Tears, Prayers, and Caregiving Advice

It’s fascinating to me how God enables us to praise him through discouragement. It’s paradoxically encouraging to know that when we cry out to God with discouragement and—let’s just be honest—accusations against him, he doesn’t turn a deaf ear to our pain. Instead, he meets us in the middle of it with compassion, grace, and mercy—despite our unbelief, bewilderment, and anger.

A Recap of the Week

It’s Saturday and Mike’s been in the hospital 7 days now. Today is day eight. He will likely get discharged tomorrow as long as today goes as planned. As I said in a recent update, we initially came in because of a potential small bowel obstruction. Thankfully, that was ruled out. They determined that he had a bacterial infection causing acute intestinal inflammation. The CT scan showed a urinary tract obstruction and a stent was placed to relieve his swollen kidneys. That procedure went perfectly and his kidneys and bladder have returned to full function now.

Unfortunately, last Saturday’s scan also showed that his rear abdominal mass has grown again. We don’t yet know what that means specifically for further treatment plans, but we know there’s definitely going to be further treatment. Our local oncologist is consulting with Dr. Einhorn and other specialists to determine the best course of action. What we do know is that Mike didn’t respond completely to the first line of chemotherapy treatment. He had a partial response, but he still needs further treatment to kick this beast to the curb. Because it has grown again, his back pain has returned, so they’ve addressed that issue while he’s admitted as well and it seems to be on a great track.

Lots of Tears and Prayers

I’m committed to being open about our struggles and what walking through cancer is really like for us. Yesterday was a particularly hard day for me emotionally. Wednesday was Mike’s low day. We listened to the Spotify playlist I shared in the last update both days. Praise music helps us to look up.

I was doing all the things I knew to do to help myself be encouraged. I was reading the Bible, praying, leaning on the promises of God, and preaching the gospel to myself. None of it seemed to be working. I could feel the tears and the meltdown welling up and I just kept pushing it down because there wasn’t time to deal with my own emotions. I was needed elsewhere. Let me tell you in case you’re unaware, this isn’t an emotionally healthy choice. (Big shock, I know, haha!).

This is a good friend right here!

Here’s a screenshot of a text to describe where I’ve been mentally/emotionally this week.

Yesterday, the dam broke. Our oncology nurse practitioner came in and saw me crying, put out her arms, and hugged me . . . which just brought further tears. I ran into one of Mike’s previous hospitalist doctors in the hallway, who wasn’t assigned to him this time, and she asked me about him and just let me cry some more. She’s a very sweet Muslim who respects my faith in Christ and encouraged me to press into my faith like she’s seen me do other times Mike’s been in here. Wow. I don’t even know how to describe what an encouragement that was.

For lunch, I decided to walk to a restaurant across the street to get a break from the hospital for a bit. On the way out, I stopped in the chapel to spend some time praying. The only words I could get out, as usual, were “Lord, please help!”, accompanied by uncontrollable sobbing. Once I got myself under control, I grabbed a tissue from the table that holds the Bible and a notebook for people to sign in and write down prayer requests. I always like to look at the prayer requests and pray for a few of them when I’m in there. I saw a request that said “Heal Kim, Please God, Amen, Thank You.” Now, I know that prayer was for someone else. And I also know that I am not the medical patient in this story. But let me tell you, God used that prayer request to remind me he loves ME. He loves me. I’m not overlooked. I matter, too.

Later yesterday evening, I read the book of Job. Boy, did that man understand how to lament! I started my day with a simple two-word prayer, “Lord, help!” and ended it with a different two-word prayer. Simply, “Thank You.”

The photo from the prayer notebook

Some Advice For Caregivers

I’m not the patient. I’m “the wife.” If you’ve ever cared for another person, you know that caregiving is hard. It’s exhausting in a way that nothing else is. Your whole sense of autonomy is gone. You become the care you’re giving. Caring for someone else’s health needs identifies you and it consumes your mind, body, and spirit for the duration of the time you’re actively caring. Every thought, word, and deed is about keeping another person alive and safe. It’s an immense responsibility, but every person I know caring for someone they love would gladly choose to do it over and over again to show their love for their person, whether it be a spouse, a child, a parent, or some other relationship that is meaningful and lasting in your life.

I’ve heard some people compare caregiving to parenting. I’m a parent and I can tell you that caring for a critically ill person is not the same as parenting, nor should it be. Especially if that person you’re caring for is an adult. The child/parent relationship has a built-in authority structure {I’m assuming it’s a healthy one}. When you’re caring for an ill adult, there is autonomy, dignity, and agency you must help maintain for them. Your job as a caregiver is to be their advocate, not their parent. Advocating is a much different action than parenting. If you attempt to parent your adult loved one, you will infantilize them and that takes away their autonomy, dignity, and agency, which is discouraging and dehumanizing. But this is where things can get sticky. Decisions have to be made and patients are often too tired, too much in pain, or too consumed with fighting their illness to make those decisions. Caregivers are making decisions at every turn, coordinating doctor’s appointments, assessing the seriousness of symptoms, answering questions to help educate those who care and are praying, plus merely trying to live their “normal” lives with all the decisions and activities required (pay the bills, cook the dinner, do the laundry, etc.).

All these things add up to extreme exhaustion if you’re not careful. I usually feel it welling up for days, but can’t devote time to just cry or scream or sleep. So I push it down. I drink more coffee. I let a few tears slip while I’m driving from one place to another, just to release a little of the pressure. I take power naps sitting in doctor’s office waiting rooms.

But I also try to make time for things I need. It feels so selfish to go to a massage or the salon when Mike is suffering, but my back will be in knots so tight I can’t stand up straight and my hair will start to look like Muppet hair if I don’t keep up with it. On Tuesday this week, I had an appointment for a chiropractic adjustment and massage. This is something I’ve done every three weeks for a couple of years to keep migraines at bay. Mike’s stent procedure was on Tuesday. When I found out what time it was, I said—in front of two nurses in his room at the time—that I would need to cancel my appointment so I could be there while he was in surgery. Mike and the two nurses all at once said “Go get your massage!” Then the nurses took time to remind me and encourage me that I must take care of myself if I intend to be a good caretaker for him. They looked at the surgery schedule and told me that I would probably be able to make it back before he even went back for surgery anyway (which turned out to be exactly the case!).

I’ve rambled on for too long to essentially say this; caregivers, please take care of yourselves. Ask for help if you need it. People are willing to help. Let yourself cry. Let yourself scream. Feed yourself. Make time to sleep more than just a power nap. Find small things that give you joy like reading, coffee, yoga, a favorite tv show, or a conversation with a dear friend about everything but the illness that has consumed your life. I’m preaching to myself. Tomorrow, while Mike’s at the hospital preparing for discharge, I will go to church before I come visit him. Because I need it and, more importantly, Mike needs me to be spiritually refreshed so I can manage life.