I began the day with mom early this morning. I found her awake and alert and sitting in bed eating breakfast. She had orange juice, scrambled eggs, sausage, vanilla milk, farina, a hard roll with butter, and coffee. It took mom a while to finish breakfast (about 1 ½ hours) but she did it. She complained at one point about being “out of breath”---this is a side effect of the haldol. As Claudia said, we are no longer going to give it to mom. However, mom said she slept well last night. I came to check on mom at midnight last night just to see what was going on. She was sound asleep and so was her roommate thank God. Anyway, when I arrived this morning, mom was in bed eating all alone---no one watching her. She was supposed to be in the dining room if no one can attend to her while she eats. I told mom’s nurse about this and was told that the residents in breakfast in bed, not in the dining room. The speech therapist heard me and came to tell me that, although it is preferred that mom doesn’t eat unattended, the staff in this unit do not attend residents when they eat breakfast. Mom’s roommate was already screaming in pain this morning. Poor thing. We prayed for her. I called and left a message for the social worker this morning asking for mom’s roommate to move out of the room and not mom since mom was here first and mom’s roommate has nothing to move but herself from the room while we have a classroom full of materials and posters and pictures and a safe…for mom. Moving mom is no easy task. No answer yet, though dare I say I can predict it. While mom ate, I kept cuing her to tuck her chin as she swallowed. She did it about 40% of the time. She kept asking me why she had to do it and kept explaining why. It is imperative that we be here with mom for all meals: 1. They will only allow her to sit with her tray and eat for about ½ hour tops if we don’t 2. Mom could choke (she really took huge bites of the hard roll and did actually choke once) 3. Mom needs to be set up in bed correctly (this morning mom was skooched to the left side, low in the bed –head and body far down—and the tray was really very high. I had the speech person and an aide move mom’s body up high in the bed and lower the tray and sit her up higher---common sense but no one seems to have any around here. Ever the teacher, I teach wherever I go. Mom’s glasses and hearing aids were not in when I arrived either. The gross under staffing in nursing facilities is horrific. I can’t ever imagine cutting back on staff in such places. In order to be with mom at breakfast, we need to get to her no later than 7:30 a.m.
Mom and I chatted a bit while she ate and then when she finished eating, I left for work. Dad came minutes after I left and said that mom had a really good day. She had chicken ceasar salad for lunch with cole slaw and potato salad. She ate it all with no problem. I called Claudia to find out that, although the aides or nurses wrote that mom only ate ½ her dinner last night, she ate it all. Accuracy is so important here regarding what and how much she ate because depending on how she does with this, mom will get rid of the G-tube/feeding tube/peg. Reporting incorrect information will make mom keep the liquid feeding and G-tube longer. Mom went to OT and dad said that mom pulled her shirt on and off over her head 3 times and that mom also learned how to push the wheelchair on her own!!!!! She even showed me a little when I came later in the afternoon with much coaxing from me! She kept saying, “Oh, it’s no big deal. You’re so dramatic Kathy!” A typical mom statement to me!!! In PT today, mom was put on the stationary bicycle to improve her balance. This is also a first!! Mom and dad were sitting outside when I arrived today.
I had a harrowing day. One that made me feel so vulnerable and small in the grand scheme of things. I don’t know why, but today I was worn out and beaten down. We heard from Medicaid and were told that everything went through and mom’s application was accepted BUT that the entire month of October 2010 was not included in back payments!!!! This equals $700 per day!! If you are reading this and see dad---don’t mention this to him unless he mentions it to you. The purpose of reporting all this is to help someone else by giving information about the system and how it works and what to expect. Another purpose of reporting this is so that people know exactly what to pray for. This was a huge bummer to say the least. I also was told that it is going to be difficult to get the Haldol removed from mom’s charts now that it is there!! I told the head nursing supervisor that we don’t want mom to receive this medication any more and that whoever prescribed it went wayyyyy over the top with using this antipsychotic, heavy duty, use-in-psych-ward-institutions drug. The nurse said it is only as needed. I asked who determines when it is needed. The nurse said the nurses do. I said no way. I was told to speak to mom’s doctor tomorrow and I was told basically that WE were the ones who asked for something----!!!! Yes, but NOT haldol or anything as strong as that!!! We asked for a mild sedative to calm mom and help her sleep. ALSO---it occurred to me that the agitation we saw on Friday and Saturday was from a reaction to the anesthesia mom had on Friday.
Next, the facility said that they wanted us to change and reschedule mom’s neurologist appointment on Thursday!! NO way!! It takes 3 months to make and get an appointment. I had to work through that. THEN…the roommate saga---I was told by Social Worker, the Admissions person and then finally the Building Administrator (who texted and called from vacation to help out!! Great person but no clout!!) that if we have a problem with the roommate keeping mom up at night, then mom needs to move out and into a new room!! Not the other way around even though mom was in the room first. The other patient has rights but I guess mom doesn’t seem to have any. I fought politely but firmly and assertively…and got no place. I said it all---Mom was there first, mom has rights too, if mom doesn’t sleep at night then she can’t perform well in therapy, if she can’t perform in therapy then therapy gets cancelled and cut off….no avail. I was really feeling defeated today. And angry too. I prayed all day to have God put His Words in my mouth—because my own were turning rapidly foul by the minute. They had an empty room with 2 beds…if we took that one, who knows if we would end up in the same predicament. They had 3 rooms with beds by the door and not the window which cuts out wall space for all our materials. They had a 5th room with armoirs and
no TV at the foot of the bed. Nothing worked. I decided not to rush and to wait.
On the bright side, I told dad that, if he sees the roommate’s daughter tonight, to ask her if it is OK to move her mom instead of ours. Dad did it and the daughter said no problem!! She told the nurses she wanted her mom moved…but who knows how this will end up??? Pray for the best.
Also on the bright side, mom saw one of the respiratory people from the old unit and said, “She looks so familiar. How do I know her?” I told mom who she was and mom told the therapist, “Thank you so much for everything you did for me.” The therapist cried and so did I. What a moment. It made both our days.
John and Ava came to be with mom tonight. Ava brought mom into the facility computer room and showed mom all her pictures from the prom and graduation and mom loved looking at them. Mom is slowly realizing the things that she missed over the last 14 months. More details on John and Ava's night with mom will follow tomorrow night...I'm hitting the hay now.
“From the rising of the sun to the place where it sets, the name of the LORD is to be praised.” Psalm 113:3
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