FYI....the ALS association is actually monitoring our blog, and they saw my request for a baby monitor. It arrived today in the mail. So, for those of you that have since messaged me about letting me borrow one.....we're now good. Thanks so much for everyone's help!
Wednesday:
Joe is continuing to ask for more anxiety and air hunger meds more often....each day. He is also still eating less because he doesn't feel very hungry. Joe continues to take multiple naps per day and they seem to be getting longer. He is still alert when he is awake and enjoys all of the visitors.
Our day shifter for today was Beth (Joe's cousin) and her daughter, Molly. While Amber (hospice aid) came by to bathe and shave Joe, Beth and Molly helped me with chores around the house (making beds, swiffering floors, collecting the recycling, etc.). Donna (massage therapist), stopped by late morning to give Joe a complete workout to soft music. He was so relaxed that he fell asleep in the middle of the appointment.
Mid-day, Joe's boss (Bob) came by after driving in from Indianapolis (he flew in from California), and brought lunch for everyone from Bob Evans. He spent several hours here, and helped collect all the work equipment and cell phone, laptop, and materials that need to go back. Bob also took care of taking the boxes, paper stuffing, etc. to the recycling center up at Kuliga Park, so I didn't have to clean anything up. That was a lot of work and I appreciate him taking care of it. I had to apologize to Bob after he left because I forgot to get a picture of him with Joe.
Beth volunteered to take Becca to Beacon Ortho to have her foot x-rayed. She stepped down on it wrong as she was taking our vacuum cleaner down the steps. Becca thought it might be broken and it was! Now, she is in a cast and on crutches. Beth also brought her home after they stopped at the grocery to pick up a few boxes of oatmeal packets.
Our friend, Pat, who normally picks up Dan from school was not available. So, I have to thank Julie B. for arranging a ride for Dan. He came home with another student who was driving her son home. Thanks Julie! Jeff D. (Elder Class of '80...that I thought was Class of '79) stopped by late afternoon to visit Joe. He also brought a dinner for us. Thank you!
That night, actually early the next morning (~4am), the alarm on the oxygen concentrator went off. I called after hours support and they talked me through a few things to check. All I could figure out was there was a loose connection or we had a kink in the tubing that set it off. It took several minutes once the alarm went off for the machine to adjust back to 5 liters of oxygen. It was difficult to get back to sleep after that adventure.
Joe had asked for an increased dosage of his anxiety meds when he went to bed last night. And, he slept the entire night without waking, very rested. Yay! However; he is still eating quite a bit less than before. We have to keep reminding him to drink water to stay hydrated and to keep the output clear.
Our day shifter today was our friend, Pat. She was busy taking Becca to work, picking her up, and then taking her for a last minute haircut.....all while taking care of Joe (and me providing backup during lunch, and breaks, etc.).
A friend from work, Gail, drove out here to the west side from downtown to visit with Joe.
She had actually never met him before. However; he did sing to her over the phone on her birthday. She and I were supposed to have lunch at the office that day, and I had neglected to tell her about Joe's circumstances. So instead, she brought lunch for all of us. Wilma (hospice aid) came out in the early afternoon to bathe Joe. Later in the afternoon, T-Bird (Joe's cousin), Beth (Joe's cousin. although unrelated to T-Bird) and Aunt Mary Jane, all came by to visit with Joe.
Joe's sister, Jane, and Pat teamed up to help fold all the laundry that had been done throughout the day. When the aids come to bathe and shave Joe, they also change the bedding. So, there is always some laundry to wash and fold. Jane's husband, Jeff, was going to cut our grass but since it had rained the previous day it was too wet. So instead, he edged the yard. Thank you!
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