On Saturday 12/23 the five of us kids had a 5-way call about what my dad’s Nephrologist shared about his prognosis. I’ll summarize: It wasn’t positive. My dad would never be better than he was that day. The end was near and it would be soon. The meds being given to lower his heart rate and up his blood pressure were going to cause Cardiac Arrest. Everything was in failure.
As a family, we took dinner to my parents for Christmas Eve. It was a whole process to let my kids see their Papa because they are under 13 (and it’s RSV season). In the end, the nurses let us sneak them in for a few minutes. We brought Prime Rib with mashed potatoes and green beans, but I’m not sure my dad ever ate any. Which is fine…Carlys needed food too. The nurses only allowed us to stay for a few minutes, but I was happy we got to be there. Regina’s family took dinner to my parents on Christmas Day. We tried to have a normal Christmas at home and were able to take dinner to Mike’s parents.
All six of us kids met at the hospital with Dad and Carlys on Tuesday 12/26. While we were there the Hospitalist came in to see Dad. She was able to explain where my dad’s health was in very plain terms. He was unable to have dialysis on 12/25 and 12/26 because his heart rate was too high and his blood pressure too low. They had been giving him meds to lower the heart rate and up the blood pressure, but it was no longer safe to do so. There is a protein called Albumin in your blood needed to have dialysis, but my dad no longer produced this protein. If he were to ever have dialysis again, it would only be in the hospital where they can give him Albumin. The doctor explained that would mean that he would have to remain in the hospital the rest of his life. Also, at that point…my dad was in heart failure, had COPD, liver failure, kidney failure, and I’m sure more. After us kids left the hospital, my dad made the decision to stop all of it and go home with hospice.
I had a colonoscopy scheduled for Wednesday 12/27. So Tuesday was supposed to be my prep day…meaning no food from 12am until your procedure. The actual prep starts around dinnertime. After I left the hospital, I had a splitting headache. I couldn’t take Ibuprofen, but I had taken Tylenol…and had caffeine. Knowing what was coming with my dad, I called and canceled my colonoscopy. I just couldn’t be out of commission on Wednesday knowing what was going on with my dad. My headache was so awful. I got myself food and more caffeine, and my headache finally subsided. My dad asked for a cheeseburger and fries with a Diet Dr. Pepper from Freddy’s, so I was able to take that to him. I was so happy I decided to cancel.
Wednesday morning they came to take my dad to dialysis. My parents refused it and said they weren’t doing anymore dialysis. About an hour later my dad’s numbers weren’t good enough, so he wouldn’t have been able to have dialysis anyway. I was happy for him that he was able to make that decision. I can’t even imagine if he had decided to go and then been turned down. Again.
I woke up Wednesday morning and headed to the hospital. I sat with my dad and held his hand. My dad didn’t seem himself. I asked him if he was sad that it was over…or if he felt okay with his decision. He cried and said he was sad to have to leave. He wasn’t done and had things he wanted to do still. I asked him if there was anyone he wanted to talk to before he died…he gave me the names of a few old friends...I told him I would make it happen. My Uncle Ron and Aunt Barbara stopped by to see my dad. We had a nice visit (my dad went on and on about a stupid topic that meant nothing…not sure if he was out of it, or if he was really interested in the topic, but it was really weird). When my Uncle Ron was ready to leave, he held my dad’s hand and said goodbye. It really hit me when he told my dad he wouldn’t see him again here on Earth.
I left the hospital and headed for my parent’s house around 1pm. Hospice was coming to deliver the hospital bed and other equipment, so I wanted to be there to receive it. Ryan was also there with Roy fixing my dad’s backyard gate. We got the furniture moved for the hospital bed to fit in the family room. Hospice delivered and set-up the equipment pretty quickly. Richelle and I left to get sheets the right size for the hospital bed. I got them washed and ready for my dad to come home. The transport arrived with my dad right at 5pm. We got my dad settled and I stayed for a bit to make sure I couldn’t be of any help. I finally left and headed for home. I didn’t want to leave, but Richelle and Ryan were both there, and my kids needed me to be home.
I called Carlys on Thursday morning to see what I could bring Dad for breakfast. He wanted a McDonald’s Sausage McMuffin- one with cheese and one without. He also asked for a blue raspberry icee. It made me laugh, but I told him I would get him whatever he wanted to eat. Period. He ate about 1/2 of each sandwich and drank the whole icee. He also had a bite of a donut. When I walked inside, I was happy to see he was watching a really bad old western movie- his favorite. After he ate, he had some visitors. Jerry Willis came to see him. My cousin, Peter Ferrin and his wife were in town, so they stopped by too. Dad’s friend Bill had come by and his next door neighbor also came by. Robyn, Sydney, and her kids came by too. When I talked to my dad on Thursday, he told me he was happy to finally get to meet his brother, Steven, and Tuffy, his dad. I felt like he made a change from the sadness he expressed on Wednesday to acceptance…
At this point, we had not given my dad any meds…not the ones hospice had delivered and none of his regular pills. We weren’t sure what we were supposed to do. He still seemed okay…a lot like when he was in the hospital, so we hadn’t made any changes until the nurse arrived. The first Hospice nurse didn’t come until Thursday around 11am. In hind sight, I wish the nurse would have come Wednesday to give us direction. I think waiting so many hours was too much.
When the nurse arrived, we went through the list of regular meds that my dad could continue and the ones he didn’t need any more. She went over with me how to administer the Morphine, and how and when to give my dad the Lorazepam. In the end, he never again had any of his regular meds, but he did start small doses of morphine on Thursday because he was complaining his chest hurt. That dose and the second dose didn’t help much, so we gave him another pain pill he was allowed to take. That seemed to help his pain and helped him rest. We had to change his sweatshirt because he was seeping fluid at both elbows, so the fabric was wet and cold. It was a challenge to get that sweatshirt off of him, so I suggested we cut the clean one up the back and put it on him like smock. He agreed to this, so that’s what we did. It was so much easier to get the sweatshirts on and off of him that way. He needed them changed more than once a day, so we needed it to be easy for him…and for us. He was responsive most of the day, but once he started sleeping Thursday afternoon, he never really woke back up. Ryan stayed with him Thursday night. Carlys was able to get some much needed sleep in her bed.
Friday I called to see what Dad wanted for Breakfast, but he didn’t want anything. He wasn’t really awake. He did have a bite of a bagel that Bill brought, but that’s it. I was happy to see Wendy had arrived when I got to the house. The Hospice nurse came by. She was able to get his morphine dose upped. When we had to move him, he would moan in pain…I didn’t like that at all. She advised me to give him a dose every hour if needed…and always about 10-15 minutes before we moved him. It stayed at every two hours until the end.
A Hospice CNA came by to bathe my dad and get him changed into clean clothes. She was so kind. I helped her where I could and I was able to help move him. She gave me some ideas on how and when to move him to keep him the most comfortable and to keep him from getting sores or having his skin break down. On Friday he was able to respond to me. I would tell him I was giving him medicine orally and he would take some water to wash the nasty taste out of his mouth. About mid-day he waved my hand away and didn’t want any more water. That was the last time he had water. All day on Friday my dad would move his legs to get more comfortable, would moan in pain/discomfort, at times would respond to something said, and would squeeze my hand when I held his hand.
We had more visitors…some friends, and the Cahills came by around 5pm. Dad had asked to see them, so I know it made him happy to hear Marsha’s voice. Her voice makes us all happy. My Uncle Eric and Aunt Mary Ellen also came to see their brother. I gave him some pain meds around this time and when I told him, “Dad, I’m going to give you your pain meds,” he opened his eyes, looked at me, and said, “Okay.” He closed his eyes…and I never heard his voice again or saw him open his eyes.
Around 8pm two different things happened. We didn’t link them together until later, but I do believe they are related. We were all sitting around my dad’s bedside. I was sitting on his right side and Raelynn was calmly sitting on his left side. All of a sudden Raelynn got emotional and started saying, “Dad, come back” and “don’t go.” She was upset and begging him not to go. She cried, was so emotional, but not ridiculous. She was so sad…it was heartbreaking.
At about the same time, Regina and I noticed my dad’s shallow breathing started to sound like a gurgle. It wasn’t loud. But it had changed from a quiet, shallow breath to a distinct gurgle sound. Regina and I went upstairs to talk about it and we watched a video about the “death gurgle.” My dad had all the signs of end of life the video talked about. We talked to Carlys and the others about what we thought and decide to call the hospice nurse.
When the hospice nurse arrived she told us it was not the “death gurgle” and that we still had “days” to go. I didn’t believe that was true or possible. The nurse really didn’t help us or do much at all. Looking back, after Raelynn was upset and his breathing changed….he never responded again. He never moved his legs. He never moaned. I believe his spirit was gone.
I finally took Raelynn home late Friday night to get some sleep, but we were back at my dad’s before 10am on Saturday. Richelle spent the night with him, and Ryan relieved her around 6am. When I got there I resumed making sure he had his meds on time and making sure he was moved every few hours. The nurse that came Saturday was really no help. She checked on him, but mostly said how sorry she was. I sat by his side and held his hand most of the day. I got up to make dinner…which was a good distraction for me and allowed others to sit with him. All day on Saturday my dad was expelling a gross liquid from his mouth. Some times it would drool out and other times I could squeeze his cheek to get more of it out at once. It was gross and it smelled like death. I didn’t think this was okay…or normal…so at 9:20pm I texted one of my best friends who is a nurse. I know she previously worked on a covid floor/palliative care floor, so I thought she could tell me if this liquid was normal. His breathing was so shallow (and gurglely…is that a word?), his heart was racing and his blood pressure was low....we were struggling to get a reading using his fingers. I told her he had stopped moving his legs Friday night. I sent her a picture of me holding his hand. She agreed that everything was pointing to the end of life…and the liquid could be from his belly or his lungs. In the picture she noticed my dad was wearing his cpap. She asked if Hospice advised us to keep that on him…because when her patients were at this point, she removed the oxygen as it is not necessary.
This was a huge thing- Duh!!! We hadn’t talked about removing it. Not one nurse had discussed this with us, mentioned it, looked at it, asked about it…nothing! Four different nurses and not one mentioned the cpap or oxygen or when to stop or how much to lower it or when. I walked over and talked to Regina, Richelle, and Wendy. They had my same feelings- that cpap needed to come off. We all talked to Carlys about what we learned…Carlys agreed with us, but thought we should call a Hospice nurse. I called Ryan at 9:56pm and told him to come back. Wendy googled something about when to stop administering oxygen…and we should have long before then. When the Hospice nurse called and said she was about 15 minutes away, Ryan walked in the door. We noticed my dad’s hands had turned purple/gray. I had taken a picture about an hour prior and they did not look the same. Carlys couldn’t believe his hands were so purple/gray…and it was moving up his arms. She asked Regina to start slowly turning the oxygen down because it was on so high. Little by little the oxygen was lessened…and he was gone. We took off his cpap mask, he took one more quiet breath and my dad was gone at 10:25pm on 12/30/23. It took a few minutes, but his face softened and his mouth closed.
I don’t know how you can know something is coming, watch it happening in front of you, and still be in shock, but I was. I felt so incredibly heartbroken. The biggest, strongest man I’ve ever known was gone. He was my constant my whole life. He was not perfect. He got a lot wrong. But he was my dad. And I love him. I’m so incredibly sad he’s gone.
We had about five full minutes with him before the Hospice nurse arrived. We facetimed Robyn, so we could tell her and she could see him. We all cried…except Raelynn. She looked at us like we were all crazy. She stood up and walked to the couch in the living room to sit down. She did let out one little cry, but nothing like the night before. Raelynn did not want to see my dad. She asked us to move him to the garage…which made us all laugh. We even had to make a human wall in front of him so she could walk to the bathroom. After about 90+ minutes the funeral home hadn’t arrived to pick him up, so I took Raelynn home. She needed to go to bed and so did I.
When we pulled in the driveway, Mike was waiting for us. We got Raelynn up the stairs and into bed. Cody was up waiting for me too. Mike had already told him. Both of my kids said their goodbyes on Friday night. I’m so glad they did that on Friday because Saturday was a long, hard day. Cody asked some questions before he headed to bed. The next morning Ellie crawled into bed with me to snuggle (as per usual). As she snuggled in she said, “I hope Papa makes it to the New Year.” I quietly told her he passed away the night before. Ellie let out a guttural cry and snuggled me closer. After she was done, she said she was ready to go downstairs, so we did.
We spent Sunday afternoon at my parent’s house with family. I was so happy Ryan had moved the couch back inside and the hospital bed into the garage. It was so much easier not seeing all of that still. I made dinner while the funeral was planned. We ate and laughed just like normal…like our dad was still there being grumpy in his favorite recliner.
It was New Year’s Eve, so we had plans (like every year) to do fireworks with the neighbors. Ryan’s family came too. We had s’mores and lots of fireworks. I was not emotionally doing well, so I would stand outside and be with everyone and then quietly take a break inside. I felt on the verge of tears every minute. I finally sat on the laundry room floor and just sobbed. Mike came inside and held me for a long time. At midnight, I made him go back outside to celebrate with our kids. They so badly needed normalcy. And I knew I was going to struggle to give it to them.
My kids spent nearly their entire winter break with a dying grandpa and an emotionally fragile mother. I am so proud of how amazing both of my kiddos are. They played for hours and hours with their cousins in the backyard at their Papa’s house. They never complained or whined about any of it. They did ask to stay home at times, so I let them. They came when asked…and never gave me a difficult time about any of it. They have handled themselves so much better than I imagine I would have at their age. I lost one grandpa when I was three. I didn’t lose another grandparent until I was an adult. Even losing my grandma at 41 was awful.
I truly believe my dad died on Friday night. I believe Raelynn is in tune enough with the spirit and the veil between this life and the next is, for her, very thin. I think his spirit left on Friday night. And I think she knew it. I think she felt it. I think his body was kept alive with that oxygen for extra time. On Friday night, he had been visited by everyone he asked to see before he left, plus his brothers and sister came. It’s so surprising how incredibly strong his heart was. He had that mechanical aortic valve for 35 years…many, many years longer than it was expected to last. I loved to hear that “tik tik tik” of his heart beating. I always used to say I loved hearing it because I knew he was alive. It was hard when it stopped to not hear it.
