I often write about the practical side of facing cancer. One thing I haven’t written about is what it’s like to watch your loved one suffer. It’s something that people try not to think about. Friends and family who don’t live with the patient 24/7 often miss the drama of middle of the night pain. This is a good thing. It’s not something that anyone would want to see and hear. Yet it falls to a spouse or other close caregiver to be there. This is also a good thing because no one should suffer alone.
What is like, really, to watch your loved one suffer?
The best way I can describe it is a feeling of utter helplessness. You want to make the pain stop, but there is no way you can. “Have you taken your pain pills?”
“Would you like me to run you another hot bath with Epsom salts?”
“I just took one. As soon as I got out the cramping began again.”
I hold him and pray a silent prayer for the pain to subside. I believe this is the best thing you can do when you have to watch your loved one suffer.
He attempts to pull on some compression stockings to help his circulation and stop the painful cramps, but his toes are so sensitive from the neuropathy that it feels impossible.
I begin looking for compression stockings with zippers and no toes to help. Instead, we settle on purchasing a contraption off of Amazon that helps people get their socks on. While it won’t help him tonight, it may in the future. It’s surreal to be shopping online while my husband is crying in pain.
He tries to lie down again. Within a couple of minutes, he jumps out of bed, crying out in pain and frustration. He slams his hand against the dresser in an uncharacteristic show of anger.
“We should call the 24-hour nurse line.”
“No.” He doesn’t say it, but he thinks they will tell him to go into the hospital. I know that’s what he’s thinking. While it’s important to respect their wishes, it’s also important to feel fully informed and supported during those times when you must watch your loved one suffer.
I look up a website that does into great detail about leg cramps. I read it aloud so Dan and I can brainstorm together. “Are you taking calcium every day?”
“Yes. And magnesium and potassium.”
“How about fluids? You slept most of the day. Maybe you’re dehydrated. You should have a Gatorade.”
“Then I’ll be up all night, going to the bathroom.”
“At this point, you’ll be up all night with cramps. Try rubbing some Biofreeze on your legs.” I hand him the bottle of the most magical analgesic rub we have.
He takes it and goes into the bathroom while I grab my phone and his wallet. I pull out his insurance card and dial the 24-hour nurse line. He grumbles in irritation as he hears me on the phone. I tell the nurse the problem as well as the things we’ve done so far. “I guess I just want to know if there’s something we’ve missed, something that could help him.”
The nurse asks
“Does he gets labs done when he goes to the doctor?” The next lab appointment isn’t until mid-December, a month away. But, he does have an appointment with his palliative doc in less than a week.
He can hear our conversation and chimes in, “I could schedule a lab appointment before I see Dr. N. I really should have my port accessed, anyway.”
The nurse encourages us to discuss these cramps with the palliative doctor. “She could prescribe a different muscle relaxer that may work better. And his electrolytes may be off, even though he is taking supplements. It could also be something with no known cause. Sometimes we just can’t find a reason.” She gave me hope and then dashed it.
I got off the phone and again encouraged Dan to drink a Gatorade. “Red or orange?”
“Which one tastes better?”
“They both taste amazing. They’re Gatorade,” I put a positive spin on it. He chose a red one and eventually settled in for the night. When sleep finally arrives at three in the morning, we are both so grateful.
This is the account from a recent late-night episode (late November). We’ve had countless in the last 6 years. Some involved nausea, while others were due to dizziness or trouble breathing. Neutropenic fevers have pulled us into the emergency room on several occasions. All of these long nights were filled with the terrible feeling of helplessness. In those times I wish I could take his place. But I can’t.
If you ask a professional…
How do you deal with having to watch your loved one suffer? They will often suggest a mindfulness technique, such as meditation or a breathing exercise. I think there is merit to this, but in the moment, it is completely counter-intuitive. My husband is hurting and I’m going to focus on my breathing? Unfortunately, we often have to do what doesn’t come naturally.
It might be unrealistic to expect a caregiver to practice mindfulness when they are in the middle of a night like I’ve described. But, it can still be helpful at other times, such as during chemotherapy, while they are doing okay, but before the side effects of the chemo kick in. This can build up your reserves and steel your nerves for what’s to come.
After a tough night
When the worst is over, mindfulness and self-care practices can help you recover. It’s important to take the time to care for yourself. It may mean calling a family member or friend to give you some respite time. Allow yourself this very important time. It isn’t a luxury. It’s a necessity.
It hurts to watch your loved one suffer. That pain is the price of love. There are ways to bounce back from this pain, both for you and your loved one. That’s what resilience is. In the next few posts, we will look at how you can be more resilient no matter what cancer throws your way.
Have you ever had to watch your loved one suffer? What helped you through that time? Please share your thoughts in the comment section below.
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In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace. My books are available at Amazon.com:
I also blog at Heather Erickson Author/Writer/Speaker