Early Friday morning after I gave John his liquid meds, I tried to reposition his head a bit because he had started to lean over. I put the head of his bed down some, and he began to gag and cough, although not aware of what was going on. Mama grabbed me a mouth swab, and I raised the bed. It all cleared up, but I was scared. What if it happened again and I "killed" him??? The next dose I gave slower and kept a close eye on his reaction. Our home health aide arrived to bathe him and I was hesitant to put John through it. I was afraid he'd gag again or his arm/hand would be hurting. I was exhausted. Getting up every hour, half-hour, hour and a half was getting to me. I'd sleep hard between doses but with lots of interruptions.
His breathing was loud and close to sounding like his normal snore, and yet not.
The aide felt of John and thought he had a fever. Sure enough. His head was hot and face flushed. The thermometer read 102. Our nurse walked in and found me in flux about his bath. They both said it would help John feel better and cool him off. All went well until they turned him on his side to wash his back. He stopped breathing and when he was trying to breathe, it sounded like he was choking. I was a nervous wreck!! They worked quickly and got him on his back. He breathed better. They repositioned him with a pillow under one side and ice packs in six places around his body. His temp was now up to 103. We continued to wash him with cool water. His cath emptied 500 ml again.
The Hospice ladies could tell I was stressed and at my limit. The nurse said she would try to get me a crisis care nurse/continuous care until the end. Since he had a fever, his heart rate was 179, and very little air was actually getting into his lungs, she could justify constant care.
She couldn't claim "caretaker fatigue" as a reason for continuous care. The nurse's job is to get the patient comfortable and then leave. They can't just stay and stay.
John was breathing clearly since they repositioned him. I stayed in the room with him all the time now. Mama and Sharon were with me. A little later, we got the call that a crisis care nurse would be here at 4 p.m. and be relieved by another at 7 p.m. The second nurse would stay all night. We counted and verified pills and ml's of meds. John's breathing was hard but regular. Heartbeat/pulse 120+. Nothing in the cath. Temperature coming down. You could see the rapid heartbeat vibrating in his midsection.
John's brother sent him pictures of the kids for his birthday. The package came pretty early this morning. I told him "happy birthday" several times during the day.
I ate in the kitchen while the nurse sat with John. They will now dispense meds, wipe him with cool rags, monitor everything to give me a break. It was a weird feeling of freedom.
The second nurse came and the changing of the nurses took place; counting meds, giving info. They both told me there was a chance the request for them to be there would be denied. She would definitely stay for the night, but tomorrow could be a different story. After much discussion, we decided John's insurance would cover their service.
I dozed in bed while the nurse sat at the foot of my bed and used her computer. I hope she was playing cards or something fun. She said that people in John's condition with a few imminent symptoms could go for days. But I can't. I can't imagine days more of this for him or me.
Mama had been with us for about a week, and everyone was exhausted.
Midnight came and went. It was officially the day after his birthday. His breaths dropped from 16 per minute to 11. Around one a.m., the nurse said, "Here we go." John's breaths slowed, became more shallow, and I could hear gurgling between breaths. The sound came from deep within him. It was awful.
1:15 Mama came to the doorway. She got Sharon. The nurse started packing up her computer, notebook, and paperwork.
fewer breaths
I started counting John's breaths at some point, and made it to 65. I had my left hand under the back of his neck but I couldn't look at him. Every breath was with effort. I thought for sure every breath was his last. At 1:24, she pronounced him gone. There was one sharp breath that startled me. I yanked my hand away and maybe laughed....not sure...at my own jumping. What a jokester to the end.
I asked the nurse if she was positive that was the last breath and she assured me it was. His body may keep making noises but his heart had definitely stopped. John's biggest fear was for them to think he was dead but he really wasn't. He must have seen that episode on 'House.' He wanted me to be absolutely positive he was gone when they said it.
The nurse told me to do what I said I was going to at this time, and that was to go to the other end of the house while she took care of everything. I was shaking all over.
Mama put on a pot of coffee while Sharon talked more to the nurse. The funeral home was called and they said they'd be there within 30 minutes. small town service
The nurse closed the bedroom door and did her thing. A little while later, Sharon came out with a garbage bag. It had the catheter, bag, and bedpad. I told Sharon I'd take it to the outside trash can. The funeral home guys arrived, dressed in suits and ties, looking a little sleepy. I had to walk around the hurst to get to the trash. surreal. It was here for John.
I could hear the nurse telling Sharon and Mama to take care of the linens so I wouldn't have to deal with them. She brought in the left-over meds and destroyed them in kitty litter. We again had to sign to verify the count and that they were destroyed. Sharon bagged and trashed the linens.
A couple of cups of coffee later, I went to the extra bedroom where Sharon had been, and she and Mama slept in the living room. I slept hard, and when I woke up at one point, a heavy, heavy feeling set in on my chest when I 'remembered.' But I went back to sleep.
The day has been weirdly quiet. It's like everyone knows to be silent. One phone call, no visits. Sharon and I went to the funeral home to finalize paperwork. Daddy saw Sharon's car there while on the way to my house so he stopped.
John should be taken to Gainesville on Monday, and they'll let me know that he made it. Eventually he'll be taken to FSU for research.
We got lunch at Harvey's Deli. Mama finally went home after how many days here.......??.......Sharon is spending tonight. I called John's parents first this morning. Gave Tim an hour or so because of the time difference.
Sharon and I talked about the memorial service and wrote the obit. Facebook has a lot of wonderful posts about John/Dennis.
I'm sure I will think of more details and I'll add them. It's still very weird and unreal. I'm ready to be by myself and process.
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