Last night we had several visitors come to see my husband Steve. He was in bed but the mood was light and fun, as you can see by the pictures. Steve loves to have visitors, especially after such a hard day. He got up and went to the grocery store in the afternoon and that really knocked him for a loop, although it felt good to get out. His pain is fairly well controlled now but he had to take a couple of extra pain pills which caused a few delusions but that’s OK. Today is a better day. He is resting up in hopes of going trick-or-treating with his grandchildren.
We were watching Steve decline and then rally. We are back to decline again. He had a very painful night a couple of nights ago. He says it’s the worst he’s ever had. Yesterday the hospice nurse changed his medications and he had a good night last night. However, with the change of meds his delusions have come back. For example, he thinks the headboard had dirt in it and spiders are coming in and he needs to spray them. Well I say delusions are better than pain, and he agrees. He is spending his days in bed now. Today he wants to write something for this blog, so stay tuned.
As for me, I am trying to stay organized. It just feels better when company comes to visit Steve if I’m not worried about the house looking clean. I know I could just let that go and quit fussing, but it’s easier to just keep things cleaned up. Yesterday my daughter-in-law Avery helped me re-organize the kitchen pantry and it has added a measure of peace to the kitchen. Now today I need to go through the mail and get that organized, grade papers, learn a new software program for next semester, and answer some emails.Not sure what I’ll do about auto and home maintenance things that Steve usually handles. I have three willing and able sons, thank Goodness. I try to get things done while Steve is sleeping. Which he is doing now. So I will get going.
Things sure change fast around here and everything is unpredictable. My husband Steve has been in bed for the past 6 days, barely able to move because of pain, nausea, and fatigue. He’s been sleeping throughout the day and has had numerous delusions. He’s been convinced he only had a few days to live, and he’s been seeing beings on the other side of the veil (I don’t think that was a delusion). Well, today he woke up and decided to go to church! I was sure he would not make it down the stairs but he did great! He went to church for 3 hours, after which he came home and talked on the phone for about an hour to our son Andy, who is recording some of Steve’s memories. Then our Bishop came for a visit and Steve was lively and interactive. This is a roller coaster. We were watching him decline and now we are watching him rally. I wonder what tomorrow will bring. This is a good reason to take one day at a time and not worry about tomorrow. Steve is knocking on Heaven’s door but we really don’t know when the door will be opened. I have to say it is nice to see him better today. We had a family birthday party yesterday and the kids were thinking it might be the last time they would see him. As you can see from the pictures below, we had a fun time together.
My husband Steve is experiencing a physical decline but mentally and spiritually things are happening. He spends his days in bed now. He is often caught up in delusions that make no sense to me but they make sense to him. I don’t mind because if he is having a delusion or sleeping, he is out of pain. He says today he saw people getting ready for him to join them on the other side. He doesn’t recognize any of them but they are kind and busy preparing. He thinks he will leave soon, perhaps within a week. The hospice nurse says at this stage many people are right about when they will die. She estimates he probably has about 2-4 weeks left. I hope he goes fast so he can quit suffering and join the celebration waiting for him in Heaven. I will miss him but I know he will be having a great time where he’s going, and we will meet again.
This morning when I woke up I found my husband Steve sitting on the side of the bed. When I asked him what he was doing he said he was trying to figure out what category his urine should be in. He went on to say that he was in prison, and “whoever ‘they’ are want my urine but I’m not sure why. He said that if he doesn’t stay in line with other prisoners and hand over his urine he will be in trouble. He described more details than I am sharing, but he was convinced he was in prison. Now, I had a choice: Get wigged out over this and feel sad, or I could just go with it and not get upset. At first I laughed along with his story. Then I thought how inappropriate it was to enjoy my husband’s obvious mental aberration. So I chose to get sad over the whole thing. After about a minute I decided that whether I was feeling positive or negative would not change Steve’s delusion, but would have a strong effect on my own wellbeing. So I quit judging myself, and went back to enjoying his narrative. When he finished, he asked me if it all made sense. At that moment I remembered what I learned in nursing school: Don’t join the delusion. So I told him that no it did not make sense. We were at home, not in prison. He disagreed with me, but I felt like I did the right thing as he lay down and drifted back to sleep. When I got home this afternoon he said he is living in two worlds and sometimes gets them mixed up. He vaguely remembered the morning’s prison story. And now he’s been sleeping for a couple of hours. I like it when he sleeps because I know he feels no pain for awhile. I hope when he wakes up he will be living in the same world I am in, but I will go with the flow. Whatever happens, we can do this.
Another rough day for my husband Steve. It is 9:00 PM right now and he is eating for the first time today. He has thrown up twice and feels crummy. This morning he finally decided to go into Hospice Care. The nurse with Solstice Hospice came over and did all the paperwork and answered all our questions. She’s great. She’s coming back on Wednesday and she’s bringing drugs. I think this was a good decision. He is too sick to continue radiation therapy and going to numerous doctor appointments. Now we will focus on comfort, specifically managing the pain and the nausea. In the past couple of weeks a new tumor has blossomed under his right knee. I am amazed at how fast it has grown, and it is beginning to cause pain. It’s the size of a golf ball. It will be hard to leave him tomorrow when I go to work. So glad I’m only working part time. But he is never alone. Our grandson is here, and my daughter-in-law is close by. And neighbors are always saying they will be there when needed. No worries.
The trees in our yard and mountains are turning beautiful Fall colors. I looked up what Fall symbolizes, and found things like change, ripeness, maturity, and transition. All done in beautiful colors. My husband Steve also seems to be going through a change right now. A few days ago he was having some delusions. When I made some apple cobbler he said I was going to have him taste it first to make sure it wasn’t poisoned. He wasn’t kidding. He also said he packed up Niles, Daphne, and Maggie so they were ready to move, although he wan’t sure who Maggie was. I reminded him that Niles and Daphne were on Frasier (TV show) and he said he knows that but he got them ready to move. Weird, huh? He’s been very drowsy and stays in bed now throughout the day. And this morning he had a fever of 102.8 (It’s gone down since then). So, along with the Fall, Steve seems to be going through a transition into a different way of being. I am hoping to talk him into entering Hospice care, but he is not emotionally ready for that yet. He has 6 more radiation treatments to go and may cancel those, to reserve his energy. We’ll see.
The beauty of this new season of change has been with us as we grow closer, since we are spending lots of time just “being” together. I’ve noticed in our yard some flowers are just now blooming. There are parts of our relationships, with each other, family, and friends, that are just now blooming too. Fall is a wonderful season. Old things fade away gloriously and new possibilities come into view.
Just a quick update on my husband Steve. He has done 5 radiation treatments and has 8 to go. He is nauseated and still in quite a bit of pain. We are hoping the radiation will decrease the pain soon. He is getting better about taking his pain meds more regularly, before the pain gets out of control. He is enjoying the Transcendental Meditation class we are taking together, and it seems to help him sleep better. He went to the grocery store with me today and did well. He does love food! He is in good spirits.
In case you are new to this blog, my husband has Stage 4 Metastatic Bladder Cancer.
Our son Andy is visiting us from Atlanta for a few days. He is interviewing my husband Steve to get his life story, and stories from his life. For example, the next question he is going to ask is, “What in your life tested your mettle and how did you handle it or not handle it?” He’s recording Steve’s answers and will get it all written up to save for posterity.
Last night the whole family came over for dinner and then we sat out on the patio and chatted. We put on some Virtual Reality (VR) goggles and explored a virtually real world. Very fun. I found it very relaxing and care free. And my vision did not pulse when I was watching the VR video. That gave me such a nice break. Virtual Reality seemed so much nicer than real reality, for just a few minutes.
Andy made lasagna in the crock pot and it was delicious. Sadly, Steve threw it all up at 2:00 AM. He had a rough night but is feeling better today. Our plan now is to continue radiation until October 26, and then start Hospice care the next day. I am looking forward to that so he can relax and quit going places every day.
Speaking of going places, we are planning to learn Transcendental Meditation (TM) this week, if Steve feels up to it. I talked to the instructor, who studied with Maharishi Mahesh Yogi, and knows the surviving Beatles. It was a blast from the past talking about the 60’s and the Beatles. But the bottom line is that TM sounds like just what I’m looking for – a deeper more beneficial way to relax every day. Although I meditate every day now, I just can’t seem to get as deep as I used to. So I am really looking forward to this, and hope it helps Steve in his journey through pain and nausea and fatigue.
My husband and I have been interested in how learning and living progress from Knowing and Doing to Being. For example, I KNOW about my husband’s diagnosis and prognosis, and I DO things to take care of him. But my goal is to BE his companion and caregiver through this healing journey. When I operate from the space of BEING then I use less energy, have more peace, and am grounded and pretty happy. I get out of my head (knowing) and body (doing) and function from my heart (being). Today I will take him for his first radiation treatment. Well, it’s a “dry run” really, no radiation yet. But I can focus on the DOING art of it – getting him ready, getting him out the door, helping him get undressed for the procedure, driving, and on and on…. Or I can focus on just BEING with my husband, and enjoying the time we have together.