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.)

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