Karla Started It: The Weeks of 2018

Karla started it. I wonder how many times those words have been spoken. But she did. On the night before week 1 of 2018, she sat with me at my dining room table during our annual New Year’s Eve party and said she was worried about Dad. The days since Christmas hadn’t been good for him. And that was how the new year began.

January 1. Week 1. Day 1. The text message came that Karla was taking Dad to the VA emergency room because he was in fact not doing well. So I met her there with Mom. He received some fluids while Karla and I sat in a freezing cold waiting room while Mom was eating a half rotten banana. This started our concerns about both of their health and nutrition.

A week later, Dad really wasn’t improving and Mom was focusing on her essential tremors. She had an appointment on January 9 where they changed her medications and talked to her about a treatment she could try at St. Luke’s Hospital where they would implant a sort of pacemaker in her head to control the tremors she had been fighting for at least 12 years. This was a ray of hope for everyone.

But the last day of week 3 of 2018 led me to concern. Mom was so confused. Dad still wasn’t doing well, so neither of them were eating. We decided to meet at their house, spend some time cleaning, and focus on everything they needed at that time. But when I walked in, Mom was sitting in her chair and tried to tell me that Linda was in the bathroom cleaning. She couldn’t come up with any of the words. She did ask Emily to do something and, as Emily pointed out later, actually called her Emily. Mom always accidentally called Emily Melissa, so as I started to sense something was wrong with Mom and expressed that to others, Emily was quick to say, “she called me by my name.” Mom’s confusion and pronounced loss of control of her right arm was too much to see. I walked in to say hi to Linda, but instead got of the room and broke down into tears. Linda told me it was ok, and that we would get everything figured out with Mom and Dad. But we definitely didn’t know what was ahead.

Week 4. Monday. The beginning of one of the most traumatic weeks of the year. I took Mom to her primary care doctor because we were worried about the changes we were seeing. Her doctor attributed it to the change in tremor medication, and we scheduled an appointment with another doctor to review that. She also wanted further testing done. But we never made it to that point, because Wednesday of week 4 of 2018 changed our world.

Karla texted us all just before lunchtime on January 24 to let us know Mom was having more problems, now with her vision and right leg. She had called the doctor who said take her to the ER. So she did. I worked on juggling things at work, but also wanted to be a mom myself so before I made my way to the hospital, I drove to Lawrence to watch Andrew’s final Scholar’s Bowl meet of the year. When we were celebrating his team’s fantastic finish, I got the next in a long series of texts between my siblings. MRI results had just shown that Mom did in fact have a mass in her brain. It appeared to be about the size of a lemon. I gathered myself so Andrew and I could get to Stormont Vail that evening.

Surgery had been scheduled for the next morning. We were thankful the neurosurgeon cleared his schedule to get Mom in immediately as what we learned about the possibilities was not what we wanted to hear. We found that surgery, radiation, and a series of chemotherapy treatments gave her the best chances for survival. Immediately following over 5 hours in surgery, the doctor met with us to say he believed he got much more of the tumor than he had expected to. His original prediction had been something like 60%. But after surgery, he informed us the tumor was larger than he expected, but he thought he’d gotten at least 90%of it. He expected her to start waking up after surgery any time that evening.

Those hours following surgery were the worst. Did they really get the tumor? What will she be like when she wakes up after brain surgery? And eventually, the question in my mind became will she wake up because so much time kept passing with no real sign of her coming back to us. I think it was Friday night, probably 36 hours after the surgery had started on Thursday, that our family sat in that ICU waiting room and admitted the possibility that this may not have the outcome we were hoping for. My brothers and sisters and I left the hospital together late that night. I went home for yet another night of anxiety filled time filled with a few moments of rest.

Things looked a little brighter the next day, as Mom finally did wake up. But week 5 of 2018 brought with it some harsh realities. She didn’t know how to call us by our names. She didn’t know what you call a trash can or a door. She said she had 8 kids. Unless there were some kids she had never told us about, there were definitely some issues with the things that were actually coming out of her mouth. We had some great laughs as she tried so hard to get our names right. Word finding difficulties were part of the problem left behind as the tumor had pushed on her brain, but we helped her the best we could. She was determined to fight this cancer and we were determined to do all we could to help her.

The next weeks were filled with appointment after appointment. As Mom and Dad’s medical power of attorney backups, Karla and I made an effort for at least one of us to be at every appointment. That was definitely no small task. Over the course of the next two months, I think we visited every type of doctor possible in the city of Topeka and even a couple in Leavenworth. Sometimes it was impossible for Karla or I to make it, so the others stepped in and helped as well. Taking care of Mom and Dad in 2018 was definitely a job for our team of 8. Their grandkids stepped up as well, doing things that they could help with, whether it was staying at their house to care for them or mowing their yard.

The weeks of 2018 continued to pass with Mom at Plaza West and starting her radiation treatments at Stormont. Eventually, she had reached the end of what Plaza West could do for her so she went home in March, about week 12 of 2018. Her chemo was through a pill she took, but that daily task became quite the scheduling process. Family meeting after family meeting to make sure we were getting everything done that needed to be done, to support each other during this stressful time, and many times, to laugh at the situations that we were dealing with.

Following this round of treatments, Karla and I took Mom in to have an MRI, which showed no sign of the return of her tumor. We had several weeks that seemed calm compared to the fury that 2018 began with. We were able to celebrate Mom’s birthday on March 25, the Sunday before her actual birthday. She was well enough to spend the evening of her actual birthday with my boys at their Boy Scout Court of Honor. While things weren’t as they had been 6 months before, there was at least a little normalcy as we went through celebrations and graduations this spring. The last little bit of normal we had was a 60th wedding anniversary celebration for Mom and Dad at my house in May.

Week 23 of 2018 brought Mom’s next round of chemo. This was a strong dose, but a shorter time. The plan was to do this type of dosage for a few days every month as long as she could tolerate it. I was out of town during this, so the burden fell on Karla, Linda, and Kim. The day I flew home, that Tuesday in June during the 24th week of the year, was Mom’s last day in her home. Karla took her to see her oncologist who sent her to the hospital. The chemo was too much for her. Summer was spent back and forth between the hospital and Rolling Hills, a rehab facility Mom really seemed to love. Her weeks there weren’t what she had planned for her life as she definitely wanted to be with Dad, but we were thankful for the people that grew to know her and love her at that facility.

Dad had his own share of time in the hospital throughout the summer as well. He started his first visit on Fred and my 21st wedding anniversary, June 7. While I was out of town, I knew it was serious because that was also the morning of Uncle Albert’s funeral. Dad and Albert had spent many years together, from fishing to playing cards. This visit for Dad found he had congestive heart failure. He’d spent 36 years dealing with heart problems, from his first 2 heart attacks on March 8, 1982 when I was just a second grader. His heart had actually amazed some doctors throughout the years but it was finally wearing down on him. It was no longer strong enough to keep his other organs functioning. His kidneys were definitely an area that couldn’t keep up. The fluid would continue to build in his body until it nearly filled his lungs so that he couldn’t hardly talk, and there was so much fluid in his feet and legs it was nearly impossible for him to walk. The doctors were able to do a procedure that removed liters of fluid, but this of course was only a temporary solution. Dad was interested in no other type of treatment and he definitely wasn’t a fan of going to the hospital.

Dad’s second trip during the summer occurred during week 27. We started that day with a phone call that Rolling Hills had taken Mom to the ER on Kevin’s birthday and Keith and Linda’s wedding anniversary, Friday, July 6. We were already taking shifts with Mom when Linda dropped in to give me some things Mom would need. Karla and I both had made plans to be out of town that weekend, so Linda was going to come sit with Mom for a while. But with Linda’s delivery to Mom was the news that she was taking Dad back to the VA ER because of his fluid issues. She and Keith spent their wedding anniversary hanging out at the VA until Dad got transferred to Stormont to be readmitted for the same round as last time. This actually made things convenient, having Mom and Dad just a floor apart in the hospital. The rest of the summer involved separate trips and now they were under the same roof. Maybe not the ideal roof to be under, but it did allow me the chance to get them in the same room together. They drained one of Dad’s lungs on Monday and while they took him for that procedure, I went down to see Mom. When I got back to Dad, I was scared out of my mind. He looked horrible, and the nurse informed me it didn’t go well and they were worried they about lost him. I don’t remember now everything she told me, but I knew I shouldn’t have let him go through that procedure with no one nearby. They debated on the risks of doing the second lung, and Dad and the doctor finally decided they would do it the next day to allow him some time to recover from the first one, and because without draining the lung, his chances of surviving were small. I went with him during the next procedure but it was near the time they were initially thinking of discharging Mom. I believe it was Linda and I playing musical chairs that day so someone could be with them both.

I was able to take Dad home from the hospital on Wednesday, during the 28th week of the year. He told the nurses and doctors that he had his daughters at home to take care of him. I know at least 2 of us upset him a great deal when we said we were concerned for him being at home by himself because we knew we couldn’t cover it 24 hours a day. He continued to tell the medical staff what they wanted to hear until he got discharged and had me drive him home. Dad did things on his terms, and that continued to the minute of his death. As I drove him home that day, he told me he would never go back to the hospital. He said “the doctors need to find another way.” There wasn’t another way, but there was hospice. And as soon as his Midland home health people showed up on Thursday, he told them hospice was the route he wanted so he would never have to set foot in a hospital again.

With Dad home, Mom remained in the hospital as they tried to figure out what was causing her nausea. We had her set to be picked up by Rolling Hills when they delayed it to have her gall bladder looked at. As I sat and talked to the doctor about the gall bladder, I knew she wasn’t strong enough for surgery and couldn’t believe this was a conversation we were having. But it also made me think, what if that is causing her eating problems? Would she be able to eat and not be nauseous if she did have her gall bladder removed? Ultimately, it was decided that was probably not the problem and she was sent back to Rolling Hills where they continued her rehab for a couple more weeks before saying she wasn’t progressing so they had to quit. They did allow us to keep her there while we figured out permanent arrangements.

Another clear MRI was taken during week 31. We received those results during one of the hardest weeks in 2018, the 33rd week. On August 15, Kevin and I toured the Kelly House with Dad because Mom needed a full time care facility to move to, probably permanently. The next day as I delivered the news of Mom’s good MRI, Dad told me he wanted me to take him to the hospice house. Again, our team of siblings came together to get him the final care he needed and to support Mom through what was probably her worst nightmare—losing Dad on August 17. I never thought Mom would be strong enough to spend much time outside of Rolling Hills to see Dad in the hospice house. But Kevin and Kim got her to Dad’s side where she spent the last 7 hours of his life with him. When she accepted it was time to leave, she somehow stood herself up out of her wheelchair to give him a kiss, and then Kevin and Kim left with her. I walked out with them, partly to see if they needed help but more to get outside of the walls of that building. When I walked in, Fred came running down the hall and told me to get in there. And minutes later…or maybe seconds….Dad died with Keith, Linda, Fred, Andrew and I by his side. Overwhelming support for Mom and the rest of us gathered over the next week as we mourned that loss and celebrated his life. But it definitely effected Mom.

Karla continued the hard work as she had all year of dealing with Medicare, Medicaid, care facilities, doctors, health support agencies. Dad’s death changed things, not just emotionally, but in terms of Mom’s financial situation. Changes in social security delayed her scheduled move to the Kelly House. But on September 28, Kim S.’s birthday, that day finally came. Week 39 of 2018. The weeks just kept flying by.

It was a Friday. One thing Mom wanted to do was to stop by her house. I went to work for a little bit so Karla and Linda went to Rolling Hills to pick up Mom, and then I was going to meet them at Mom and Dad’s house around 10. I was there when they got there. Karla wheeled Mom in and I said, “Hi, Mom.” She looked at me, confused, and said, “Hi. Is Dad here?” I had prepared myself for many situations. That wasn’t one of them. I was ready for her to be sad about being in her house. I was ready for her to refuse to leave. All kinds of situations had played out in my mind. But not her asking me if Dad was in the house. All I could mutter was “um, no” before I turned around to get a Kleenex from the bathroom right behind me. Later, Linda pointed out she, as well, turned and went into the living room away from Mom and Karla. It was heart-wrenching. Karla, stuck by the sisters that had deserted her, explained to Mom that Dad had died, and he wasn’t there. By that time I was back looking at Mom and the look on her face was one I recognized. It was the look that she got when she knew she said something that wasn’t right but since processing words had become so hard, she couldn’t say her normal, “Why did I say that? What was I thinking?” It was a relief that she appeared to know she had just temporarily forgotten. She didn’t get too upset with hearing the news once again. We gave her a little while in the house and then moved along for her to see Keith and Linda’s new Sowards Glass location before completing the trip to the Kelly House.

Day 1 at the Kelly House seemed like it was going to be a great fit. The introductory meetings with the staff made us feel like they were going to be people that would love Mom and that Mom would love back. It was a comfort to know that she was living in a place that could give her the 24 hour care she now required where everyone seemed comfortable with each other.

The weeks at the Kelly House did not last long. Within about 4 weeks of Mom being there, we saw noticeable changes. Her tremors were practically gone. While that seems like something to celebrate, it was simply a sign there were changes happening in her brain. Her speech was becoming more difficult. She seemed more confused and not quite herself. On October 28, as I tried to talk to her, I became so upset at trying to understand her when I could tell she was trying so hard to talk. She just kept playing with my sweater and touching my Mickey Mouse necklace. She wanted to tell me something, but she couldn’t find the words. They weren’t completely gone, and I still could figure a few things out over the next few days, but the last day I really remember her saying something to me that I could understand was when I took Emily to see her on Halloween in her Simon the chipmunk costume. She got a few words out and was happy to see Emily on Halloween.

The weekend brought a different story. She was still reacting, but not able to communicate what she wanted to say. When I saw her on Sunday of week 45, she couldn’t even hardly move.

The phone call came at about 9:00 on Monday morning, November 5. Shelia from the Kelly House let me know they had called hospice, and Mom was not doing well. She suggested the family get there to spend some time with Mom. She later apologized that maybe she had called us too soon, but she definitely had not. I would never want to change spending my mom’s last 27 hours by her side.

I was at work when I got the call. I had just done our morning assembly at 8:45 and was walking back down the hall with two of my friends, Jana and Mary. I don’t remember all of our conversation, but I do remember telling them I was supposed to leave for New York and New Orleans later in the week, but I wasn’t sure if my mom would make it that long so maybe our trip wouldn’t be happening. I walked around the corner behind my desk and my phone, lying on the counter, rang. I immediately texted our family group text and called one of Mom’s siblings, asking them to call the others. As much as I wanted to keep my composure at work, I couldn’t do it. I looked down the hall at Jana, Emily’s teacher, as her class was getting ready to go to PE and music, and she knew I needed to take Emily to be with my mom. Emily and I left North Fairview to get to the Kelly House as I continued to try to make sure I had gotten ahold of my family members. Karla wasn’t responding because apparently her phone wasn’t working but I finally figured out a way to get in touch with her. Emily and I had the chance to sit with Mom for a little bit, where I told my mom that she was the best mom I could have ever been lucky enough to have. I shared some things I loved, and some things I wish I’d done better. Emily and I sat together by her side until Kevin and Kim arrived, and everyone else soon started trickling in after that. You could see by Mom’s eyes that she could still hear us even though she couldn’t talk to us or make many movements.

Over the next 24 hours, the people in the room shifted from time to time but we were always there. I went home to sleep about 8:00 that evening, but I was back at midnight because sleep was not happening for me. Kim S. and I watched her breathing as we shifted around in uncomfortable chairs, read books to keep us awake, and chatted now and then. Around 2, we noticed some changes in Mom and asked for hospice to be called back. Both Karla and Mom’s hospice nurse, Jay, got back there about 3. Jay gave Mom an increased dose of morphine to help her with the struggle she was having in breathing. It helped. But within 2 hours, Jay said he wasn’t going to leave Mom because it was clear to him it wouldn’t be long. Mom was still hanging on with really no change when Jay had to leave for a dentist appointment at 9. The next hospice team arrived soon after, as did other visitors for Mom. Minutes after George Gibson gave her a blessing and Pastor Jin said a prayer with us, Mom’s breathing slowed and she peacefully passed away, much like Dad had done just 81 days before.

We stayed with Mom until the last minute. Everyone that wasn’t there when she passed away came back if they could. I had Fred get Andrew out of school because I didn’t know when the funeral would be, and he was supposed to leave on a band trip to New York City the next morning. I didn’t want him to have to choose between his trip and seeing his grandma for the last time. My amazing brothers and sisters quickly said though, we won’t do the funeral until next Tuesday or Wednesday. While they said having the funeral during week 45 of 2018 would be too quick for our out of town relatives to get here, I know they were also supporting my family in the plans we had in place that had been 2 years in the making.

The van from the funeral home broke down on the way to pick Mom up, but that just meant we had a little bit longer to sit in her room with her. Well, we didn’t just sit. We moved all of her things out of the Kelly House while we waited. And it turned in to a bit of comic relief. We agreed it was a good thing we didn’t own the bed that Mom was lying in because that would’ve been loaded up as well even though Mom wasn’t done with it. It was nice to have everything taken care of there immediately so we didn’t have to think about plans to get that taken care of. Once Mom was on her way to Davidson’s, we went home, exhausted and heartbroken.

The funeral home was able to get us in at 9:15 the next morning. I took Andrew to school that morning as he was leaving for the long bus ride to New York City to play in the Veterans Day Parade. Before I left, I looked at Fred and said, what are we doing? We had planned to fly to New York on Thursday to spend a couple of days, then watch the kids march on Sunday, and fly to New Orleans to spend a couple of days with some friends. We had cancelled as much as we could when it was obvious Mom wasn’t going to make it much longer. The only thing we had left was a flight to New York. He asked me what I wanted to do, and I knew I wanted to watch my son play his trumpet on 5th Avenue. So we knew Wednesday would be a day to move mountains to do what we needed for both my mom and my son.

Funeral arrangements were not too difficult to make, as the funeral director sat with Dad’s information in front of him. There was a lot of copy and paste since it was so soon after Dad’s funeral. We had done this before. And it was fresh in our memories. We all had some assignments to take care of and went about our day to take care of those. I took care of things at school and then focused on Mom. We got together that night to pick the songs, choose some pictures, and make sure we were ready to get through week 46 of 2018.

Our trip to New York was a little surreal. We did a food tour of the Lower East Side….during which I received the text on what the official cause of death was being listed as on the death certificate. We went to Central Park Zoo….at which time I received two pictures of Mom in her casket…use a wig or don’t use a wig? There was a definite blend of escape in the tourist sites and the Broadway shows, but never really a moment during the trip when my mind was free of the loss of my mother. The song, For Good, at the end of Wicked had me in full blown tears….

“I’ve heard it said that people come into our lives for a reason
Bringing something we must learn and we are led to those who help most to grow
If we let them and we help them in return
Well I don’t know if I believe that’s true but I know I’m who I am today
Because I knew you

Who can say if I’ve been changed for the better?
But because I knew you I have been changed for good”

….Mom definitely wasn’t a witch in Wicked, but she led people to grow and she did change us and it was for the better.

The first day of week 46 was a tough one. We got up with two tasks for the day: watch the parade and fly home. I think the busyness of the other 3 days in New York had allowed me to keep my emotions to a minimum but the thought of going home caused a flood of tears that kept happening at random points throughout the day. Those minutes of the parade were the best part of the month of November. That was an experience Andrew will have for the rest of his life. But once that was over, it was time to get back to the reality of life.

Monday once again was a hectic planning day but one that I kept stalling. There were two things I needed to do—photos for the funeral video and photos for the display boards. They happened, but they weren’t easy.

November 13 and 14 were like days we had already experienced this year….Tuesday we had the family time at the funeral home, the visitation full of family and friends, and the moments to relax with our out of town cousins after. And Wednesday. The day of the funeral. The last day we’d ever see our mom in person. Even harder than Dad’s funeral for many reasons, but the most obvious reason was the one that one of my siblings stated at the end of the service: we’re orphans. We went from having both parents here on earth to love us on August 15 to burying both of them by November 14. Tuesday night, Kevin said what I’ve been trying to tell myself. I’m glad January happened. If Mom hadn’t had brain cancer, would we have known that we needed to spend every free minute with her this year? Would we have been with Dad as much as we were? We can look back on 2018 and know this is a year we spent more time with our parents than we have since we lived at home. It wasn’t always the best, happiest times, but we had that time with them that we wouldn’t trade for anything. There were times we didn’t think we could keep up with all that was happening. There were moments that were frustrating beyond words. There were moments that will live in our memories forever. For me, I was able to be there for each of their last breaths. I consider myself very lucky for that. My siblings are older than I am. They had more years than I got with Mom and Dad. Of course, that’s how life works. I will miss them seeing my kids graduate from high school and college. I will miss them when Emily has a bigger role in her dance performances. I will miss them on holidays and I will miss them on normal days. Week 46 has brought some difficult realities to light.

My brothers and sisters were not happy when I suggested we get up and speak at the funeral for Mom just like we did for Dad. But we all did it. And we shared a little bit of our view of our mom with everyone in that room. And then we said goodbye.

No one can imagine how many times we have said we are done with 2018. It’s been a year filled with things we never expected. We’ve shared so many tears but we’ve shared even more laughter. Our Mom raised us to know that family is the most important thing. We’ve dealt with so much pain but we’ve done it together. Brain cancer…congestive heart failure…and all of the little problems that went along with those. I have to look at my husband and kids and see that 2018 has had some of the highest points of my life as well…Zach is now an Eagle Scout, Governor’s Scholar, and so many other honors as he graduated at the top of class from Seaman and started in the Business Leadership Program and Honors program at KU and he seems to be doing so well as he starts college despite the heartache back home. Andrew had his moment in New York, is keeping at the top of his class even with the death of two of his grandparents and his concussion. Emily made Junior Company in dance and is doing so well in school. And Fred got reelected after leading the K12 Education Budget process for the state and saw a major improvement to our zoo that he has been a part of leading. Mom would want me to look at those things and know 2018 hasn’t all been bad.

But we have 6 weeks left of this year that we have all grown to despise. We will make it through those 6 weeks the same way we’ve made it through the first 46 weeks of the year. But things will be different. Life will never be the same. What we can know is that for our parents, their suffering is over. Mom left an impact on each of her family members, as well as so many other people around her, always with a smile on her face and finding the best in everything.