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.)

Stable vital signs

Over the past 3 days, Ed's vital signs have stabilized to the point that today, the nursing staff barely looked in on him, only checking his blood pressure, etc., once this morning and not the rest of the day. The hospice nurse did check him in the morning as well. He was mentally alert all day but very tired and got in quite a few naps. The hospice social worker talked with me at length about getting him home. She wants me to set up home caregiving quickly. It seems to me that because he has stabilized, now they aren't so concerned about keeping him in the hospital while my back still hurts. Instead they are focusing on my hiring home help to supplement the few visits hospice nurses and aides make. I wish I had more time to do research on home caregivers, but I guess I have to make quick decisions. I'm back to being convinced that a lot of the fault of Ed's mental impairment -- and some of the signs the hospice material says are signs of approaching death -- came from the narcotics he was taking for pain. He has been without narcotics since Tuesday night last week, and he has been mentally OK since Friday up to today. He has back pain, but he rang the call button to get Tylenol several times today and he says that takes the pain from a 5 to a 2 (on a scale of 10), and he doesn't mind the 2 level of pain. I'd rather he had no pain, but once again the hospice nurse is pushing the idea of a narcotic, morphine sulphate (Roxenal) to stay ahead of the pain. I haven't personally spoken to her about it (Judi was there this morning and talked with her), but it will take some real convincing on their part to get me to agree to regular doses of Roxenal. Judi is spending the night with Ed again, and Debbie has volunteered for tomorrow night. David also said he could take a night. Ed's kids obviously don't want him to ever be alone in the hospital. Judi, Becky, Debbie and Annie, and David were all there at one time or another again today.

My chiropractor is doing his best to get my back in shape. I saw him this morning and will again tomorrow morning.
Joni

Sunday

Once again, Ed had lots of family around all day and a surprise visit from a friend who is our former across-the-street neighbor. He sat in a chair today for about an hour and had lunch while he was sitting there. He looked pretty good thru the morning and afternoon but by evening he was very tired. I was feeling a little better today back-wise, which made me think if I can keep improving over the next day or so and if I can find some skilled care help for at home to supplement hospice care, maybe we can bring him home soon. He would like that. I'll see what the hospice social worker has to say tomorrow.

I'm almost asleep at the computer thanks to taking the muscle relaxer earlier than bedtime. I'm hoping it gets me through the night and wears off so that I can start tomorrow driving myself.
Joni

Good day Saturday

Today Ed was recognizing his visitors and calling them by name, had a good afternoon nap, really enjoyed having his brother and niece visit from Cincinnati. (For those of you who know about Bob, he looks wonderful; if it weren't for having to tug his oxygen around with him, you would never know that he has been battling pancreatic cancer.) Ed even talked on the phone with Melissa and with his long-time friend Larry. Last night was not quite as good in that he tried several times to get out of bed and was restless, so he had some medication to quiet him. Thankfully, it did not carry over into today so that he could be clear-headed. He didn't eat much today, but he did have a few bites of a chicken sandwich at suppertime, the first sandwich he wanted in probably over a month. He was moved into a larger, more pleasant room tonight (Room 915), complete with a built-in fish tank. It's meant to be a room for two, but he's the only patient in it and so staff brought in a mattress and boxspring for Debbie and Becky to use tonight as they stay over. Last night, Sherry and Judi spent the night in makeshift spaces in his much smaller room, and David did the same the previous night. I went into the hospital this morning planning to ask for a nicer room for him, but the staff had already beat me to it and told me they wanted to move him to a bigger room. I think they saw how many visitors he has all day long and into the night and realized he needed more space. Ed did tire today with the steady stream and did ask for an hour of no-visitors time. We both took a nap in the quiet. Except for a sore back from being in bed non-stop, he has not really complained of any pain.
Joni

In Inpatient Hospice

As of Saturday morning, Ed will officially be a hospice patient. I chose inpatient hospice at Grant Hospital, so he doesn't have to move an inch, just stay in his same hospital room. He will still have care from the floor staff, but in addition, the hospice nurses and other staff will be seeing him, reviewing his situation, revising his medication needs based on what will keep him most comfortable. In other words, he will be getting lots of attention and consideration. Today he was lucid, able to talk with us, recognize that his family was there and even called me by name and hugged me, understand what was being said to him, though not able to identify where he was. Dr. Mitchell says although that looks to us like he's better, the fact is this is typical of the last days of a kidney cancer patient--kind of like a wave of little ups followed by bigger downs, with the trend being all downhill. Ed has already shown some of the signs of being in his final days, like yesterday's constant fiddling with the bed linens. Today he kept taking off his hospital gown until we finally left it off him and eventually got him into his own undershirt once the IV fluids were removed. (They were removed because continuing them would build up fluid in his lungs.) He frequently has rattles when he breathes as he rests. These things are signs of the diminishing of oxygen to various parts of the body as it prepares to shut down. On average, patients stay in inpatient hospice care 5 to 7 days. We were able to have inpatient hospice because I am in what is called "caregiver's crisis" because of my current back problems. After a week or so, a decision must be made again based on medical condition (his and mine) to either bring him home with hospice care (which is not all that extensive, with me, the caregiver, having most of the work to care for him at home with whatever extra help I can arrange) or, if he has only a little time left, take him to Kobacker House, a hospice house where people can spend their last few days, or take him to a skilled nursing facility where his same hospice team will look after him along with the staff there. So the decision-making is not necessarily over with, but I feel I made the right choice for right now. We would have preferred having him come home, but it just isn't possible for me to do that right now. I'm sure he understands that.
Joni

DNR & calling in Hospice

This morning it was obvious that Ed's deterioration is progressing much faster than I ever thought would happen. He was in a stupor all morning, and when he finally became somewhat awake, he did not acknowledge any of us who were there. Throughout the day he could occasionally answer a question from a nurse but was mostly hallucinating, grabbing at the air, speaking nonsense, constantly fiddling with his hospital gown or the bed sheets. He did eat when fed and turned his head away and made a face when he'd had enough. Dr. Mitchell, the oncologist, says we are seeing the effects of the cancer, not the narcotic medication as I had convinced myself it was. He says there will be no improvement, only continued deterioration. It could be tonight, it could be days, it could be weeks, he can't predict but he anticipates that Ed's body will probably gradually shut down bit by bit. I agreed to the Do Not Resuscitate level under which Ed can still get antibiotics if needed and pain medication, in other words minimal sustaining efforts but maximum palliative care. We will meet with reps from hospice tomorrow to see what our options are and what it truly feasible. Originally when we talked about this eventuality, Ed wanted to be at home with hospice care. We will see if that's possible. He may not even be aware of his surroundings. For now, he remains at Grant Hospital.

I now have a muscle relaxant to go with my pain medication. So far I have remained clear-headed enough to make decisions. I know if he could say it, Ed would say Our Love to All.
Joni