Chaos...it seems to rule my life these days. Half the time, I do not even know if I am coming or going. My memory has always been one of my most valuable traits...I have a nearly photographic memory. I can remember entire pages of text, I can repeat conversations word for word, and I can remember phone numbers and locker combinations from 30 years ago.
Lately, however, I am getting distracted. I make appointments on the phone, and by the time I get to my computer to write them down, I forget what I am doing. I walk around all day knowing that I have forgotten appointments, but unable to remember what or when. Sometimes, I am momentarily surprised when people or appointments show up, then I become embarrassed that I forgot to pay attention.
Today was one of those days. We got up this morning, and at 8:30 our home health aide arrived. She immediately indicated to me that she was not comfortable doing transfers, so I could tell it was going to be a long day. We had hoped that it would be a quiet day at home...but we ended up needing to go to the hematologist's office so that Mom could get a shot of Neulasta (a 2-week shot that helps raise her white blood count). We got Mom up, fed, dressed and ready, but it was about 10:15 or so before we made it out the door. On our way to the office, we received a call from Mom's home health nurse, saying she was on her way to draw Mom's blood. Mistake number one...I had forgotten she was coming. To be exact, she never gave me a specific time, so I kind of didn't bother to pay attention to the appointment. I knew she usually came in the morning, but I just forgot to call her to tell her we needed to go to the doctor instead.
When we arrived at the office, we stopped off briefly at the surgery center to say hello to one of my best friend's mother. It was a nice quick visit, and Mom was thrilled to be out and socializing. We then went upstairs to have Mom's shot and get blood drawn for another blood count. The office was moving quite slowly...I think we were waiting for well over an hour (between the time sitting in the waiting area and the time waiting for the blood test results). We had one odd but kind thing happen...an older man came over and gave me a gold dollar coin - he held it out to me and asked if he could give me money for the baby. I was a bit stunned, and initially told him that she could not play with coins. He said he understood, and just wanted to give her money. I thanked him and took the coin...but perhaps I should not have watched all those spy shows on television tonight, since they make me wonder if there is a hidden tracking device or state secrets embedded into the coin.
After keeping us waiting, the nurse came back to tell us that Mom's platelets had dropped down to 28,000. They informed us that Mom will likely need a transfusion on Monday morning. I have to say, I was a little ticked...I wish they had just kept her in the hospital overnight and done the transfusion this morning before releasing her. I don't think that the doctor who has been seeing her in the hospital really understands my mother's condition, or how hard it is to get her in and out of the house right now. It isn't just the physical transportation...my mother does not have a lot of stamina. Long trips, and time spent in her wheelchair are a huge drain on her. The doctor seems to make all the choices that make life toughest on my mother.
Initially, they wanted my mother to go to a second lab today to get her blood type and cross test done. While the lab was conveniently located, it was already 12:00 (Mom had not yet eaten lunch, we did not have her insulin on hand because we expected a quick appointment, and she was already saying that she was too exhausted to continue sitting in her chair) and it was too much for Mom to stay out any longer. While the nurse seemed to think I was a raging bitch (she kept telling me that the transfusion was important, as if I didn't care about my Mom's health), I don't think they comprehend how physically taxing some "simple" things like just waiting another 45 minutes for a blood test really are for my mother right now.
I updated the nurse about getting a phlebotomist from the outpatient clinic to come to our house, and asked her to arrange it. I then took Mom home. We were in the door about 5 minutes before Mom was too exhausted to even sit at the table for lunch. Instead, she stretched out on the couch while I fed her lunch.
On our way home, Krystal called! We'd been worried about her since her hospitalization. She is doing well, and is finally starting to feel better. We were so relieved - we were worried that something terrible had happened.
After lunch, we received a call from the hematologist...the lab was unable to come to draw Mom's blood. But, the nurse had worked out a solution and convinced the transfusion center to draw Mom's labs on Monday when she goes for her transfusion. Only one minor hiccup...they wanted us at the center between 8:30 and 9:00. I nearly laughed...it is impossible to get Mom up, fed, dressed, medicated and out the door that early. She barely made it down the stairs in her pajamas to therapy at 9:00 am at the nursing home, and that was with an army of staff support! I tried explaining this to the nurse, who again acted like I was crazy and not interested in my mother's health.
Luckily, the transfusion center called me directly...and they understood our situation. In fact, they remembered talking to me a few days ago and seeing my mother, and they said they could be flexible on the time under the circumstances. We were so relieved! In the meantime, I also sent a note to mom's oncologist - perhaps Mom can get a transfusion up at the hospital on Tuesday when we are there all day for testing anyway.
We had a couple of hours of quiet while Mom rested on the couch. Well, almost quiet - the dishwasher repair man arrived. Actually, we were expecting the dishwasher to be replaced, but for some reason, our landlady sent out another plumber for a third second opinion. I'm not sure we will ever see a new dishwasher!
In the late afternoon, the parade began! First, my friend N (mom's dentist) came by to help fix one of Mom's crowns. While N was here, one of my parents' neighbors came by with dinner for us! It was a chicken and vegetable dish with rice and a salad. There was a lot going on (and the phone was ringing off the hook, too), so Mom was not able to give her full attention to either of our guests. After they left, a caretaker showed up for an interview...and I have to admit, I had forgotten that I had asked her to come over. She seemed nice...but I have no idea if she is an appropriate match. We may give her a try one of these days and see how it goes. I'm a bit uncomfortable, though - she works for a well-known service, but I got to her in a random way. The home health nurse recommended someone (who is currently unavailable), and that aide recommended this woman.
After the interview, Mom rested a bit in her room for an hour. When she woke up, dinner was served - and it was delicious. After dinner, Mom was relaxing on the couch. We received a phone call from one of Mom's co-workers, and I have to admit I did not remember they were planning to come over. Luckily, Mom was up and eager for a visit. They were here for over an hour, and I think it was a lovely visit.
Our home health aide left around 8:30 pm. I have to say, I was not particularly impressed. She did not do any transfers, she forgot to brush my Mom's teeth, and she did not help Mom with anything unless I specifically told her to do it. The one good thing...she did like to hold Maya, and she volunteered to wash all of our dishes, so she did score a few points. She is supposed to be here until Monday, so we'll see how it goes.
Maya has been terrible tonight - she just wants to sleep on one of us. I wish she would just go to sleep. I have a feeling Mom will be up a few more times tonight, but who knows. I hope tomorrow goes smoothly! We have another caretaker coming in for an interview - perhaps one of these days we'll find another person we like as much as Krystal...or at least another person we can trust.
18 months in review
3 weeks ago