For the last four days I've had a knot in my stomach, I haven't slept well and I've been an emotional wreck. I am trying to decide if Mike is in a downward spiral - OR- maybe I have been spending too much time at home with him. Surprisingly enough, I truly do not know which one of these scenarios is true.
I was happy when my boss decided to give me off on the Wed before Thanksgiving. This was an unexpected surprise and one in which I thought I would be thankful for. By the time Sunday night rolled around, I realized that the extra day was not so much of a blessing.
On Thanksgiving day, Mike awoke totally out of sorts. He was congested and he was moaning and VERY gurgly. His aide pounded his back as we always do, but this seemed to only make matters worse. He would cough, but he wouldn't open his mouth, therefore, nothing was being released. We decided to only give him fluids, as the hospice nurse always tells us this is the best thing to do to help loosen the mucus. Our aide left a little earlier than usual that day, and I attempted to give Mike something for dinner. That didn't go over well and he went to bed as uncomfortable as he woke up.
On Friday, our aide didn't show up AGAIN, and this time the agency claims they had no idea she wasn't coming in. Soooooo, no aide again. All that I had planned for Friday was now impossible as I needed to stay home to care for Mike. He hasn't done well for me for quite some time and coming off a bad day like Thanksgiving, this was not a good thing. He hardly drank or ate and by the end of the day he was pretty limp. Still gurgly, but no moaning, we ended the day.
On Saturday, we had out new Saturday aide and Mike ate and drank pretty well. He coughed alot throughout the day and seemed congested. His sores didn't look well either and I assumed it was because he basically went 2 days without much nutrition. He was gurgly again at bedtime and by this time my stomach was a mess. I was trying to figure out if this is what each day is like for Mike. I'm usually at work and I only get home after he's finished eating everything. Does he struggle like this each day? Was this something new? It seemed like I spent the entire day congratulating him for coughing and then at nighttime begging him to cough.
By the time yesterday rolled around I had 5 full days with Mike and I was emotionally and physically exhausted. I'm still not sure if this is the "norm" for him, or if he's got some sort of cold or congestion in his chest. His regular aide came in today, and she hadn't seen him since Thursday afternoon, so I will be curious to see what she says when I get home today.
Yesterday Courtney said to me, "mom, I think you just need a break" and I agreed 100%. I love Mike and care about him deeply, but after spending five full days with him, with no break, I am spent. This morning Elaine said she could tell he "wasn't himself" and seemed a little limp. Normally his arms are so contracted that you can barely move them, but today he was loose.
My mind races when I am alone with him and I see how he spends his days. I begin to question his "quality of life" and then of course, Courtney gets frustrated with me. She tells me I am reading too much into everything. What else is there to do?
I went to mass last night - it's been a while I'm sad to say. As I sat a looked up at the crucifix, my mind disappeared. Jesus was emaciated and suffering on the cross, much like Mike is at home. He's skin and bones right now and each and every day he suffers just to get through the day. I am NOT comparing Mike to Jesus, and honestly I'm not even sure why I brought that up, I guess only to say it was an emotional moment for me as we enter the Advent season.....At Thanksgiving we usually say what we're thankful for and this year my mom said "I'm glad we have Mike with us for another Thanksgiving and I hope we have him with us for another Christmas". I was taken back with that, as were the kids, but after the past five days, I begin to wonder...and worry.
LET GO, LET GOD.