When my mom began hospice care in July, I believed she would die within a month—not because I’m naive to how long the hospice period can last, but because the hospice nurse said as much.
During our initial meeting with the nurse and social worker, they walked us through a binder of information and asked us if we had any questions. Of course, we wanted to know if they had any idea of how long she had left—and, of course, they declined to estimate. Hospice is for people who likely have six months or less to live, but I wanted all the answers I could get. Nobody has a crystal ball, though, so fair enough.
That changed once the nurse got a good look at my mom. As my mom slowly paced the memory care dining room with Don trailing to make sure she didn’t trip over anything, the nurse quietly said to me: “With how frail she is, I don’t expect this to go on very long.”
“Do you mean months or weeks?” I asked.
“Weeks,” she said.
I believed her.
At 97 pounds, weak and hunched over, it seemed miraculous my mom was still alive at that point. She hadn’t eaten a full meal in several months. When her weight dropped drastically earlier in the year, we gave the okay for her facility to obtain a doctor’s order that would allow them to offer her an Ensure shake with each meal, and that became her primary source of nutrition. But at 220 calories a bottle, it wasn’t enough to help her gain a significant amount of weight, even if she drank every last drop. She ultimately qualified for hospice due to malnutrition.
In the spring, we made some changes to my mom’s medication after many long discussions and consulting with her doctor. We decided to taper her off the Alzheimer’s drugs she’d been on since she received her diagnosis. They are intended to improve mental function and confusion related to Alzheimer’s disease, but are by no means treatments or cures. The hope is that they can slow the progression, but there’s really no way to know if they do. We had reached a point where we no longer wanted to slow the progression, as it would only prolong her suffering.
Her doctor also prescribed an antidepressant to help with my mom’s mood. She sobbed every single time we visited, which was just horrible. I worried about medicating her into oblivion, but the doctor assured me an SSRI would simply level her out.
Changes in medication can affect appetite, so once she was off the Alzheimer’s drugs and on the SSRI, the doctor adjusted the dosage to see if she could find a level that would help boost her appetite—or, if that didn’t work, she would determine the lack of appetite was unrelated and make the hospice referral.
We know how that turned out.
The decision to stop the Alzheimer’s drugs was agonizing. Then, with hospice, came the question of whether we should continue with the Ensure. I understood Ensure to be a nutrition shake you could buy without a prescription at any grocery or drugstore—and I ordered a month’s supply at a time to be delivered from Costco to her facility—but they treat it as a medication and keep it locked up with the other drugs. Hospice considers it to be a life-prolonging supplement, and therefore does not cover the cost of it like it does her hospital bed rental and supplies like briefs and wipes.
“Life prolonging” and hospice don’t really go together. Our goal had changed. But the idea of cutting off my mom’s near sole source of nutrition, and thus being responsible for hastening her death, weighed on me. The decision belonged to three of us—Don, my brother and me—but I was the one starting these conversations, determined to do the right thing for my mom—what she would have wanted if she could have chosen.
I pored over her advance directive, which, unsurprisingly, addressed none of these intricacies of the final stage of dementia. I recalled a conversation we had after her breast cancer treatment, where she regretted only doing a single mastectomy and worried about the cancer coming back in her remaining breast. Chemo had ravaged her. “I won’t go through that again,” she told me. At the time, I couldn’t believe she wouldn’t pursue treatment, wouldn’t jump at the chance to live longer and spend more time with her family. Now, I understand some things are worse than death.
Many conversations. Research. Soul searching. Tears. We decided to stop Ensure. The hospice team seemed relieved. They didn’t want to give their opinion, but it became clear after the decision was made.
“Weeks,” she said.
I believed her.
It was one thing to start hospice. It was another to come to terms with the fact that my mom could be gone so soon.
I shifted into survival mode, thinking about what I needed to do in the weeks leading up to her death and the weeks after. I notified close friends and family in case they wanted to plan any last visits. I looked in dismay at the trips I had planned over the next few months, not sure whether to cancel or wait and see.
My therapist and I discussed what a “good death” would look like; what I wanted to say to her before she went, whether she could understand or not; whether I wanted to be there when she died; whether she would want me to be there when she died. I ordered and devoured a book by a hospice nurse, which brought me great peace. I started looking on the bright side: if my mom were to die soon from malnutrition, she (and we) would skip some of the most agonizing steps of her dying from Alzheimer’s. Yay, I guess?
I thought about how beautiful that summer had been, and felt comforted by the fact that if my mom died soon, I could still go into my backyard and lie down on the toasty patio pavers for a few minutes, turning my face up toward the sun and letting its warmth seep through my skin and into my bones—something I often do after therapy.
I’ve noticed the seasons and weather have had a greater impact on my mood these past few years, and I have no doubt it’s because of this prolonged experience of losing my mom. Everything is sadder when it’s gloomy; everything feels more hopeful when the sun shines. I’d give anything to warm my bones on the darkest days.
A week into hospice, I wrote this through tears in the middle of the night:
I hope you die on a summer day
so your last breaths aren’t shattered by raindrops
but harmonized with birdsong.
I hope your body is drenched in light
impossibly aglow
a celebration of life
and whatever comes next.
I hope you ascend on a sunbeam
migrate with the butterflies
tumble along a breeze like a dandelion seed
look down on the world in all its beauty and think
how lucky was I to be alive
just a little bit
and see myself out amid clear skies
75 degrees
a high like no other.
That’s me projecting what I think a “good death” would look like. It’s also me working to accept, to look on the bright side, to find a way to make this very sad thing feel kind of beautiful. In any case, it’s probably the nicest thing you’ve ever read that starts with “I hope you die.”
My mom did not die on a summer day.
You know what she did do?
She started eating.
Maybe my mom’s body finally squared up with the medication changes. Or maybe it’s an example of us making plans and God laughing. Or maybe, like the badass she always has been, she pulled an Arya Stark and said, “Not today.”
I don’t know how to explain it, but the day after her supply of Ensure ran out, she ate three square meals like it was her job—and she has ever since.
You’d think this would be a happy turn of events, but it’s a real mindfuck to go from “weeks” to “???” I had accepted, looked on the bright side, found a way to make it beautiful. It felt like a relief to have an end to this nightmare in sight. But still, we go on.
Just because my mom is eating doesn’t mean everything is peachy. She has only gained a few pounds and is still slowly descending through this final stage of dementia. All of those most agonizing steps of dying from Alzheimer’s loom before us. She has become very unsteady on her feet, but still walks up and down the halls of her facility constantly—a recipe for disaster that has caused many falls. I worry I’ll get a terrible phone call one of these days.
She was recently reevaluated and recertified for hospice, for which I’m grateful. The team’s support has been invaluable, and I’d hate for her to graduate from hospice only to have to inevitably reenroll. It’s a trauma I don’t wish to repeat.
I still struggle with uncertainty. I worry about getting through the holidays this year. I worry about her dying on a winter day; where will I find the warmth to get through it? Maybe she’ll die next spring. Maybe next summer. I don’t get to decide. I just need to gather the strength.
The good news is: we didn’t kill her. We agonized over the Ensure, but maybe stopping it was actually the best thing we could have done. I know we made the right decision with utmost love for her. Maybe this is her way of lifting that burden from us.
The other good news is: she doesn’t cry anymore. The SSRI indeed leveled her out, so her mood ranges from placid to happy. Despair seems to be a thing of the past. That, too, feels like a huge burden lifted. I used to need the rest of the weekend to emotionally recover from our Saturday visits. Now, the sadness is manageable.
Seeing her is still tough. I notice her physical appearance changing week by week. Although she’s a bit stronger and more energetic than she was in July, her temples and eyes now appear sunken in. It’s getting more difficult, too, to physically and verbally direct her when I’m helping her in and out of the car, or feeding her, or helping her in the bathroom. A few months ago, I offhandedly said “Janet” and she whipped her head around toward me in a way she never did when I said “Mom.” So now, she is Janet, which makes sense because that’s who she was long before she was Mom. And it helps me a bit to separate the two. Mom has been gone for a while; now I’m helping Janet through this last phase of her life.
Despite the hard parts, I treasure my time with her. We listen to music in the car—her same favorites, over and over—and she still loves the Backstreet Boys. We watch romantic comedies. She recently stayed awake through the entirety of “Crazy, Stupid, Love” and laughed her mostly silent laugh at all the funny parts, of which there are many. She gets a kick out of me good-naturedly making fun of Don. In those moments, the light comes back into her eyes, and she’s Mom again.
Aaron, Evie and I recently visited Leavenworth on one of those trips we didn’t have to cancel because my mom is still alive. On the drive there, I always look for landmarks that indicate we’re nearing the Bavarian-themed town. One of them, if you’ve come over Blewett Pass, is Rollercoaster Road, just to the left before you reach Highway 2. I’ve never been down Rollercoaster Road, but I always thought it must be fun.
“I’ve ridden it on my bike,” Aaron told me. “It’s not fun on a bike.”
That makes sense. I imagine relentless ups and downs, probably some twists and turns. It’s like this Alzheimer’s journey. It’s like life. Fun if you’ve got the right equipment, if you’ve willingly gone down it. Not so fun when you’re pedaling as hard as you can, when you’re not sure where it’ll go next or when it’ll end.
For now, I’m still on my own Rollercoaster Road. After so many ups and downs and twists and turns this year, it feels like I’m cruising through a fairly level section, with no idea what comes next. I’m doing my best to hang in there. Next week is November 1, four years since my mom’s diagnosis. I’ll have earned my bachelor’s degree in Alzheimer’s, and I guess I’ll be going for my master’s. There’s certainly much more to learn.
I’ve also got the New York City Marathon coming up on November 5, which has been a powerful beacon through all of this—something to work toward and look forward to. A reason not to drown. A bout of runner’s knee threatened to take this race away from me, but nine weeks of physical therapy and a bit of determination saved my training. I hope reaching the finish line will feel like a real triumph—physically, mentally and emotionally. I worry about what comes after, but I try to put that aside so I can just enjoy.
I tell myself that someday, Rollercoaster Road will once again just be a thing I drive past on my way to somewhere better.
Thank you for reading. I’m 82% of the way to my $10,000 fundraising goal for the Alzheimer’s Association. If you’d like to donate, you can do so here before the NYC Marathon on November 5. Thank you so much for your support. ❤
Dev on Running 