hospice – Dev on Running

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.

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.

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.

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.

With Alzheimer’s, there is nothing to fight. There is only a fatal truth you might at first deny and wish away, then curse and mourn, then ultimately surrender to. Trying to hold on to your loved one—as they were before or as they are now, whatever that may be today—is like holding a handful of sand. You can clench your fist tightly for as long as possible, but every last grain will inevitably slip through your fingers. At some point you realize it’s a mercy, for yourself and for them, to let go.

Perhaps that’s why I felt a wave of peace last week after we enrolled my mom in hospice care. Our Sisyphean task had ended; it was time to surrender. It felt like a seismic shift to go from doing everything we could to improve and prolong her life, to simply clearing the path and steeling ourselves to accompany her on this final leg of her journey. The only goal now is to ensure her a peaceful and painless death. It’s a hard thing, but it’s the right thing.

The worst part is that we will lose her twice. We lost her once, in mind, years ago; we’ll lose her in body next. As upsetting as it is to see her in her current state, at least I can still hug her. At least she still responds in kind when I tell her I love her. Soon, even those last few bits of my mom will be gone forever.

But there is comfort in knowing I will find her again after her death. In her magnificent book The Last Ocean, Nicci Gerrard writes:

“Death is never a slight thing, however peaceful a passing is, however minute the distance crossed. Just a breath away, then like a feather being blown with a single puff and a whole world has disappeared.

“And yet death can also restore a person, especially when that person had been un-made by dementia. Once they die, they are no longer only old and frail and ill, they are no longer only confused and forgetful, no longer a wrecked body and a failing mind, no longer not themselves. Because they have gone from us, they can come back to us and be all the selves they have ever been. Young, old, everything in between. Robust, vulnerable, everything in between. And often we fall head over heels in love with all these selves and we understand how they contained multitudes.”

I shelved the practice of missing my Real Mom long ago. It felt like a betrayal to who she is now to long for a previous version of her. Why push aside the person in front of me in a favor of memories of someone who no longer exists in this world? She is still my mom, after all. Not in the way she once was, but through no fault of her own. I know my Real Mom wanted desperately to stay with us. The least I can do is stay with her, holding her hand through every heartbreaking devolution.

I know I’ll eventually miss even the hardest days with her. But I also look forward to reclaiming my Real Mom. I hope to shuffle these most recent years to the back of my mind and make space for the warm glow of happy memories to come flooding back. I’d like to trade the awkward, one-sided conversations for our long discussions over fish tacos at the mall. Can I archive the many times I wiped her nose and changed her briefs and hear her laugh again instead?

All of it will always exist, but I hope my first thoughts of my mom each day will not be of this painful ending, but of the very best of her. I suppose it’s on me to choose to play the highlight reel. That’s the gift in this tragedy: Because they have gone from us, they can come back to us.

She has already popped up a few times. When we received the hospice referral from her doctor, I lay awake that night with this image from her 2015 wedding day in my mind. She was smiling, in love, happy and hopeful for the future.

I cried to this version of my mom: “I’m so, so sorry I couldn’t save you.” My heart broke for her, knowing now what was ahead. I felt ill, like I wanted to peel off my skin, as if sacrificing myself would make any difference. I wanted to go back to that day and somehow change it all for her.

The sick thing—the thing that makes me grateful for biweekly therapy sessions over the past two-and-a-half years and counting—is that I’m not sorry for my current mom. Rather, I’m relieved there is an end in sight to her suffering. Different feelings for different moms. My therapist earns her paycheck a thousand times over for helping me sort through everything.

The other time my mom popped up was when I drove her back to memory care after a recent weekend visit at her old home. She was sitting shotgun next to me, silent, staring out the windshield with her mouth gently hanging open as if she didn’t have the energy or muscle memory to close it. In a flash, I saw my Real Mom sitting there instead. Her gaunt cheeks were plump again, her hair was styled, her clothes were carefully chosen and free from the stains of spilled food or worse. We were heading to lunch, or to her favorite Eddie Bauer Outlet, or to try on wedding dresses for the millionth time. She was there. And she still is, somewhere.

I’m not sure how to navigate this hospice period. (I bet the simple and correct answer is: one day at a time.) There is inevitability and uncertainty. How long? I hope not too long, for her sake—but also not too short. I need time to say all the things, to let her know she was the best mom and grandma, to assure her that we’ll all be okay and that she shouldn’t be scared to leave whenever she needs to. But I also don’t want to freak her out; she doesn’t know she’s dying. That’s a blessing, and also terribly sad.

My mission is to make her feel loved, like it’s her birthday or Mother’s Day every day. She has lost her appetite and taste for most food, but she’ll still make short work of a brownie or ice cream bar with her tiny bites. And while she is nonreactive to many stimuli, the right music still gets her smiling and dancing with her hands.

Let’s make this thing a party. Let’s indulge in chocolate and dancing and joy until the very end. Let’s give this life a beautiful send-off, for what is it if not to be savored with the people we love?

Tag: hospice

Destabilized

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