All I Want for Christmas Is to Breathe

trigger warning: nicotine/cigarette addiction, hospitals, life support, potential anxiety medication side effects

My godmother is addicted to smoking cigarettes, struggles with depression and anxiety, and is socially isolated. She’s been doing less and less and getting tired very easily. She’s been in and out of the hospital with respiratory issues, but this time was extremely scary: at one point on Christmas Eve she was actually turning blue!

I hate hospitals. I watched my father deteriorate when he was dying from lung cancer in a hospital. I was powerless. I could do nothing to help him, my other family members, or even myself. The environment inside (traditional) hospitals is the worst for healing. There’s a whole awesome movement – arts in healthcare – to transform hospitals into healing environments with natural light, curved surfaces, open spaces, pleasant colors, nature scenes, less toxic noise… but I don’t think they’d even started researching that stuff when my father was in the hospital. And the hospital where my godmother currently is has never heard of it, either. This hospital is a contender for a version of Hell. We would have wandered lost in a maze of spaghetti box hallways in drab colors with ominous doors and incomprehensible signs for hours if the nurses hadn’t decorated the area around their station for the holidays. When I saw that I said, “Let’s go toward the bright colors before I have a panic attack.”

When we arrived on Christmas afternoon, my godmother was on her back with a mask suctioned to her face, practically forcing her to breathe. I wasn’t sure if she was conscious. She squeezed my hand with a pulse. When she tried to talk I couldn’t even make out syllables, never mind words. She sounded so small and scared. We told her we were here and we loved her and spoke to each other in hushed voices. I tried to find a song on my phone that she might like, but my data connection was limited and the songs that came up weren’t exactly conducive to healing – for her nor anyone else in the room. I felt foolish as well as powerless.

The hospital staff were talking to her father, brother, and son about putting a tube down her throat that would require her body to make even less of an effort to breathe. Life support. I don’t know what her or their views on life support are, but in my mind it’s worse than death. If a person dies they can be at peace and the family can mourn. Existing for god-knows-how-long on life support is just torture for everybody. There’s no peace, no healing, no recovery, no closure. Just life-destroying medical bills.

I didn’t even need to express my views; the family members with the right to make such a decision made it clear that it was unacceptable. Her brother and son told her she needed to try breathing on her own, it was the only way she could recover so they’d be able to take her home. She was scared, but they convinced her to switch to a mask that would just provide extra oxygen – without forcing air into her lungs. We were asked to leave the room; I was an emotional wreck.

I don’t even know how long I was folded in the cocoon of Fox’s arms, while he worked some kind of magic, before I was able to relax. It was amazing! When I stepped back and looked at him I felt calm, grounded, like my whole world wasn’t shattering.

With the new mask my godmother was awake and able to speak coherently. She wanted to sit up – to stand even! The nurse and everyone else kept telling her she’d exert herself too much and she was fine lying in bed, but she wouldn’t hear it. I asked her why she wanted to stand and she said the wires and tubes they had attached to her were pressing on her chest and neck. As far as we could see they weren’t, but she insisted. After some more back-and-forth, she sat up – practically without assistance.

Only then did her complexion approach normal and she said she was feeling better. She asked for water and talked with us, even smiled at our jokes. I felt connected with her and inspired by her determination as I watched her work to hold a seated position – without back support – and to breathe. In a whirlwind of “you need to do this” and “you look like this” and “are you sure you don’t want to do this” I did my best to remain the voice of empathy. “How do you feel?” “What do you want?” “Is this helping?” “I can relate.” She really seemed to appreciate it.

Physically, she was working to breathe and she said she felt like shit, but otherwise everything was normal. Her lungs are okay considering how long and how heavily she’s been smoking. Her resting heart rate and blood pressure were a bit high, but not enough to cause concern; her blood had plenty of oxygen in it.

But her anxiety was through the roof, to the point where if we weren’t there comforting her it would have interfered with all the physical stuff. In the moments when she was able to retreat into her own thoughts, we could see the pain they were causing her on her face. Guilt. Self-hatred. Anxiety. The realization that she could have died. Knowing she has to give up the one thing that’s been consistently there for her through loss and change and loneliness and the most difficult times. She’s tried to quit smoking and failed because overcoming the chemical addiction to the nicotine isn’t enough. She needs emotional support. She needs something to replace the role the cigarettes play in her life.

The solution she was handed was “Don’t be anxious.” I looked her in the eye and said, “Yeah, but how?” I told her about anxiety goggles, the idea that sometimes it’s like someone has put these goggles on me and everything seems overwhelming and I’m lost and I don’t know what to do and I can’t imagine how the world would look without the anxiety… but if I remember that I’m wearing the goggles I can think, “Maybe it isn’t as scary as it looks right now. Maybe that thing that seems so horrible isn’t as bad as I think. These goggles are distorting my view.” and I can try to separate myself from it. I wanted to suggest meditation or something she could do to channel the anxiety out somewhere or something, any of the number of measures people have suggested to me and I’ve found helpful. But it was hard to think in that room, hard to get my voice in among the people saying “Don’t be anxious,” and I felt a bit self-conscious about it, too. Would my contribution be taken seriously? More importantly, would she actually find it helpful?

My godmother requested a particular medication for anxiety – not the one the hospital staff seemed to want to use because that interferes with her breathing – so a doctor came in to talk about it. He said something to a nurse about giving the patient her medication when the family leaves, because that’s when she becomes the most anxious. When my godmother told him about the medication she wanted, he expressed concern because “it could cause your stomach to expand and force anything in it to come up and you could choke on it.” “Well, that’s not a problem, I haven’t eaten in three days.” “It’s still a concern. You could suffocate on your own secretions.” A doctor seriously told his patient who was struggling to breathe moreso due to anxiety than any physical ailment that she could suffocate on her own secretions! I don’t even have the words.

Self-consciousness be damned. I raised my voice to make sure he could hear me. “Let’s lower the anxiety in the room please!” I asked if they had any interventions for anxiety other than medication. He said he’d have the psychiatrist evaluate her. I backed off, mostly because I didn’t know what my godmother wanted so I didn’t feel comfortable trying to speak for her. I also didn’t know if the kinds of interventions I could think of would cost the family more than they could afford. But I don’t think – and I didn’t at the time – that she needs a psychiatrist. I learned later that the psychiatrist had already seen her and clearly wasn’t helpful. In the time since that moment, I’ve refined what I wanted to advocate for: someone to calmly inform her of any available alternatives to medication for managing her anxiety while in the hospital, and to follow through on whatever she said she thought would be the most helpful. Bonus points if they could also give her resources for when she leaves the hospital. Someone to listen to her. Why oh why would no one else listen to her?

Hours later, after she had decided she wanted to lie down and we had left to go have dinner, I learned that her son had been permitted to stay with her overnight. The nurse had advocated for it. I was so relieved to know that at least one need could be met: he was better than all the rest of us at noticing when she was retreating into her mind’s torture chamber. He could pull her back out of it.

Overall, I actually consider it to be a relatively positive Christmas experience. I got to connect with family members I’ve been feeling disconnected from, talking and joking and being honest with each other. We didn’t have TV or other convenient distractions; we were each other’s distraction from the hospital. We were there for each other.

Music was supposed to make me invincible, but it didn’t. My cousins’ compassion and determination – and her courage – were what got my godmother breathing on her own again, sitting up and conversing with us. All my years of schooling – and maybe even the lifelong involuntary therapist training – were worth it, because in the middle of hell with all of everyone’s (especially my own) anxiety I was able to help someone by empathizing with her. By being with her in that moment. By being honest about my own vulnerability. And by speaking up. It was a valuable learning and healing experience for me.

All I’ve heard since is that she’s still in the hospital. She texted hugs and kisses to Mom; when Mom asked if she could talk she replied “no.”

How to Visit Mom in the Hospital

I was hoping to find a script for visiting someone in the hospital so I’d feel better prepared to do this thing that I find horribly traumatic and have never done on my own before.

Google says: “Fat chance.”

Right, so I guess I’ll have to create my own.

Step 1: Put on the mask.

mama-bear-masked

Step 2: Gather things to bring.

remember-to-bring

Step 3: Drive there.

music and car

Step 4: Go to help desk.

NorthFork_r

Step 5: Call to make sure she can accept visitors.

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Step 6: Ask for directions.

lost

Step 7: Don’t be depressed.

the_sad_clown-smiling

Don’t Hurt My Mommy!

Something finally clicked for me: I don’t trust the healthcare system, especially not hospitals. I don’t. They do horrible things. They take babies away from new mothers. They might cut you without your permission. They don’t give you the information you need. They poke and prod you. They make you sit around naked for hours not knowing why you’re waiting. They don’t let you eat or drink after midnight. IVs – enough said. They might send you home while you still need help. They might prescribe you something that gives you hallucinations and delusions and keeps you from eating, and talk your caregiver into giving it to you against her best instincts.

Worst of all, they keep taking people away from me! They took my grandfather when I was only 4. They took my dad. They took my grandmother, and my great-aunt who was like a grandmother to me. Most recently, they took my uncle. The logical part of me knows these loved ones were in the hospital because they were sick, and died because the medical interventions available weren’t enough to keep them alive. But the irrational part of me sees my loved ones walking into hospitals and coming out of them in coffins.

And now my mother is in the hospital. Her double knee replacement surgery went well. She’s recovering just fine. I even got to talk to her; she was groggy but using complete sentences and already able to move her legs a little bit. But they made her wait 3 extra hours before doing the surgery and they’re not feeding her or even letting her drink water. And they poked her with lots of painful needles.

Grr!!! I’m feeling very protective of her, very angry. I don’t like that she’s over there and I’m over here and even if I were there I’d be powerless to protect or help her. I can smuggle in clothes and food she likes and other things she deems necessary. I can keep her company. But I can’t do anything about her condition and I can’t prevent them from causing her more discomfort. I have to be caregiver but I don’t know how to give care.

And I’m afraid that the same thing will happen to her that happened with Dad. The last time I saw him, I was overwhelmed by my own painful emotions. I had trouble getting past all the stuff he was hooked up to, the appearance of his failing health, and interacting with him. I was horrified and very, very sad. It put a wall between us. He didn’t want me to see him like that; he didn’t want to see me like that. I feel guilty – in his hour of greatest need I betrayed him. I feel angry – in my hour of greatest need, I was betrayed. Whether by him or by the system that didn’t provide us the support we needed to come together as a family, to interact with love instead of fear and death … that moment remains seared in my memory and on my heart, a painful scar that can never be healed.

Tomorrow I have to visit my mother in the hospital. She’ll probably be bedridden, both her knees still bandaged. Possibly still groggy, with tubes coming out of her. A dreaded IV. *shudders* The hospital look. Smell. Sounds. All of which I’ve grown to hate and fear. If I could I would puff myself up to 10 times my size, put out my claws, bare my teeth, and give everyone death glares. I would growl so loudly the earth would tremble. YOU WILL NOT HURT MY MOTHER!!! YOU WILL NOT TAKE HER FROM ME!!! SHE IS MINE!!!

mama-bear

But I can’t really do anything. This was her choice. It’s something she needed. It’s done. She needs to be in their care, and I need her to be there too because I wouldn’t know the first thing to do for her and frankly I couldn’t deal with it. But I’m worried about her and I’m worried because I haven’t been able to work on the paper due Thursday. Somehow I doubt I’ll be able to do much on it tomorrow, either. The biggest distraction: everyone is turning to me to find out how she’s doing. I can’t handle all the phone calls.

At least they’re concerned about me, too. It helps to know that people care. I just wish my aunt hadn’t told me to “enjoy tonight, because tomorrow all hell breaks loose.”