Blog

It is 7PMish, and I am sitting in a better chair and writing this next to Susie. I have just read Susie many of the FaceBook posts and the emails we have received. I have tried to take a nap, and I also, for a while, halted the parade of people coming. The hospice chaplain and a CNA caring for Susie were moved to another day. We had already done the nurse and the social worker. Dr. Peter “Pete” Koper came by in the morning to sit with Susie before returning to Michigan. Susie is less responsive, but if you look, you can see a micro smile and that she hears you. Susie, I could tell, was happy to see Pete again.

At about 8ish, Anassa, the weekend nursing aide, visited after driving from Salem. She brought some flowers, and we sent her daughter a rose from Susie’s flowers. Anassa had a pleasant visit, and I took a picture. It was the first time I saw Susie smile today!

Next, David and Michelle Smith came to visit. We also connected with their daughter in NYC. We had a nice chat, and Susie was happy, I could tell, to have visitors.

Moving to the night before, I tried to sleep or stay awake, but I was unsure what the right thing was last night. I decided to sleep at 3:30ish, and Rosalie, the night nursing aide, watched me push the spare recliner into Susie’s room. She got me a sheet, and I did manage to sleep an hour or two. Rosalie was helpful all night.

After Pete left, Jennifer surprised me with breakfast. French Toast, scrambled eggs with ham, bacon and sausage. Excellent, and all my favorites. Grapes, seedless, for fruit. I took my pills.

The phone rang often, and I had to get to Target and acquire a charger for my Apple. The battery life is so long that I have never had to charge it in Oregon–I was always back to the house in time to charge it. I found a nice one for $30 and looked away from the official Apple one for $60 (plus having to buy the C-to-C USB cable). With that, I quickly returned to the hummingbird house. Susie was resting and seldom woke up. She can no longer speak–she is too weak to get the words out.

I read and tried to take a nap. Not much luck at that. When Jennifer, the weekday nursing aide, had all the residents sorted for the morning, she got me some towels, and I took a shower. Now the shower head was turned on and so when I started the water. It jumped and soaked me with cold water. I envisioned being hit by the shower head, slipping, falling, and then being done for. What a way to go! None of that happened, but it made me smile–I like to write, and that seemed an interesting story–I might fit that in somewhere.

Surviving the shower without event, I moved to Susie’s bathroom, shaved with the cheap razors I bought, and brushed my teeth. I only cut myself once. What was I thinking buying these wretched things, a whole bag?

Jennifer and I decided it would be good for me to get out for a bit. I had a nice sandwich and soup at Panera Bread nearby. I like the Almond Chicken Salad Sandwich and French Onion Soup. I had a spare bag of chips that Jennifer got on my return as a snack. It was good to get out for an hour or so. I did get two calls on various hospice issues while I ate and drove back. No rest for the wicked (MacBeth)!

As I said, I canceled more hospice folks and tried to use the time to get a nap. Once at the hummingbird house, I closed the door to the room and managed to nod off a few times. I often cannot sleep during the day. I am also stressed, as you can imagine, and that makes finding sleep difficult.

Today, I have to focus on the moment and ignore the future. Emotions come crashing in when wondering about next week or any future. It is better to stay in the moment than face the coming events. One step in front of the next. Jennifer worked with the social worker on final arrangements, which I cannot yet dwell on. It’s just too raw.

I did connect with the Theology Pub tonight, and they were happy to see Susie and me on Zoom.

I was also served dinner tonight by Jennifer and Louis (her husband, who also does a small shift, too). That, too, was a nice surprise. I watched a few videos on gaming to relax a bit. Shut Up & Sit Down was good today.

These are hard days, but another is now in the past. Thanks for reading!

Added later: For those who wish to know: Susie’s place at Allegiance Senior Care LLC, 9925 SW 82nd. Ave. Portland (Tigard), OR 97223; phone (503) 246-4116.

Dr. Peter “Pete” Koper has headed to a nearby hotel. He flew in today from Michigan to see Susie. Pete was Susie’s English professor, and they have stayed in contact for years. He was there when Susie was ill and saw that she graduated first while still in a coma. Pete was happy to stay with Susie today and will be back for some of the upcoming morning.

Going backward, I spent the day at the hummingbird house, keeping Susie company. We had quite a few calls, some FaceTime. Dr. Kulkarni, one of Susie’s first cancer doctors and a good friend, called and got a smile and a wave from Susie. The hospice folks from Serenity Hospice came by and offered to help me with my FAM paperwork and even offered to have people sit with Susie if I needed that help. They will be checking on Susie every day now. Susie is unable to safely swallow her meds, so most are discontinued. Comfort meds that dissolve in the mouth are being provided. Susie’s month is often dry, and Jennifer has swobbed Susie’s month often.

Again, Pete stayed with Susie for the early evening. I got sandwiches from Panera Bread for Pete and me while he held Susie’s hand. Dondrea and Z came by to visit too. I did two FaceTime calls to Barb and Leta (Susie’s sister and mother, respectively). Jennifer, the weekday nursing aide, turned Susie about every hour and helped me keep Susie comfortable. I had a few pieces of left-over pizza for lunch–excellent. I do not need too much food to make me sleepy.

I started the day at 7:30 and took some time to get started. I made the bed in case Pete wanted to use the house and finished packing a bag for a longer stay. I was on the road in Air Volvo by 9ish and arrived before 10ish. I had liberal coffee and some cold cereal with milk for breakfast. I slept well–I needed some rest.

Please know Susie’s condition is grave, and she has hours or days left with us. It is hard to write that, but the truth is better. While I write a story that is positive (just my style), Susie is fading, and I am here with her.

Returning to the narrative. Susie watched M.A.S.H. with me for part of the day. We listened to random music and then Elton John and the Moody Blues. When I tried to switch to opera, she woke up and let me know that was wrong. I laughed and corrected back to more Moody Blues. I brought some magazines to read as it is hard to concentrate, and they seem perfect for a distraction.

The FAM forms from Sedgwick were emailed to me, but I had to call the company as they said I had not responded to their call. Possible. Nike, and other large companies, use Sedgwick to review leave and like requests. This protects the company from mistakes, but it can be harsh for the employees. So I was holding Susie’s hand and the phone with the other. I answered all the same questions I had filled out on their website (no, really, the exact same ones and I even have a PDF of answers as proof), and they also asked if this was my first child (F**k!). I pointed out that my wife was dying, not that we were having a child (thus the need for the leave); I was polite but a bit cold after that. As I said, Serenity Hospice says they will take over filling them out for me.

I will try to email the forms on Thursday. I am fed up with Sedgwick today. Serenity Hospice has provided a PDF of the forms for Susie’s hospice plan. I will attach that to the Sedgwick case later.

I try not to be grumpy with this process, but that does not mean I will not share my experiences. This blog is about the truth of experience. I write about what happens and how it affects us.

Susie is now resting, and her vitals are improved. I am writing and will be up tonight to stay with her.

Thanks for reading and joining me on the journey. Not a journey we would have selected, but one that must be experienced.

 

 

I have included some information about dying in this writing. I hope that is acceptable. It is where we are headed and I wanted to keep to the truth.

I spent the night on the crash pad with sheets, a pillow, and a blanket in Susie’s room. Susie’s condition slightly improved, with her blood pressure improving and her oxygen level returning to 90+. Her heart rate is increasing, as expected in someone with little time left. Susie may rally yet, but I did hear the cough start, which is a sign of the next stage.

Aside: When Susie went into hospice the first time, there was a mandatory reading of a little book. It describes the process of passing away so a loved one would better understand what is natural and what can be done to prevent suffering. Serendy Hospice is already stepping in to keep Susie comfortable. A hard thing to read, but recommended when you have to support someone at the end of their life.

I slept only a few hours with Rosalie in to check on Susie every other hour. Susie has to be moved every few hours to prevent a skin breakdown. She is so frail now that this possibility will develop in a few hours, if not checked. I got a few hours of sleep, as I said, and Susie did not sleep much.

I was back up and tried to work for the shoe company from the social room at the hummingbird house. Jennifer, who starts in the morning after Rosalie, got me a coffee. I did manage to do a few hours of Zoom meetings, but more nurses and a social worker came and wanted my attention. Work is not going to happen.

I put in for Family Leave from Nike, which, when approved, is 100% and good for eight weeks. I have to use my paid time off (PTO) until it is approved, and then the PTO is refunded. I am familiar with the process. I contacted my boss, Brad, and he was helpful and supportive.

Susie was more awake in the afternoon.

I finally, approaching lunchtime, got to Target. I got more flowers (roses for Susie’s room) and a nice arrangement for the dinner table. I also aquired supplies to brush my teeth and so on. After returning, Jennifer explained the shower there, and I managed to make it work and not soak the place. I shaved and finished up in Susie’s bathroom. Susie smiled as I said it was like a vacation and all the hotel rooms we had done together. Good memories.

Jennifer made me a veggie pasta for lunch. It was hot and good.

I spent the afternoon mostly being quiet and answering people’s emails of support. Susie needs some rest. She is too weak to swallow. I was quiet and stayed with her until about 4:30. Jeiinfer and I agreed I should get some rest, and home was the best place for that. I kissed Susie goodnight; she looked tired and barely registered that I was leaving. They will call me in if needed. Jennifer will try again to see if Susie can take her meds; otherwise, we will have to stop them. A stroke is possible without them, and I am afraid likely.

Note, Susie has a DNR and orders that no heroic attempts are to be used to bring her back (you need both). She has decided no more needles or IVs and certainly no tube feeding. Please know that Allegiance can handle these options, but we said no.

Returning to the story, traffic sucked. I stopped by the local Mexican joint, Don Chilito, for dinner. A chili relleno and an enchilada for dinner took no time. I took the detour; 209th is close to TV Highway. The house smelled like a house that had been closed up too long (I was not there much since Thursday), and I aired it out. I did laundry and dishes, got the mail, paid bills, and all the usual human things. This gives you a feeling of accomplishment and makes you feel you have some control. It helps. I tidied up the spare bedroom. While still a messy place, it is a little better.

I found the previous hospice paperwork. I wrote this blog. My back hurts. I am tired. I will stop soon.

I have a bag packed and ready.

Thanks for reading.

For those who wish to know: Susie’s place at Allegiance Senior Care LLC, 9925 SW 82nd. Ave. Portland (Tigard), OR 97223; phone (503) 246-4116.

 

I had a vivid dream of a party, and I had to carry a huge box turtle to a pond to ensure it was safe while the party was going on. It had some baby turtles, too, making it even harder. I had to walk around the party and carry this turtle to safety, and I was sad that the nearby ponds might dry, so it would be at risk. I wish I had a car and take the turtles to a lake to be safe. The partygoers ignored me and let me do my task. At one point, I was crawling as there was so much partying I had fallen and was still trying to move to a pond with my burden. A strange dream.

With the dream, I dreaded that today would be hard. I began my Monday as usual with breakfast and liberal coffee made in my French Press. I have been drinking liberal coffee nearly every morning since President Trump was elected–as a liberal, I need to remember to be watchful every day; even my coffee reminds me. I drink the Equal Exchange brand packaged in Portland, Oregon. Yup, liberal. I sliced a banana into my cold cereal and poured skim milk on it. I carried all of this to my home office.

I started at 7AM to have time to read the emails and Slack channel updates for today and the weekend. I was ready at 8:05 for the first Zoom meetings until 10AM. I received a call from Michelle Nixon of Alliegence Senior Care with the nurse Brittany after that, and they told me that they believed Susie should be moved to hospice for Susie’s comfort as she was still losing weight and was having trouble swallowing. I agreed but wanted to speak with Barb and Leta (Susie’s sister and Leta). I decided to start the process, knowing that medical stuff always takes longer than you want, and soon called Barb to let her know, and she agreed.

I got a call back from Michelle Nixon. Susie was fading, and I should head to her ASAP. I showered, dressed, boarded Air Volvo with a change of clothing, but not my meds (!?), and headed out. I was disquieted and drove carefully, but I do not remember the drive. The hospice folks, Wendy, called me, and we made the initial connection. I was clear I understood the hospice process, and we had to just do the initial paperwork and process. It was a complex conversation in Air Volvo, but traffic was forgiving.

I arrived safely, and the start of hospice was initiated for Susie. Susie looked unwell and could barely wake up to acknowledge me, but there was now a smile–she was resting and knew I was there. I had already told my boss that I would be unfocused today and would try to work as a distraction if nothing else. I can put in for leave, but I will wait then things are more defined.

I called Leta and Barb on a three-way call on my iPhone. They were affected by Susie’s condition but were grateful to have a chance to see Susie, and we got a couple smiles from Susie. Susie rested some more, with Jennifer repositioning Susie every hour to prevent skin issues.

Susie’s weight has fallen to 65 pounds, her blood pressure is 57/85, and her oxygen levels have fallen to 90%. I spoke to Wendy from Serenity a few times, and a nurse will be here in the evening. Susie is considered an emergency hospice case. We want to treat Susie for comfort and leave her here in Alliegenace with in-room services.

I did a meeting and had lunch at the hummingbird house, pizza from the previous dinner–it was perfect. I then sat with Susie, who improved a bit, and Rosalie, the evening nursing aide, managed to get a few bites of dinner for Susie to work. Susie also had some more Ensure.

While all this was happening, Mariah drove from Portland to the Volvo Cave and picked up my meds I forgot to pack this morning. Mariah discovered the construction near the Volvo Cave and got to try the detours. Mariah did reach the hummingbird house after quite a tour. Thanks, Mariah!

Many folks called or sent messages. Thanks!

I was then sad to learn, in another unexpected text, that a good friend had passed away–making the day even harder. I will not cover the details here as it is the family’s story. Well met, Paladin! Travel well, Paladin!

I have now met with the hospice folks and listened and signed. David Smith brought Michelle and Cat by FaceTime to Susie while I continued with the paperwork. Thanks–perfect.

I have been writing the blog since early evening and until late.

A harsh day. A voyage one would not wish to take, but a passage that one must pass through. Be well!

Thanks for reading.

 

 

The Film Festival ends today. I was up early and showered and dressed, more like assembling my suit, and was out the door in the morning. I picked a gold-yellow tie with structures and diamond-shaped colored areas, sort of Carcosa–I think that will work for Mythos. Sunday morning had no traffic, and I soon entered Portland through Beaverton. I crossed to NE, found Sam’s Billards, and was a few forty minutes early instead of just on time.

I found a table upstairs while the event, The Cthulhu Prayer Breakfast, was prepared. Cody Goodfellow, the writer for the Space-private Sexy book I bought yesterday and started to read, Scum of the Earth, was the head priest. I started my blog with the plan of writing this morning at the event. I also met more writers who were selling their books. One, Katherine Kerestman, whom I had met yesterday and bought two books from, and Tony LaMalfa, who took my $10 to get his paperback, Forbidden Knowledge. I was able to start the blog before breakfast started. Some of my friends from the previous conventions and the Call of Cthulhu Role Playing Game (CoC) session on Friday joined me at my table, now in the proper alignment. Breakfast was served after a short chant by Cody, repeated by us, fellow followers of the unknowable gods. I tried to write some more, but the main events started. Tablemates were drafted for the choir, which did well considering they had never heard the hymns before, all to the unknowable gods and done in good humor and all of joining in between between drinks of coffee and bites of food.

Cody did, to my surprise, read a sermon. Cody was quite clear he was fed up with humanity and thought the unknowable gods should get those stars right soon and clean up this mess–my interpretation and memory of the sermon. We cultists, and people on the edge, are not the bad actors (until the stars are right); we did not make this mess.

I found a corner and wrote while others told stories, including the writers I had bought books from. Some of it was pretty good. I managed to finish my blog and find more coffee. The event closed with me wishing my friends the best–many I will only see again next year. Soon, I headed over to the theater for one more show, Glorious, 79 minutes from 2022.

The movie was about a man trapped with an evil demi-god in a dirty highway stop bathroom. It was excellent, and I was surprised at how they managed to make this work in a small space and with just primarily two actors and one just playing a voice; it worked. I was glad I had come on Sunday to catch this one. It was directed by Rebekah McKendry, Ph.D., who gave yesterday’s lecture on Cosmic Horror. I wanted to see her work. Wow!

Still in my suit, I boarded Air Volvo and headed to Susie’s place at Allegiance Senior Care LLC, 9925 SW 82nd. Ave. Portland (Tigard), OR 97223; phone (503) 246-4116. I left the festival early so I could hang out with Susie.

I had some bad moments on Highway 5 when I changed lanes, and the car in front of Air Volvo slammed its brakes. Air Volvo, auto-braking, and I managed to avoid the mistake by steering into the shoulder–I should have waited until the other cars were better spaced. Next, another car changed three lanes at once and exited Highway 5, passing by Air Volvo at less than one care length. Yikes!

I arrived. Susie was popped into her wheelchair by Anassa (the weekend nursing aide), and, with it being warm, we headed out to Metzfer Park for the last sunny day in the forecast (all ten days are rainy or overcast). Older kids and some younger ones were enjoying the warm day. Susie and I found a bench and were missed a few times by errant American footballs. We called Leta and Barb (Susie’s mother and sister, respectively) on a three-way video call on Facetime, and soon, we saw each other and talked about our day and how Susie felt, “I am fine.” It was fine chat, and soon, we rang off and toured the rest of the park.

Susie was placed in her bed, and I helped her to drink some Ensure (I drank a whole bottle of water). Susie was uncomfortable after a while, and Jenifer re-arranged Susie a few times–Jenifer and Louis took over for Sunday afternoon. We watched another episode of Only Murders in the Building from the third season. I liked it, but I think Susie was a bit lost.

It was 5PM, and I was tired, and Susie was falling asleep. I pulled out the crash pad and put the gate on the bed. Susie has fallen before and sleepwalks and needs all of this in place to be safe. I kissed her goodbye, but she was distressed and said, “I need you,” while barely being able to stay awake. Susie let me go and said, “I love you,” as I left. Always heartbreaking.

I drove south to Ancestry Brewery to meet Mariah. I was again easily; I had an Irish Red Ale with excellent freshly made onion rings while I waited. Mariah appeared after 6PM, and we talked about the film festival, her trip to Montana, and other details. I told her I enjoyed meeting and talking to many writers and moviemakers. It was an excellent festival. Mariah was relieved to see me “spend some money on myself to enjoy myself.”

We promised not to be so many weeks before we meet again. The drive back was on all twisty roads over Cooper Mountain. I had not driven them in a year and not in the dark. I was careful. Lastly, I also had to backtrack to 209th, the main road to the Volvo Cave is closed for construction, but tired, I arrived safely in Air Volvo.

I disassembled my ensemble, which is my suit and suspenders. I have new books, cards, websites, and many things to do. So many chances to write and to learn. It was a great four days! The summon happens next year on 4October2024, and we cultists will hope to meet again then.

Thanks for reading.