Ugh. I am writing this a month plus later. This is hard but I wish I wrote about it all earlier. I know I have already forgotten stuff. Sigh.
The beginning: once my Dad decided to quit chemo he believed he would instantly die. His wife and sister were urging all of us kids to get out to Hawaii to see him one last time. We were hesitant. His cancer was small, surely he had a little more time than a week? We planned instead for a sibling and Dad reunion in Saint George, Utah the weekend of Presidents day. Two weeks after the initial decision to go off chemo, and after he didn't drop dead immediately, he in fact started feeling great. This is typical of getting off chemo because chemo wrecks you to save you. Dad was feeling good and committed to the reunion we had planned (remember he was in the hospital for the last one we tried for in July).
So Thursday we all got on planes and flew to Utah. I met Jennifer at the airport and we went off to relax and wait for the siblings flying in from Maine to arrive at midnight. We didn't know, but Dad was on the decline quickly. The flight from Hawaii was direct but not easy for Dad. Catherine called us for help in the airport but we were already gone. Catherine waited for Mike, whose plane was stuck in Chicago, to arrive. When Mike found Catherine and Dad, Dad was passed out and Catherine was camped out in chairs with their luggage strewn all over the place. Dad was not moving well...or much at all. It was a struggle to get him on one shuttle to the rental cars. Mike left Catherine and Dad at the first location and took another shuttle to the next rental car place. Mike got the car and drove Catherine and Dad to Saint George where Chris was waiting.
Meanwhile, I asked Will to get me and Jenn a hotel room. I knew I wouldn't be safe for me to drive two hours after midnight. I would be too tired. That was an excellent decision because Ebin's plane was late. I called him an Uber to the hotel but he missed the first one. So I called another. Ebin finally made it to our hotel after 1:00 am. I went to bed with Jennifer at 9:30 and set an alarm to wake up for Ebin. After two trips down to lobby I had my little brother and we could get a night's rest.
Here Jenn and I are enjoying an ice cream sandwich before bed...blissfully unaware that our Father is on death's door. Ugh.
We woke up in the morning to texts and calls from Chris. We called him back. He explained: Dad was going to die this weekend. He was nearly dead last night. They called hospice in the middle of the night and had an oxygen machine delivered. Had they not, Dad would have died that night. Ugh again. Jenn, Ebin and I rushed out the door grabbing breakfast on the road. We made our way to the airbnb. (Did you catch that? Yep, I rented an airbnb for this occasion and my father was going to die there...enjoy the next airbnb you book...somebody has probably died there.)
Seeing Dad was a bit of a relief and also sad. He looked sick, had a terrible cough, we could hear fluid in his lungs when he breathed in (the hospice nurse called it the death rattle). Dad was happy to see all of us who arrived then. We waited for Caleb to arrive later that evening. It was touch and go for my Dad.
My Dad hugging my little brother, Ebin.
My big brother, Mike, my Dad, and my big sister, Jennifer.
My Dad and his wife, Catherine
We set up a vigil situation, hauling a twin bed into the room Dad was in and a few chairs from around the airbnb. We all sat together keeping watch over Dad, talking, and being ourselves. Dad would get a cough and we would all rush to his side, sitting him up and getting the suction machine to clear his mouth of phlegm. Full circle I tell you...30 or more years ago my youngest brother, Oliver was born. He has Downs Syndrome and had a host of medical problems. He needed a tracheostomy and a feeding tube to survive. One of our jobs was to suction out Oliver's trache. Now we were suctioning Dad.
We agreed to watch schedules. I took the night from 8:00 pm until 2:00 am every night. Being on California time helped me. The first night I taught myself some dances to keep me awake. The second night I listened to music and books. Then I'd crawl into bed after getting Chris and sleep until about 10 am. Every night Mike made a yummy and thoughtful dinner for all of us. It was a huge help. I would have ordered out but Mike likes to cook and his food was better.
Six of us were able to gather. Obviously, the youngest Downs Syndrome sibling was not going to make it. Lesley and Camie also decided not to come out. And Charlie is in...jail. So.
I am tired and my heart is breaking typing all of this up. (It is April for me). Going through this process was beautiful and so very hard. I've been surprised at the following weeks feelings and thoughts that have come up. It has been weird and hard. Anyway, we also had to set up a schedule to give Dad his medicine. Some to help him sleep, some to keep him calm, and some to slow his life down. Fun...
Every morning the hospice nurse would come and check on Dad. She would give us the information on the next steps and let us choose what would happen next. Then we would spend the day doing the things that moved Dad towards death.
The morning of Monday February 21st they woke me up to say Dad's oxygen levels had dropped to the point they were taking him off the machine and he would die. We gathered in the room and around his bed. We said all the comforting things we wanted to say. We played music. And watched Dad take his last breaths. It was hard and beautiful. I feel so lucky to have been there. I feel lucky to have money so I could extend the airbnb when we needed to, to buy food and towels and everything we needed to be comfortable. I feel lucky to have watched this process. I feel lucky to have witnessed it.
Here are some pictures of my Dad in better health.
Colleen, Debora (a half sister my Dad re-met about a few years ago) and my Dad.
My Dad and Mom after Lesley, baby number 9, was born.
My Dad after getting the news he could have a surgery he had been hoping for for his cancer.
My Dad and baby Lorien. My Dad got Lorien to smile for the very first time.
My big brother, Mike, and my Dad.
My Dad making the fudge. Which he told us he needed the supplies for in one of his more lucid moments over the weekend.
Dad and his sister Colleen.
After my Dad died we found a Boston Terrier puppy to snuggle in his honor. After this picture there is a word vomit account of this weekend I typed up when I got home. It is crap writing for sure but this is my family journal and I want all the crap in one place...this place.
TDL 2/20/22
My dad is dying. Dying quickly. I just realized typing that both of those are thoughts. They were facts as I typed them and then I realized the first one is true of all humans and living things. Every day we are moving closer towards death so we are dying. You can say a person is dying as truly as you can say a person is living. And dying quickly, well, that is a relative time term for sure. He is dying faster than I am at this very moment but I could be in a fatal car accident this afternoon and die faster than he is. Interesting. But I didn’t mean to go into a circumstances and thoughts exercise here. I wanted to just journal a little bit. When we arrived Friday the whole situation was presented, how much he had deteriorated and that this was the end. I thought I was OK but I decided to go
I cannot remember what I was saying up there…so new thoughts later in the day. Things I want to remember about today. Last night Mike, Chris, Catherine and I were sitting in Dad’s room and talking about his wishes for end of life. Catherine realized that having him on oxygen was him being on a machine to live and that was very much against his wishes in his living will and the plans they made for end of life. We wondered if we were being selfish keeping him alive for us. WE wondered if we were being jerks for wanting to hurry the process so we could get back to our regular lives. In the end, with no questions answered, we decided to have the conversation with carla, the hospice nurse, today. When Carla arrived it was the same group of us chatting with her. Caleb was resting and Jenn and Ebin were out. Carla confirmed we are indeed keeping him alive on a machine and this was a natural process for us too (to realize that and want to make adjustments). She comforted us by saying putting him on O2 was part of his wishes in wanting to see everyone gathered who could gather. Now we have done that and the next phases are available to us and Dad. It was emotional for sure. Carla told us we would up his morphine and lorazepam to keep him very comfortable and continue to decrease his oxygen. Catherine had dad a little more alert and asked him if he was understanding our conversation. He nodded yes, she asked if he wanted to be taken off the O2 (gradually) and if he was ready for the next phase. He was more alert with this question and said “yes” or “yeah” out loud. That was so comforting to me. All the while he has let us know he knows what is going on. If it is a joke he is cracking or answering Catherine’s questions. He seems to be aware and not totally comatose. We were emotional again. Mike, standing at the end of the bed said “we all love you dad” and dad responded “what’s not to love.” It was funny and comforting. Carla’s instructions were to up the meds on a schedule. Dad got more alert as she was leaving. He asked for some pepsi. I straw-droppered a few drops into his mouth. He wanted more so I put the straw in the bottle and held it up to his lips. He took a few long pulls and smiled a little bit. He was happy to get a taste of his favorite drink on planet earth. It was funny and comforting again.
Since this morning and since upping his meds he has not been responsive at all (when I have been around at least). A hospital bed was delivered and they moved dad over to it. I imagine he was more responsive for that but I was out for a walk when that was happening. We have to start giving him his meds every two hours and he gets a full syringe of each. We just gave him a dose at 8:00 pm. I don’t imagine we will interact much any more. It feels very peaceful and calm. I am so grateful we have been together and so grateful we’ve been able to go through this end of life process this way. I think it is such a blessing.
Yesterday or today, I cannot remember, but I think it was probably yesterday (Saturday) Dad was in a period of lucidity and asked for coco and marshmallow. For a second I thought he wanted hot chocolate but he wanted the supplies to make fudge. He also asked for a cup of hot water which was strange but I got it for him and remembered I had a silicone straw in my purse so we could bend it down to his lips. That made things much easier. It was fun to hear him wanting to make fudge for everyone. I want to make some now.
Last night (Saturday night) dad wanted to get up. We were not sure that is what he wanted, it was me Catherine and Mike. He tried to get up a few times and we tried to re-settle him with pillows or on his side. Finally he sat all the way up (with help) and put his legs over the side of the bed. I was sitting on the bed and Mike was standing in front of dad helping him stay up. I gave dad a back rub and scratch and mike rubbed dad’s neck and shoulders. Dad enjoyed a back rub. I want to tell Colter that Grandpa Davis loved getting some rubba backs just like Colt. A minute after the back rub dad wanted to stand up. I think he wanted to take a walk. Earlier in the day with Caleb Dad had asked to take a walk just to the toilet even though he didn’t need to use it. He just wanted to get up and move and sit in a different place. Anyway, Dad wanted to stand up again after his back rub. Mike helped him up and dad wrapped his arms around mike and took mike’s hand and started dancing. It was funny. They danced in place for a few seconds and we all laughed. Then we helped dad get back in bed on his side and he went right back to sleep. I want to remember these times.
This is tiring. I stay up with Dad until about 2:00 am every night and then sleep until 10:00 am. So I am getting about 8 hours of sleep every “night” but I am so tired. Jenn and I were talking and she acknowledged this whole process is really emotionally draining. Even though we are all just sitting around, talking, and being relatively still and quiet, the emotional processing and sorting is very taxing. We are all tired.
I am upset with Camie. I sent her an update after we decided to step dad down for the next phase of dying. Her response was “basically he is suffocating to death”. I was furious. I sent off an angry text telling her to stop thinking of this in such a shitty way and to stop being such an ass. I tried to be reassuring, saying dad was falling asleep to death not suffocating. She only responded with “OK”. So she is probably pissed off at me. I took a walk and was super mad. I marc poloed with Kolette, really I listened to one polo she had left me and then left a few polos for Kolett. I also listened to some of a 2K podcast. A couple of comforting thoughts came out of both of those experiences. First Kolette talked about brittle belief and fluid faith. This idea that we have these brittle ideas around what we believe and when they are brittle and then challenged they break. Then we swing over to the far side and opposite thinking and can be just as ridgid over there. But we need to find this middle ground (I call it living in the and) where we are having fluid faith. Space for people and ourselves to be wrong and that to be ok. Anyway, it made me think of Camie and how I think the pandemic has hardened her a lot. And now with this experience she is adding more hardened shells on her. And I thought of my response to her, swinging to the other end of “you’re being an ass hole”. I want to be in the middle, living in the and. It is true, Dad is technically suffocating to death. It is also true that he is not in any pain or distress of any kind. I can hold space for both things: live in the and. He is suffocating and he is comfortable. The second comforting thing was from my business coach. I was listening to a podcast about arguing with our clients or potential clients and being in convincing energy. Stacey was saying how she stays out of argument is to think “every process works.” She doesn’t spend any time and energy in degrading another process because it works for some people. She just needs to put her energy in supporting her own process. Then she stays out of convincing by thinking “and they want mine” meaning her customers/clients want her process of marketing and making money. Some people want another process and that is ok. So this made me think about the situation with Camie too. All processes of grief work. Camie’s works for her and mine works for me. I am being ridgid when I think she should be doing it my way and my way is the right way. I get into convincing when I think about how she will be so devastated she didn’t do it my way and try to convince her to do it my way. I can stay out of that by focusing on myself and my siblings here. They want to do it the same way I am doing it. I don’t need to convince Camie, her process works for her. All processes work. And some people want to do the same process as me. It was a little mind-expanding for sure.
TDL 2/23/22
Oh, what do I want to remember from this weekend being present while Dad passed away. I want to remember some of the things he said:
I don’t want to go to Kona (hospital)
What’s not to love?
Coco and marshmallow (to make fudge)
What are you all doing here?
Always got to cause a scene.
Not bad for an old fart.
Not yet (when Catherine asked for the millionth time if he was seeing anyone from the other side)
Stick (the suction wand)
Lets see. It was weird and I wanted to cry every time I had to suction out his mouth. I suctioned phlegm out of Oliver a million times as a kid and to do it now on my dying Dad was weird and not cool. But it helped him a lot.
Catherine kept asking him questions he could not answer with a word or two. She kept patting his cheeks and wiggling his head to get him alert enough to talk. He would go into a coughing, gagging fit and need to be lifted to sitting and suctioned out. It got to the point where I dreaded her coming into the room because I knew she was about to agitate him.
I stayed up until 2:00 am every night on that shift then woke Chris to take over until 4:00 when Jennifer woke up. I slept until 10:00 am just about every morning. I think I did that for three nights? Friday night, Saturday night, Sunday night and they woke me up Monday morning at 9:30 am when they were taking him off the oxygen. The first night my brothers keeping watch headed up to bed and I stayed alone for the last hour. Dad needed to use the bathroom about every hour and a half. That was a disaster. To keep myself awake I watched instagram dance content and tried to teach myself some dances. I spent hours talking with Mike, Caleb, Chris, and sometimes Catherine at Dad’s bedside late into the night.
When he passed I played Somewhere over the rainbow, then Catherine played the hawaiian song people say at goodbye Aloha aye? Then Chris played fields of Gold sung by a family friend. Then I played god only knows by the beach boys, and finally Jenn played Louie, Louie by the Kingsmen? And dad passed during that song. He took breaths and more and more time passed between the inhales. Until he didn’t inhale again. It was hard but not terrible. We all cried and hugged and encouraged dad to do what he needed to do…die.
The second night he wanted to go for a walk but he had a catheter in and couldn’t go far. He sat on the side of the bed and I scratched his back while Mike held him up and rubbed his neck and shoulders. Then dad stood all the way up and did a little shimmy. Mike grabbed his hands (so he wouldn’t fall) and dad started slow dancing with Mike.
Once He looked me right in the eyes and I smiled and winked and he winked back.
I bent over and kissed his cheek right after he passed and put my head on his chest.
Every day we met with the hospice nurse, Carla, would tell us our options and answer our questions. We would make a decision that would move dad towards a peaceful passing. Carla reassured us every step of the way that Dad was comfortable, in no pain, and his mind had already moved on; he just needed his body to catch up. Our job was to make decisions to help his body shut down, not to keep him alive. Then we would sit with our decisions for the day and night and watch dad. Finally, we realized we were keeping Dad on oxygen for ourselves. He did not want to stay alive on machines. Carla told us the next steps were to increase his morphine and lorazepam until he was at the maximum dosage. Then we would turn his oxygen down and off. Then we would wait. (But not until his oxygen saturation dropped to 40). We got a hospital bed delivered and Dad moved over to it. We continued to keep a watch. Sunday night Catherine caught Dad’s O2 level at 57. She was ready to gather everyone and pull the oxygen. We checked his O2 a few times and he was back up to the 80s and 90s. We kept having to cool Catherine’s heels on getting dad dead. It was going to happen, we just had to wait. But we knew that night, it wouldn’t be long. Mike and I stayed up until 2 am again and got Chris. I went to bed and they woke me up at 9:30. Carla was there, dad’s o2 was below 40, they had turned off the machine and it was time to gather. Ugh. It was still hard but it was so so so peaceful. I cannot believe how blessed and lucky and fortunate, and stupid it is that we got to watch our Father pass away in this manner. There wasn’t a stressful or unpleasant moment. It was sad and hard but he didn’t struggle or ever seem to be in pain. We all got to say “I love you” a million times. We got to hold his hands and rub his arms. We got to place cold cloths on his brow. We got to take care of him. We got to love on him. We got to check his O2 levels and heart rate. We got to support him and each other. No one was alone. Chris, Jenn, Mike, Caleb, me and Ebin all got to be there until the very last second, with our Dad. Ebin stayed away from the sick room most of the time. At the end he made his way in and stayed on the bed until Dad passed. It was hard.
That night I had to take Ebin to get some weed. He was out of his other “medication” and needed help. So in one day, I watched my Dad die and bought weed for my brother. What a day.
We went out to dinner that night and sat at Chris’s Airbnb for an hour digesting the events of the weekend. We laughed a lot. We vented a little. We were comforted. We were entertained. We reminisced.
Mike reminded me of a time I almost killed Oliver. I shouldn’t have been in charge of him. It was not a good memory to be reminded of. We talked about the time Mom threw me across the room as a baby and Chris made an emergency catch to save me. Not cool. Growing up with my parents was not the best but we survived and are all trying to do better.
I talked with my brothers about trans issues, the special things we had from childhood, jobs, kids, all the usual stuff. I learned more about Catherine.
Chris finally had a cry when dad was passing and Chris played fields of gold. Mike was (and is) the most emotional. He hugged quickly, said I love you the most, and was the kindest to Catherine. He turned out the best.
