Friday:
I decided, after getting a few prods from our faithful followers, to call hospice asking if a respiratory therapist could come out to the house and get another bi-pap breathing device for Joe. Trying to come up with a bandage to help his nose heal, wasn't working. So, Phil (from respiratory therapy) stopped out to the house during the morning with a different model that fits over the mouth only, with little probes that fit into each nostril. So, we were able to get rid of the triangular mask that rubbed his nose bridge raw. And, the nose bandage was removed to promote healing. Joe sleeps much better with this device, too. YAY!
Our friend, Pat, helped us out today as our day shifter. Amber, the hospice aide, came out in the morning to shave and bathe Joe. Then, Laura (friend from church) called and offered to pick up a few grocery items (shampoo and soft drinks). Thank you! Kay (from Taco Bell group) stopped by in the afternoon and brought a replacement supply of Reese Peanut Butter Easter eggs and offered to take Becca to work for us. I ended up picking Dan up from school myself because I had a few errands to run that only I could do. Boy, it was sure nice getting out of the house in this beautiful Spring weather.
Later in the afternoon, Steve C. (Elder Class of '78) stopped by to visit Joe. At the same time, Bert and her husband, Bob (from Taco Bell group) came by and brought 4 different flavors of Graeter's ice cream without chips. They thought maybe Joe had a chocolate restriction so they opted for the non-chip flavors. As a cousin of Joe's always says, "it's all good!" Teri, wife of Jim (Elder Class of '79) who had visited Joe previously, brought over a dinner. Unfortunately, I was on a work call late afternoon and couldn't come upstairs to thank her in person. Pat, our day shifter, did that on our behalf. Joe was taking a power nap at the time.
Saturday:
On the weekends, I have day and night shifter duty. It was a quiet morning and I was able to get some laundry and chores done around the house. Our friend, Pat, who did the overnight shift, stayed around long enough to take Dan into work for me late morning. She also picked him up and took Becca to work mid-afternoon. Thank you!
The afternoon was all about Joe. We had to prep for the big event later in the day. Going to church! I shaved Joe and washed his hair, got him completely dressed. My sister, Jenny, and her neighbor/friend, Lisa, were able to get a Honda Odyssey mini-van that had been converted with an adult wheelchair lift. They came over early to help me get Joe in his coat and into the patient lifter. We moved him into the wheelchair and strapped him in. He had a little difficulty keeping his right hand on the remote control, but he was still able to "drive". However; throw in the need to move the portable oxygen tank on wheels along the side and it made for a challenging trip. It was interesting getting Joe to drive up the ramp into the van. There wasn't a whole lot of extra room and the remote is very sensitive to the touch. Needless to say, I had to reach over his back to operate the remote to get him in without tipping over the side.
We drove to St. Lawrence church for 4:30pm mass. When we arrived, Joe jokingly asked me to "announce his arrival". We sat at the front pew at the break on the end. During communion, parishioners had to walk around past Joe. One of his HS friends, who didn't know what had happened to Joe, was utterly shocked and stunned as he saw him in the wheelchair. After church, Joe was a total "rock star". He had at least 60-70 people waiting in line to talk to him. It was awesome and Father Mark came over to visit with him, too. Joe thoroughly enjoyed the trip but it also wore him out completely.
When we got home, we had a message on the answering machine from a friend who wanted to stop by that night and visit. It was the first time that we had to turn folks away. Joe was just too exhausted. He actually only had some jello with fruit because he didn't have the energy to eat anything solid for dinner.
Dan and I got Joe ready for bed, and the ritual includes giving him night time pills, which he takes with water. He got all of the pills down and after the last one....about 2-3 minutes later, he started to cough. It is very difficult to cough up anything because the disease affects the ability to swallow so pneumonia can be a big concern. He kept coughing and we pulled him forward to slap his back, but he was gagging and making strange faces. Finally, he was able to expel something and it turned out to be the last pill he swallowed. He was so anxious and upset about choking that I contacted hospice and they sent over a nurse to check him out. His blood pressure was sky high due to the scare, so anti-anxiety meds were very important last night to calm him down. He was able to relax enough to fall asleep. WOW, not a great ending for an otherwise awesome day.
I do have request: Does anyone know of or have a baby monitor that we could borrow? We'd like to be able to hear Joe when he wakes up if we are out of the living room. With the breathing device on and his inability to move, it is difficult for him to make enough noise to get someone's attention. A monitor would sure help.
Thanks to everyone for their continuing support, prayers and words of encouragement. It certainly helps our family get through this difficult journey.
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