I began the day with mom this morning but it was later than usual (around 10:30). Mom was dressed in her day clothes but still in bed. Mom was out like a light. I couldn’t wake her. One of her CNAs came in to put her on the bed pan---a new CNA—but the person was about to put mom on as she slept!!! I told the CNA that in order to do bladder training, the person on the bed pan has to be awake. The regular CNA joined us next and said that mom wasn’t herself today. Very groggy. Couldn’t be woken up. I asked mom’s nurse if mom was sedated last night…the nurse checked and there was no record of it. I asked mom who I was and she said, “I don’t know…my father?” She was soooo groggy and disoriented. I was alarmed. Mom continued to sleep and was unable to wake up for the next hour and a half. I found out that mom’s roommate was up all night screaming and yelling and that this is what kept mom awake. I wonder if we could use ear plugs at night for mom? Just an idea.
When mom finally woke (I put the TV on loud)…the speech therapist came in to bring mom lunch. I found out then that mom had French toast for breakfast with syrup!!!!!!!! Again—I know I’ve said this before but we all just don’t realize the effect of certain foods on our bodies until we stay away from a food (omit it totally from our diet) and then go back to it. Carbohydrates like pancakes, French toast…are poisonous!!! Yes, they taste great—but oh boy, they are toxic! The crash from carbs hits hard. I admit my patience level was on low this morning. I prayed for peace because I wanted to scream at everyone in my path. If mom is tired during the day, and worse yet, if she sleeps all day, then mom can’t do well in her therapies. If she doesn’t perform well in therapy, then she gets dismissed from therapies!!!! All her therapies are performance based because they are all reimbursement driven. We worked so hard to help mom. Mom herself has worked so hard… we can’t let any silly, controllable obstacles stand in her way now. We can’t. We won’t. The new bed bumper pads that went on mom’s bed Friday, are not on the bed correctly now because the one side can be moved flat so she can still skooch off if need be. Not good. Mom had no circulation stockings on her feet and legs again today. I put them on. I calmly brought all the concerns to both mom’s nurse and head nurse. Mom ate a huge meal of macaroni and cheese, chicken, and cauliflower, along with apple juice and vanilla milk. She fed herself and ate it all.
As for the G-tube (feeding tube), here’s what I found out from both the dietician and the speech therapist. Mom will go on ½ liquid, tube feeding along with 3 full mechanical soft meals with no added salt starting today. Mom will also still be on nectar thick liquids for now (don’t know why, because she drank regular water last week with no problem!). Mom will be monitored when she eats, but mom will feed herself. No one is to feed her. If we, her family, are present during a meal time, then mom gets to eat with us. If we are not around, mom is not to eat in her room, but down in the main dining room with the other residents. By the end of the week, mom comes totally off the liquid feeding. We are not supposed to bring food from home yet but I suppose that, if we do, we just need to tell someone what and how much mom ate so that what she ate can be recorded. Mom and I went over the menu and picked out the food she wants to eat over the course of this week.
Now, for the big issue: When does the peg (G-tube, feeding tube) come out??? Mom gets the tube out as per whenever the doctor and dietician deem it possible to do so. The decision is based on many things—such as how much of what can be given to mom by mouth (medications…). Right now, mom is given all medications by tube not by mouth. I need to see the doctor about this next week. Also, only the doctor who put the peg in can take the peg out. In mom’s case---3 different people put it in so far. The first was the doctor at the original hospital she was in 14 months ago. The second was the doctor at the hospital close to mom and dad’s house (when the tube came out because it got stuck in the wheelchair). The third was just this past Friday night and it was at a totally different hospital—and it was inserted by the nurses. So WHO takes it out? And depending on who takes it out…WHEN will it come out?
Mom left for OT and PT just as she finished lunch. While she was gone, I spoke to the Physician’s Assistant about getting the feeding tube/G-tube/peg out. The PA said that mom will be assessed in a few weeks. The PA said that some people begin to eat and do really well but then they decline with eating after a few weeks. The PA has to make sure mom’s appetite keeps up before taking the tube out. Also, I asked to have all mom’s medications…given by mouth. The PA said it will be changed later today. The PA asked who the physician was who put the G-tube in because that doctor has to be the one to take the tube out. The PA also asked about how mom did over the weekend and with the angiogram. The PA was concerned with the note about the Haldol and I explained mom’s nervousness and agitation after 8 or 9 p.m. each night.
The physical therapist said that mom did well in PT. Mom stood and she bears weight well with the right foot but not on the left one yet. Mom said that she tries to stand and walk in PT but it is very hard for her and very tedious. The PT said they raised her weights to 5 lbs on each leg now and mom is doing it (leg lifts). They adjusted her wheelchair to fit better to the bottom of her feet (she was too short for the foot rest before). The Occupational Therapist said mom needs to show gains again soon ---like with the dressing or therapy will end.
After PT, out of the blue, Mom said, “I will always love you you know.” I told her I would always love her too.
I called one of the other rehabilitation facilities today---the hospital that is closest to mom and dad’s home. I found out that they only do acute care which means that they only take patients on an inpatient basis right after the stroke occurs-within a month after it occurs. They said that they could only take mom on an outpatient basis once she leaves the facility she is in now—and only with a doctor’s prescription. They said that mom could only have been in an acute care facility like theirs for a month or so anyway…then she would go to a sub-acute facility like she is in now. I also called the other hospital/rehab facility that is close to where mom is now. I have to call them back.
Mom slept on and off all day. She had no sleep last night. We voiced a complaint and were told we could move mom to one of 3 rooms in the unit. Another move. I have to think this through with our family. Mom could have another loud roommate down the road…or she will have new aides and nurses…or she will be in an unfamiliar room…. We are thinking that we will discuss all this with mom’s neurologist tomorrow.
Mom did well in OT. She remembered some of what she did there too! She wiped a counter with a sponge, she took a cup from a counter and found the garbage and threw the cup away. She also put her shirt on with only verbal cues as well. The OT said she did really well!! So far, she is making progress so she can continue with OT!!
After OT, mom, dad and I went outside. It was beautiful outside. Mom called JoAnn and Anthony on the phone and talked to both of them. A real conversation with both!! We brought the zipper board outside. Mom practiced zipping and unzipping. She did GREAT!! It took her a while and she was able to unzip all the way but could only zip once the catch was done at the bottom. We saw mom’s old CNA and nurse and both kissed mom hello and chatted. Mom remembers her CNA but didn’t totally remember her nurse. When we went inside, we did some writing on the white board. I wrote mom’s full name in script and handed her the marker and asked her to write her name. She DID IT!! She wrote her first and last name in print!! She never did that before. She tried to write dad, my, and Lenny’s names next---very close approximations!! The L in Lenny was sideways as was the E and the Ns were incomplete but the Y was correct! Next we did the ‘Usborne Animal Doodles Activity Cards’ which are wipe off cards that you draw on to complete various animal pictures. For instance, you add the stripes to a zebra or the spots on a leopard… Mom was far from correct with what she drew, but she read them all and made attempts. Her persistence is great.
Lenny joined dad and I in the afternoon. We all talked and laughed and mom did more writing and then she played cards with Lenny. Claudia came at dinnertime.
~Kathy
I came to see mom just before dinner. I sat while mom ate and kept telling her to “tuck her chin” while eating as per Carmine who said to do this to avoid choking. Mom ate ham and cheese quiche and mixed vegetables. She ate it all! After dinner I played cards with mom. A friend of mine who is a speech pathologist gave me a book on using cards to help with cognition. One of the activites was to lay out specific cards (Q hearts 5 Diamond 2 spades Jack of clubs and spades a 10 of clubs 8 of clubs Jack of diamonds a king of hearts and a 2 of hearts) You read a story from the book about a Queen who had a ring with 5 diamonds. The king was suspicious and so he hired 2 bodyguards to watch the queen. The queen left at 10 before 8 to see the Jack of diamond. The king of hearts found out and his heart broke in two. I told mom the story and then asked her questions and she was able to answer them by looking at the cards. We then played a game where you give one card a word to supplement the name and value. I substituted the word “peach” (mom picked the word) for every Ace in the deck. I then took out all of the aces and then put 4, 5, or 6 cards between them. I turned over one card at a time and mom had to name the cards. If an ace came up she had to say “Peach” instead. It was not an easy task. Mom had a great deal of difficulty remembering the word or what card to substitute. We played this game many times. Then the CNA came in and mom was put to bed. When she was all snug in bed I put on “Pawn Stars” a pawn shop in Las Vegas that buys and sells antiques. It is a great show and mom has become interested in the items for sale and their historic value. The woman in the bed next to mom started to scream out loud. We were told that mom didn’t sleep last night because her roommate screamed all night. We are so torn between having her get a good nights sleep and giving her medication that would be detrimental. Kathy looked up the meds they were giving mom and the side effects are horrible. Meanwhile, I already had the nurse give her something because she was getting agitated and her roommate was yelling. Kathy and I spoke and will talk to the other members in our family to decide if we really want to give her the meds that were being given. I would have to say no. The good thing is she will be going to the neurologist on Thursday and we can ask him for advice. I stayed with mom for a while and then left.
~Claud
"If we hope for what we do not see, we wait for it with patience." Romans 8:25
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