Destabilized

In January, I spent a whole session telling my therapist how well I was doing: I had a fulfilling daily routine, felt energized by my writing projects and was excited to continue riding the positive momentum. I thought I had it all figured out, but hubris always comes with a price.

On February 1, several of my coworkers were abruptly let go and I was moved to another team to pick up the work of a few writers who departed. I have mostly the same job, but under a new boss, in a new-to-me organization with completely different playbooks and processes.

I felt a mix of whiplash, survivor’s guilt and indignance over not having a say in the situation. All the while, the voice in my head chided: Be grateful. Other people have it worse. You don’t deserve to feel anything negative about this.

I’ve spent the past several weeks finding my footing and am still working on it. The sting of sudden change has calmed; the chaos of being thrown into an unfamiliar role has subsided. Everything is going to be okay.

And then.

Last week, my mom’s hospice social worker called to tell me she had gained weight since her last recertification and was going to be discharged. My mom initially qualified for hospice last July due to malnutrition. Even though she started eating well after that, she was recertified for hospice multiple times because her weight stayed the same. Now that she’s gained a few pounds, she no longer qualifies.

Enrolling my mom in hospice was upsetting, but I was blown away by how effective and communicative our hospice team was and grew to appreciate them as an invaluable asset while we navigate this final stage of my mom’s illness. When I suspected my mom had an eye infection, hospice sent someone ASAP to examine her and prescribe antibiotic eye drops. When my mom was having trouble with her feet, hospice sent me a list of traveling foot nurses who could come see her. When I requested a wheelchair because the one her facility put her in was broken, hospice had a new one delivered the next day. A nursing assistant visited once a week to give my mom an extra shower, and she’d take the time to dress her in nice clothes and accessories and send us photos. Our hospice team made my mom a priority and improved her quality of life. To lose them now feels like a gut punch.

It seems wrong to say that my mom “graduating” from hospice is a bad thing. Who wouldn’t want their parent to take a step back from the precipice of certain death? But she’s more or less in the same place, just with less support.

My mom is not getting better in any meaningful way. She is significantly worse now than she was last summer in that she now spends 98% of her time in a wheelchair due to her frequent falls. That doesn’t matter to Medicare, which pays for hospice, and she seems a way out from requalifying, whether it’s for malnutrition or dementia. But she inevitably will, and I’ll travel with her to the edge again.

The voice in my head continues: Be grateful. Other people have it worse. You don’t deserve to feel anything negative about this.

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I’ve struggled to find a way to describe the way I’m feeling about these things that are kind of bad, but not that bad, and also not necessarily good. It’s not an emotion that rings clear like sad or angry or helpless, although it often comprises one or more of those.

Finally I heard on a podcast the word that sums up my world lately: destabilized.

I’ve written before about feeling like I’m on Rollercoaster Road with all its twists and turns. Now I feel like I’m traveling it on a unicycle, desperately trying to keep my equilibrium. It’s been windy lately. I’m still moving forward, but struggling to find stability.

My therapist is also on leave right now, so I’m having to spot my own mental gymnastics through this.

Here’s what they would probably say to me: You are allowed to feel sad, angry, helpless and destabilized. You don’t have to be grateful; no one is keeping score. You are feeling arbitrarily shuffled around and abandoned and those are hard things no matter the circumstances. It takes time to find your equilibrium after major changes and you don’t have to rush it. Feel your feelings, and take good care of yourself.

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Sunday was my mom’s last day in hospice care. We visited at her old home and she suffered a fall that included hitting her head on a wall, leaving a serious dent—in the wall, not her head. She seemed to be totally fine, but Don and I were terrified. I almost grabbed my phone to call 911, but remembered I would call hospice instead, since my mom has medical orders to only receive comfort care—not life-sustaining treatment—in the event of a serious injury.

If something terrible happened now, who would I call? My mom is in a liminal space: not sick enough for hospice, not well enough to be saved. A lost soul caught in the in-between. It feels like Don and I are floating, untethered, in that space with her. We have only each other to hold onto.

My EMT friend sent a kind message explaining I can absolutely call 911. First responders can administer first aid, then help navigate where to go from there. If my mom sustains a serious injury, it would likely trigger hospice eligibility and they would take over—a small comfort in an awful situation.

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It amazes me how much it helps to name my feelings. It helps to write about them and release them, to the extent that I can. It even helps to be my own fake therapist, though I can’t wait for mine to come back.

The sting of sudden change will calm; the chaos of being thrown back into an all-too-familiar role will subside. Everything is going to be okay.

I think.

Eventually.