Dear Friends & Family,
Since the day Curt was diagnosed, one of my biggest questions was, “How will he die?” I asked doctors, nurses and people who have watched their loved ones die what the final days are like. The only thing I learned from everyone, it that each person is different and there is no way to predict how the end would be. My biggest concern was that he wouldn’t suffer or struggle, I prayed his passing would be gentle. I pictured in my head, and prayed often that Curt would die peacefully, with the kids and me by his side.
Knowing his last days would become a blur, I kept a journal for what would be the last 8 days of his life (and the week after). Curt always wanted this blog to be honest, open and helpful to anyone who may be going through a journey like ours. Therefore, I know I would have his blessing on sharing this.
Thursday, November 15th
3:00 Nurse Yeon called me at Curt’s request to have me come home. He was crying and emotional and neither she nor his mom could figure out what he needed. I raced home and was able to decipher his needs and calm him. This was the day I decided no more work, no more leaving his side. He needs me and I want him to feel cared for and secure. So here I will stay until the end.
Friday, Saturday, Sunday
Curt slept a lot, he was emotional when he was awake, a few visitors came by, but mostly we just hung out together, him in bed and me beside him.
Monday, November 19th
Curt woke up crying. He said he felt like he was dying. He couldn't get enough air. I asked if he wanted the kids home and he said yes. Clarissa was just leaving for school, she stayed, Corbin had spent night at Mom and Dad’s so Mom raced him home from Torrance, I called Cayden and he left school. We all gathered around crying. We told Curt we love him and although we want him here, he can go. We all cried, he cried. Hardest thing to see kids telling their father goodbye. Pastor Brent came at 2:00. He told Curt about the handicap lift we bought for the church; that it was now installed and people used it Sunday! Curt had questions about the power of the lift and if it locked automatically. Brent prayed and gave Curt permission to go, gently and lovingly.
Tuesday, November 20th
If there was one day, actually one hour in our three year journey that I could take back, it would be this morning from 9:30-10:30 am. Lack of sleep and the emotions of everything hit me hard and I had a bad attitude toward Curt. Curt had awakened both 5:30 am and 6:30 am with anxiety; I gave him meds to calm him. At 9:30 he said “I want to get up now!” I was tired and not rested from a long night. I got him up quickly without love. I took him to the kitchen counter where he was falling asleep drinking his water. Then suddenly he demanded to use the toilet. I put him on the toilet by myself (no one was around to help me), which is a struggle. I could not get him positioned correctly by myself. He was crying, I was upset, I just couldn’t get him comfortable. Then my Dad came to pick up Corbin for breakfast. He helped me get Curt off the toilet and back to bed. Curt fell asleep. I realized after the fact, his demands and attitude were from the extra medication I had given him that am. I should have talked to him and had him rest longer, knowing he normally doesn’t get up until after 12:00. He was pretty much out of it all day, but I laid beside him and let him know how much I loved him and tried to keep him as comfortable as I could. He drank some Ensure in the am and ate some Key Lime Pie in the afternoon. This would be the last time he ate. This was the last time he was out of bed. Curt smiled a bit today, but not much.
Wednesday, November 21st
Curt was in distress beginning at midnight. I called Hospice and the nurse came at 3 am. She received Doctor's orders to give him Morphine and Ativan every 1 hour and increasing dosage. He is moaning with each breath. She calmed him by 4:30 am. She sent me and my mom (she came at 1:00 am to help me) to the living room to sleep, knowing we had been up all night. We slept for 1 hour until she had to leave at 5:30 am. Curt rested for a few hours and then the anxiety and moaning began again. I called Hospice to send a nurse again. Meanwhile the kids and I gathered around him, loving on him; he cried but was pretty much out of it. Nurse Kahn came and helped calm him. He increased dosage of Morphine and Ativan again. He had a fever which we were controlling with Tylenol. Curt was finally able to calm down and relax, we kept quiet most of the day, not wanting him to wake and go into distress again. Ilfida, the bath aide, came and bathed him and he was completely relaxed. She knows exactly how to talk to him and gave us a lot of information on how to help him and talk to him at this point. He is unresponsive since the nurse left. Even while being bathed, he didn’t open his eyes or make a sound. The kids and I are exhausted and emotional, crying often. We have been by his side since Monday. I am tired from getting only one hour of sleep last night. My mom has helped so much with preparing food and making sure we all eat. I feel bad for her, she looks so tired and worried for us as well as Curt.
Since Monday the nurses have told us he could live anywhere from 24 hours to 4 days. Nurse Kahn said that today also. We don’t want to leave his side, so the bedroom has become our family room. We talk to Curt, read, listen to music and watch a bit of tv. At 5:00, I completely broke down sobbing uncontrollably as I am watching my husband die. My body was shaking as I cried for hours. Clarissa, Cayden and Corbin took turns trying to comfort me. Finally I took an anti-anxiety pill and it helped me calm down. Corbin offered to take a 4 hour shift of giving Curt his hourly meds so I could sleep. Clarissa and Cayden had friends over, but checked on Curt constantly. When I woke up at 11:30 pm, the house was quiet, Corbin relinquished medication duty to me and the kids all went to bed.
Thanksgiving Day, Thursday, November 22nd
Curt has been sleeping peacefully since 1:30 last night. No meds since then. He was no longer able to swallow them, and was peaceful so Nurse said just give meds as needed. He has been totally unresponsive since yesterday at 3:00. Kids and I got up around 11:00 today and I showered, dressed, put on makeup and all. If he wakes up, I want him to see me pretty, wearing the jewelry he bought me. We all hung out with Daddy, listening to music, windows open, fresh air, light mood. He looks so handsome and peaceful. His color is good, his skin is soft, and his body is no longer rigid but flexible like he is getting ready to walk again. His breathing has progressively slowed down. Mom and Dad brought Jack in the Box around 1:00. We were all starving. Nurse Marisol came at 2:00. She said he is shutting down, 24 hrs to a few days. I have been on the window seat all day staring at my handsome hubby, no more meds, potty, etc. I am once again a wife instead of a nurse. The exhaustion is leaving my body and the memories of our past is flooding my mind. Today, I do not read or watch tv, I watch Curt all day. I reminice about our 30 years together. I hug my kids and we all snuggle together with Curt. We share stories. We laugh, we cry a bit, we give thanks for the most awesome Dad and husband ever. The kids and Mom and Dad BBQ ribs, salad, fried potatoes, bread and pie for our Thanksgiving dinner. My mom sits with Curt, so I can eat in the dining room with the kids. It has been days since I have left our bedroom for more than a couple of minutes. I have been home 8 days, not leaving the house at all. I thank God for giving me contentment to remain close to Curt in his final days.
At midnight, his breathing became agitated. The kids were in the room, we all gathered around and tried to talk to him. His eyes were 1/2 open but looking into space or rolling back in his head. Scary and hard to watch him struggle. He turned blue, I called hospice and then canceled as we got him settled down with morphine, Ativan and congestion drops. We all went to sleep at 1:30. It was a quiet night.
Friday, November 23rd
We all woke up at 11:00. Cayden had spent the night on the window seat, Corbin slept in bed with me and Clarissa went to her room sometime in the middle of the night. Curt has a fever of 102, more Tylenol. He is resting peacefully though. I showered and got pretty in case he wakes up. Kids are stir crazy, Cayden went for drive to the beach, Corbin went to Mark and Kelli's and movies with Mark. Clarissa is just hanging out with me on the window seat all day. Fresh air, music, texting, listening to Curt breathe. Barbara, Bill and Beverly came for a visit. Clarissa and I left the room as they reminisced with Curt as he rested peacefully. They left and then Ilfida came and bathed Curt. He was relaxed through it all. She left around 5:00. Clarissa had some friends over and they were all loving and talking to Curt (he was still unresponsive), I was sad that they are all losing such a fun-loving Dad. At 7:00 his breathing became labored, quick in and long out. Around 8:00 he began turning blue beginning with his hands and feet. At 8:45 I called the kids in. His breathing had slowed down. Then it really slowed and then stopped. A minute later a little breath then some gurgling. He never woke or opened his eyes. Time of death 9:00 pm. It was just me and the kids. We cried. Corbin wanted some time alone, so Clarissa and Cayden left the room, I stayed as Corbin held his Dad and wailed like I have never heard before. We all gathered again and cried.
I called hospice, his mom and the mortuary. Pastor Brent came over immediately and Jim Beedy. We stood around Curt’s bed, held hands and prayed. Curt was so white by the time the mortuary got here at 10:00. They took him out on a stretcher, and loaded him in a white minivan, a Honda Odyssey. I felt I should have arranged for nicer transportation for him, his last ride, his last time on wheels. Crazy thoughts. Pastor Brent had kept us informed and calm as they were taking Curt away. Cayden’s friends had gathered in the garage to comfort him. Jim and Larry offered to take the hospital bed out of our bedroom, which I thought was a good idea. It would have been hard to see an empty bed. Jim stayed late, we talked (and cried) for hours. He lost a great friend. Clarissa and Cayden had friends here to comfort them. Corbin remained close to me. We all went to bed around 3:00 am. Sleep would not come. There is a huge emptiness. The hardest part of this entire journey was watching the kids watch their Father die. That was absolute torture, and I'm sure something that will haunt me for a long time.
|Our hero and protector |
|One month before his ALS diagnosis|