Dad began the day with mom this morning. He came early in the morning and found mom sound asleep. He put her hearing aids in and her glasses on but didn’t realize that he could do her physical therapy/range of motion, even though she was sleeping, so dad left and came back later. Anthony came next and wrote that mom was still very sleepy and wouldn’t wake up for very long. When I arrived in the afternoon, one of the nurses who we love, greeted me with a big “Happy Valentine’s Day Kathy” and gave me a hug and a kiss. When I got to mom’s room, I found dad and Claudia there with mom. Mom was leaning over to one side, asleep again. When she woke, I said hello and mom just stared at me. Claudia brought a craft activity from Michaels!! She has the best ideas. It was a foam activity kit of a ladybug. Claudia helped mom make the ladybug hand over hand, using glue and various foam pieces. The head respiratory therapist told Claudia that, although mom is doing better with her breathing, she is still having episodes where she is not breathing much above the vent still at night. He said that she is doing much better each week, but the night respiratory people still say that she isn’t consistently breathing above the vent. The head of physical therapy said he would speak to mom’s physical therapist about whether or not he came to see mom lately and get back to us. Hopefully, he didn’t come today because mom is out of it!! Asleep a lot!!! She is sleeping again now too. Mom had some constipation again over the weekend so the nurse gave her something for it this afternoon. The speech therapist came to tell us that mom ate a Lorna Dune cookie and had a full cup of cranberry juice. Dad said that the speech therapist gave mom the cookie first and then tried to give her some fruit salad but mom didn’t want it; she only wanted the juice. I am wondering if some of this high sugar food is contributing to mom’s sleepiness?? Especially today? We will have to investigate better types of food to reintroduce to mom. The speech therapist also said that the respiratory people told her they are against mom having the Passy Muir valve for talking at this time while she is on the vent because they feel it would put her at too much danger regarding her breathing. The respiratory people said they only use the valve with the trach collar and that mom is on the slow road back to the collar. The speech therapist said that mom is definitely talking a lot more, even to her. Dad and I tried to let mom work with the thera-putty for a while. She squeezed it with her right hand but then fell asleep with it in her hand. Dad also had mom try to pull apart the magnetic piggies that JoAnn gave her as well. Claudia ended the day with mom today. When she arrived tonight, mom was awake and alert and happy (good, but bad too!! She is mixing up her days and nights again!!). Claudia said she did mom's physical therapy/range of motion fully...stretched her out really well, but Claudia didn't lift her legs up to her abdomen because she didn't want to wake her up more...she wanted her to relax. Mom read the "Great South Bay" newspaper. Claudia read some of the stories to mom. Then mom grabbed the paper and Claudia helped mom move her hand to turn the pages. As mom looked and looked, mom licked her finger to turn the page...but Claudia had to help her turn it by lifting her arm to turn the page. She never turned the page independently at all any of the time, but there were more and more spontaneous attempts to do so. This made her arm have to work more. Claudia tucked mom in and prayed with her and dimmed the lights and timed the TV.
Today was a difficult day for me. I had a lot going on and can't elaborate here, but the point is that mom was, is, and would have been my touchstone during this trial...and of course, she isn't there to do that for me any more. However, just as I was at the lowest point of the day, I felt a hand on my shoulder from behind and turned to see my dear friend, Sister Marie, standing beside me...and before I could say anything, she said, "Kathy, I just want you to know that I am praying for you each day. I don't know how you do it all and I want you to know I am lifting you up in prayer each day. It's all I can do." God is so good. He has sent me some wonderful angels where I work and Sister Marie is one of them. Her words of encouragement mean so much to me. Another faithful friend I have at work is Sister Mary Ann, who writes to me every one of these past 267 days of this trial....every day she writes. I look forward to her response to me each day...her personal notes of love lift me up at the start of every day. Sister Miriam always reminds me of where mom was before and where she is now....pointing out how much progress she has made when I can't see the progress because I am too close to notice. God is good indeed. I know many of you are praying for us all and believe me, it matters and it works. Don't stop. Happy Valentine's Day to everyone. Hope your day was filled with love and that your year will be filled with much more. Our family loves you all dearly.
"Do not fear...I have summoned you by name; you are mine." Isaiah 43:1
"I have loved you with an everlasting love; I have drawn you with unfailing kindness." Jeremiah 31:3
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