Coma now

Hospice nurse Karen came today. She described Ed as being in a coma now. His blood pressure is way down, and she felt that the highly-concentrated oxygen he had at his nose is no longer necessary. He has been breathing regular room air since about 3:30 today. Karen turned off the oxygen concentrator machine, and we all were immediately struck by the quietness in the house without its noise that we had so gotten used to 24 hours a day. Within about a half-hour, his breathing became shallow again; however, this evening he is back to deeper breaths. In fact, I described it as him snoring as he always has except without the grating noise. Karen says he must still have some unfinished business inside of himself that he is still working through, and so he is still hanging on. Yet once again she told me to wait until tomorrow to refill his bedtime pill prescription even though as of right now there is only one pill left, that being for tomorrow night. I had to pause when Karen looked for my agreement with removing the oxygen, but I thought about what his living will and his health care power of attorney say, as well as our conversations, and I gave my consent.

Judi was in and out today. Caregiver Nicole came early, but Karen had said we should just leave Ed be and not bathe him today. Still, I think Nicole has become attached to Ed and us; she stayed for two hours anyway. Becky, Debbie, Melissa and I had supper together, and for a change they let me cook--didn't do much, just a quick use of the grill. Debbie's husband Tom was here briefly, too. Becky will shortly be heading home to her own family for the night, and Sherry is lodging at the Drury Hotel tonight (she works for Drury) where son Jeremy, in from St. Louis, is also staying. So tonight with me are Melissa and Debbie. I am continuing to give Ed his pain medication as a safeguard in case he can still feel pain, though Karen thinks that unlikely.

Semi-comatose

Once again, the medical terminology becomes part of our vocabulary. We believe Ed is in the stage known as semi-comatose. The hospice nurse says he may be hearing our voices and may even recognize them, but he is probably not processing what we are saying. His eyelids are half-shut, and his eyes are glazed and unfocused. He looks like he is sleeping non-stop, but he does wince when we try to move him to a different position so he must still feel pain. Speaking to him now draws no response. His breathing was very shallow this morning, but this afternoon after caregiver Nicole gave him a partial bath and we re-positioned him, his breathing became deeper again. The hospice nurse is surprised that he is still with us. She described his state now as being half-way down a tunnel, and he is slowly making his way to the end of it. The hospice chaplain called today and said the team had discussed Ed and us today and agreed that this happened very fast--yet often I feel like this is dragging on needlessly, especially if there's a chance he is suffering. Nevertheless, I set my alarm to give him pain medication every 4 hours through the night, and Melissa has been good with giving me timely reminders about what I need to do for him during the day--administering the few meds, changing the water in his oxygen concentrator, even updating the blog. Judi provided another delicious supper today. We are a crew of four again tonight--me, Melissa, Sherry, and Debbie.

A quiet day

We have all had a quiet day today. Ed is mostly sleeping; his breathing is at times very shallow and at other times something like panting. The few times his eyes have been open they look unfocused and dazed. When caregiver Nicole came to give him his bed bath, he winced as she moved him. We suspected a while ago that there may be a lesion on the back of his neck, but then it wasn't really bothering him, so nothing was done about it. Now I think it is bothering him, plus his neck has to be sore from having his head positioned to his left for so many hours to try to keep the mouth secretions out of his throat. He doesn't have the strength to lift his head on his own today.

Next door neighbors Bill and Ann Morgan stopped by this afternoon. The hospice nurse called to check on him, and we could have had the hospice home health aide come bathe him, but I chose to stick with Nicole rather than introduce another stranger into his world. Ed's brother Bob called tonight I suspect more to check on me than anything else. Debbie is staying again tonight with me, Sherry, and Melissa. I've had a rather rough time this evening--this is so unfair; Ed just did not deserve this to happen to him. Frankly, I have prayed that tonight is the end. I can't tell if Ed is suffering, but if he is, I just don't want that for him. I want him to be at peace, and if I can feel that he is, then I think I will be OK.

Flight fright, quiet time for Ed

I mis-spoke "majorly" when I wrote last night that Melissa's flight was getting her here around midnight. She flew from Cedar Rapids to Chicago O'Hare, had to rush to board her flight to Columbus, the plane pushed away from the gate, and the next thing she knew the cabin went black and the pilot was announcing "Evacuate!" She was the second person down the shute at the back of the plane. The pilot had spotted smoke and saw ground crew running away from the plane. Turned out the smoke came from the vehicle that pushes the plane from the gate, and the crew returned with fire extinguishers, fire trucks came, the passengers were led back into the terminal. As you might guess, she was rather hysterical and called Mark immediately. Once she calmed a little, she called me. United eventually announced that the passengers could board a flight that was going to Columbus, then Dayton, but then that plan was cancelled. She re-booked on an early morning flight. Meanwhile, I called my cousin Dot who lives not far from O'Hare, and after a few phone calls among the three of us, Dot and Jack picked up Melissa, took her to their house for some food and sleep, and delivered her to O'Hare this morning. She got here around 9:30 a.m.

We think Ed heard her tell her tale to him. He wasn't passing out smiles today and slept much of the morning and into the afternoon. Caregiver Nicole got him awake, however. She bathed him and changed the bed linens, chatting away with him. Afterwards, he stayed awake and occasionally followed a voice or a face with his eyes. The coughs continued today but they are mostly feeble attempts. Father Brosmer from St. Cecilia came and anointed Ed for the final time. This was Ed's third anointing of the sick, but this time he did not participate in the prayers since he isn't speaking. A hospice nurse called to check on all of us both during the day and this evening. I have cut the "hired help" back to just Nicole from 4 to 6.

Judi cooked tonight, and grandsons Josh and Robby were here as were Debbie and Tom. Overnight tonight we have Sherry and Melissa, of course, plus Debbie.

Active dying

It's odd how the hospice terminology becomes part of your vocabulary. Today we saw further signs of Ed's downhill road. His urine became red. Hospice nurse Karen says that can happen, it's not unusual. He is probably bleeding from the kidney and maybe the liver, and that blood finds its way to the catheter. His cough, while minimal and sporadic overnight, became more frequent early this morning, so I called hospice for advice. Turning him on his side only helped for a little while; he just doesn't have the strength to cough the junk out of his throat. We are now using atropine drops, which are normally eye drops, to try to dry out the secretions that are accumulating, and we now have a suction machine, but so far we haven't had any luck clearing up the congestion in his throat. Karen sat us down (Sherry, Becky, and me) to tell us we are in the final stages, otherwise called active dying. She says it could last 12 hours or 3 days; much depends on Ed's willingness to let go--and ours, because he hears and senses how we feel. The hospice chaplain spent an hour with us today; she was comforting and reassuring to him and us. Melissa was able to get a flight tonight, landing around midnight.

Despite his condition, Ed had occasions of acknowledging us, even giving me an emphatic "No" when I asked if the last suction attempt made him feel any better. He held my hand pretty strongly for a while this evening. My sister Marie called, and he listened attentively as she talked to him. Karen advised us to allow periods when just one of us is beside him and times when we all leave him alone. She says Ed will choose the situation he wants for his last breath, whether that be with us around him or him being alone. We can't know how he wants it to be, so we have to allow for times of all possibilities. Judi is here awaiting Melissa's arrival, and Debbie and Sherry are here for the night, so Ed and I have plenty of company.

He just amazes me

Sometimes the man just amazes me. When I gave him his pain medication at 5:45 a.m. today, he opened his eyes and smiled at me. Throughout the morning and afternoon he opened his eyes (with their morphine glaze, as I call it), seemed to try to focus, responded to health aide Nicole when she arrived, watched her as she bathed him and changed the bed linens (with him in the bed--boy, she's good). When I got home from church announcing "I'm home you lucky person," he gave me a big smile. He snoozed now and again, but I described his occasional seeming alertness between 6 a.m and 1 p.m. as being 5 times the amount of activity that we saw in Saturday's 24-hour period. He opened his eyes and gave 2 big smiles when he saw his brother Bob, and he seemed to acknowledge other visitors as well. He even answered hospice nurse Amy with an audible "yes" along with nodding his head. Several times today he gave slight nods of yes or no to me. It even looked like he was interested in a few of the golf shots on TV. We were told before that this process was a series of ups and downs on a downhill road, so today must have been one of those ups after yesterday's down. What capped the day was this evening as I tucked my index finger into a wet washcloth to bathe his mouth and he bit me--hard enough to leave teeth marks and it hurt! I yelped, and he opened his eyes wide then gave me a huge smile.

Once most of the visitors left, he was obviously exhausted, but sleep didn't come easily. I had questioned nurse Amy about a cough he developed about 2 p.m. She still doesn't hear any fluid in his lungs so she really didn't have a satisfactory explanation for the cough. I guess he just doesn't have the strength to cough out the phlegm in his throat, assuming that's what it is.

Today's parade of visitors--besides brother Bob and nephew Bobby, daughters, son, and a sprinkling of grandkids--included Frank Barone, an old friend and neighbor from his years living in Upper Arlington when his kids were growing up; our next-door neighbors Bill and Ann Morgan; and our former across-the-street neighbor John Wade. So once again it was a busy day. Sherry and Becky are splitting the night patrol tonight with me stepping in at the appropriate hour to administer the Roxanol. My alarm clock has never before gotten such a workout in a single night.

Unresponsive and sleeping

Today, Saturday, there is a noticeable decline in Ed's condition. We have not been able to rouse him. He has either been sound asleep and snoring or lying there with his eyes closed. Only a few times today did he open them, once when the aide Nicole was cleaning him up and brushing his teeth, once when I said Hi and he smiled, once when I had finished explaining that I completed our cemetery plot purchase today just as he had wanted everything to be, once when the hospice nurse spoke to him and shook him, and a few brief flickers just on his own. He did not respond to questions or touch except for twice when Sherry gave him ice chips and each time I have administered the pain medication. The overwhelming number of possible medications to give him based on signs and symptoms is now down to just 4: one to quiet him if he's restless, one to settle him if he's more agitated, one for pain that he is now getting every 4 hours on the assumption that there is pain, and one to give if the rash or itch allergic reaction returns. His body wants no food or drink now and we are not to push that on him for fear of choking. I agree with the nurse that we are seeing the effects of the cancer taking over. His blood pressure is OK, his color is good; his heart rate is fast, but he is breathing OK. Our best guess is that we have a couple more days with him.

My two 24-hour non-stop hired help periods were done at 1 p.m. today. As of 3 p.m. we were on the "regular" schedule of help from 8 a.m. to 12 noon and 3 to 7 p.m. As it turned out, there was very little to do to care for Ed today, and I couldn't come up with much in the way of cleaning or laundry chores for the aide to do. We'll proceed with the regular schedule tomorrow, then see what makes sense after that. Tonight both Sherry and Judi are staying in case Ed needs to be shifted in bed or needs attention that my back might not handle (although my back really is feeling much better).

Becky brought supper again today, and Tim brought Chelsea, Jake, and MacKenzie; he also took care of a couple of handyman chores that surfaced. Debbie and Annie and Tommy visited, and Tommy cut the grass. Tomorrow we are expecting Ed's brother Bob and son Robert (Bobby to us) to be here.