June 11 -- Round the Clock Hospice Care for One Day

I barely slept Wednesday night. Of course, I was worried about having left Dick with the hospice nurse who barely seemed like she should be left with patients. And there was a new band of severe thunderstorms every hour or two all night. That was all on top of the fact that I'd barely slept for the previous 48 hours and was still recuperating from jetlag.

I finally got myself out of bed Thursday morning and got to the nursing home, knowing there would be a shift change of the round-the-clock staff from hospice and wanting to be there to greet the person who would stay with him for the day so that I could go back to work. Could not figure out how I could possibly manage to think at work, but I just used up all of my vacation time and don't have a lot of sick time accumulated yet. Still, I needed to see Dick and meet the new caregiver for the day shift. Our regular hospice nurse, Mark, who has visited Dick every week for months now, had explained that there would be a nurse with him during the night and a certified nursing aide with him during the daytime hours.

When I got there, Pamela, who had seemed such a nightmare the night before, actually seemed to have everything relatively under control. She told me she had changed his briefs twice during the night and that otherwise, he had slept pretty well. It was almost time for breakfast so she went to look for an aide who could lift him into his chair to go to the dining room.

Dick could only nod yes or no to my questions, but it was clear that he understood the questions and knew what he wanted to say, just couldn't get the words out. I took the opportunity, with her out of the room and his new roommate apparently already at breakfast, to tell Dick what I'd realized the night before I needed to tell him: "You have been a wonderful husband. I know you love me, even if you haven't been able to tell me that lately. I love you too and I have never loved anyone else and I am going to miss you so much. Kevin loves you, too, and you have been the world's best father to him. He's grown into a fine young man and you should be proud that you've helped to make him that way. I know you told someone yesterday that you want to die. I don't blame you for that. The doctors tell me you're not going to get better. There's nothing they can do. So when you are ready to go, whether it's now or a year from now, I will understand. I'm going to be here to take care of you as long as you need me. I love you." Dick listened carefully. He can no longer really see but he he can hear. He just nodded his head. He didn't seem to emotionally react, but I know he heard me and understood me. He was pointing to his face, so I went to his old room and got his shaver to help him shave.

At that time, Pamela, the nurse, came back in with an aide, and we got Dick into his wheelchair and to the dining room. I sat down to feed him and Pamela sat to one side, acting like I was in her way. He was able to eat a little bit of oatmeal, half a slice of bread, and a little bit of milk. When we took him back to his room, Mark -- his regular hospice nurse -- was there to check on him. I really like Mark a lot. He is caring and warm and competent. He touches Dick when he talks to him and he speaks directly to him with respect. I was relieved to see him. About that time, the new daytime caregiver also arrived to relieve Pamela for the day, and I was glad to see Pamela leave. I think the new caregiver's name was Mary, though I admit to not paying enough attention to that detail.

Mark said that because Dick was so alert, able to sit up in his chair and eat a little bit, they were going to discontinue the round-the-clock watch as of 8 p.m. Thursday evening, after Mary's shift ended. I hoped that would be okay, but after dealing with the stress of Pamela, I was okay with it. I liked Mary a lot and was happy she would be there. I left for work, tired but feeling like maybe this would be okay today. I met my co-worker at a nearby restaurant to catch up on what had happened since I'd left two weeks earlier on vacation. While we talked, I had a call from the hospice chaplain saying that Mark had reached him and asked him to administer last rites for Dick. I confirmed I'd requested that the day before -- Dick's Catholic and I'm not -- and he said he'd be at Dick's place in about half an hour. I hurried through the meeting and got back to Dick's room about 1 p.m.

Dick was sitting in his bed, with a food tray in front of him. I told him that the chaplain was coming soon, but Mary walked in just then and said he'd already been there and left. Dang it. I had wanted to be able to talk to him. Oh, well. I helped Dick eat some mashed potatoes, but he didn't want much of those and pointed to the Boston cream pie on his tray. He ate every bite of that! He could clearly still relate to his surroundings, understand what is happening and say what he wants, even if it's only with pointing and nodding. He doesn't seem upset about anything other than not being able to get up to go to the bathroom. Mary said she had gotten him into his wheelchair and pushed him several times around the hallways to give him some "exercise." Since the latest fall, he can no longer use his feet to move the chair himself but he doesn't mind being pushed now.

Feeling he was in good hands, I left, unbelievably tired, went home and slept for 3 hours and then had some dinner with Kevin at home. I so wanted to go back to sleep but knew I wouldn't be able to sleep, knowing he was there alone and wanting to be there when Mary left so I could make sure he was okay. I arrived at 8:03 p.m. but Mary was already gone. I had missed her and would have no way to know how his afternoon and early evening had gone.

He was quiet, clean, and in his bed. He seemed comfortable, but his mouth just stunk. He is always so fastidious about his mouth. That morning, I couldn't find his toothbrush in his old room and had asked an aide about it. Because he was in a different segment of the floor in this new room -- where they had decided to leave him and not move him back, thank goodness -- nobody seemed to know where his things were or who was in charge of helping him. The aide had promised to find a toothbrush and help him brush his teeth. But it hadn't been done. I went to the station desk to talk to the nurse in charge for the evening. It took me a while to find someone and when I finally did, I just told them I needed to make sure that they were watching out for Dick, since I'd been there for an hour and hadn't seen a soul. They told me hospice was in charge of him.

Tears came to my eyes. Apparently, Mary didn't check out with them when she left at (or before) 8. They hadn't been told that the 24-hour watch was over and they were supposed to be watching over him. They didn't know he was now using briefs and needed to be changed. They did find a toothbrush and handed it to me, but I told them he didn't have any toothpaste, that it wasn't in his old room any more. They promised to look for some, but never did. I asked whether they'd been putting the neosporin on his head wound as ordered, but I don't think I ever got an answer for that one, other than that hospice was in charge of everything now. I emphasized again that hospice wasn't there and that they needed to be taking care of him. I asked them to send an aide to change his briefs. They seemed shocked that he needed this. The nurse in charge seemed shocked that he needed so much help and said he was fine the last time she saw him over the weekend. Apparently, she hadn't known about the latest fall. By now I was trying desperately not to sob, knowing I was going to have to leave him for the night in the hands of people who didn't have a clue who he was or what was happening with him.

I called Kevin and he brought some toothpaste over and I brushed Dick's teeth for him. He was able to spit when I told him and not swallow the toothpaste, so it is clear he can still understand directions and follow them, when they're simple. After an hour, an aide showed up to change his brief. She was nice and did a good job with him. I asked her how often she'd be checking on him overnight. She said every 2 hours and that was reassuring.

Knowing he'd probably sleep all night, Kevin and I reluctantly left him. Outside, Kevin told him that he had told Dick he loved him and he was sure Dick had said, "I know." Once home, Kevin told me that he was regretting all the times over the past several years that he had told Dick he would stop by to see him and hadn't done it. I told him that we all always have regrets and guilt about what we could have done or should have done, when someone dies, but that he had done all he could and was not to blame. I told him that Dick understood and never blamed him. I also told him that's one reason I had suggested he start counseling -- Kevin has an appointment with someone next Monday -- because he is going to have lots of thoughts that he needs to work out with someone as he comes to grips with losing his father. I told him I'm going to find a counselor again now too.

It is now 6:30 Friday morning and I am getting ready to go back, hoping against hope that all is okay. I'm going to try to hang out there until Mark, the hospice nurse, shows up to see Dick again this morning.