Tomorrow is one week

It's hard to believe that tomorrow will be one week since Ed died. I'm not sure everyone who would want to know of his death has even found out yet. However, cards are coming each day from all over the country, and the Dispatch.com guest book now includes messages from our Penn State friends who live far and wide. I even had a card and note today from Ed's secretary from probably more than 30 years ago; she said he was the best boss she ever had. Amazing how word does spread.

I started to write my thoughts about the viewing and funeral yesterday, but then I couldn't bring them together. So I'll give it a try now. The guest book at the funeral home has exactly 100 names in it. Ed would have liked the fact that I counted. It's something he would have done. We estimated there were 50 people at the house after the funeral, again estimating a crowd size was something he always did. I had carefully selected the music and readings for the Mass of Christian Burial, and for the most part the priest and choir followed through. The choir did a beautiful meditation, almost a Gregorian chant-like piece, after Communion that I didn't know about, but I appreciated the words and music. One thing I did not understand was the direction Father Brosmer's homily took. It started out fine in praising Ed's life and offering comfort to us, and I understood the ultimate message of encouraging us to do something good in memory of this good man, but when he launched into a litany of sorts of drastic sins and misdeeds that should be corrected, that I found out of place. My sister said maybe he has a standard funeral homily and he only adjusts the opening for each occasion. If that's true, I need to get on the Bereavement Committee at church and forewarn people! (That's an attempt at humor, meager though it is.) I asked my cousin Carole and her husband Ron Lapinsky to bring the gifts up to the altar during Mass. Besides the fact that Ed really enjoyed talking with Ron back in January at my Aunt Lou's funeral and that he knew how much I think of Carole as my big sister, Carole's frequent e-mails were comforting to both of us. I saw their participation at the Mass as a way of thanking them for their support and for traveling to be here. I'm also glad that I named honorary pall bearers. Ed decided he wanted six of his grandsons as pall bearers, and I'm very glad that Josh, Jeremy, Rob, Tommy, Kurt,and Kyle were willing, but I just knew, had we thought of it as we talked about what he wanted, that he would have wanted to show his honor and respect and love for his close friends, too: his life-long friends Larry Clements and Tom Gibbons from the Cincinnati area, and his closest friends from Norwalk, IA, Tom Greteman, Dave Hixenbaugh, Duane Frideres, and Joe Zerfas.

I really like the place at the cemetery that I chose for him, very near the tall flagpole and monument to veterans. Marie (my sister) and I went to the cemetery Thursday--she did not want me going there alone my first time. I was OK there. The gravesite was leveled out already and the flowers were still fresh-looking despite the heat of the day. We were lucky to have had a gorgeous, comfortable day for the funeral Wednesday.

Having everyone come to the house for a light lunch was exactly the kind of gathering Ed enjoyed--informal with good food. The informality at the viewing Tuesday evening was also the way he would have liked.

I read something online about the stages of grief, a different description than the Kubler Ross stages of grief that many people know. One I found seemed to fit me better: Numbness, Disorganization, Reorganization. I'm definitely in the numbness stage right now. I'm trying to go about the tasks of settling the estate in a methodical way, starting with preparing for my meeting with the estate attorney on Monday. I occasionally break down and ask no one in particular "Why" and "How do I go on." I can't stop thinking how unfair this is to Ed, to me, and to our family. The next stage is when someone completely loses herself to the grief, then the final stage is pulling yourself back together and finding your way in life. Although there are these stages, there is no timetable for when they hit or how long they take to get through.

I'm suddenly very tired--perhaps from the muscle relaxer I took 2 hours ago because my back has flared up again pretty badly. Thanks to all of you who came to the viewing and/or funeral. It means a lot to all of Ed's family to know how much you care. Thank you all for reading the blog. Even though I'm not necessarily writing about Ed now, this blog still makes me feel closer to him. I hope it does for you, too.

Monday thoughts

It seems odd to be writing in daylight. The hospital bed, oxygen and related equipment, suction machine, wheelchair, bedside table, linens, and shower chair will all be picked up this afternoon. I signed the final paperwork at the cemetery this morning. Yesterday afternoon I finalized the funeral home arrangements and I'll meet with Father Brosmer in a bit to choose music and readings. It all seems somewhat surreal.

When Melissa and I went to Sunday Mass, we saw that both the Norton Rd. and Sullivant Ave. accesses were open into the parking lot at church. Road construction around there is awful. Same is true by the funeral home. Norwich St., where the funeral home main address is, is closed. You have to turn from Main St. in what's called Old Hilliard onto Center St., but that's good because one block later is the parking lot for the funeral home, on the left, actually at the corner of Center and Columbia, beside and behind a white house. The main entrance to the funeral home is on Columbia St.

The obituary was in today's Columbus Dispatch. There are two minor errors (Northwest Financial instead of Norwest Financial and home instead of him), so of course I was a little disappointed about that because I regarded that obit as a genealogical resource of the kind Ed researched about his family these past few years, plus we all know how obsessive I am about editing and proofing. I didn't realize there would also be an online registry book associated with the Dispatch obit for people to express their sentiments. The Cincinnati Inquirer will run an obit Tuesday morning. I'll send a full article for the Norwalk, IA, paper later this week. (We still get that paper.)

I'm hoping for at least a little cooler temperatures for Wednesday morning; it's supposed to be 95 here today.

It's over

By now, some of you have already heard the news. Ed passed away at 2:25 p.m. today. I had gone to the pharmacy to pick up a refill on his bedtime medicine because we had only one pill left, and I had just picked it up and put it in my purse when my cell phone rang; it was Judi telling me to come home. At that point he still had a few labored breaths left in him, but before I could get home he took his last breath. Hospice nurse Amy (who had been here a few times and came to prepare him for the funeral home pickup) said she was convinced that he waited for me to be out of the house, to spare me.

Ironically, a different hospice nurse came to check on him at 11:30 a.m., and she told us that with his breathing being so strong, we were not looking at hours but maybe days. She urged us to take care of ourselves to be able to bear up a little longer, that he would go when the time was right for him. She also said he could prove her wrong--and he did. Ed got his wish. He died at home. The nurses all said he was comfortable to the end and that we had taken very good care of him.

Writing this blog that he started has been very good for me, a kind of therapy I guess. I hope I haven't "grossed out" anyone with the details, but it is also kind of my journal or memory book of all that has happened. I feel close to him every time I look at it, especially looking back at those first entries that he wrote himself. He wanted me to keep updating it.

I thank you all for your thoughts and prayers through this ordeal. You know Ed appreciated each and every one of you showing your concern. We do have some arrangements decided, so I'll list below what I think might be of interest, especially to those of you who have said you will be trying to come for the funeral.

The viewing will be Tuesday, June 19, at Tidd Funeral Home, 5265 Norwich Street, Hilliard, OH. Private family time from 5 to 6 p.m. Viewing for visitors 6 to 8 p.m.

Mass of Christian Burial Wednesday, June 20, 10 a.m. at St. Cecilia Church, 434 Norton Road, Columbus (corner of Norton and Sullivant--sorry, there's horrible road construction going on and only one lane open on Norton into the church parking lot). Burial will follow at Sunset Cemetery, 6959 W. Broad St., (technically Galloway but it's really Columbus still) in the veterans' section.

Afterwards, everyone is invited back to our house, 6344 Thorncrest Dr., just a couple of miles from the cemetery.

There are numerous hotels in the vicinity of our house. The closest are:
Best Western, 1133 Evans Way Ct. @ Hilliard-Rome Rd. (The locals refer to this street as Rome-Hilliard Road.)
Country Inn & Suites, next-door to the Best Western
Microtel, 5451 Feder Rd., behind Handel's Ice Cream store (I'm not familiar with this one but it looks fairly new)

A Hampton Inn is also close by, near the intersection of Hilliard-Rome Road and Trabue Road; several others are at Hilliard-Rome and Renner. Renner and Trabue are actually the same street, just named differently on each side of Hilliard-Rome.

Contributions in Ed's memory may be made to one of the organizations below. Please enclose a note explaining that the donation is in memory of Ed Giesman and an acknowledgement letter should be sent to Mrs. Joan Giesman, 6344 Thorncrest Dr., Galloway, OH 43119. The organizations are as follows:
Purcell Marian High School, Alumni and Development Office, 2935 Hackberry St., Cincinnati, OH 45206
OR
Xavier University Annual Fund, 3800 Victory Parkway, Cincinnati, OH 45207
OR
Home Reach Hospice, c/o OhioHealth Foundation, 180 E. Broad St., Floor 31, Columbus, OH 43215-3707. Make the check out to OhioHealth Foundation, but be sure to say in your note that the contribution is specifically for Home Reach Hospice.

I don't mean to imply that anyone should make a donation anywhere, but since I have been asked, now anyone who wants that info has it. Also, if there is some other way you prefer to remember Ed, please feel free. For us it has always been enough to know we have strong bonds with family and so many dear friends.

I don't know if I'll write more in this blog; probably I will. But not tonight. We'll see if I wake up every 4 hours still.

Love to you all,
Joni

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.

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

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