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What is Strength? A Dementia Story

I haven’t written one thing since Daddy died. I guess, sometimes, you just get a bit stuck. As much as we expected and, in many ways, welcomed his passing, it was still a huge hole in our lives. It’s so weird, being without someone who has always been so present in your life. You truly don’t know how to move past it. And, in many ways, you don’t. Maybe you pivot. Or shift. But I don’t believe we move past. Sure, we go on, day after day. The firsts. The first Tax Day, Mother’s Day, Juneteenth, Fourth of July… The year of firsts. Then come the seconds. Thirds. On and on it goes.


And how do we do this? Well, because we must.


The day Daddy died, I had written about five pages about our experience in the hospital. It was well-written and incredibly in depth. But when I went back to the hospital to see him, I didn’t write anymore.


I came home without him.


I wrote what I would say at his funeral. It was hard because I didn’t feel like writing. I worried I wouldn’t be able to, but I knew I needed to. That has been the only thing I have written since then, two months ago.


Daddy went into the hospital on a Thursday, and he died the next Tuesday. Those six days were filled to the brim with pain and powerful moments.


I had grown so incredibly protective of my dad. Many people saw that I never left his side during the benefit. My mom or I stayed with him around the clock while he was in the hospital, only leaving to use the restroom as quickly as possible. We wanted to anchor him in some small way to what was happening around him. We wanted him to see one of the two people he loved the most in all the world, right next to him, at all times.


The more he stayed in the hospital, the more delirium took him even farther from us. His mind got worse and worse. But there were also numbers, his O2 stats, that never seemed to improve for long. Those numbers gave my mom and me a feeling that this was the end.

My mother and I took shifts. We had made this unspoken plan, and each of us took turns during the day and night, staying with him so the other could rest. As I entered to relieve her on Sunday morning, her eyes looked at me and I knew I was in trouble. She said he had slept about 45 minutes. I told her to go on to bed. I settled in for a chill day, thinking he’d sleep all day. I was wrong. He slept for 15 minutes – the whole day.


My poor daddy, his mind was so gone that day. It was the most taxing day I had ever had in my life. While the respiratory therapist was there, I took a break to go eat my lunch. I needed six minutes of a break, and that was what she was willing to offer. While I was downstairs, someone asked me how I was - never a good thing to be nice to me when I'm trying my best to suck it up... I burst out crying. I didn't have time to wallow, so I wiped my tears, took a deep breath, and headed back up the stairs. As I ascended the stairs, I thought, this is my version of strength. We see people, so often, standing in the battlefield, acting like this is what they expected, not crying, and we say, "Wow, that is strength." But the truth is, crying, going up those stairs, headed back into that room, that is real strength. Dripping tears onto my dad as I'm wrestling with him to put his oxygen back on, that's my version of strength.


The doctor released him, much to our “are you sure?” raised eyebrows, and we took him home Sunday night, hoping to reorient his mind. My mom had done such a wonderful job taking care of him, neither of us were ready to put him in a place. We had been told a rehab facility might help him gain his strength, but his mind was so bad, we needed to see if we could get him back on track.


I got them home and tucked in for the night. I tentatively left them. I never heard a word from them, so I had hoped things were okay.

I texted my mom first thing Monday morning. She only replied, “He has to go to a rehab facility.” I knew then, things were bad. She wanted him home, but it wasn’t possible. It the midst of the hospital visit, he had forgotten he had dementia, forgotten he was so ill. He had seen a prowler. He wouldn’t keep his oxygen on. Things were getting a bit dangerous.


It took me until 4pm to get him in a facility. This is a weighted sentence for anyone who has ever had this experience. I am so grateful we had a place for Daddy to go. That day felt just like the day we took my grandfather to a nursing home in the 90s. I stayed with my grandmother while they drove around, trying to find a place for him – even getting rejected at a place they thought would take him in. The day you take your loved one to a care facility leaves a cavity in your chest. That’s like a certain type of day. It’s got its own category in life.


I was fortunate throughout my life to have felt “capable” of handling most things that came my way. It wasn’t until JoAnn died that I ever said the words, “I can’t do this.” I said those words several times when she died. Since she died, I’ve been through some of the hardest times in my life, emotionally and physically, but hadn’t spoken those words again.


Until that Monday when we were about to take him to a rehab facility.


“I can’t do this.”


I can’t leave my Daddy all alone.

I can’t leave him alone in a strange place.


I also cannot not tell him that we are leaving him there alone. But I knew I had to.


We got him in the car and drove him to Glen Rose. I told him what was happening, that he was sick, and we needed him to get stronger. If he could reorient and get stronger with his oxygen stats, we could potentially bring him home, but in my heart, I felt he’d ever come home again.


I walked into the facility feeling lost and shaken to the core. I turned the corner and saw someone I knew. It’s amazing what comfort a familiar face is at a time like that. They don’t even have to be your best friends, just knowing someone is a comfort. We knew they’d take care of Daddy. We got him settled into a room. We told him to rest, and we’d be back the next morning, knowing that he wouldn’t understand for long.


Walking back to the car was a terrible feeling. Leaving him there. Not understanding. It felt so final. So awful. So mean. Yet, we were doing what needed to be done for him. This is the one part of this time that gives me the most guilt. I keep thinking of him, alone, in that room, and it makes my heart hurt. But I almost immediately have a conversation with Daddy and tell him how guilty I feel about leaving him there. He tells me to not worry. That we did what needed to be done. That he knows how much we love him. That it is absolutely, unquestionably okay.


Of course, that evening, he texted me to please come get him. I seemed to be the only person he knew how to text there at the end. I told him that I couldn’t, to please get some rest, and we will come see him first thing in the morning. He agreed. But what a blow to my heart.


The next morning, Mama got there first thing. His O2 was in the 60s. All he said to her was, “I’m so sick.” It had been up and down from 70s to 80s for about a week now. And he had struggled with pneumonia for months. They sent him over to the ER there, and she called me that I needed to get there as soon as I could.


Lily rushed me over there. They wouldn’t let her come back, and barely let me. My mom and I knew how serious this was – we knew the seriousness when he was in Stephenville, but we seemed to be the only ones.


They tried multiple machines on him to get his O2 up, each one stronger than the one before. They would get the number up into the 90s, and within 20 minutes, it would start to fall again. The Bi-pap machine was a nightmare. It forced oxygen into and out of his lungs. He would fall asleep and wake up fighting. He thought we were holding him down. We would jump up and try to get him to calm down, all the while he is getting more and more upset with us. Our nerves were absolutely frayed. We did that ER almost entirely alone with no help from staff.


After fighting with him most of the day, we got him moved to a room. There, people finally realized how bad things were. And, for the first time, we let visitors come and see him.


The doctor told us that the next step was a ventilator, that we’d have to transfer him to Fort Worth, and that he’d never get off. Mama and I had already made the call to not resuscitate. We also made the call to not ventilate. The respiratory therapist told us if we took the Bi-Pap off, his O2 would fall. We were already aware of that.


They took it off and just put the O2 in his nose. They took the O2 sensors off. Pulse sensors off. The respiratory therapist told me I didn’t want to watch the numbers. We had started hospice care in our own way. The doctor was committed to making him as comfortable as possible. Our nurse, at 7pm, used to be a hospice nurse.


The respiratory therapist came to us and told us exactly what we could expect. How his breathing would sound at the end. What was going to happen and how it would happen.


“I can’t do this.”


I cannot watch my Daddy die.

I cannot listen for his breath to sound rattly.

I cannot watch him struggle.


I took a moment to walk down the hall, and then I came back.


When the Bi-Pap was taken off, Daddy was very awake and talking. He didn’t remember that he was so ill, nor where he was, just that he wasn’t home. But, he was significantly more comfortable without that machine on.


He wanted us to all go out to eat – just like Daddy. As everyone was talking with him about where to go eat, I felt a burning in my chest. I had to tell him what was happening whether he’d remember it or not. I asked everyone to leave the room and told him I needed to talk to him.


He said, “You need to talk to me?”


“Yes, Daddy.”


I told him he was sick, and he wasn’t going to get better. He asked me what was wrong with him. I told him his lungs were not working and we couldn’t get them to. We had tried everything, but they kept getting worse. I told him he wasn’t going to make it. He apologized and genuinely thanked me for telling him. Then he told me I was in charge of his tools. To get Mama better mower. I told him I loved him so much. He told me the same. We hugged. I told him, through tears, I was so very sorry. He assured it me it was okay. I asked if he wanted to get Mama in there. He did, so I sent for her and told her he knew what was happening. We had such a special moment together, the three of us. We told him to go on ahead, we would take care of each other. We would be all right. We loved him so much.


After that, I asked if he was ready to see the people again. He said he was, so we let everyone come back in.


Of course, in less than a minute, he said, “Where are we going to go eat?” I didn’t mind though. We had those blessed 10 minutes. For me. For him. For Mama. Whoever it was for, I will always be grateful. Many people do not get to have those moments.


He went downhill from there.


I saw a thing that said, “People don’t die like they do in the movies.” And that’s so true. Dying isn’t pretty. It’s brutal and hard and unpleasant. Maybe sometimes it is, but I certainly didn’t think so when Daddy was dying. Toward the end, he was struggling so hard to breathe. I wanted to cover his mouth and nose to help him along. I absolutely hated being beside him as he fought.


But there was something else to the night Daddy died. Some type of deep, unspoken, soul-moving magic. We were surrounded by family, and friends I would call family.


Mama and I no longer had to fight with Daddy’s delirium alone.


We got to take breaks. Get hugs. Share how hard it was. Cry, talk, laugh a little, sing a little, pray. Everyone there played a part in that magic.


Daddy was surrounded by a love so strong; you could feel it in the air. All of us netted by that love, sharing in this difficult, yet beautiful moment. Perfectly united. For that moment, there were no divisions, no political parties, no animosity. There wasn’t anything in the world except that moment. And, I am positive, everyone there felt the power in those last hours.



Standing over him as he’s struggling to take his last breath, tears streaming down my face, telling him it’s okay to go – we are right behind him. That’s my version of strength

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