There’s a saying that there’s no rest for the weary; and I truly felt the weight of the world on my shoulders for a little over a month. After my father’s burial on April 17th, my brothers and I hosted a small get-together for his mother, brothers and sisters as a thank you for being there for us during this time. Towards the end of the night, my uncle Verzell asked me when was the last time I got some sleep; I told him that I truly haven’t had any sleep in weeks, but I felt like I was gonna finally be able to get some. I slept damn near the entire day away. I took some calls from friends and family, then I went right back to sleep. I woke up that next day; but it wasn’t a restful slumber; I woke up feeling guilty. Guilty that I was still here and my father wasn’t. My post may go all over the place, and it’s long (sorry), but there is a point to it (I hope).My pops was my champion. He wasn’t a perfect guy, but I truly believe that he was chosen to be my father for a reason. I felt like I understood him and he understood me. The one thing that he did that drove us crazy was that he talked to EVERYONE. He was a true extrovert. We could literally be in the airport and he would strike up a conversation with everyone; from the TSA to the pilot to the custodian. He was the smartest man I knew. He could give the history and context behind just about any subject; talking to him was like hearing a lecture from that super cool professor that you had in college. I've actually had him come to my classes and games I coached and he would speak to my kids to encourage them; he would tell them that they were his grandkids. We shared a love of sports, movies, music and books. The last thing that he gave me was a book about Sidney Poitier; I asked why did he give this to me and he replied, “You’re trying to do your thing as a screenwriter; what better person to learn from? He’s a legend in the industry! Get you some old school knowledge; none of this shit is new, so you need to learn from the people who went through it first.” He ALWAYS encouraged us; my brothers and I were raised to believe that we could achieve anything that we set out to do.
The last part of my father’s life journey started on March 6th. He fell out and hit his head while at work and was rushed to the hospital by ambulance. I got a text message from my cousin and left immediately after I got off work. I was scared, but optimistic – we’d already been through this before (my pops had some strokes before) – and I felt in my heart that he’d be fine. My brother Dean and I got to the hospital and besides limited mobility on his right side and some slurred speech, he seemed fine. He was so happy to see me and Dean. We tried to keep him laughing to take his mind off of what was going on. They eventually airlifted him to Northwestern for treatment. I stayed with him until the helicopter got there. I saw the helicopter when it lifted off with him and I cried in the parking lot. I met Dean there and we both waited for our youngest brother Gary to get off the road from a track meet. They did surgery that night, removing the rest of the blood clot from his brain; once he was out of recovery and in his room, we all went home. That was the beginning of Team No Sleep.
His recovery in Northwestern was uneventful. I would go to work and made sure that I left on time so that I could get to the hospital (those that know me know that I’ll stay at work until about 5:30pm everyday to get work done). I tried to make sure that I came everyday. I felt that my dad’s recovery would be smoother if he had visitors to keep him company. I only missed 2 days; I went to a basketball game that I already bought tickets for and one day I had a dental appointment and I was just tired. I never slept; never missed a day at work – I just kept pushing. My father’s recovery was obsessively on my mind. I constantly did research on what therapy could be done. I constantly spoke to family, updating them on his progress. I handled his financial affairs; spoke to doctors, just to let them know that he was somebody and we didn’t want subpar treatment. I brought him books to read and made sure to keep him updated on his beloved Thornton Wildcats basketball team (his alma mater). He was in good spirits and seemed to make enough progress to be sent to rehab. He actually wanted to go to the Shirley Ryan Lab, which wasn’t too far from the hospital. We preferred the Ingalls Rehab because it was closer to everyone and people wouldn’t have to pay for parking. My homeroom knew he was sick and they prayed for him (my kids rock, BTW).
The day (March 13) he was transferred to Ingalls Rehab was the day that we started hearing more rumblings about COVID-19. People were buying up all the toilet paper and paper towels like crazy. The rehab facility told my brother what was needed and I agreed to go pick those things up. After leaving the store, I got to visit my Pops at Ingalls. He was alert and cracking jokes and eating food. He looked fine; his only request was that I bring him some snacks when I came to visit him the next day. When I left, I told him that I’ll see him tomorrow; he replied “Daughter, I love you. Enjoy yourself.” I got a little bit of sleep that night. I thought everything was all good.
Around 8:30am that next morning, I got a call from the hospital. I was told that they found my father non-responsive and that I needed to get there right away. I swear I drove damn near 100 mph to make it to the hospital. After I walked in, my aunt told me that it most likely wasn’t looking good and I immediately tuned her out; Dad didn’t allow negative talking or thinking. One of his sayings was “Nothing beats a failure but a try.” I went to see him and in my eyes, he just seemed delirious; people were calling his name, but he wasn’t responding. I was calling him; I grabbed his hand but when he looked at me, it was like he never met me before; he didn’t recognize me - his oldest child. That hurt my soul. To see someone who was so cerebral and intentional in his thinking; so charismatic and intelligent that has lost his power to just be. Knowing that he may not know what's going on is scary and excruciatingly painful. I eventually had to leave out because I just couldn't take it; my dad didn't know me. I told myself that his brain just needs sometime to heal; it’ll recover. If anyone can recover, it’s him. Eventually after running various tests, it was determined that he had another stroke, and this one was was massive enough to where he had no brain function on the left side and very little on the right. The doctors spoke to us and told us that there was very little that they could do; would we be interested in signing a DNR order? This alarmed us; he was reacting to stimuli; just not voices, and all bodily functions were operating well without any assistance. He didn't need any machines to help him, except a catheter. I remember having the conversation with my brothers and we decided: if it were one of us, Dad would exhaust EVERY option to save us. From that point on, we were going to do the same. At the same time, I felt so stuck: I'm used to being a fixer, and the worst feeling for a fixer is not being able to fix the problem. This was completely out of my realm and it hurt.
That Monday, the hospital shut down to having visitors because of COVID-19. Not being able to see him was the worst. I remember thinking, what if he comes out of this and no one is there that
he knows? More importantly, HOW ARE THEY TREATING HIM? You don’t know and that’s the worst part. The hospital called multiple times a day and tried to persuade us to give permission for a DNR order; we declined every time. It got so bad; one doctor explained to me that they weren’t under obligation to treat him because they would be doing harm to him; his quality of life is non-existent. I walked in a few days later to hear that same doctor yelling at my mom for not giving permission for a DNR. She was beyond exhausted and stressed to the limit as well. She gave me the phone to speak to him and needless to say, after we were done speaking, he never called us again. My grandmother spoke to a chaplain and that chaplain asked her what was the point of keeping him alive? (WTF?) From that point on, our family had one objective – to get him out of Ingalls asap. From March 14 – April 2; he was there with no one to see him. They made an exception for my mom the day he had surgery to insert a feeding tube through his stomach. We also found out that he had bedsores; Ingalls just let him lay there. They did the absolute bare minimum. I think about the pain that he felt and that we weren’t there to advocate for him. We didn’t even know he had bedsores until he was moved to the long-term care facility. I had to check the hell out of a nurse there on his first day. (There's a lot more to this; I just don't have the energy to go through it.)
he knows? More importantly, HOW ARE THEY TREATING HIM? You don’t know and that’s the worst part. The hospital called multiple times a day and tried to persuade us to give permission for a DNR order; we declined every time. It got so bad; one doctor explained to me that they weren’t under obligation to treat him because they would be doing harm to him; his quality of life is non-existent. I walked in a few days later to hear that same doctor yelling at my mom for not giving permission for a DNR. She was beyond exhausted and stressed to the limit as well. She gave me the phone to speak to him and needless to say, after we were done speaking, he never called us again. My grandmother spoke to a chaplain and that chaplain asked her what was the point of keeping him alive? (WTF?) From that point on, our family had one objective – to get him out of Ingalls asap. From March 14 – April 2; he was there with no one to see him. They made an exception for my mom the day he had surgery to insert a feeding tube through his stomach. We also found out that he had bedsores; Ingalls just let him lay there. They did the absolute bare minimum. I think about the pain that he felt and that we weren’t there to advocate for him. We didn’t even know he had bedsores until he was moved to the long-term care facility. I had to check the hell out of a nurse there on his first day. (There's a lot more to this; I just don't have the energy to go through it.)
It’s a hard pill to swallow and honestly, I still don’t know how to deal with it - but I'm trying so hard just to make it through each day without breaking down. I’ve lost family and friends before and I went through the grieving process; but this is something entirely different. I don’t make major life decisions without speaking to my Dad first. Whenever I make a decision, I try to weigh all the options like he taught me; I find myself weighing the different options regarding him: What did I miss? Why didn’t I catch that second stroke? Should I have had him placed in my house to recover and had home care instead of having him placed in the nursing home? Should we have kept him up north for rehab instead of having him come out south to Ingalls? What was my dad thinking in those last few days? He was alone, and I hope he knows it was because we couldn't be there, not because we didn't want to. Was it truly humane to keep him alive even though he was diagnosed as having little to no brain function? I don’t know the answers to these questions and honestly, I lose sleep everyday because I try to answer them. But I know that I’ll never know the answer. What I take solace in is that before he had the strokes, he was doing things that he enjoyed; he got to see the Thornton Wildcats Basketball team win a playoff game – he got to see a lot of his high school buddies that night (maybe that was his way of saying goodbye to some people). I brought him some food (Dad was a foodie) that I cooked and he called me later to give me a compliment (and some pointers). He was in good spirits the last time that I saw him before the second stroke, and he looked as if he knew me the last time I saw him alive. I just want him to know that I loved him dearly, and I hope that I made him proud, because I was truly proud to call him Dad.Dean Alyn James I
May 10, 1957 - April 8, 2020
#enjoyyourself
Playlist: "For All We Know" - Donnie Hathaway
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