This Is Hospice: My Last Days With Louise

We are all dying. All of us, right now, as we squabble over dinner plans and run our kids to baseball practice and put on mascara and binge-watch Netflix, we are all inching closer to the end.

We know this, of course. But there are people in rooms all over the world who are closer than most of us to getting there. I spend my Saturday afternoons with them. When I tell people I’m a hospice volunteer they say things like “I don’t know how you do it” and “It must be so hard,” and that stuff makes me wince because it’s not at all. It’s actually a beautiful, soul-satisfying experience, and many times the highlight of my week.

So I’m sharing a snapshot of my last two visits with one of the patients I’ve been seeing since December. I should note that it’s not always like this. Often my visits with patients are filled with laughter and conversation and quiet companionship. But this is what it’s like when our time together is coming to an end, which is the part I think people fear – and shouldn’t. I hope that reading this might entice even one person to consider spending a tiny bit of their free time signing up to become someone’s last new friend. You will not regret it.

 

Sunday, July 17:

“Good morning, Louise!” I say as I walk into her bedroom, past the sign taped to her door that says “LOUISE’S ROOM.” The same reminder is on the wall opposite her bed. Mid-morning sunlight shines through the blinds facing her, a silent admonishment over her still being under the covers on such a gorgeous day.

I set my hazelnut coffee in its paper Panera Bread cup on her nightstand and pull her wheelchair up to the bed before plopping down on it. This is usually where I sit. She is usually awake.

A country music song plays on the radio atop her dresser, nearly drowned out by the steady drone of the oxygen machine behind me, its long green tube snaking and curling its way to Louise’s nostrils. I glance down to make sure I haven’t run over it with the wheelchair, cutting off that extra bit of air she needs to help her lungs inflate. She’s about to die, but I sure don’t want to have a hand in it.

I lean over her bed rails and stroke her wispy white bangs. They are soft and fine and finally not hanging in her eyes; someone must have cut them.

“It’s Robyn. I wanted to come back today to see you again.” For all the months I’ve known her, she’s never said or, to my knowledge, remembered my name. I feel silly saying it now. The last time I had a patient with Alzheimer’s, I had to reintroduce myself every other week when I visited her. “Oh, come in. What do you need?” she’d ask, and I’d tell her who I was. We’d go over the same details, that I have two kids, that she has one son, a retired teacher. That I’m a writer. That her son wrote a book. “Have you seen it?” she’d ask, picking it up from the table beside her the same way, so eerily, every time. “I’m just reading it now,” she’d say as I marveled. The bookmark never moved.

Louise wasn’t like that. She never remembered who I was from one visit to the next, but she didn’t seem to care, and her face always lit up when I walked in. “Well look who’s here,” she’d say, then ask me if I saw her car in the parking lot, or tell me she needed to get home soon to help her mother, who really was working too hard in the garden. She’d lived at the nursing home for at least two years, hadn’t driven in forever, and her mother was long dead.

It was disorienting at first, but I grew to anticipate the unexpectedness of the visits. I knew I’d be joining her on the roller coaster that was her brain, along for the ride for an hour or so. Arms up, we’d go wherever the tracks took us, me holding her hand when she got scared, when her world dipped and spun out of control. “When can I go home?? I don’t understand where this is. Why isn’t anyone coming?” It happened more and more as the months wore on.

But the coaster sits idle on the track today. I rest my head on the bed rail and watch her breathe. Her eyes are closed; there is no movement behind her eyelids. Her mouth is open in the shape of an oval, lips curled inward, jaw slightly slack. The left side of her face is swollen and bruised from a recent fall, splotches of purple and red and green and yellow that run together and down her cheek and chin and across her chest. I wonder where she was trying to go when she tumbled out of bed last week. To the bathroom? To her mother’s garden? To the post office where she worked 40 years ago?

I take a long sip of coffee. “I met your youngest son yesterday.” I put down the cup and pick up her hand. It curls around mine and I glance back at her face, but see no flicker of anything. I notice her mauve nail polish has been removed, but whoever did the job wasn’t thorough. Just enough for the staff to watch for the fingernail beds to change from pink to blue, I imagine. Her fingers are cool, though they’ve been under the down comforter. “Wayne was here to see you!”

Wayne, the first family member I’d met in eight months of visiting her, who wasn’t sure how long Louise had been living there or when he’d seen her last.

“He loves you very much.”

Wayne, who didn’t speak to his mother or touch her. But he did preach to me for an hour about how my heart is black with evil and I need God to save me.

“He sounds like a very passionate man, Louise. He sure loves God. I bet you had a hand in that, didn’t you?”

Wayne, who lamented that when his mother dies he will be forced to move out of her house so his siblings can sell it and divide the estate.

“I know you did your best raising them,” I tell her, my face leaning toward hers. I hope she can hear me. “Being a mother is just the most amazing job in life, ya know?” My voice chokes. “And you got to do it. It’s a hard job, too, I know. It’s so hard. And you did it four times. They all love you so much.”

I’ve only met Wayne, but I still believe what I say. It is a hard job, and I’m sure she did her best. I know they love her, I see traces of it here and there: A Mother’s Day card propped up on the shelf. A new box of Little Debbie Oatmeal Crème Pies on the windowsill. Wayne asked me if his mother ate those; I said I’d never seen her eat anything. “I bet people who work here are coming in and taking them,” he said suspiciously. He had deep concern for the crème pies.

I caress her forearm, our hands still locked, while my eyes take in the room one last time. The calendar on the wall still showing May. The photos of loved ones on the windowsill. The framed black and white portrait of her husband in his uniform on the dresser behind me. For awhile she knew it was her husband. Then one day she said it was her brother. A month or two after that she wasn’t sure who it was.

“Hmm,” she’d said, noticing it suddenly and squinting at it from her bed 6 feet away. “Is that?” And then, nothing. Wayne told me his father died in 1988, which is a long time to live with the memory of having a spouse.

I pray aloud for her, with her, on her behalf, thanking God for her, for this friendship, for her life, for her peace and pain-free body at the end. I ask God to take her, to wrap her in His arms, to reunite her with her loved ones.

Amen.

Then, for a long while, I just sit there quietly. My mind wanders to my life. I resist the urge to check my phone, to mindlessly scroll through social media platforms looking at people’s vacations in progress, political rants. I love that for this hour I get to leave my life and most of my identity behind. Nobody here cares who I am, what I’ve accomplished, what I’m wearing. I’m just a warm hand to hold, an easy smile to flash in a lonely person’s direction. That’s it. It’s perfect in its simplicity. I do so little here.

I watch her chest rise and fall. At one point I lean over her again and whisper, “It’s OK to go, if you’re ready, Louise. I’m right here with you.” Selfishly, I want her to leave this world while I’m here, so I’ll know she didn’t draw her last breath alone. I don’t know why this matters. She might not even know I’m in the room, and it’s sadistic, morbid, totally messed up to wish for someone to die. But the end is coming anyway.

We don’t control such things, though, and after an hour I need to leave to pick up my kids. I kiss her forehead. “I don’t want to leave you.” I start to cry. I watch her chest rise and fall. “I love you, Louise. I will never forget you. When I see you again, will you remember me? I hope so.”

I walk out of the room slowly, watching. Just in case. Her chest rises and falls, her mouth still hangs open. I sniff and wipe away tears as I head out the door. I wonder when the end will come.

 

Saturday, July 23:

I didn’t expect to see Louise again after last Sunday, but I’ve kept tabs on her throughout the week and by Saturday afternoon I hear from her hospice nurse that she’s still alive. “I’ll be surprised if she makes it through the night,” she tells me over the phone, so I decide to head back one last (last) time.

I’m careful to remember my hospice badge today, as I expect a vigil of some sort by family members who don’t know who I am or whether I belong there. But when I enter her room, it is empty. It is also disheveled. The closet doors are open, as is the nightstand drawer. Louise’s bed has been pushed away from the wall, I assume to give the aides better access. Her family photos have all been piled on one end of the windowsill to make room for extra linens and medical equipment.

Her room is in transition along with her body, and I am unsettled to be inside it more than I am to be beside it.

Louise is lying on her back, her face angled straight up to the ceiling. Her mouth is wide open but her breath is quiet; I don’t hear the telltale rattling in her chest that sometimes happens near the end.

“Lou-iiiiise,” I sing-song playfully, sitting down in her wheelchair, maneuvering around the O2 tube. “I’m so glad I got to come back and see you again.” I comb my fingers through her bangs, caress the side of her face. The bruises look a bit lighter, but now I can see there are bruises on her left ear, too. And as my fingers comb through the hair framing her face, I feel a knot the size of a gumdrop right above her ear.

It hits me then that the fall is why we’re here. I mean sure there’s the Alzheimer’s, and the cancer, but for such a frail body to have suffered such a physical blow … her compromised immune system does not have the strength to come back from it.

I don’t make small talk, yammering on about how hot it is outside or what my kids and I did yesterday. It would seem almost disrespectful to do so. This is her time.

I find her hand under the covers and take it in mine. It is much stiffer than last week, but very warm. I lean over her and pray aloud, heartfelt words that come fast from my heart to my lips. We never talked about religion, she and I. Doesn’t matter. It’s at least making one of us feel better.

I watch her chest rise and fall for an hour and a half. Every time I take my eyes off her for even a second, when I look back I think for a moment that she is dead, that she has drawn her last breath while I was studying the pattern on her curtain valance, or contemplating what I’ll have for dinner. But always there is the slight rise again of her chest, and my shoulders relax.

I can’t get over how warm her fingers are, almost sweaty. When a nurse comes in and I comment on it, she pulls the bottom corner of the comforter back and shows me Louise’s feet and legs, cold to the touch and bluish-gray, death slowly creeping up from her toes, now past her knees.

“She woke up two days ago,” the nurse says. “Got up, had a little oatmeal. She told me she loved me. Told a few of the other girls she loved them too. She told us that night it was her last night. That was … Wednesday, I think. We all kind of expected her to go then.”

But she didn’t go then. She hung on, tough girl, and now it’s Saturday evening, and I’m so glad she hung on because I got to see her again. I got to drive here one last time and sit in this room with the incessant country music playing, and the oxygen tank humming, and her stuffed bear smiling, his little pink tongue making him look playful, excited, like an adventure is right around the corner. She sometimes said more to that bear than she said to me. I wonder who will inherit him. I hope it’s a spunky great-grandchild who will take him on adventures. He’s been in that bed for two years, too clean, too perfect. But definitely loved.

The nurse says her older son came by for a bit on Wednesday, cried, asked to take her home. “He said he wished he’d done things differently,” she says, pulling her mouth to one side.

After the nurse leaves, I have an urge, very small, that seems crazy but feels right.

“Would you like me to sing to you?” I ask Louise. “I was thinking I could sing you a song.” Amazing Grace, I hear inside my head. Sing ‘Amazing Grace’ to her.

I lean back and glance out the door to make sure nobody’s coming, or in earshot. Then I lean in real close. “I should warn you, Louise, I’m really not a good singer. Like, if anything’s gonna make you either wake up from your coma or follow the light, listening to me sing might do it. So pick a side.”

I start trying to run through the verses in my head but decide it’ll come back to me once I start. I sang this classic to both my babies for countless months while rocking them to sleep. Singing an old song is like riding a bike, I reason.

Amazing grace, how sweet the sound, that saved a wretch like meeeee….” I start quietly, tentatively, perhaps slightly off-key. She doesn’t move a muscle.

After the second verse I stall out. “When we’ve been here 10,000 years.. wait, no.” I stop cold. That’s not the third verse. That’s like the fourth or fifth verse.

We sit in silence for a moment. Part of me is relieved to be done singing. Well, I tried. I look at her. It feels unfinished. This is the last time she will hear a song. You can’t half-ass it, Robyn.

Dammit.

“I can’t remember the words, Louise,” I say. “I’m gonna have to look them up.”

I pull out my phone, Google the song, come up with the lyrics, glance again out the bedroom door, see no one, then lean in and start from the third verse. “Through many dangers, toils, and snares, I have already come. …”

I sing two more verses, then the first one again for good measure. When I finish my little concert for one it feels extra quiet in the room. Then the country music comes back on – I swear it wasn’t playing a minute ago – and some guy is drawling about a woman needing directions, something about sweet tea.

Louise’s body jumps a bit, small tremors involuntarily jolting her muscles. I watch and wait. She settles. I think about what an enormous privilege it is to be present for someone’s final hours. Who would have foreseen that? Obviously we all know who we spend our first moments of life with, but nobody knows who will be with them at the end, whose is the last voice they’ll hear? Louise certainly couldn’t have imagined it might be a random middle-aged single mom with no ties to her family or even her hometown.

But I think there’s incredible beauty in that, in an anonymous hand of humanity reaching out, on behalf of this world, to say goodbye and well done, to whisper “you have been loved, and you will be missed,” right into her ear.

And that’s what I do next. I stand over her and whisper those things and more, things for only me and her to know. I kiss her forehead many times. I caress her face and her shoulder. I watch for signs of recognition, any twitch or flutter or smile that would show she can hear me, feel me, will miss me too. There is nothing. It doesn’t matter.

“I’m gonna go now, Louise. But I’ll be thinking of you. You’re in my heart, OK? You are not alone. I’ll be right here.” I touch her chest gingerly; the words and gesture make me think of E.T., and I chuckle through my tears.

“I love you, sweet friend.” We cannot hear that enough, I figure. One more glance at her chest. Yes, still breathing. I walk out of her room, past the sign that for so long reminded her where she was. “LOUISE’S ROOM.” She could never remember it; I will not forget it.

(Louise died early Sunday, July 24; she was 94.)

Louise's constant companion, Russ. She believed the brand on his tag was his name. She was right.
Louise’s constant companion, Russ. She believed the brand on his tag was his name. She was right.

 

[Note: Names were changed for privacy purposes.]

10 thoughts on “This Is Hospice: My Last Days With Louise

  1. Robyn- reading your story made me cry. It was so beautifully written and I pictured you next to Louise talking to her with such compassion,love and care. Thanks for sharing it – it so touched my heart!

    1. Thank you so much. I appreciate every reader who made it through the whole thing. It was a long one! But one that’s close to my heart.

  2. Thank you Robyn for such a lovely story. Thank you for the love you give to your charges. My father is traveling the Alzheimer’s roller coaster. I am so thankful to be able to visit with him, I have always been Daddy’s girl. I treasure the moments I have with him. Some days he’s chatty, some days just happy for the company. He has become the darling of his care facility… everybody loves Bob, and Bob loves everybody… he still has a wonderful sense of humour, and he knows I am one of his, not always which one, but one. I am blessed that he knows I am one, and sees me coming down the hall to see him.

    And I, too, sang Amazing Grace to my children, that, and for some reason, Silent Night.

    1. I’m happy to hear you and your father are still sharing tender moments, and you are soaking up each one. I also sang “Michael Row the Boat Ashore” for some reason, and the Bob Dylan classic “Make You Feel My Love,” among many others. Nothing ever worked consistently, darn kids.

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