So many things that I didn't even think about as we move forward. I pray that God gives me the eyes to see what I can do to help this situation. He ran out of morphine yesterday. He is supposed to be writing down the date and time that he takes it. He came up to breakfast and I noticed that he ate quickly and disappeared back into his room saying he had to take his meds. I gave him a few minutes, but, when he didn't return I followed him back into his room to see that he was okay. He was laying on his bed, face white, eyes bulging and tears rolling down his face. I asked "what's wrong"? He said "I am out of Morphine." I looked at his chart and saw that the last dose he had was at 1 am. It was now 10:20 am. His pain was at a ten. I called the hospice. The receptionist said she would try to get a hold of his nurse and call back. I went back to his room and picked up the brown bottle and held it up to the window. I could see down in the corner there was a little liquid left. I tried to break the seriousness of the moment with a joke and asked "who's your favorite?" I told him to open his mouth and gave him what little was left to hopefully take the edge off. When the hospice called back, she said 2 o'clock. 2 o'clock? Are you freakin SERIOUS?? No, that is NOT acceptable. What pharmacy can I go and pick it up at? She said they must deliver it. That is BULLSHIT! I told her we needed it sooner. Call whoever you have to but we need it now. Again, she said she'd call back. I went to hang back up the phone on the charger and noticed on his chart that the dates he had written. The dates were all wrong for the last 24 hours. Does that mean his pain was so intense he didn't know what day it was? What does that mean exactly? Is he beginning to lose his mind? It frightens me a little bit. This is the 21st century. No one on this earth should have to be in pain. I am mad. He had two nurses yesterday and neither one checked the meds? Really? So, folks out there, you have to do it yourself. I have never done this before, but, I'm going to share the knowledge as I figure it out so that your loved one doesn't have to spend even a minute in pain. Finally, at 12:30 I picked up the phone and asked the WTF? Not in those words (of course) I need these people to work with me. I am going to be the squeeky wheel. She said it was out for delivery. I asked again what pharmacy I could get it from. I reminded her it had been two hours since my first call and now 11 hours since his last dose. She said she couldn't do it. We had to wait for the courier. Just then the courier pulled up (God is good!) and with her on the phone I walked outside to sign quickly and grab the bag out of his hand and run back to and through the house to get to his room. I walked in and was already opening the package. Once the syringe was filled, he grabbed it out of my hand and drank it in and closed his eyes to wait for the relief. That will NEVER happen again.
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| Grandma and Betty |
We have sleep overs to share the care with Betty so she has some relief. I am busy. It seems like there is always something to do. I can help cook, clean, mop and dust. I watch Steve closely. He is at the point that his skin is sagging off his body. He has lost (I'm going to guess) 45 pounds. His skin is ashen at times and I know that the circulation is slowing. Because of the weight loss, the urine bag he wears on his side has begun to leak. As he lays in his bed, we have had problems with him leaking on his bed and basically wetting the bed. Betty bought some mattress covers and a vinyl cover we can zip it up in and I bought him some waterproof under pads for him to lay on. We just go about the work of changing the bed and washing the linens in bleach to kill the virus always sure to wear our gloves. It's hard for him. Sometimes, he'll wake up from his nap and come into the kitchen not even realizing he is dribbling all the way. He sits down on his favorite chair (now wrapped in absorbent bed pads) and lights a menthol cigarette and looks around his kitchen decorated in hot peppers not seeming to notice. His breathing is labored and the short walk through the two rooms seems to have exhausted him. We tell him he is wet and that he has to change his clothes. It is so hard because he is a man. A young man. I bought an "earth friendly" mop with microfiber pads that are washable. I just mop behind him and not say a word why. After his cigarette, he work up the strength and go back to his room and change. It irritates him and I think it embarrasses him. How would I feel if it were me? My Grandma doesn't want him to smoke. I told her I didn't think he was going to quit now. He probably feels like there are few things anymore that he has control of now that his body is betraying him. He'll do what he damn well pleases.
We are careful about nutrition. We make nutrient rich food and make shakes and smoothies with protein powder in them to hopefully help him have a little extra strength each day. The doctor said no Israel trip. It really seemed to let the wind out of his sails. He was so looking forward to the trip. I reminded him that he has to keep his strength up to make the trip to Utah in July for my son Aaron's wedding, then, his other neices is the following week. He said he'd be there. God, I hope so. Three hours of sitting eating or watching a movie seems to be his limit. How is he going to make a six hour trip in July? Today is May 15. If he has three hours today, what is the formula to determine if he'll make it to July? Please Lord, hear our prayers...
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