ok with that.
Right before I left, they thanked me for coming and said that it was good, most of the relatives don't come and let them know what's going on! It really does make me shudder about how most of the rest of the patients can be treated if they don't have advocates to speak up for them. I made a little speech about how I knew it was hard to run a big institution like that with not enough staff or funds, and hoped that they would tolerate me if I got frustrated some times. It was all very friendly.
Saturday, as I was driving my daughter to take her SAT test, I got this phone call from the nursing home at 7:45 am. Nobody from there calls that early unless there is a problem. But it turns out the good nurse, who has been relegated to the weekends, and on a different floor, but who has taken an interest in him, noticed that his test results came back (she said at 1:30 am). The results showed that he was suffering from mild congestive heart failure (no news to me) and still had fluid in his right lung, so his lasex was increasing for 7 days, she wanted me to know. After I hung up, I called back to let her know that his blood pressure really needs to be checked because he is prone to rapid blood pressure decline under these conditions. She had already left, and then I realized that she was calling me so early because it was the end of her shift. She is really a remarkable person. So I called the nurses desk and repeated the mantra about his blood pressure.
Today, I visited for our regular Sunday breakfast. I told my brother how proud I was of how he had handled the meeting and I think he liked that. It sounds like the dietary changes have been made, but he is still being woken up at 5:30, and he didn't get his shower or shave Friday night, so I need to call tomorrow about that. His hearing aid was pretty cleaned when I check it, but I had cleaned it on Friday, so who knows whether they are doing that or not. I asked him if they had recently taken his blood pressure and he said no. I reminded him that if he felt faint at all, he immediately had to tell someone because the condition could be life threatening. He gave me his usual "I will" but I know it is unlikely that he would tell someone. At this point, I am trying to let go a bit, I can't stress myself out to the point that I get sick like I used to.
A very interesting week.
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