He Knew
Four weeks ago today. Life changed. He knew life was changing that day. The rest of us may not have been ready yet or realized how quickly things would happen, but he knew.
It was the first day back to school officially. I left work for a little while to meet Karla and my mom at the Cancer Center to get the results of the MRI Mom had the Friday before. We had been concerned that she was so weak, still had such frequent headaches and stomach problems, and a myriad of other concerns. The doctor wanted to do an MRI just to check out her brain to see if any traces of the cancer could be seen returning. Karla texted me before the appointment because she had already read the test results that morning. Mom had been so distraught at the last appointment where we'd set up the MRI. Mom's chart online already told us that she was still in the clear. No return of the glioblastoma. I really didn't have to go to the appointment because Karla was going too. But easy appointments have been much fewer than the difficult ones in 2018, and I'd already played with the puzzle of my schedule to fit it in. I wanted to see Mom's relief at some good news since she'd had such a rough summer.
We were all happy at that appointment. It was much different than the two weeks before that Mom felt so sick after talking to her oncologist that we weren't sure how we were getting her back to her nursing home. That time, she just wanted to lay down. She didn't want to think about the return of the brain tumor. She didn't want to hear the things we might have to consider if the tumor was back. But that wasn't the news on August 16. The news was your brain is clear. You just need to get your appetite back.
With Mom and Dad living across town from each other this summer, it was hard to give either of them the adequate time they needed or wanted. Dad had gotten quite frustrated that Karla and I knew all of the medical information, even when there really wasn't anything new to know. He wasn't able to hop in his car and be at every appointment and hear from every one of Mom's doctors for himself how she was doing. In fact, it had become impossible for him to get himself across town to even visit Mom. We were trying to fix that. On the day before, Kevin had picked up Dad, and the three of us toured the Kelly House in Meriden, a place we hoped Mom could go live so it would be more accessible for Dad. There wouldn't be a huge amount of traffic between Dad's house and the Kelly House, so we hoped it would be a better solution than where she is now. As we waited at the Kelly House to be let in, Dad recalled that it used to be the bait store he stopped at on his way to Perry from our house on 62nd Street. I think that was Dad's first sign of comfort, that Mom would be living in the old bait store (though it looks much more like a home than a bait store now). Once Karla and I had gotten Mom back in the van with Kaci and Maria, the transportation team from Rolling Hills, we stood in the parking lot and talked a little before we both headed back to work. It had been a fast appointment so as I started my car, I instantly jumped back out to tell Karla I was going to stop by Dad's to make sure he knew the news immediately. I remember telling her, "it will only take 10 minutes." It was far from only 10 minutes.
As I drove down the street and approached Dad's house, there was an unfamiliar SUV parked in the street in front of the house. I turned in the driveway and immediately went in. Dad was sitting at the dining room table, at the chair nearest the kitchen. In the seat to his right was clearly a Midland Hospice person, though one I hadn't met yet. Dad had Midland services before his hospital stay in July. When he left the hospital, though, he told his nurse, Amy I think was her name, that he wanted no more treatment. That started the ball rolling in mid-July for the hospice team to come in. I'd met the social worker but not the nurse from hospice. During those last weeks of summer, I had tried to go on days when he wouldn't have his Midland team there so we could make sure someone was checking on him as often as possible. He was a pro at cancelling their services though. I knew the nurse wouldn't cancel, so she was not one I had encountered.
As soon as I walked in, the nurse, Dani, turned and looked at me and said, "Oh good. You must be the other daughter. I was just about to call you." Warning sign #1: Dani doesn't come on Thursdays. Or in the afternoon. Dad had called her in.
Dani proceeded to tell me she had been there a little while because Dad had called her. She went over the problems he was having and the options they had discussed. As she went through the fact that it sounded like his lung was completely full and no air was passing through it, and the trouble he was having walking, or even moving or talking at all. He and Dani had come to the conclusion that a respite stay at the hospice house would be a good idea for him. They could adjust his lasix, which was medication to help remove excess fluid from his body. He wanted no other treatment than that. Dani reminded him he could stay in respite care for up to 5 days. At any time, if he needed additional care, they could move him to be an inpatient care case. Dad was ready for respite care. He knew much more than we did.
I texted my brothers and sisters to let them know Dad's decision and that in about 2 hours, I'd take him over there. He sat at the table and gave me a checklist of things to take care of. His AT&T bill needed paid. All of his other bills were paid. We needed to call his neighbor to tell him what was going on. His car needed put in the garage. Dani wanted him to lie down with oxygen and not try to exert any energy until we were ready to leave. He wanted to walk to his bedroom to lie down even as Dani and I were offering the walker with a seat or the wheelchair to move him around. He took the few steps from his dining room chair to the steps that lead to the kitchen. We got him up the stairs, of course, with Dad doing most of the work because he didn't want our help. Looking back, I know that he knew this was the last walk he was taking through his house. He made it through the kitchen (a very small room but he made it with us near him) and into the front room where we finally got him to sit on the walker so Dani could push him the rest of the way to his bed. She got him to the side of the bed and we got him to lie down. He had an oxygen tank in his bedroom that he had not used, but Dani put it on him and told him he was to stay there until we were ready to move him to the house at Midland. He said he was tired and wanted to nap so I was going to run back to work to pick up my things. I'd left in a hurry for Mom's appointment and expected to be back within 2 hours, including the stop at Dad's. But that 10 minute stop had turned into an eternity.
Before Dani could get Dad settled, he had stories for her. Since I hadn't met her before, he had to make sure she knew I was the 5th child. The one that came so fast they had to drop the other kids off at the corner of Topeka Blvd and Lyman Rd so they could walk to my grandparents house at 410 NE Lyman. He'd gotten Mom dropped off at the hospital and he stopped to fill out the paperwork. Before he was done, I was born and the other kids were just walking up the driveway. When they asked what they wanted to name me, Dad said "quit--KUIT--since we all started with a K." I don't know how factual the story was, but it's a story I'd heard more times than I can count. In fact, nearly every doctor appointment I took him to and every meeting we had with medical people in the past year included that story. It had grown to be a story I was so tired of hearing. I was thankful, however, that this was the first time I'd met Dani so I got to hear that story one last time. Of course, the story of my name wasn't the only story he had to share with Dani. He told her about my son, Zach, and how proud we were of him. How all of my kids were so wonderful. But Zach had done something this summer that was simply amazing. He was taking a national business test in Baltimore (Business Calculations at the FBLA National Conference, to be exact) and he forgot his pencil. He placed third in the nation without a pencil. He also, of course, had to make a comment about Zach choosing the red and blue school, but I quickly pointed out to Dad that the shirt he was wearing that day was in fact, red and blue. Dad started to go on about my husband as well because Dad loved to talk about politics, but Dani and I both cut his stories short because he was struggling so much to talk. We told him to take a nap. I'd be back shortly and Dani would get the paperwork going for his respite stay at the House. He finally agreed.
Dani and I locked up the house and walked outside. She stopped me in the driveway and said, "I'm not sure he realizes what's happening here. You all need to prepare yourselves that this isn't going to end how he wants it to end." I knew that when I walked in the door an hour earlier. I didn't want to admit that but we knew the time between his last two hospital stays was right at 3 weeks. He'd been out of the hospital for over a month. There was no way, without extensive treatment, his life was going to continue. I didn't have to go back to work at that moment. But I couldn't stay at that moment either. I needed out. I could've gone anywhere. I could've driven around the block a few times. It truly didn't matter. I needed to get out of the walls of my parents' house where I knew the inevitable. I was watching my parent live in his house for the last time. I drove back to school where many of my dearest friends were. I needed friendly, comforting faces even if just for a brief moment. I tidied up my area the best I could in a matter of minutes because I wasn't going to waste time staying there. But I told a couple of key people what was happening, and I returned. I don't even think I was gone 30 minutes. When I got back, Dad was asleep. I let him rest in his bed while I straightened up the house and took out the trash. I think I screamed out loud when I turned from the outside trash can straight across from the door to the house because I saw someone standing there. It was my brother. How he drove into the driveway, crossing the path in front of the door where I had been most of the time, I'll never know. I was definitely in a different world. He and I went back in. Others began to arrive as well, and we decided Kevin and Kim would drive Dad in their car so we didn't have to take Dad's car. The rest of us had SUVs that were hard for Dad to get in and out of. I went back into the bedroom to get Dad's things ready. He had gotten himself to the bathroom so I called in to make sure he was ok and gave him some time. I ran down to the basement to get a bag to pack his things in for his respite stay. When I came back, we all went in to help him along and get his things packed. I had folded a couple of shirts and put them on the bed while he was in the bathroom. As he came out, he sat on his walker and asked me to get some things out of the closet. I asked him what he wanted, and he asked for one shirt and one pair of jeans. I asked him what else. He said nothing else from the closet. I remember standing in front of the closet thinking, "I guess I will run back over here tomorrow and pick up something else when he needs it." Looking back, that was a moment when he knew. He asked for one of everything. I put in more than one pair of underwear, more than one pair of socks, more than one handkerchief. He could stay there for five days. I never dreamed he would only stay for one. But he knew.
Those extra shirts I had folded on the bed? Linda looked at them and said, "what about these?" I started to say I had just put those there, but Dad said, "It doesn't matter. You can throw them in." Looking back, he didn't carry them to the hospice house or have to bring them back home and take them out of the bag. It truly didn't matter if those shirts stayed on the bed or went with us. In fact, nothing I packed mattered. A few days in respite care, I would've had to go back to get more clothes for him. But he knew he didn't have a few days.
We moved Dad out to the dining room to make sure everything was ready. We had some last minute things to take care of and he went over that checklist again. He tried to show us where the key to the safe was, but he was showing us Karla's car keys. He was trying so hard to talk and struggling with it. But he had things to make sure we knew.
We all drove in a little caravan to the hospice house. Kevin and Kim drove Dad in the front, I think I was by myself in my car behind them, and Karla and Linda were in Linda's Jeep behind me. The path from my parents' house to Midland is a route I don't often take, but I've already ended up in that area twice since then, in less than a month. I was amazed by the quiet, beautiful setting that is Midland. I never knew that existed so close to roads I do travel all the time.
Once we got to the House, things kind of become a blur. I'm sure they had us wait outside while they checked Dad over and got him settled in bed. We spent some time in his room, and he made sure we watched Jeopardy. He never missed Jeopardy. In fact, he had watched something about Alex Trebek this summer that he was so impressed with. There was a story I hadn't heard my whole life, but he'd definitely gotten it in many times in the weeks that he knew the story about Trebek's life. The Midland doctor came in during Jeopardy to talk about the situation and get to know Dad a little. I think the comfort of Jeopardy in the background helped with the reality of a hospice doctor interviewing my dad. I do remember Dad telling her that he'd had many doctors throughout his life, and he was pretty good at knowing what needed to be done. She asked him what his professional opinion was in his case.
After Jeopardy was over and the doctor left, Dad was actually appearing to be at the best I'd seen him that day. They were bringing a sandwich in for his dinner. He was ready to eat and rest. We were all ready to take care of what we needed to do. I needed to make a trip to talk to Mom. I know my brothers and sisters had things to do too. Maybe if we knew as much as he knew, we might have done things a little differently. But before any one of us left, Dad made sure he did not leave a single thing unfinished. He gave us all a long talk. A talk about what wonderful kids he and Mom had raised. A talk about the great life we have lived over the many years. A talk about the sacrifices we have made, especially over the past eight months, to make sure our parents were taken care of. It was a talk of family, a talk of love, a talk that each of us listened to intently and Dad spoke from the heart with every bit of energy he had. And it was the last talk my Dad ever gave to his kids. I believe he knew that was the last talk. My mind told me I'd be back to see him the next day and we would talk again. He knew there wasn't time to waste so he needed to say all he wanted to say. And that he did. We left him with hugs and words of love.
It was the first day back to school officially. I left work for a little while to meet Karla and my mom at the Cancer Center to get the results of the MRI Mom had the Friday before. We had been concerned that she was so weak, still had such frequent headaches and stomach problems, and a myriad of other concerns. The doctor wanted to do an MRI just to check out her brain to see if any traces of the cancer could be seen returning. Karla texted me before the appointment because she had already read the test results that morning. Mom had been so distraught at the last appointment where we'd set up the MRI. Mom's chart online already told us that she was still in the clear. No return of the glioblastoma. I really didn't have to go to the appointment because Karla was going too. But easy appointments have been much fewer than the difficult ones in 2018, and I'd already played with the puzzle of my schedule to fit it in. I wanted to see Mom's relief at some good news since she'd had such a rough summer.
We were all happy at that appointment. It was much different than the two weeks before that Mom felt so sick after talking to her oncologist that we weren't sure how we were getting her back to her nursing home. That time, she just wanted to lay down. She didn't want to think about the return of the brain tumor. She didn't want to hear the things we might have to consider if the tumor was back. But that wasn't the news on August 16. The news was your brain is clear. You just need to get your appetite back.
With Mom and Dad living across town from each other this summer, it was hard to give either of them the adequate time they needed or wanted. Dad had gotten quite frustrated that Karla and I knew all of the medical information, even when there really wasn't anything new to know. He wasn't able to hop in his car and be at every appointment and hear from every one of Mom's doctors for himself how she was doing. In fact, it had become impossible for him to get himself across town to even visit Mom. We were trying to fix that. On the day before, Kevin had picked up Dad, and the three of us toured the Kelly House in Meriden, a place we hoped Mom could go live so it would be more accessible for Dad. There wouldn't be a huge amount of traffic between Dad's house and the Kelly House, so we hoped it would be a better solution than where she is now. As we waited at the Kelly House to be let in, Dad recalled that it used to be the bait store he stopped at on his way to Perry from our house on 62nd Street. I think that was Dad's first sign of comfort, that Mom would be living in the old bait store (though it looks much more like a home than a bait store now). Once Karla and I had gotten Mom back in the van with Kaci and Maria, the transportation team from Rolling Hills, we stood in the parking lot and talked a little before we both headed back to work. It had been a fast appointment so as I started my car, I instantly jumped back out to tell Karla I was going to stop by Dad's to make sure he knew the news immediately. I remember telling her, "it will only take 10 minutes." It was far from only 10 minutes.
As I drove down the street and approached Dad's house, there was an unfamiliar SUV parked in the street in front of the house. I turned in the driveway and immediately went in. Dad was sitting at the dining room table, at the chair nearest the kitchen. In the seat to his right was clearly a Midland Hospice person, though one I hadn't met yet. Dad had Midland services before his hospital stay in July. When he left the hospital, though, he told his nurse, Amy I think was her name, that he wanted no more treatment. That started the ball rolling in mid-July for the hospice team to come in. I'd met the social worker but not the nurse from hospice. During those last weeks of summer, I had tried to go on days when he wouldn't have his Midland team there so we could make sure someone was checking on him as often as possible. He was a pro at cancelling their services though. I knew the nurse wouldn't cancel, so she was not one I had encountered.
As soon as I walked in, the nurse, Dani, turned and looked at me and said, "Oh good. You must be the other daughter. I was just about to call you." Warning sign #1: Dani doesn't come on Thursdays. Or in the afternoon. Dad had called her in.
Dani proceeded to tell me she had been there a little while because Dad had called her. She went over the problems he was having and the options they had discussed. As she went through the fact that it sounded like his lung was completely full and no air was passing through it, and the trouble he was having walking, or even moving or talking at all. He and Dani had come to the conclusion that a respite stay at the hospice house would be a good idea for him. They could adjust his lasix, which was medication to help remove excess fluid from his body. He wanted no other treatment than that. Dani reminded him he could stay in respite care for up to 5 days. At any time, if he needed additional care, they could move him to be an inpatient care case. Dad was ready for respite care. He knew much more than we did.
I texted my brothers and sisters to let them know Dad's decision and that in about 2 hours, I'd take him over there. He sat at the table and gave me a checklist of things to take care of. His AT&T bill needed paid. All of his other bills were paid. We needed to call his neighbor to tell him what was going on. His car needed put in the garage. Dani wanted him to lie down with oxygen and not try to exert any energy until we were ready to leave. He wanted to walk to his bedroom to lie down even as Dani and I were offering the walker with a seat or the wheelchair to move him around. He took the few steps from his dining room chair to the steps that lead to the kitchen. We got him up the stairs, of course, with Dad doing most of the work because he didn't want our help. Looking back, I know that he knew this was the last walk he was taking through his house. He made it through the kitchen (a very small room but he made it with us near him) and into the front room where we finally got him to sit on the walker so Dani could push him the rest of the way to his bed. She got him to the side of the bed and we got him to lie down. He had an oxygen tank in his bedroom that he had not used, but Dani put it on him and told him he was to stay there until we were ready to move him to the house at Midland. He said he was tired and wanted to nap so I was going to run back to work to pick up my things. I'd left in a hurry for Mom's appointment and expected to be back within 2 hours, including the stop at Dad's. But that 10 minute stop had turned into an eternity.
Before Dani could get Dad settled, he had stories for her. Since I hadn't met her before, he had to make sure she knew I was the 5th child. The one that came so fast they had to drop the other kids off at the corner of Topeka Blvd and Lyman Rd so they could walk to my grandparents house at 410 NE Lyman. He'd gotten Mom dropped off at the hospital and he stopped to fill out the paperwork. Before he was done, I was born and the other kids were just walking up the driveway. When they asked what they wanted to name me, Dad said "quit--KUIT--since we all started with a K." I don't know how factual the story was, but it's a story I'd heard more times than I can count. In fact, nearly every doctor appointment I took him to and every meeting we had with medical people in the past year included that story. It had grown to be a story I was so tired of hearing. I was thankful, however, that this was the first time I'd met Dani so I got to hear that story one last time. Of course, the story of my name wasn't the only story he had to share with Dani. He told her about my son, Zach, and how proud we were of him. How all of my kids were so wonderful. But Zach had done something this summer that was simply amazing. He was taking a national business test in Baltimore (Business Calculations at the FBLA National Conference, to be exact) and he forgot his pencil. He placed third in the nation without a pencil. He also, of course, had to make a comment about Zach choosing the red and blue school, but I quickly pointed out to Dad that the shirt he was wearing that day was in fact, red and blue. Dad started to go on about my husband as well because Dad loved to talk about politics, but Dani and I both cut his stories short because he was struggling so much to talk. We told him to take a nap. I'd be back shortly and Dani would get the paperwork going for his respite stay at the House. He finally agreed.
Dani and I locked up the house and walked outside. She stopped me in the driveway and said, "I'm not sure he realizes what's happening here. You all need to prepare yourselves that this isn't going to end how he wants it to end." I knew that when I walked in the door an hour earlier. I didn't want to admit that but we knew the time between his last two hospital stays was right at 3 weeks. He'd been out of the hospital for over a month. There was no way, without extensive treatment, his life was going to continue. I didn't have to go back to work at that moment. But I couldn't stay at that moment either. I needed out. I could've gone anywhere. I could've driven around the block a few times. It truly didn't matter. I needed to get out of the walls of my parents' house where I knew the inevitable. I was watching my parent live in his house for the last time. I drove back to school where many of my dearest friends were. I needed friendly, comforting faces even if just for a brief moment. I tidied up my area the best I could in a matter of minutes because I wasn't going to waste time staying there. But I told a couple of key people what was happening, and I returned. I don't even think I was gone 30 minutes. When I got back, Dad was asleep. I let him rest in his bed while I straightened up the house and took out the trash. I think I screamed out loud when I turned from the outside trash can straight across from the door to the house because I saw someone standing there. It was my brother. How he drove into the driveway, crossing the path in front of the door where I had been most of the time, I'll never know. I was definitely in a different world. He and I went back in. Others began to arrive as well, and we decided Kevin and Kim would drive Dad in their car so we didn't have to take Dad's car. The rest of us had SUVs that were hard for Dad to get in and out of. I went back into the bedroom to get Dad's things ready. He had gotten himself to the bathroom so I called in to make sure he was ok and gave him some time. I ran down to the basement to get a bag to pack his things in for his respite stay. When I came back, we all went in to help him along and get his things packed. I had folded a couple of shirts and put them on the bed while he was in the bathroom. As he came out, he sat on his walker and asked me to get some things out of the closet. I asked him what he wanted, and he asked for one shirt and one pair of jeans. I asked him what else. He said nothing else from the closet. I remember standing in front of the closet thinking, "I guess I will run back over here tomorrow and pick up something else when he needs it." Looking back, that was a moment when he knew. He asked for one of everything. I put in more than one pair of underwear, more than one pair of socks, more than one handkerchief. He could stay there for five days. I never dreamed he would only stay for one. But he knew.
Those extra shirts I had folded on the bed? Linda looked at them and said, "what about these?" I started to say I had just put those there, but Dad said, "It doesn't matter. You can throw them in." Looking back, he didn't carry them to the hospice house or have to bring them back home and take them out of the bag. It truly didn't matter if those shirts stayed on the bed or went with us. In fact, nothing I packed mattered. A few days in respite care, I would've had to go back to get more clothes for him. But he knew he didn't have a few days.
We moved Dad out to the dining room to make sure everything was ready. We had some last minute things to take care of and he went over that checklist again. He tried to show us where the key to the safe was, but he was showing us Karla's car keys. He was trying so hard to talk and struggling with it. But he had things to make sure we knew.
We all drove in a little caravan to the hospice house. Kevin and Kim drove Dad in the front, I think I was by myself in my car behind them, and Karla and Linda were in Linda's Jeep behind me. The path from my parents' house to Midland is a route I don't often take, but I've already ended up in that area twice since then, in less than a month. I was amazed by the quiet, beautiful setting that is Midland. I never knew that existed so close to roads I do travel all the time.
Once we got to the House, things kind of become a blur. I'm sure they had us wait outside while they checked Dad over and got him settled in bed. We spent some time in his room, and he made sure we watched Jeopardy. He never missed Jeopardy. In fact, he had watched something about Alex Trebek this summer that he was so impressed with. There was a story I hadn't heard my whole life, but he'd definitely gotten it in many times in the weeks that he knew the story about Trebek's life. The Midland doctor came in during Jeopardy to talk about the situation and get to know Dad a little. I think the comfort of Jeopardy in the background helped with the reality of a hospice doctor interviewing my dad. I do remember Dad telling her that he'd had many doctors throughout his life, and he was pretty good at knowing what needed to be done. She asked him what his professional opinion was in his case.
After Jeopardy was over and the doctor left, Dad was actually appearing to be at the best I'd seen him that day. They were bringing a sandwich in for his dinner. He was ready to eat and rest. We were all ready to take care of what we needed to do. I needed to make a trip to talk to Mom. I know my brothers and sisters had things to do too. Maybe if we knew as much as he knew, we might have done things a little differently. But before any one of us left, Dad made sure he did not leave a single thing unfinished. He gave us all a long talk. A talk about what wonderful kids he and Mom had raised. A talk about the great life we have lived over the many years. A talk about the sacrifices we have made, especially over the past eight months, to make sure our parents were taken care of. It was a talk of family, a talk of love, a talk that each of us listened to intently and Dad spoke from the heart with every bit of energy he had. And it was the last talk my Dad ever gave to his kids. I believe he knew that was the last talk. My mind told me I'd be back to see him the next day and we would talk again. He knew there wasn't time to waste so he needed to say all he wanted to say. And that he did. We left him with hugs and words of love.
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