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.

Busy day

It seemed like the phone and doorbell never stopped ringing today. We met Ed's regular weekday hospice nurse and social worker, plus the supervisor from "Right at Home" came by. They each talked with us about Ed's condition and how they can best serve our needs. While I was sometimes displeased with some of the hospice hospital team, Ed's home team seems right on top of things. In particular, the nurse, Karen, had some insights into some of his behavior. She says the fingering of the bed linens and his shirt is an outward manifestation that his mind and spirit know and feel that he still has some things he wants to do, but his body is too weak to physically do them, so he gets agitated. She suggested that the hospice chaplain could help with this, even if Ed doesn't talk but just listens. The chaplain can put him at ease about letting go. I have been trying to think of the things he said during the last few good weeks that he wanted to accomplish; perhaps if I can get some of those done and tell him they're done, he'll feel better. Otherwise, the nurse identified which of his many medications to give him when he is agitated.

The stock of medications is overwhelming. We began at home with everything in pill or caplet form, but today Ed had some real trouble swallowing, so the hospice nurse re-called several of the prescriptions in to the pharmacy to get them in liquid or suppository form (and isn't Ed going to love those suppositories!). So now we have a kitchen counter area covered in medicine bottles, some of which we will probably never use again. At least the cost is all covered by hospice (i.e., Medicare's 100% coverage of hospice services).

Sherry flew in from St. Louis tonight and will stay a few days. Becky cooked for us all again tonight, and Judi and Debbie and Annie were all here, too. Ed pretty much ignored all of us most of the day but he seemed tickled by the social worker's compliments on his beautiful smile. Yes, he talks with the new people we are meeting more than with us, but Karen says that he is conserving his energy to use in just such situations as meeting everyone because he hears and understands everything we are saying to him and to each other, therefore he prepares himself for the next arriving person.

As I said above, I like Karen. She listens and questions and tries to piece things together so that things make sense to us. She trusts us to be observant and acknowledges that I know Ed better than anyone. She planned to call Dr. Mitchell, Ed's oncologist, to develop a plan for control of increasing pain that does not rely on just increasing doses of Roxanol (morphine sulfate) since she doesn't want him developing the rash again or having any of the other side effects he has had from narcotics.

It's been another exhausting day--even my chiropractor gave me more of a workout in this morning's visit. I hope for a few moments of relaxation over the weekend.

Home

Ed was enjoying his baked ziti & peach crisp lunch so much that we made the ambulance guys wait for him to finish before bringing him home today. We were home by 1:45 and waiting on the front porch to welcome Ed home were Judi, Becky, and Lori, his caregiver from 1 to 11 p.m. (long shift!) He settled right into his bed in the family room, smiles all the way around at how the room was arranged. He said it was good to be home. He hasn't been very responsive today either in the hospital or at home, another sign that things are going downhill, I'm afraid. However, here it is, well past his recent bedtimes, and he's still up watching the Reds baseball game. Lori is terrific. She is actually a therapeutic massage therapist so Ed and I have each had the benefit of her expertise. She has even worked on my back problem and got rid of a little of my pain. Wish she could stay!

A Hospice nurse came this evening to set up Ed's meds and give us some basic instructions on tending to him. It's up to me to give the meds. The oxygen concentrator, which takes room air and converts it to 90-some percent pure oxygen that then goes into his canula, is a little noisy, but Lori tells me it's a quieter one than some she's familiar with. Hopefully it won't keep us up during the night.

All in place

The equipment was delivered today and I got an education in operating an oxygen concentrator and oxygen tanks. An ambulance will bring Ed home tomorrow at 1 p.m. I have hired an agency to provide caregivers 24 hours a day for the first two nights (Thursday and Friday) and then go to an 8 a.m. to 12 noon and 3 p.m. to 7 p.m. schedule until we see how things are going. Ed's daughters are still insisting that somebody will be with us practically 24/7, so even when no hired caregiver is here, most likely a family member will be here or at least readily available. Since my back doesn't seem to be in any hurry to repair itself and I'm frequently in pain, I welcome the help.

Ed was not talking much today. Oddly, he responded to the hospital staff readily but not to any of us. I asked him why when we had a chance to be alone and he just shrugged his shoulders. At least that was some kind of response. When he did talk, he would start a sentence then stop in the middle of it and be unable to come up with how he wanted to finish. He had 2 doses of Roxanol today for pain and as best I could tell the only side effect was sleeping. The rash that developed after yesterday's minimal dose was gone by this morning, so I'm glad about that. Maybe he can build up a tolerance at the low dose so that if a higher dose becomes necessary, he can tolerate it better.

Homebound in the works

The plan is for Ed to be discharged Thursday afternoon. I think I figured out why Hospice is pushing for discharging him then: Medicare pays for 5 days of inpatient hospice care. Thursday will be Ed's sixth day in hospice. They agree to accept Medicare's assignment, so in essence they don't want to miss a day of being paid by Medicare. Home hospice is fully covered by Medicare, so for Thursday having Ed at home continues Medicare's payments. The necessary equipment will be delivered Wednesday afternoon. This evening, Robby and Kurtis, two grandsons, came to move furniture around so that we can accommodate the hospital bed in the family room, set up so Ed will be able to watch TV, watch the backyard neighbors, see out the kitchen window to our pretty backyard tree, and look up to the sky through the skylights.

Ed did not have a good night last night--very restless and little good sleep. This morning he was confused again, thinking he was on a boat and then that we were in China. He came around at mid-morning and even told me about the China thoughts, knowing they were not realistic. I decided he should have a dose of the narcotic Roxanol while still in the hospital so that the nurses and doctor could see its effects on him. Sure enough, about 1/2 hour after taking it he was asleep but grabbing the air with his hands. He slept deeply (which was a good thing) throughout much of the afternoon, but about 2 hours after the dose I saw the rash start on his forearms. When I left for home to supervise the furniture moving, he was already scratching at it. Tonight Judi tells me his right eyelid is drooping to half-closed. No word yet on a reason for that.

I have interviewed one home health care agency tonight and will talk with another tomorrow at the hospital. I will pick one of these two and start their services to coincide with Ed's arrival at home. I plan to have 24-hour care to cover the first 2 nights, then switch to two times per day, probably 4 hours each at first, then maybe back off a little from that if I'm better and things are going OK with Ed.

Guess I don't need to sign my name to this. It's obvious who is doing the writing. (That was a very poor attempt at humor. Sorry.)