Today was my mother’s 65th birthday!! Happy Birthday, Mom!! I love you more than I could possibly express, and I’m so sorry that you are going through all of this on your birthday.
It was a good day, despite a few inconveniences. After Elliot spent half the night on the phone with Verizon trying to get our phone fixed, he finally worked out a temporary fix so that if my mother called, I could answer the phone. I have to say, that was my greatest worry – my mother gets so upset when she cannot reach us, and I certainly did not want to cause her one moment of distress through Verizon’s idiocy.
My phone rang a little after 8 this morning, and it was my mom telling me that she had a good night. Ever since she started wearing her new talking watch, she has been much more oriented as to the day/time. I’m so glad that worked out!
The kids woke up shortly after Mom’s call, and the day began. It was our usual routine…breakfast for the kids, waiting for the babysitter (Christin today), etc. While Christin entertained Micah, I started to sort and fold laundry while Elliot fought with Verizon about fixing our phone line (in short, someone ordered that our line be switched from a regular landline to their FIOS service, which caused us to lose service). There is a huge mountain of clothing to sort and fold right now thanks to all the hand-me-downs we have for the kids. I still have to get to all of my clothing, too!
We received a flower delivery for mom from Faye and Barry – we’ll be surprising her with the flowers tomorrow at her birthday party (we’ll use them as the centerpiece at lunch). While I was folding laundry, I got another call from my mother – despite EVERYTHING, they were AGAIN refusing to let her use the commode. I was furious, and I called up the nurse coordinator for the floor and yelled. About 15 minutes later, my mother called back – she wanted me to know that she was sitting on the commode. I started to laugh – how many people are actually excited to receive a phone call from their mother about sitting on the commode? I’ll suffice it to say that Mom’s commode adventure was a success, and as a result, she was pain-free all day today.
Actually, they had Mom on the commode a second time after lunch, too. The first time, they just helped her stand and pivot to get to the commode, but the second time, they used a different type of a mechanical lift called the sit-stand lift. All I know is that last week, when all this began, they had proposed using the sit-stand lift for moving her, and OT determined it was not safe and forbid it. Today, that is the same lift they used…which just makes me angry that they *could* have fixed this issue a week ago!! I guess I will just be thankful we fixed it today.
Maya and I left to meet my parents at 12:30. Mom looked great today and was eager for me to read the blog and hear all of your messages (via email, Facebook and the blog). Today was a bit chaotic – we had three cell phones ringing off the hook with messages from Mom, and she spoke to as many people as she possibly could. All of her friends were calling, and she was so thrilled to be speaking to everyone. Gonzalo – I am not certain if my mom ever spoke to you directly today, but I played her your voicemail message and she had a huge smile on her face. Jo – she was thrilled to get your texts today, too, and hopes you are recovering well.
Radiation was relatively on time…but we again had to wait 2 hours for the return transport back to Levindale! The part that makes me angriest? Transport being late meant that Jeremy was unable to visit Mom today – sitting and waiting for transport ate up my brother’s planned visit time. I am so sick of how inconsiderate this transport company has been. We have a scheduled pick-up time, and there is just no reason they cannot arrive within 20 minutes of that time.
After 1 1/2 hours, I decided it was enough, and I started to call the transport company every few minutes. I spoke to a supervisor, and I told them that all of this was unacceptable. We will not be waiting for transport for hours anymore. We are supposed to have a standing arrangement, and for the last week or so, they have not been doing a good job of getting back on time to pick Mom up from Hopkins. I will have my father call the transport earlier, and we will make THEM sit and wait for US if necessary. If they fail to show up within 20 minutes, I will be on the phone making their lives miserable – I’ve decided to become that customer that they appease to avoid. Being nice and understanding isn’t working for us, so it is time for a new approach.
After transport arrived, we finally got back to Levindale a little after 5. We were sorry to hear that we missed a visit from Carrie (my sister-in-law’s sister-in-law). She works at Sinai and stopped by to drop off a balloon and a brownie for my mother. She was so touched, loved the brownie, and wishes she had a chance to see and thank you in person. We also learned that the Luchs had sent us another flower delivery, too. It took us about an hour to hunt the flowers down, but we did, and they were beautiful! They sit next to the plant Scott and Rochelle sent when we arrived at Levindale and the plant the Levine, Lichter and Breslow “kids” sent to my mom when she was at Hopkins.
When we got back to my mother’s room, her aide, Krystal, was there waiting. She was a wonderful help – she quickly got Mom back into bed, changed, and comfortable. She put away Mom’s clothes, and arranged everything. When Mom needed a drink, she went and got one for her. It was so nice for me – I just sat down and nursed the baby (well, I hunted down the flowers, too), but I was far less frazzled than normal.
My father left (and after a bit of head-butting, I finally convinced him to drive home via the back roads because a traffic accident had closed down the major highway route he usually takes), and I stayed behind for a while longer with Krystal. I showed her where the fresh fruit was located (and the ice cream). Krystal got Mom’s dinner tray and set it up for her (because we were so late coming back from Hopkins, we did not end up getting Mom any special dinner from a restaurant). I showed her how we cue Mom to find her food. Mom topped off her dinner with fresh honeydew and Breyer’s Chocolate Ice Cream. I should have lit a candle for Mom and sung happy birthday…but she attacks that ice cream far too quickly! I started to help Mom fill out her menus, but ended up leaving those for Krystal to finish with her.
After dinner, Mom started to work on some of her speech and vision therapy exercises – a word search! She was initially finding it frustrating because she could not find the words. She said she felt stupid, and I told her the problem was the vision, not her brain. I watched what she was doing, and I realized that she was only looking at the right 4 rows of the word search, and that is why she was having such a hard time. So, I slowed her down, and started her off by helping her find the left side of the puzzle. I found that I needed to verbally coax her to the end of every row, and realized that was not effective. So I then took her cell phone and placed it to the left of the word search, and told her to keep searching across each row until she saw her phone. That helped enormously, and my mother started to find her words! I then remembered a tip that Kat, the occupational therapist from Wilmer, had given us, and I dug out a blue highlighter from my purse. I drew a blue line down the left side of the paper, and told my mom she needed to search across each row until she saw the blue line. That really made a huge difference! I think I need to start to carry a highlighter around all the time to help my mother with reading (and possibly some other device my mom can use with books, too). She is getting much better at scanning, and is learning how to better cope with the vision loss.
I ended up leaving while my mom was working on the word search. Krystal was helping her out, and she took care of setting my mother up for the night. It was kind of a relief for me not to worry about whether I forgot something.
Maya screamed the entire ride home tonight – I guess my timing was off, because lately she has been napping for about half of the trip. I arrived home around 7:20, and Micah and Elliot were still at services. I made a few phone calls and nursed Maya again. When they arrived home, I got a little quality time with Micah before we put him to bed. My mom called around 8:45 to tell me that they had given her the steroids. I was upset because it was the wrong time…but I did wonder if they had forgotten to give mom her afternoon dosage. I called my father and he checked with the nurse to figure out why they were giving her the meds at 8:30. They did forget to give her afternoon medications. I felt terrible that we did not remind the nurses, but again, THEIR system should be making sure this doesn’t happen! What about patients that do not have family members around?
Elliot baked cupcakes tonight for my mother’s birthday (I’ll be decorating them before we leave). We decided to go with cupcakes because they are easier to transport and eat and less likely to invoke a cutting fee from the restaurant. I had wanted to experiment with a new cupcake recipe, but we did not have time to get to the store to pick up some of the different ingredients, so we went with our old “standby” recipe. I also have been wanting to try out my Aunt Hilda’s icing, but I’m not sure I’ll be able to do that this time. I’m looking forward to tomorrow, and I hope we have a great party.
Oh, and Donna, if you are reading this, we hope that your daughter’s wedding is a beautiful, wonderful, and amazing event for your family, and we wish her years and years of happiness!