- 55,388 hits
- Chapter 21–Saying Goodbye to the Storm
- Chapter 20–Every Storm That Comes, Also Comes to an End
- Chapter 19–The Storm Is Almost Over
- Chapter 18–There Are Some Things You Can Only Learn in a Storm.
- Chapter 17–Comfort Is on the Horizon
- Chapter 16–I Thought the Hardest Part of the Storm Was Over
- Chapter 15–Sometimes You Do What You Gotta Do
- Chapter 14 – Blessings in Respite
- Chapter 13 – Getting Worse and Not Seeing the Signs
- Chapter 12 – It’s Coming and There Is Nothing You Can Do To Stop It.
- Chapter 11 – Plan and Build Your Life on THE Rock.
- Chapter 10 – When the Storm Gets You Down
- Chapter 9 – Tending to the Mundane
- Chapter 8 – Believing Through the Storm
- Chapter 7 – Riding the Waves of the Storm
- Chapter 6 – “Back of the clouds the sun is always shining.”
- Chapter 5 – Storms don’t stop for birthdays.
- Chapter 4 – We thought we were prepared.
- Chapter 3 – It was the beginning of a long storm.
- Chapter 2 – Fear in the Storm
- Chapter 1 – A Sudden Storm
- Hey there!
“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.” Haruki Murakami
True. I was not the same person at the end of this storm. I had gone through the refiner’s fire, and come out completely different. But, I’m getting ahead of myself.
November 27, 2014
It was Thanksgiving Day. It was a first. A first of many that I would face in the next year. Perhaps God knew it would be best for me to meet this “first” now—when I was numb and things were all a blur.
The first holiday without Roger.
We had baked the turkey the day before, so it was all ready. I was pretty dazed, so the girls helped me get everything together. I remember my heart feeling so empty without Roger at the table.
I have not always been a “Black Friday” person. In fact, I only began joining my daughters-in-laws and Lisa a few years ago. The thought of getting up at 11:30 pm—yes, I go to bed early—to go shopping for five or six hours simply does not appeal to a morning person. But after we got in the groove, there was a lot of darting from store to store or line to line, and that made me glad I joined them. Depending on your point of view politically or physiologically, it was good news that in 2014 stores opened at 6:00 pm.
We had decided to do the Black Friday gig months before this storm, so we kept to the routine and checked out all of the ads on Thursday morning. We prepared dinner, ate, and even took time to share what we were thankful for. As hard as it was, we found that there were many things that called for thanksgiving. The saying in Chad and Steph’s kitchen states, there is always, always, always, always something to be thankful for. I won’t share now, but our list was healthy.
I don’t recall much of the shopping experience—didn’t take any pictures (unusual for me). But I do remember how surreal it was for me to stand in Walmart with my hand on a kitchen trash can next to Madison who was holding a soccer ball, waiting for the announcement, “On your mark; get set; go!” which actually means, “You may now begin your Black Friday shopping.” On Thanksgiving Day, no less. I thought, “My husband just died yesterday. We will bury him Saturday. And here I am out with all of these shopping-crazed people whose only thought was to get the best bargain and get out of there.”
November 28, 2014
With visitation set for Friday night, we worked in earnest in the morning to get things ready. Pictures, a DVD to play of family memories, music to go with the DVD, a bulletin about Roger’s life, an obituary, the order of service…a funeral takes a lot of planning.
Lisa designed the bulletin and nieces Carissa and Alysha helped put pictures on foam board. Items that spoke of Roger’s life were gathered, and by Friday afternoon we felt like everything came together nicely.
Hard emotions. Walking into the church and seeing Roger in the casket for the first time.
Yes, he looked “so good.” Isn’t that what I always said when I walked by a casket? “Everything looks so nice.” “They did a nice job getting her ready.” In fact, those were statements that Roger even said. I now wonder how those grieving families received our feeble words of encouragement.
In all honesty, Roger did look good. He had been so bloated with the effects of the brain tumor, that he actually looked great. Well, not great. Lifeless. But better than he had looked for weeks.
But seeing him for the first time in that casket—reality set in. This was it. In a short time many friends and family members would join us in visiting the dead and the living. And I can’t count the times I said out loud, “It’s just his body. It’s just his shell. He is not here.”
I was so grateful for the number of friends who came through the line. Many friends were in the area for the Thanksgiving holiday; the kids even got to see old friends from their high school days. People traveled great distances to pay their respects to Roger. Little did they know that it was a huge encouragement to me.
November 29, 2014
The day had come. The hardest day. The day we would officially say goodbye to Roger and lay his body to rest until the rapture. Many times I have attended funerals and said to the family, “The next part is the hardest part.”
Both my parents had died, Roger’s folks, too. And we both had a nephew on each side who met death tragically as young boys. So, death was not a stranger to me. I KNEW that this would be a hard day, and I could empathetically tell others that it would be a hard day.
But there is just something about leaving your soul mate in the ground and walking away to grieve, mourn, live, and cry that makes you want to collapse.
The service was touching. Chad led the congregation in “When We All Get to Heaven” with me playing the piano, just like I had done so many years with Roger leading the music. Pastor Derek read the obituary. Pastor Thompson read fond and funny memories we had of Roger. We showed a video of pictures with the kids as youngsters singing, “Daddy.” Pastor Thompson gave the message. And it was over. People filed up front to give their condolences—many who came from great distances just for the service, and then we hovered around the casket to say another goodbye before the lid was shut. Reminding myself again: It’s just his shell. It’s not really Roger. His soul is in heaven.
Pallbearers. Who did we pick? There were so many that would have been appropriate, but the three sons, Chad, Lance and Scott, and the three grandsons, Micah, Asher and Seth were who we chose. How touching it was to see the boys and their sons carry grandpa to the hearse and then to the gravesite.
You need to understand that the cemetery is about a half-mile from where we live. I’m finding that it’s a good thing now. I can go anytime to visit his grave—not him. Remember? “It’s just his body. It’s just his shell. He is not here.”
In fact, when we purchased the lots, we had fun trying them on for size!
We arrived at the cemetery, sat in the tent, and Pastor Thompson read some scriptures, and that was it. Well, almost. We sang as a group, “What a Day That Will Be” and it was beautiful. What a fitting end to an exemplary life. (Many thanks to Penny McCullough for video taping this. In the wind, no less.)
There was the usual funeral food at the church, and there was a lot of laughter. Bless the ladies who fix food for these events. This family reunion, with sad overtones, was a joyous celebration of the purpose of life.
Even as we returned to our home that afternoon, the fellowship continued, making the beginning transition to widowhood a little easier. It was as though I was on a moving sidewalk. It was moving. I couldn’t get off. But there were other people walking along side of me to help me along the way.
So it’s over. Roger is gone, and that particular storm, that brainstorm–navigating my husband’s uncharted journey with brain cancer–has ended. But there are other kinds of storms that formulate even after such a turbulent brainstorm has run its course, such as a heartstorm: that period of struggles during the first year of being a widow. I have kept another journal that charts such struggles. My heartstorm. And I plan on posting chapters of this new journey in the weeks to come.
We took more pictures than I did writing—explanation is further down. But that’s ok. You know a picture is worth those thousand words.
Perhaps you should have a heads up. Some of these pictures are gut-wrenching. In fact, many of them I have not even seen since last November. It’s just so hard to grasp that my loving husband, my protector was so debilitated. So I understand if you don’t want to read any further. It’s important to me that I meet this monster head on. And the text and visuals are a big part of that.
November 23, 2014
Here we go
It was Sunday, and as we all started to wake, Roger was coughing. When he coughed he held his head and drew up his legs. We could tell he was in pain, so we called hospice. The on-call nurse came out and explained to us how to give the medicine. We started morphine at 9:24 AM; she said we could give it every two hours. She also gave us more instructions on how to administer the Ativan.
The nurse said that it looked like it would be about 48 hours for Roger, based on his fever of 100.4 and the color in his hands. It would be a rapid decline.
Scott and Jess were on the way; Lance originally had a flight for Tuesday, but he started looking for an earlier one.
We face-timed with Lance, and Roger reached out his hand toward the phone to touch Lance. I believed Roger recognized him.
The morphine routine continued. 11:30, and 1:48. We also gave him Ativan, because Scott and Jess had arrived at noon. It was meant to calm Roger, and we had hoped that he would be able to communicate with them. There was nothing.
It’s so difficult to see your loved one in pain. If you are a parent, you know what it feels like when your child hurts, and you can’t take it away. This was so similar, only worse.
Roger still appeared to be in pain, so we called hospice again at 3:30 PM. The same on-call nurse arrived at our house, and she told us to start the Atropine. All day, and all night, for about 3 days, Stephanie, Lisa and I gave dad medicine every hour, whether it was Morphine, Ativan or Atropine. It seemed to calm him, but for all intents and purposes he was coma-like. The Atropine was to help dry up secretions. I guess it helped, but there was still a lot of rattling. Compound that with his chronic sinus issues, and it seemed like there was a lot of drainage.
Can you endure just a little more humor? I don’t want to be uncaring or insensitive, but let’s face it: laughter got us through many dark days. Why not a few more before he left this life?
The on-call hospice nurse was very thoughtful and gentle. She understood just who we were and what we were going through. That is, except what Roger’s name was.
This is how it played out:
She went into the bedroom and asked, “Charles? Charles, can you hear me? Are you in any pain?”
Me: “Um, his name is Roger.”
Her: “Oh, I’m sorry. I really am. I thought I looked at the chart correctly.”
Me and her and everyone else: More talking and questions.
Her: Getting ready to leave, “Ok, don’t hesitate to call if you need anything else. Remember the sense of hearing is the last to go, so keep talking to him. It was nice to meet you, Charles. Your family is here for you.”
She left. And we burst out laughing!
Monday, November 24, 2014
Stress. Anxiety. Fear. All of these emotions and more. It’s what consumed us. My notes are meager for the next two days. I had plenty of time to write, but I wanted to spend time with Roger. Sit next to him. Hold his hand. Talk to him. Kiss him. Hang on to him. Touch him.
A little bit about my daughter-in-law Stephanie. When Chad met her at Pensacola Christian College she was studying to be a nurse. She teaches Kindergarten now at a Christian School, but she has experience working at a hospital and a nurse’s heart.
Now you understand why we called Stephanie our resident nurse. The hospice staff even asked her if she was a nurse. She had brought her stethoscope, oxygen monitor, and her “don’t worry about that—I’ll take care of it” outlook.
The hospital bed was by the door of our bedroom. There was a twin bed, several chairs, the treadmill, a dresser or two, but enough room for a family of 16 to gather. As we spent those nights, I found myself sharing the twin bed with Stephanie, and Lisa slept on the floor. Jess was down there with us as much as she could be, but little Savannah needed her, too.
So, from my skimpy notes:
Stephanie was the biggest and most faithful help. She set her alarm for every hour on the hour and was up giving Roger his meds. Lisa and I spelled her off in the early morning, but she did the bulk of it.
At 8:00 AM he stopped breathing, opened his eyes, rolled back his eyes and then started breathing again. He did this several times. 3 PM; 5 PM; 10 PM; 11:30 PM. At 8:00 PM pulse ox was 70%, 61 heart rate.
During each of these times we were sure that Roger was going to die. We would call everyone in and stand around his bed and cry and tell him that it was ok to go, and that the kids would all take care of me. Then all of a sudden he would start breathing again; it was as though we brought him back. Eventually we decided to be very quiet and not disturb him in his journey to heaven.
Here’s another story that will make you smile.
During one of the episodes we called everyone in to stand around his bed, and I asked the grandkids if they wanted to sing a song. Asher said, “Jesus Loves Me.” So we all sang it to grandpa. I asked if there was another suggestion, and Seth said, “Jesus Loves the Little Children.” So we sang that to grandpa. I asked if there was one more for us to sing, and Seth, in the cutest little voice said, “The Star Spangled Banner.”
We all looked at each other, smiled, and proceeded to place our hands over our hearts and sing that patriotic song to Roger on his death bed. I must admit that it was precious and made us giggle a bit. It was a stress reliever at that point.
Even with the Atropine, there was a lot of mucous. Stephanie had to use a swab to wipe his mouth out.
November 25, 2014
This is all I have for this day.
Roger continued to have episodes throughout the day.
Lance couldn’t get his flight changed, so he was scheduled to arrive on Tuesday late afternoon, and even at that, it was delayed, scheduled to arrive in Bloomington at about 6:00 PM. Because Roger looked like he was going to die soon, we made a quick call to our friends, Gary and Carol to see if they would pick him up. That was a real help to us. As it turned out, Lance got to be there with Roger that evening.
November 26, 2014
We knew it couldn’t be much longer. Wednesday morning was one spent in his room, giving medicine, greeting the hospice nurse, letting Ashley the CNA clean him and waiting. Ashley came at 9:00 AM and noticed there was a huge bed sore on his back, one on his ear and several on his feet. We were amazed that they formed that quickly. I guess we were so happy that Roger was laying peaceably with his head tilted to one side so that the fluids/mucous could flow out, we just didn’t want to disturb him.
Ashley cleaned him up and changed his bed, telling us that moving him might send him to his death. We acknowledged that and were prepared for it. Nurse Beth came and said that it wouldn’t be long, and to call her when he was gone. She would come back and listen for a heartbeat and help us through the next steps.
At about 11:00 I was sitting at the dining room table, and again, as so many times before, Scott came out and said, “Ma, you need to come. This is a little different.”
I went to the bedroom and there was Roger, breathing regularly, but with shallow breaths. His eyes were open, fixed, and the adults all stood around his hospital bed crying, encouraging him the best we knew how and trying to savor the moment. His death was gradual, but by 11:17 he was home in glory.
I shall not forget the crying and grieving we did. It was almost a collective wailing and groaning, each one in his own way. We stayed there for a while and then called the grandkids in. They shed their tears, some more than others.
Stephanie called Pastor Thompson and the hospice nurse. They came and Pastor prayed with us. Beth listened to his heart and pronounced him dead at around noon. Ashley cleaned Roger up one last time. When we had enough time, Beth called the funeral home and the coroner. They came. The feeling of Roger being carried out of the house on a stretcher was heart breaking. He was never going to be with me in the house again.
We asked the funeral director if we could come in that afternoon to work out the details. Thanksgiving was the next day, and we thought it would help to get everything set before the holiday. At 2:00 PM the kids and I went there to pick out a casket and take care of particulars. Mr Tanzyus was very helpful, and it didn’t take us long to make decisions. He thought we may have been rushing things to have the visitation on Friday night and the funeral on Saturday, but it worked out with so many family friends to do it this way.
What did we do the next day? Gave thanks. It was Thanksgiving.
At this point, I am marking the days. That means that I look at the date in my journal, and, since I know when the brainstorm ends, I can count how many days are left. Mind you, while I lived this in real time, I didn’t have that perspective. But now I do. And yes, the storm is almost over.
I’m sorry if there are so many references to “pee.” Maybe it’s the “mother” that is coming out. It’s a basic bodily function, but when a human being, whether a child or adult, can’t take care of himself, they must be helped. I couldn’t stand to have Roger wet with urine. I’m sure the cleanliness bothered me, but I mainly wanted him clean and comfortable.
November 18, 2014
I woke Roger up the night before to give him his medicine at 8:30 pm, and he was soaked. I got him cleaned up, and then I woke up at 3:00 am. I checked on him, like a mother does her baby, and his ostomy bag needed to be emptied. I emptied it and, though he was wet, I thought I’d just wait until morning to clean him. I laid down. And then got up. I couldn’t let him lay in pee.
I had decided that I would tell Nurse Beth that a catheter was needed. He would feel cleaner, and it would relieve a lot of stress.
Communication now consisted of hums or grunts. I gave him a sweet roll before noon, and he said, “Mmmmm…me…meat…meat…meat…” I asked, “Meat?” He said yes, so I gave him beef and noodles.
Changing him is still hard. I rolled him to get his clothes off, but eventually he had to stand. He did it haltingly.
November 19, 2014
I was grateful for the wheelchair; however, I got discouraged trying to get him out of the wheel chair. It was horrible. He couldn’t help, and I couldn’t lift him. Finally, by the grace of God, he got up. I changed him, and got him to bed. He stayed in bed, and by morning he seemed stronger. I cleaned him up, put him in the wheelchair and he had breakfast at the table. At noon, again, I couldn’t get him out of the wheelchair—even with a pillow on the seat.
Somehow I got him to the edge of the bed. Getting him to lie down was horrible. He didn’t move his arms. It was like he had a stroke, but in his entire body. He was just dead weight.
- He forgot how to brush his teeth.
- I began feeding him because he couldn’t remember how to use the fork.
- His fingernails began to look blue.
- He coughed while he slept.
- I asked him if he could say my name, and he could barely get out “Glenda.”
I thought back to last week and realized Roger had really gotten worse. My friend Kathleen came and stayed with him while I went to the bank. The kids were planning on coming for Thanksgiving, which was the next week. I was really looking forward to that.
November 20, 2014
Sounds odd, I know, but I was pretty excited for this day to come. It was the day Roger would get his catheter. Nurse Beth came in the morning, as well as the chaplain. I went into the bedroom with her and she looked at him. While the chaplain stayed to talk with Roger, Beth brought me out into the dining room and said that Roger was declining and his time would be short. She didn’t want to state a time frame, but eventually she said, “About a month.”
We were told to stop all liver meds. What an event that was. For the past three years we were on such a regimen to keep his liver functioning, and now we were told to stop. It was another “nail in his coffin” so to speak. That sounds horrible, I know. But it was just another example of how we were now “not” keeping him alive.
Beth put the catheter in, and I was so relieved. I thought, “At least I don’t have to worry about rolling him over and changing his Depends.” Don’t get me wrong. I would do it if I had to, but I was wearing down. At this point I couldn’t get him out of bed. His leg muscles were so atrophied; I didn’t think he could support his weight at all.
I had an interesting visit with the hospice chaplain. He had brought his guitar and had seen the videos that Lisa and I had done. Evidently they had gone viral in the hospice office. Well, I may have mentioned the videos to the social worker during one of his visits. The chaplain stayed and chatted. I cried a little. He did his chaplain stuff, nodding and listening.
Ashley, the CNA came and gave Roger his bath and shaved him. What a blessing hospice was. She said she planned on coming three days a week and told me that I didn’t have to worry about bathing him because he didn’t have a body odor. She would take care of that when she came.
Ashley had brought a different kind of Depends, but the joke was on us. He didn’t need them because of the catheter!
Good friend Erin brought some homemade soup. As I was feeding Roger the soup at about 5:30, he started to shake, and his face got real flushed. There was blood on his hand, and I discovered that he had pulled out that catheter. The catheter that I was so happy to have! Hmmmm. I guess it was not all about me!
It was a mess—blood everywhere. I called hospice, they called the on-call nurse, and she called to see if we wanted it reinserted. Nurse Beth had said that she used a smaller balloon/bulb, and there was a larger one that would stay in better.
I pondered it. It’s a painful thing to go through, but not knowing how long he had to live, I thought we had better give it another shot. Boy, was that a bad idea. He was hurting as she tried to insert it, and I had to hold his hands. And the thing was just not going in. We gave up, got clean clothes and sheets, and put Depends back on him.
My singing group, State of Grace, graciously came to our house to practice. It was so good to have them there, but I was emotionally spent. My heart wasn’t wanting to sing, and I was on the verge of tears. Like the song, God heard me sing when the waves were crashing around me…I just didn’t sing too well.
Mike and Della stayed and put in the dead bolt lock on the office door. My plans were that if I had to have someone stay with Roger, I didn’t want them to have free reign of the house.
They left at 10:30 PM. I was discouraged. Roger’s bed was all wet and bloody with residue. I didn’t know how I was going to clean him up by myself, but I would do what I could. I asked him if he was hurting. He said no.
There I was, praying that God would be merciful to Roger and just take him home, and boom! I see a status update on someone’s FB.
The most evil thought….desiring the death of another for personal convenience.
The statement could have been directed at many different circumstances, but I know at that time it was meant for me. I was convicted and said out loud, “Lord, I don’t want Roger’s death for my convenience. Lord, forgive me. Take him in your time. Your perfect time.”
November 21, 2014
A day of friends.
I got Roger cleaned up; and the rest of the day he was in bed.
- Good friend Karla came by to talk and brought me lunch.
- Good friend Teri came by and brought me a soda, Depends and laundry soap.
- Good friend Tonya came by and brought me a soda, some applesauce and cookies.
- (Did I mention I LOVE fountain drinks, and I believe everyone of my friends
- Good friends Dave and Delores came by. Dave had come by earlier in the morning with flowers and asked if there was anything he could do. I had some drawers that needed fixing so he had taken them and brought them back, all fixed! Delores visited with Roger and even got him to laugh!
- Good friends Mike and Della came by with a soda a supper. They stayed with me until Lisa arrived from Green Bay.
November 22, 2014
It was our year to have Thanksgiving at our house. Having daughters-in-law means having to be a little flexible with holidays. I have never been much of a “possessive mother-in-law,” so everything always seems to work out. About every other year the kids, if they can, come to our home for Thanksgiving. Lance lives in SC, so he doesn’t usually make it, as Christmas/New Year’s works out better for him and that long trip.
Lance had made the decision to come this year based on Roger’s prognosis.
By Saturday morning, November 22, 2014 Lisa, Chad and Stephanie and their kids had arrived. Again—a wave of relief. Scott and Lance were planning on coming sometime on Tuesday or Wednesday.
That morning furniture got moved around, and, as I stated, it was so good to have the kids here and help.
I went to a “Ball Brothers” concert that evening, and when I got home there was a noticeable difference in Roger. His eyes were puffy, his face was red and little distorted. His tongue was not good. It was as though he wanted to talk, but couldn’t. Just different than the “norm.”
Stephanie was able feed him meatloaf and green beans.
The thought occurred to me: What if he dies before Lance and Scott get here?
That old tumor was getting him. We didn’t call anyone at that time because he didn’t have any emergency symptoms. I just thought it couldn’t me long God would be calling him home soon. I just didn’t know if he knew how close he was to meeting Jesus. I didn’t want him to be afraid, I just didn’t want him to be alone.
This is so hard reliving this. As I typed the section about Roger meeting Jesus, I broke down and cried. Wailed. Sobbed. It makes it so fresh. I thought I was doing pretty well, but that deep-rooted pity, remorse, sadness and grief easily surfaces.
Did you ever avoid doing something because it was difficult? That’s where I am today as I type this next chapter. You can probably tell by the narrative that Roger’s time on earth is short. And that means as I relate those last days, I have to relive them, too. Blech. It’s hard.
Sorry. In case you don’t know: SPOILER ALERT. Roger dies.
And I did have a total hip replacement four weeks ago (July 1, 2015); that’s my superficial reason for not publishing. The real reason is…it is so hard. But, I am feeling better, and my mind is clearer, so let’s forge on.
As the chapter title states, there are indeed some things that you can only learn by going through a storm. I learned faults in my character. I learned that I had many friends who really did care. I learned that time goes fast. I learned that time goes slow. I learned to trust the Captain at the helm. He knows what He is doing.
November 15, 2014
From my hospice journal:
- Roger is doing funny breathing in the night. It’s as though he stops breathing for 10-15 seconds and then starts again. I don’t know if this is from his possible sleep apnea or he is just getting ready to die. He rattled a lot last night, but I don’t think we are that near.
- He is disinterested in tv, conversations, and his eyes look like they are half shut most of the time.
- He talked with Eva on the phone last night, but most of it was unintelligible.
Email to family
Dear kids and family and friends,
The nurse came this afternoon. Well, I need to back up just a bit. This morning my good friend and kindergarten teacher Karla paid for me to have a massage. It was so nice and relaxing. She and my Title I teacher Kim stayed with Roger. They even cleaned the bathrooms.
Then Kari came with the Girl Scouts money that they had raised for us to help with the gas expenses. That was so sweet and we really appreciated that.
Then the hospice nurse came; her name is Beth. She is really sweet, and she answered a lot of my questions. I am very encouraged about what options I have. The nurse will come next week Monday and Thursday and on the week of Thanksgiving she’ll probably come Monday and Friday so the kids will get to meet her.
The CNA will come probably Tuesday and Friday. Not quite sure yet on that. And then I was able to explain to the nurse some of my concerns and questions. For example what do I do if he falls? I’m having a difficult time moving him. What is my next plan of action? What help can I get?
She said that their agency has a list of names of people who can provide me support and stay with Roger. One thing she said was someone could come for eight hours while he’s sleeping at night and then I could get some good rest in another room. This would cost but I think it would be worth it, and it would be cheaper than going through an agency.
That really encouraged me. And then she discussed about there might come a time when he just goes from the bed to a chair next to the bed and back-and-forth like that. She liked how the room was nice and large and that he could get to the bathroom easily. If I hired someone to spend the night with him, they would sit in the chair in the room and I would sleep elsewhere. So we are thinking– I am thinking that is –about how we can configure the room.
She showed me how to get him up using leverage, but it is still hard.
He is so compliant, but not able to comply. For example, I said, “We need to get up and get your pants changed.” He said, “Okay.” And he did nothing. We went back-and-forth like that for a while. Finally I just had to get him up by myself. He did help me when I made him get up and get into bed. He really had to hold on to me while we were walking.
He is still pretty non-conversant, unless you ask him a question. His eyes are vacant. And he is content just sitting.
On a lighter note, I have made a note to myself: DO NOT LET ROGER STAND IN THE BATHROOM OR ANYWHERE ELSE WITH NO CLOTHES ON. He can pee without any thought or preparation. Yup, twice he did that at 4 o’clock in the morning.
Bill Fleming stopped by to check on me. He lost his wife Blanche to cancer and had hospice for about a week. I just keep thinking that this will last longer than that.
And, brother Dean and Sarah stopped by to visit at the same time, too. It was so nice seeing them again. Roger was sleeping so we all sat around the table and talked.
Elaine and Michan arrived and it was so good to see them. I will be able to learn so much from Elaine and how she helped her mother in her long last days.
The Bradshaws came to have some fun playing cards with us. Roger was awake and sat at the table with us and even smirked several times. It was a good time for me to have some laughter and interchange with good friends. Then before they left we had the guys move the end table and the ironing board from the bedroom upstairs. Elaine and I thought and measured about how to move Roger’s dresser out so we could have room for a person to sit with him at night.
I love you all. MAMA
Elaine did come, and Roger perked up so much. She was a ray of sunshine (and an excellent shaver. Roger didn’t panic too much when he realized she wasn’t using a razor blade!)
From the journal entry in the book Hospice gave us:
- Having even a more trouble moving him and cleaning him and redressing him after incontinence. I need help. I can see that I will hurt myself eventually.
- He rarely converses. He can twiddle a spoon for hours. TV is not interesting.
- They told me to stop the levoxyl.
November 16, 2014
I was so grateful for the help that Roger’s sister Elaine gave me. She helped me move things and organize them to help Roger. We moved the queen bed upstairs and put the twin bed downstairs in our bedroom. That made more room for family to visit.
While Michan (Elaine’s daughter) and I went to church, Elaine spent some quality time with Roger. They left to go home to Indiana that afternoon. I often wonder if Elaine knew it might be the last time to see her brother alive.
I had a concert that night, so the Gruens stayed with Roger. When I got home, they said that Roger just picked at his food, and he was really hard to get up and walk to bed. He slept all night (good for me), and I did, too. I took an oxycodone; it really helped with my aching hips.
November 17, 2014
The nurse and the CNA came, and we talked about more things. I told her about how Roger had a hard time walking the previous night. She ordered a wheel chair and said that the chair might help him getting for one to place to another.
We discussed a catheter, and she said that she could put it in any time. Maybe Thursday. If he were in a wheel chair it would be easier than walking around with a leg bag. She said they usually kept catheters in for a while, so it wouldn’t be an issue.
I asked her, explaining that I knew she couldn’t say exactly, “How did you think this disease would finish out?” She said that with her experience with cancer, it would/could progress quickly, I’m not sure what that meant, but I expect to see a quick decline in daddy.
I had met a family who lost a brother to just exactly what daddy has. They did not do radiation or chemo. He died 89 days from diagnosis. I hear about other situations and I think, “This storm is sucking me in, and I don’t see anyway out.”
Roger ate a little, and I got him to bed for a nap. He was so hard to get up from the chair. The nurse said that I would know when he would have to stay in bed. I was beginning to think it was getting close.
My good friend Carol stayed with Roger while he slept so I could run to Walmart. When I got back, he was soaked. I hated to have him on a catheter, but I knew it would help me.
My prayers now consisted of, “Lord, please take him quickly. You have numbered his days, and if I can be a help to someone by going through this, then keep him here. But I honestly don’t know how much longer I can do this.”
November 11, 2014
You will recall that we had made the decision to call in hospice, and it was confirmed while Roger was getting fluids at a local hospital. As I struggled in the waiting room with all of the thoughts and emotions, good friend Lisa Martin said, “Glenda, this is so hard. But you know you are going to make this decision sooner or later. It’s going to happen.”
I remember that the nurse had a hard time sticking Roger to get a vein for the fluids. Three times and no success. They called in another nurse, and they finally got it. She said if they were going to do more long term fluids they would have to put in a port. I told her that hospice was now involved, and I didn’t know how they handled outpatient fluids. She said, “It depends. They might want to do more…maybe not.”
We got home and Harbor Hospice called and got information from me. They would call again to set up an appointment to evaluate him and get things going. I had so many questions going through my mind. Will they stop all medicines? Will Roger understand what was going on?
Roger’s sister Elaine called and planned to come that Sunday. Eva, his other sister in South Carolina was planning on coming, too, but wasn’t sure because her husband Billy was running a fever.
November 12, 2014
Lisa Martin and her husband left. Before she did she showed me her choice of Roger’s books. I had told her to look through his stuff and pick something out. It was a thin New Testament. She had remembered him using one down south. I teared up and cried…not because she was taking it, but because I knew there would be many other things that we would eventually go through, and I would find a piece of Roger with it. In the back of this Bible were 5 names of those he had led to the Lord when we first moved here.
My dear friend Kathleen and her friend George had volunteered to help me in any way, and so I decided to take them up on their kind offer. They would come and stay with Roger while I got my hair done. Of course, the usual panic set in when I left Roger with someone else. I wanted him to be pottied and emptied while I was away; my worry was unfounded. They brought us lunch and then I left. It all worked out, and I had a nice break.
Roger and I just kind of sat and did nothing the rest of the day; however, I dumped his bag on the floor just like he did one other night. I just let it slip, and whoosh–it was everywhere. That taught me a lesson about not jumping to conclusions about Roger’s mishap. [We all jump to conclusions, don’t we? We hear just one side of a story and immediately think the worse and champion one side over the other.] He hadn’t intentionally missed the toilet the other night–it was indeed an accident. If he could have one, I could, too. So, I got that cleaned up. Blech
Wetting the bed became routine, and as I have gone through my notes recently, I noticed that this was a frequent occurrence. I had put Depends on him and after I started to use those protective pads, the task of stripping the bed was lessened.
Hospice called and made an appointment for Thursday, November 13, 2014. They asked if I was sure we wanted to do this, and I answered, “Yes, and you can bring the nurse for the evaluation.” I felt we were at the point of no return.
I told Roger that we were going to start hospice and asked if he knew what it was. He said “Yes.”
I explained, “The treatment just isn’t working, and hospice will help us at the end so things could be easier.” My eyes moisten as I type this. With his mental state it was hard to know what he comprehended. I was telling him those words mainly for me, I guess.
November 13, 2014
I sent an email to family and friends to explain what the hospice intake was.
Kids, family and friends,
This is a real jumbled up summary of what the hospice meeting was today. I guess of greatest importance is that Roger agreed to it, and I think understood what was happening. He was pretty clear of not wanting CPR when asked. He understood the DNR orders. He asked that I sign the papers in his stead. When asked what his goals were through this he replied haltingly, “I want to see this through. I want to go through.” Or something like that. I was afraid that he was going to say he wanted to fight this.
Anyway, Adam, the front person was very clear with everything hospice was and wasn’t.
It is NOT 24/7 care.
It IS helping you live out your life with as much comfort and dignity as possible.
They don’t hasten death, and they don’t cure illnesses. They let nature (God) take its course.
Adam answered most of my general questions with his introduction. The intake nurse answered a lot of “medical” questions. We will have the same primary care nurse (Beth), same CNA, same social worker, same chaplain, if desired through to the end.
They left a lot of information that I can’t begin to share because I haven’t read it yet, but it looks so good.
I kept looking at Roger throughout everything. Sometimes he was with it….sometimes not. I just felt so bad at times, thinking he thought I was going to put him in a home. I said again to him that his brain cancer has gotten to a point where it is not responding to treatment, and we had called hospice to help us be comfortable at the end.
Some of my questions:
He has a primary care doctor’s appointment on Friday. Should he keep it? Do I keep any doctor’s appointments?
You can, but you don’t have to. I said it was just a recheck, so I didn’t feel like we had to go. The nurse will cancel that appointment.
Will he continue to keep taking all of his meds? Liver? Kidney? Anticonvulsants?
Yes to the anticonvulsants. They are going to check about the liver meds. They dropped aspirin, calcium, multi vitamin, sodium bicarbonate, and Bactrim.
What do I do if he has a seizure? Stroke? Shortness of breath?
I will call them. They will make him comfortable. They will send out an oxygen machine for use when needed.
What are my responsibilities?
Same as before. But the nurse and CNA will each come twice a week, and more if needed. There are volunteers that are available too, I believe. Nurse will come tomorrow. CNA will bathe Roger each time she comes. That will be wonderful.
Will Medicare and supplemental insurance pay for the services?
Yes. There will be no charge. In fact they will pick up the supplies for his ostomy! I won’t have to go out and get them.
Will anyone do routine blood work?
How or when can we qualify for a hospital bed?
Surprise, surprise. It will come tomorrow. I moved our bed over and vacuumed, so it is all set. This just in. They are bringing it before 6:00! Yay
Have any of your caregivers worked with glioblastoma patients?
Yes. Not a lot, but they have cared for them
So, that’s pretty much the story. Oh Stephanie and Jody, you will find this interesting. As of October 1, 2014, they do NOT dispose of or count the morphine meds after death. They count everything each time they come, but someone made a law about at the end. They can recommend how to dispose, but can’t do it for us. Sure am glad we aren’t druggies. Could probably make a lot of money off of it.
Sorry this is so long. But I wanted you all to know that I cried at the beginning of the hospice session, but then finished strong. It’s ok. And I think I would like it if I were terminal.
November 14, 2014
The hospital bed was put up. From the beginning I knew it would be a huge help. It was hard to determine what Roger thought of the bed. Part of me didn’t like it. I didn’t have Roger in bed next to me. The other part of me loved it. If I had to change him in the middle of the night or in the morning, it was easy. There were no sheets to wash! The washable pad was right under him, unlike when he moved around in the big bed.
Roger became very quiet. When I tried to converse with him he answered in mono syllables. He just sat and stacked things or touched things with his pen. I played my solo CD while we sat at the table, but I didn’t know if he enjoyed it. His affect was so flat.
It was a long day. He didn’t talk. He just sat at the table and fiddled with a spoon.
And so we sat. Together. At least we were together.
He was dry at 8:00 pm when we laid down for bed. At midnight he was soaked again. I stripped him on his side of the bed. Note to self: don’t take off all of his clothes and stand him up unless he is on tile. While I was getting something, he promptly peed on the floor. The carpet. Right by the bed. So I got him to the tiled floor in the bathroom and he peed on the throw rug there! I couldn’t win!
Each day brought new challenges. He was so hard to move that my back started to hurt. I have said this many times: I AM NOT A NURSE. I’m adding to this things I am not: I AM NOT A PHYSICAL THERAPIST. He was getting so hard to move. My back was starting to hurt. I didn’t have the knowledge of how to move him correctly.
When I would get him in bed, he would slide down to the foot of the bed. It was hard to scoot him because it was only me. I determined to ask the nurse how to manage this.
I didn’t know what this was going to be like. I prayed, “God please be merciful and take him quick. And God please help me find someone who can help me.”
I had been through some difficult days. I knew the end would be difficult. But the time to make a painful decision had come, and it hurt. It really hurt. It was a decision that I expected to make one day. But not now. With all of the knowledge I had gained about glioblastoma, this day was inevitable. But it came so suddenly and I didn’t feel prepared.
The time I dreaded had come…
As I typed in my journal the morning of November 8th, Roger slept peacefully next to me. I was already beginning to have a feeling of panic, the feeling I always got when a family member left. Roger’s brother Bruce and his wife Jody were coming for a visit later that afternoon, and that was something to look forward to. But then Lisa would leave the next day. I anticipated good Alabama friend Lisa Martin Shaffer and her husband arriving on Monday.
I had reached a point where I was afraid that I wouldn’t be able to redirect Roger or get him up. A pillow on the chair helped to get him up from a seated position. I looked at him and thought, “He probably wouldn’t want me to take him out and have people see him the way he looks and acts. They would love him, but he wouldn’t like being on public display.” From this point on he was pretty much housebound.
Treatment? Ever present in the back of my mind was, “Now what? Should we proceed with the monthly chemo?” I was inclined to stopping the chemo. I prayed that God would make that decision for us. “Please, God. Help us and show us mercy.”
Bruce and Jody arrived, and the visit was great. I think that Roger knew who they were, but he just sat and fiddled with paper. They brought Chinese lunch for us, and our time spent together was sweet.
That evening I got a huge surprise. A former student from Alabama, Leslie, came to a State of Grace’s concert. We spent precious time talking, and I, the teacher, got “schooled” by the student, but not in a negative way. She brought a first-hand perspective of life, cancer and death because her father had recently died from that beast.
Some of what I learned:
- Sometimes if you do nothing or keep trying treatment, it becomes cruel.
- Hospice is wonderful. (In my mind I wondered how Roger would receive them coming into our house and taking control. “Is this a death sentence? Have they all given up on me?) Leslie said that hospice helps the patient LIVE until they die.
She gave me lots to think about, and we shared tons of laughter as we talked about our days at Grace Baptist in Alabama, giggling while we looked at yearbooks. It was a wonderful visit that had a huge backstory of God’s direction in our lives.
(I’m including more dates now. The timeline is important to me, and may make more sense to you, the reader.)
On Sunday morning November 9th I woke up in a better humor. Sundays had always been busy days for us, but this one was more relaxed. That morning I had to be at church to sing, but my main purpose was to be fed.
Lisa stayed with Roger, and after the service I chatted with two widows, asking them about their experiences. I yearned to sit down with a group of them and listen and learn. I said, “If nothing miraculous happens, I’m going to be in your club. I will be a widow; there is so much I need to know.”
You’ll recall that if the steroid was working, and if there was just inflammation in Roger’s brain, we would see a remarkable change for the better after five days on the steroid. I had seen no change in him since Thursday.
Scott called to say he had been thinking that I should check on hospice sooner than later. In two and a half weeks, dad had really changed—for the worse. What would happen in the next two weeks while waited for an appointment on the 20th? Even if there was a small improvement with the steroids, what was that in the big picture? “Yes,” I thought. “He and the rest of the kids might be right.”
November 10, 2015–email sent to the kids
Well, I have prayed and mulled over his situation. Scott called last night and made some thought provoking points. He said that if daddy has gone down so far in the past few weeks, he could even go down more in the next few weeks. If I have to wait for the appointment on the 20th, it just will delay help I need at home. And even though he may have shown a little improvement, (which the more I ponder is pretty non-existent), is it enough for me to have him where he was a month or two ago? Finally he said, (like you all have been trying to tell me), I need help now while I am still not totally spent. There were others who voiced the same thing in different ways and words, so I have pretty much decided to call on Tuesday and say that there was little or no change with the steroid and that our family has decided to stop any further treatment. Just to see these words in print is absolutely horrible. Can we talk tonight and confirm this as a family? Maybe 9:00 central time if I can stay awake? Scott….I’ll let you start the call since you did a pretty good job on the last conference call. Love you. Mama
Our dear friend, Lisa and her husband Bob arrived later that day. Their hearts are huge—what an encouragement. Penny from church came over to chat. Amazingly, Roger remembered her name.
That evening I had our conference call with the kids. I wish I had recorded it, because I was able to candidly express my heart and concerns. Following are some snippets from the conversation.
- We rehearsed the past events and what would come next, guessing the doctor’s response if I said there was no improvement with the steroids.
- We pretty much all agreed that there was not much improvement.
- We wondered if they would take our word on that.
- I feel like I am giving up.
- I feel like I am euthanizing him.
- I feel like I’m am sentencing him to die.
- This is such a hard decision.
- The kids mentioned that maybe a little of my avoidance is due to what I will have to face after he is gone.
- They want me to get help.
- They asked if I could find out how much longer he would have.
- They will support whatever I decide.
- They said that he is going to die from this. We are putting it in God’s hands and letting God decide when.
- They said keep asking myself: Would daddy want to have me caring for all of his personal needs and feeding him, etc. and him continue to sit around and write on post it notes all day without being aware of everything?
November 11, 2015
I called Dr. Campian’s office and left the message I had been dreading. It was so hard. This is the text I sent to the kids.
“It’s done. I called and left this message with the nurse: ‘There has been no improvement with the steroid; we’ve decided to stop treatment.’ The nurse said the doctor is prompt. She usually calls back the same day.”
It was done.
While we were getting more prescribed fluids at St. Mary’s, I got the call from the nurse. I can still see where I stood. I heard in my ear that the neurology oncologist understood what we wanted. It was confirmed that we would stop treatment. No more trips back to St. Louis. No more chemo. No more infusions. Palliative care was what we asked for, though I had no real knowledge of what that word meant.
As I look back, I am so glad that Chad and I made that first contact with hospice two months prior. I had their information written down, and the neurology oncologist’s office would contact hospice and share what they needed to know about Roger’s condition. Hospice would then call me, so all I had to do was wait. I teared up. It was good to have my friend Lisa there with me.
Friends provide not only the shelter during the storm, but also the emotional support after the storm when there is clean up, putting things back in order, and building anew. I had not yet passed through the darkest part of the storm; it was hard to comprehend that after it was over, I would need my friends even more.
But that day I had a feeling of peace and relief.
2 Corinthians 1:3-4
Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.
For example, Jeanne Campbell, who has broken bones in her legs, was sitting in her Lewisburg, West Virginia, home when a massive storm barreled through late last week and a tree came crashing through her roof.
“I just heard the thump on the house and saw the bricks flying, and I was afraid it was gonna come on down through the ceiling,” she told CNN on Wednesday.
She managed to get up and move to the center of the house. “Amazing what you can do when you have to,” she said. Source
Lance comes home
He hit the ground running, telling me he was willing to do anything to help me. Hmmm. We better start with how to empty Roger’s pouch.
You know it’s funny. Of all of our kids, I thought Lance would be the most reluctant to deal with this. To my surprise, he was ready and willing. He reminded me that he had subbed at Sunnyside many years ago while he was living at home working on his Master’s degree. There he diapered many severe and profound students. He could take care of his dad.
He was right. I demonstrated; then I watched him do it. Yes, he was willing, ready, and trained.
I left for a singing, and Lance took care of Roger like a pro. It sure was good to have Lance at home.
The next morning I had another singing so Lance helped me get Roger up and changed. He also gave Roger his pills. It’s odd how roles reverse. That’s a cliché, but true. When Lance was a kid, he had the hardest time swallowing pills. In fact it was a federal case to get him to take antibiotics. Roger tried just about every method to get those pills down. Lance said that one time Roger tried to put them in ice cream; another time he tried to give them with Fritos. “He was definitely very patient with my miserable pill-swallowing skills.” It was time now for the son to be patient with the father.
When I got home from singing Lance debriefed me on the morning.
- Roger is 60% of the time “vacant.”
- Sometimes he will surprise you and be “with it.”
- Says a lot of non sequiturs (That’s from my “PhD in English” son. For those of you who need a definition, like I did, here you go)
non sequitur / nän ˈsekwədər/ noun: a conclusion or statement that does not logically follow from the previous argument or statement.
- Occupies himself with yellow post it notes and arranging and folding and copying what he sees
- He can read; but he reads things randomly and without purpose.
- He is still ambulatory.
- He still shakes.
- He is not aggressive. He is very amiable and pliable.
- He knows what he wants; he doesn’t say yes to everything.
- Echolalia is present. (That’s from me. I sat in many IEP meetings where the speech and language teacher used that term.)
echolalia /ˌɛkəʊˈleɪlɪə/ noun (psychiatry) the tendency to repeat mechanically words just spoken by another person: can occur in cases of brain damage, mental retardation, and schizophrenia
We cut his large pills in half. He still had a hard time getting them down. Or even knowing that they go in his mouth.
In the middle of the night the Lord woke me up. Roger’s pouch was so full–about 750 ccs. He didn’t want to get up, so I emptied it at the side of the bed as he sat up. It worked fine. And I started see that the ostomy pouch was a blessing.
The next morning I got Roger showered with Lance’s help. Roger could stand under the shower and wash a little bit, but I knew then I could not get him showered without assistance.
Lance shaved him with an electric shaver. Perfect. Much better than me doing it with a blade.
We three did some errands: blood work, Monical’s for pizza, the bank, Bath and Body, the Post Office—Roger slept any time he was in the car. We even stopped by the cemetery to see the headstone we had ordered in April. Lance took some great shots.
I laid down and slept. For most of the night. It felt so good. Roger woke up and said, “Did I tell you that I worked out the situation with Lance? The horses will be ok. I didn’t know but we could do it all with separate computers.” Lance had said that Roger had moments of clarity, but they were few and far between.
The Next MRI
On November 5th we left for St. Louis to get the all-important MRI at Barnes. It would give us the “baseline,” and help us determine the next steps in treatment.
Roger slept the entire trip. When we arrived at Scott’s after the MRI, Scott and Jess both noticed a big deterioration from when they saw him three weeks prior.
Before we went to bed than night, the family held a conference call. It was a sweet call. Everyone was worried about me. Lisa suggested that I spend the weeks at Scott’s and she could come home on the weekends. She was worried that I couldn’t handle things. I’ll admit that I got more and more afraid when I was alone with Roger. All of the kids thought that it would be ok to stop the treatment—in fact they recommended it. They could see that I needed help and if treatment was stopped, we could get hospice involved. As hard as this is to say, I was relieved that they gave me the “permission.” Permission to do what I would eventually have to do.
November 6th–Results Day
Roger, Lance and I sat in that room and heard the doctor say that she was very surprised with the results. There was a lot more swelling and she couldn’t tell if it was edema or the tumor. Here’s the email I sent to our family.
Dear Family and Friends across the miles,
We went to St. Louis to get an MRI, bloodwork and a consultation with the doctor. She wanted to know how he was doing, and we told her that he has become quite distant and unable to hold conversations. He mumbles incoherently at times. We also told her that his executive functions and physical abilities have declined over the past two weeks. She gave him a few simple test questions and he was not responsive, which surprised us. (Lance’s personal theory is that she didn’t give him enough “wait time” to process what was going on, especially because after the doctor left, we asked him the same question about how many fingers we were holding up and he answered it just fine.) Then she started talking about kidney function, the fact that it was too low to recommend another round of chemo pills. After discussion, we understood that he needed more fluids to remedy this situation, and so he is now scheduled for two visits a week for infusion at St. Mary’s in Decatur to help with that.
She then talked about the swelling in his brain from what she saw with the new MRI. She eventually said that there was approximately 50% more growth since the last MRI in July. They expect swelling after radiation, but his was more than what she expected. She expected he would do better because she said most people rebound, and the swelling goes down after a few months. However, she was not confident that his would go down without treatment, so she suggested high dose steroids, twice a day. We all agreed that we couldn’t tell if it was edema or tumor growth that was causing the swelling. The doctor said that if the swelling is from the radiation, we would see a marked improvement in Roger’s condition after 5 days. If not, we just assumed that meant it was the tumor that had grown significantly. We were encouraged that we wouldn’t have to wait a considerable amount of time to find out if the steroids would work. (We will know if the steroids work if his cognitive function improves.)
So that is our plan. Steroids. And if he doesn’t show improvement in the next five days, I will call. The doctor mentioned briefly another backup plan if the steroids doesn’t work, but I was not really confident in trying that other backup plan. So we shall see. The doctor also made an appointment to see Dad again on November 20th. She did mention looking into finding us an oncology contact at St. Mary’s, so we shall see what comes of that. Bottom line–we left with a script for more IV hydration and steroids. The doctor is not opposed to talking about hospice when the time comes, but Lance and I think that we would like to discuss hospice after this round of steroids if it doesn’t work. We will know more about the situation come next Tuesday.
In the meantime, I am figuring out who can watch Dad when during this week when I need to be away. We hope that maybe the steroids will help with his ability to swallow pills. We were happy to discover that the Keppra is available in liquid form, and we will be picking that up tomorrow. Lisa says she plans to come home on the weekends for a while. Bruce and Jody come Saturday. An Alabama friend comes Monday to Wednesday morning, so that should help some. Dad continues to follow direction and instructions, but he needs constant supervision to follow through with the instructions and is a little weak on his legs. We are thankful, though, that his legs and arms still work and that he can help us dress him and move him around. MAMA
We traveled back to Decatur and I took Lance back to Bloomington to fly out. We cried. It was our year to have the kids home for Thanksgiving. Just like when Chad left, Lance and I exchanged a mental message: “Will we have a normal Thanksgiving, or will we be making funeral arrangements?”
I was alone. Thankfully Roger slept the whole night.
It was the anniversary of Roger’s dad’s death. He didn’t comprehend it.
I kept looking for a great awakening with the steroids. Nothing.
We went to get fluids at St. Mary’s, and it was hard for me to drop him off and go find a parking space. I worried about what he would do or where he would wander. In retrospect, I should have used valet parking.
That evening when I returned from another rehearsal, the Gruens said Roger was a little hard to get to bed that night. He paced, turned the lights out, and stood at the closet door trying to use his zipper to turn in the closet light.
I was a little afraid that he wouldn’t sleep after the steroid, but he eventually sat on the bed and then laid down.
State of Grace Trio has been a great thing for me. They were like family (they still are); it provided me with time to be away from Roger without neglecting my responsibilities. Months later I understood why God placed me with them.
Now it was Lisa’s turn to come home.
‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if the thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise
October 29, 2014–The first thing he said to me this morning was, “I love you,” and haltingly, “My mind is OK.”
Was it? Maybe there was more going on in his mind than what I could see. Was it like a stroke? Was he trapped in this state, wanting to tell me he was fine, but not able to prove it?
Maybe seeing familiar places would be help him, so we drove by our former church. He just stared. Nothing clicked. He always enjoyed watching the ducks at Fairview Park. Nothing. The donut, he enjoyed! Filling out the handicap sticker application was a bust, but it kept him busy. For some reason he wanted to write his sister Elaine’s name, so I wrote it. That way he could copy it.
I had called Janae, our oncologist nurse, and told her that Roger had really declined. She returned my call and below is an email to the kids with my thoughts on her response.
I stumbled across several things on the web yesterday that have gotten me thinking. Janae, the oncologist nurse, didn’t seem too worried about this sudden turn for the worse in Roger’s mind. And then I read that it is common for “executive function” to get worse after treatment—because of the treatment.
I just wonder if it will get any better. Can you get your memory back? Can you get speech abilities and problem solving abilities back?
Where I am going with this? I am wondering if things will be even worse after more chemo. Or will it stay the same?
To be objective, I can live with him being like this. It’s not horrible when I think of what it could be. But if the treatment makes him any worse, what is the benefit? His quality of life is not good now, but it is tolerable. (Actually, if you think of it, there really isn’t a lot of quality to his days, but he is still a living soul, breathing and thankful to be alive.).
But if it gets worse, then what? Will he get worse just to stay worse? (Odd way of saying it, but I think you know what I mean.) And then what do we do?
I have debated about this next treatment. Con: What good does it do? PRO: It is the standard of care to prolong life. CON: Will it make him worse? PRO: Research says that this is the best route.
I guess I need to be patient to see what the next MRI shows, but I think we (Lance) (and everyone else) need to have an opinion about what we want for daddy. If things are ok, they will want to give him the pill bottles before we leave.
(To the reader: This is a little ahead of the story, but you need to know that the standard treatment involved 6 weeks of chemo and radiation and then an MRI. Those results would determine if more chemo would be given–five days a month.)
So, I guess I’m just getting thoughts down in black and white so I can see them and you can see what I am mulling over.
Lance was coming home for fall break, and I was doing a happy dance. He was going to spend a week with us, and it was just what I needed. Roger continued to need more care, and although it wasn’t unpleasant, it was difficult. I needed respite.
Re·spite noun \ˈres-pət also ri-ˈspīt, British usually ˈres-ˌpīt\: a short period of time when you are able to stop doing something that is difficult or unpleasant or when something difficult or unpleasant stops or is delays
I mulled over who I could get to stay with Roger while I was at the airport. Two dear friends agreed to help, and they came by one afternoon to get the “lay of the land.” Floyd and Phyllis Gruen: the angels; Glenda: the freed one.
It was exhilarating. What do you do when you can go out alone, shedding a constant responsibility? You go to Walmart, of course. I picked up some things, non-essential items I’m sure, and realized that this breather was vital to my mental health.
That evening I had a State of Grace rehearsal at our house. It was nice that Roger could hear us sing.
I awoke at 12:30 AM, and I regretted not emptying his pouch because at 4:00 AM he had an interesting blow-out with his ostomy bag.
I heard him get up and when I looked, there was poop all over the floor and on the toilet. He was standing there, holding his pouch. I think he tried to empty it, but he didn’t hit the toilet and it was a huge mess.
I jumped up and told him to stand still. While he held the pouch, I began to wipe up the poop. It had splattered a lot, and little by little I found frustration rearing its ugly head.
Roger couldn’t understand or take commands well, so trying to get him to move, or let go, or wash his hands was hard. He couldn’t move his right leg. Maybe it was because he afraid of being off balance. I don’t know. But I could barely get it ½ inch off of the floor. Finally, I got him stripped down, and washed.
The base attached to his skin was fine, so I just replaced the bag.
I mopped–I wiped–I put the clothes in the wash. Then I started counting my blessings out loud.
- A tiled bathroom floor for easy cleanup
- A large bathroom for ease in moving around
- Throw away Depends.
- A washing machine at my disposal
- A new toilet that flushes easily
- Knowledge of how to manage the ostomy bag
- No job that I had to get up for in the morning
- One more blessing I shall not ever forget: Even in late October as I typed this journal entry, Roger lifted his hand toward me. I reached for it. He pulled my hand towards his lips and kissed it. He couldn’t verbalize much, but in his heart he still appreciated me. I cried. I was thankful. I was blessed.
I had met a new friend on Facebook when we discovered her mother and my husband had the same brain cancer. Her mother had died, and the visitation was on the night I was to pick up Lance from the airport. Floyd and Phyllis came early to stay with Roger while I went to the visitation in a nearby town. I didn’t look forward to going through that line. Giving my condolences to someone I had never met was difficult enough. But I was also keenly aware that unless a major miracle happened, my turn would come to stand in her place.
I’m glad I went. We were strangers in that glioblastoma storm, but oddly bound together with cords of fear, wonder, comfort and trust.
Seeing Lance as he arrived made my heart so full. It was wonderful to see him. We talked continuously all the way home.
I wondered if Roger would recognize Lance. Phyllis had said she thought Roger was a little bit restless because he didn’t want to go to bed until Lance and I arrived. She said Roger made the bed, unmade it, made the bed, walked around, and finally sat on the bed. She asked him if he wanted to pray. Roger prayed and she said it was just like he was at church. He prayed for people. He prayed for Salem. He prayed for his family. I loved hearing that.
Before we went to bed for the night, Lance hugged Roger. I asked Roger if he knew who he was. Roger said, “He’s a gift.”
When you are living in real time, things obvious to the outsider are not so clear to you. I know I was still afraid and frustrated by not knowing exactly how things would progress, but I think back and realize that I was oblivious about how much he was declining.
By October 25th he was sleeping more, eating and drinking less, which meant urinating less. He had slurred speech, or no speech. I found that he would prefer showing what he wanted rather than speaking it. His hands became very shaky—even tremor-like. When he did any activity, he became breathless.
I am currently part of a closed Facebook group for people or caregivers struggling with glioblastoma. As I read the posts now, I can see that Roger had many symptoms that I did not recognize. I’m still not convinced he had a stroke, but his tremors, lack of speech, shuffling, and sleeping makes me wonder. I do know that the tumor was invading and wrapping its hideous fingers around his brain.
Mindless activities kept him occupied for hours on end. Cutting apart a card and taping it together, copying information from his wallet, lining up coins in rows—they were all similar routines from life before the tumor. Just not purposeful.
I was thrilled that Chad, Stephanie and the kids were able to spend a weekend helping me and watching Roger. I felt such a relief with their presence. I didn’t feel alone.
Stephanie and I walked two miles; it was refreshing to get out of the house and do physical activity.
While I was at a concert, Stephanie thought it would be good for Roger and Lance to Face Time. When Roger saw Lance’s face and heard his voice, he really perked up. He told Lance that he should “stop drinking, stop meditating, stop thinking, and stop conversing.” Roger actually became agitated, and Stephanie thought it would be good to stop the call. Roger immediately wanted to get Lance back; he couldn’t figure out where he went.
It came time for Chad and Stephanie to leave, and that was difficult for them. Questions like—will we see him again alive—will we make this trip again sooner than Thanksgiving—raced through their minds. It was hard for me, too. I was losing some sort of security with their presence in the house.
I had another scare. On the day Roger was to have routine bloodwork, we got up, and I fed, medicated and dressed him. On our way I decided to run in and get a polar pop. Ii thought, “What could happen in that short of time?”
When I came out of the gas station, what did I find? Roger sitting behind the driver’s seat. He was ready to drive to the pump and get gas. That was just another sign pointing to my new life with an adult who was like a toddler. I had to watch him every minute! And though I could pick up and carry a toddler, I could not budge a 225 pound adult. I didn’t know if I would be able to get him out of the house for the next blood draw.
Something I never thought I would have to do:
I shaved my husband’s whiskers.
Oh my. I have repeatedly said through all of Roger’s health issues that I AM NOT A NURSE. I get squeamish at sores, blood, stitches, etc. But his beard was getting too long; I had to do something. It’s funny what you can do when you have to do it.
Medicine. A new problem. Like I said, I’m not a nurse, but I do know some nursing stuff. Most medicine should not be chewed. Especially timed-released ones. By the end of October he was starting to either chew his pills or hold them in his mouth. So I started giving him his pills in stages to make sure he swallowed them. It thought we were doing great until he spit out his Bactrim in the toilet. I made a mental note to ask the nurse what to do.
His eating routines started to get “odd.” He would organize his food. And ask for more plates. And rearrange things. He didn’t want his food to touch. In fact he became a neat freak, which, as many of you know, was so not like him.
He paced. He was restless. Especially when I was tired and wanted to lay down. Another worry. What if I was tired, and he wanted to be awake and roam? How long can I do this without any supplemental help?
Sometimes He holds us close
And lets the wind and waves go wild
Sometimes He calms the storm
And other times He calms His child
–Scott Krippayne, from Sometimes He Calms The Storm Lyrics
Pardon the digression from the storm analogy, but this quote fits this blog perfectly. Shauna Emmons shared this on a site I frequent, and I asked if I could share it. She said yes.
We are standing on the train tracks and a train is coming and there is nothing I can do to brace myself or my kids. I’m watching it head straight for us. Others are watching it head straight for us. They know it’s going to run us over and they want to yell, scream, help….but none of us can do anything but watch it run us over. We will get up again, we will pick up the pieces, but for now all we can do is stand here and wait for the freight train to destruct us. It will destroy pieces of us, taking away parts that we feel like we can’t live without. There are no options but to be run over and feel destruction. As hard as I try to prepare or to be ready, there’s nothing I can do to truly prepare for impact.
So I see that look in so many people’s eyes of “oh honey, you don’t even know what’s coming” when I sit here with a smile on my face saying we will be ok. I’m not naive, I know it’s coming. I see it coming too, and it terrifies me. But I also know there’s no way to brace for impact. So it will have to run us over. We will feel the destruction and our world as we know it will crumble around us. And then we will pick up the pieces, and we will survive a day at a time in the dark until we are able to see the morning again.”
My days become dark and scary; but there is still a little humor.
On October 18th I emailed the kids a description of what happened when I left Roger with friends to take care of him.
Kids. You know I was concerned and scared about my concert at 4:00 pm (2 hours away from home) and having to leave daddy from 12:30-9:00 pm. Well, it went just fine and I shouldn’t have worried.
I asked Dave S. and Bill F. if they could sit with him, Dave first, and Bill when he got off his bus route. So with the fear and concern of a mother leaving her baby for the first time, I left. Boy, was that an odd feeling.
Dave got there and Roger was sleeping, so I explained routines to him and we left. I had left phone numbers for someone to text during the concert just to let us know that things were OK. On our way back home at about 6:30, Carol gets a call. It’s Bill. She couldn’t understand him so she handed me the phone.
Apparently Roger and Bill had gone to Bill’s house to let Bill’s dog out, and when they came back to our house, they found they were locked out. Daddy doesn’t usually carry his keys. So, I calmly (chuckling inside) told Bill that he could use the code on the garage and get in that way. Bill said OK. I told him to call if that didn’t work.
Forty-five minutes later, we get another call. Roger and Bill couldn’t get the garage door open. So, I told Bill that Roger had hidden a key in the old shed on some nail, and described where he could find it.
(Roger always hid important things in a cryptic manner. That was how he rolled.)
While I was listening, I could hear daddy looking for it with Bill using his iPhone flashlight to guide him. No luck. So I said I would call our neighbor Sally. She had a key and was close. Sally said sure, she’d be glad to come. Then I call Bill and say Sally is on the way and he said, “Don’t worry. We are in the house now.” I guess they had found another key that we had hidden. Sally came, and they all had a good laugh
We chuckled so much on the way home. I said to Gary that I remembered expressing some concern about leaving Roger with Bill for another concert (it got cancelled), and Gary said, “I don’t see why you would be concerned.” HA. Last night he said, “Bill can watch Roger, but now who are we going to get to watch Bill?”
Anyway, I got home and Bill had done the dishes. Roger had slept a lot, but he was awake and seemed none the worse for the adventure. I really appreciated Bill’s help.
When I look through my journal, I am amazed that I wasn’t a total basket case. Roger’s mind kept getting worse and worse, and though I kept it together for the most part, I felt that the crash was imminent.
- He thought he was making pancakes with someone and flipping them in the air.
- He questioned current events.
- His sense of time was unstable.
- His sense of direction was off. (Turn here. Why are you going this way?)
- His sense of who was in the house was bad. (Where is Lance? Is Bruce ok?)
- His sense of recent past events was off (Did I shave? I just washed, didn’t I? I took my medicine, didn’t I? I think I just emptied my pouch.)
And life was interesting when there was only one driver, two adults, and one couldn’t be left alone. We took the car to Bob Ridings for service, and then the service driver drove us home. I got a call—it was a wheel bearing. But they couldn’t fix it until the following week, so the driver came back to our house to pick us up. Then I had to drive us back home.
One night our daughter Lisa face-timed with us, and I began to realize two things.
- There was no one in the house to talk to. Granted, Roger was there. But it was so hard to have a conversation with him. I initiated it. I carried it. I explained things. If he talked, it was for clarification, like, “What day is it?” “What time is it?” “Where do we have to go?” “When do we have to be there?”
- There was nothing to do. I actually NEVER thought I would say that. Well, there WAS a lot to do; I either didn’t have the initiative to do it, or I couldn’t do it because someone would have to watch Roger. At this point I wondered how widows managed? I mused that they probably just got out and did what needed to be done.
I don’t have any pictures for this blog entry. Maybe a glimpse of us on our wedding day will let you see what we looked like 43 years ago!
We kept a routine appointment our Primary Care doctor, and as we sat in the waiting room, I was feeling sorry for myself. A woman came in with her husband in a wheelchair. She was so loving to him, and so kind and patient. He was pretty impaired, and it struck me that my problems were nothing compared to hers.
As we talked to the doctor, I broke down and sobbed. Roger was sleeping in the chair next to me, and she asked how I was doing. Tears. And more tears. I told her I knew that this was not as bad as it was going to be, but sometimes I felt so overwhelmed. And that day was one of those days.
We left the doctor’s office and had lunch at Dairy Queen. He told me how he was riding horses, and how hard it was to get them out of the barn at DQ
I asked him, “What is going on in your mind?”
He said, “I’m just trying to figure out my mind.”
He asked me to go back outside to get Mrs. Weldy.
I asked him if he knew who I was.
He said, “Yes. You are Mrs. Weldy. But aren’t we going to go get Mrs. Truex?”
He was rapidly declining; even the way he held his mouth was different.
That night he laid down to rest, and I kissed him. I cried some more, and sobbed and sobbed.
I was so afraid.
I felt alone.
I didn’t know who to call.
I was scared.