It’s dinnertime now and my husband Steve has been asleep all day. I miss him terribly. But at least while he is a sleeping the pain is not evident. When he wakes up occasionally he is in good spirits, although what he says does not always make sense.
I went to see the movie Creed with my son Brad, daughter Pepper and grandson Marlo. It was a typical Rocky movie which Steve and I have always loved. The first Rocky movie came out in 1976 the year we were married. And now the last one has come out the last year we are married. I was sad that Steve couldn’t see it with me. I cried a lot because it brought back wonderful memories of going to movies and eating popcorn and discussing the movie on the ride home. Rocky represents the fighting spirit, a positive attitude and accessing deep hidden strengths. It was a bittersweet day for me. I’ve been sitting by Steve’s bed listening to his very slow breathing, praying that Heavenly Father will send some angels to take him home so his suffering can end. Yesterday he said he is ready to go. As Spencer W. Kimball said, “Our bags are packed and we are just waiting for the train.”
Sid, Steve, Melissa
Well, Thanksgiving was not what I expected. So once again I am learning to drop expectations. My mom used to always quote, “Confucius says, He who expects nothing is seldom disappointed.” Words to live by. First of all, our son Andy and his family are in Atlanta so could not be here. Then my other son Sid needed to arrive late. So there were only 9 of us and there are usually 17 here for the big feast. On top of this, Steve was extremely drowsy and slept right through dinner. It was as if this was our first Thanksgiving without him. So I got pretty sad before dinner even started because I was missing the good ol’ days. The good news is that we had a great time. Our son Brad and his family were here along with our daughter Pepper and her son Marlo. It was great. I am blessed with cheerful, fun family members. We played Game of Fame and just cracked up. Then when Brad and family left to go to his in-law’s celebration, Sid showed up with his girlfriend Melissa and visited Dad for a few hours, and loaded up on leftovers. It was lovely.
Steve is going in and out of lucidity and is doing OK. He has pain in his shoulder in the mornings but the meds kick in and he usually does OK the rest of the day. He really liked the Therapeutic Touch treatment he got from Rebecca Good a couple days ago. He said that helped more than medicine. It’s a small world – Rebecca and I worked together on the American Holistic Nurses Association annual conference held in Snowbird, Utah a few years ago, and now she volunteers for the hospice company we use. It was great to see her. She lost her husband to cancer 2 years ago and it was great for me to talk to someone who has traveled this road. I am not alone.
Stasha and Steve
Steve’s aide Stasha came today to give him a bed bath. He enjoys her company. She is attentive, patient, and listens to him and cares about him. It’s so very nice. He is surrounded by caring people. He is always treated with respect and love. We are blessed with wonderful people willing to walk this journey with us.
Yesterday we had a big birthday party for my 4-year-old grandson Storm. His parents, my son Brad and wife Avery hosted the party here at the house. Steve was really looking forward to seeing everyone. It was tricky because the party is on the main floor of the house and Steve is stuck upstairs. I was planning to rotate people through his room as the party progressed. As it turned out, Steve slept through most of it. When Storm opened presents, I shot a video of everyone saying his to Steve and showed it to him when he woke up for a few minutes. Then our grandson Marlo Face Timed him when we sang Happy Birthday. I gave him some chili which he didn’t eat – that’s a first! But he gobbled up the ice cream and cake, at which time the family visited him. He told me he was going to die that night. He asked the visitors several times if they were on a death watch. They said no they were just visiting him. When they left he asked me about it and I said he was the only one who thought he would die that night. He didn’t remember telling me that.
Today Steve is not sleeping as much but is extremely drowsy. He had some very severe pain this morning in his shoulder (related to the tumor in his neck). I medicated him heavily, and the music therapist came over and he just loved it. Very relaxing. He hasn’t had severe pain since. We also got a visit from the social worker, Joe. He talked to me about the stressors of caregiving and it helped a lot. I know I am a positive thinker, but he gave me even more suggestions about how to look for the good in things. He talked to Steve for a few minutes too.
Steve is beginning to live more in another reality. For example, he asked me to turn off his socks, and said he was happy he did not need extra sauce on this music therapy. He also asked me if his pee was turning to metal, and if his metal bed was turning into pee, which he thought would be a good idea. He is mostly coherent, but so very drowsy.
Yesterday the hospital bed for Steve arrived. My grandson Marlo and son Brad took down our bed and stored it in Steve’s office. It was a lot of work clearing a space in the office for a Queen sized bed, but they did it cheerfully and efficiently. While they worked Steve laid in the bed where I sleep in my office. The bed is low, so Marlo and Brad had to lift him out of it when the new bed was ready to be occupied. My daughter-in-law helped me clean and organize the bedroom, and provided twin sheets and bedspread. Steve has always been big on feng shui, and I know he would appreciate it. Once Steve was in the new bed, he slept most of the day. It has an air mattress to prevent bed sores and when I asked him how it felt he said it was “interesting.” He asked me several times what the air pump was, so I knew that his mind was not fully aware. He woke up in the evening and ate dinner and talked quite a bit. It sounded like he had visited the future. He was rambling a bit about things to come. I didn’t understand a lot of what he said, but I just told him that it was OK because he understood it. He talked about the difference between men and women, and how our family needed to watch 5 movies, and how Taco Bell would be a world power. I’m not writing this to make fun of him at all, just to record how he often enters another reality, where there is no pain. I like that.
Quinn and his sister Eve
By the way, our brand new grandson has a name now – Quinn Michael Christiaens. They chose Michael because it is Steve’s middle name. I hope he takes after his Grandpa by being faithful, steady, fun, smart, and surrounded by love.
Braxton, Glenda, Avery, Brad
Last night I went out to MacDonald’s with my son Brad and his family. His wife Avery was invited by MacDonald’s to preview a new way of doing business there. She has a blog called The Fly Life of a Wife. Very fun. I had a great time just spending a “normal” evening with my family. I took a Big Mac home to Steve but he was too drowsy to eat it. He actually ate it reheated today for lunch. Is it just me, or does that sound yukky? Oh yeah, it’s a Big Mac – always delicious. Seriously. I love Big Macs.
Steve and Hospice Nurse Jolene
Today Steve pointed out that his bladder was hard as a rock and huge. He hadn’t peed in about 10 hours so I knew that wasn’t right. I called our Hospice nurse Jolene and she came right over. She inserted a catheter into his bladder and drained it nicely. We really didn’t want to leave the catheter in, but the concern is that a tumor is blocking the flow, and if we don’t leave the catheter in then the flow may be blocked permanently, and Steve would have to go to the hospital for surgery to get things moving again. We don’t want to go to the hospital again. Now our concern is that the catheter will cause an infection. The last two times he had a catheter in he got severe septic infections, so the odds are in the favor of the infection. If he does get septic we won’t treat it with antibiotics, we’ll just keep him comfortable. We’ll see how it goes. At least now he doesn’t have to get up and pee every two hours like before. He’s actually pretty comfortable today. Hasn’t had to have extra pain pills like usual. Tomorrow we’re getting a hospital bed and hope that will increase his comfort even more.
Steve and I are the proud grandparents of our tenth grandchild, born this morning in Atlanta, Georgia. He doesn’t have a name yet, but I’m sure he’ll have one before he starts school. Mom and baby are doing well. He is the son of our son Andy and his wife Kathryn. Their second child. Steve was really wanting to still be here when this baby was born, so that it very nice. It makes me a little apprehensive because yesterday he said he only had one more person to talk to before he dies, and he spoke with her today. He says he is ready to go, and tonight he’s “feeling a little funny.” I’m probably imagining things, because I strongly desire him to be free of suffering. I know many of the grandkids won’t remember him, but he will be watching them from the other side, free from pain. The hospice team increased his pain meds today and I hope that makes a difference. He is drowsy most of the time but even he says that’s better than being awake and alert and in pain. I go to work on campus tomorrow and I hate to leave him, but I won’t be gone long. Our grandson Marlo takes very good care of Steve when I am away. And the rest of our family visits frequently.
My husband Steve continues to be very drowsy most of the time. Well all of the time really. Last night our daughter-in-law came to visit and he was just too exhausted to visit with her. He felt just awful sending her away. She came back today and he felt much better about it. They talked about Thanksgiving and he is thinking he won’t be here for the Holidays. I told him that although I would love him to be here, I sure don’t like seeing him suffer. If he leaves us before the Holidays we will at least know he is out of pain, no longer suffering, and surrounding with love and beauty.
He is focusing now on the wellbeing of his children and grandchildren. He wants them to be happy and safe and lead good lives. His love for them is more apparent with every passing day. His feelings are tender and sweet and he expresses them freely. We are witnessing a sacred journey.
I am teaching Health Promotion at the University of Utah College of Nursing. We talk a lot about nutrition and eating healthy. Apparently my expertise is not affecting my husband. When I asked him what he wanted for lunch today he said, Sugar Smacks, Frosted Flakes, and Trix. All in one bowl. Then he had seconds. He is very drowsy these days and spends the day resting and napping. He doesn’t walk anymore, except to get up to the restroom. He seems calm and relaxed.
My daughter-in-law took pictures this evening for her Christmas cards and she wanted to include my husband Steve. We are all wondering if he will still be with us for Christmas. Today was a rough day for pain and fatigue, and he’s pretty drowsy from the pain meds. But his spirits are up and he appreciates all the nice things neighbors, friends and family are doing for him. Yesterday he wrote some Thank You notes and I delivered them. He really likes visitors because they distract him from the pain. He’s gotten a little delusional again tonight. I’m not sure what that’s related to, but he had a great story about our grandson Marlo ringing a bell at Arby’s and his hospice nurse picking up the bill. Then he talked about why we shouldn’t have fake birds at his funeral, because the real birds would knock them down. So I told him we wouldn’t have fake birds at the funeral. I am in wonder over how our brain works, inventing stories and plunging us into other realities. I am happy when he gets delusions because his pain is gone for awhile.
In Sunday School the teacher asked us about who in our lives was an inspiration and our neighbor said, “Steve Christiaens. Even though he is facing death, he is strong and faithful, and thinking about others.” Steve is an inspiration to me, too. In the 39 years we have been married, he has done his Home Teaching without fail. Home Teaching is an assignment he has from our church to visit about 4 families every month. His families love and respect him and can count on him. He’s been so good about that, and he just loves those families. He will be missed by many.
Today was a bad day. The pain gets out of control. So many pills and yet his total comfort is out of reach. Yesterday was a good day. The pain stayed below a “3” most of the day. We can’t figure out why some days are good and some are bad. He finds comfort in eating Sugar Smacks. Well they’re called Golden Crisp now because that name probably sounds healthier. So anyway, I bought two more boxes and give him all he wants. He also finds comfort in visitors because they distract him from the pain, although a couple of days ago we had to tell some visitors not to come because he was too exhausted. That was hard for him and he hopes they come back.
The Hospice Nurse is doing a great job. She visits Steve 3 times a week and focuses on pain management and comfort. She laughs with us and expresses great care and concern. We so appreciate all she does. Today we entertained her with a dowsing rod demonstration and a discussion about dreamwork and feng shui. That was fun.
I acknowledge that I need to take care of myself in order to take care of Steve, so I went for a Girl’s Day Out with my friend today for a little while. We saw the Goosebumps movie and went to lunch. It is so nice to be blessed with great friends, and to take a break together.