Category: mom

Alzheimer's disease, dementia, mom

Conversations I Wish We Had About Dementia

by devonpassLeave a Comment on Conversations I Wish We Had About Dementia

Like many millennials whose Sisyphean task is to assist their boomer parents with technology, I visited my mom in January to help facilitate a video call with a nurse practitioner. I found her pacing up and down the hallway.

“Hi, Janet!” I greeted her. “I’m your daughter Devon.”

“Oh!” she said, as if she knew she should recognize me, but did not. I asked her how she was doing. “I feel scared,” she replied.

“Why do you feel scared?” Her answer was a nonsensical jumble of words. She was able to articulate her feeling, but not the underlying reason. I venture she was scared because she didn’t know where or when she was. I’d be scared, too.

During the video call, I cringed as the nurse practitioner explained my mom would be reevaluated for hospice in the coming weeks. I tried not to say the word “hospice” in front of her, even though she’d been on it for six months. I glanced at her nervously, wondering if the word penetrated her consciousness. She stared out the window of her room, clenching the wooden slats of the blinds with both hands. When she’s nervous or upset about what’s going on around her, she tends to grip the nearest object. Her entire world has slipped away; she is desperate to hold onto something. 

I’ve spent the last six years watching my mom deteriorate, and it’s been five years since we discovered why. 

At 37, I am an early survivor of this specific hell. It’s quiet here. After her diagnosis at age 61, it took me more than a year to be able to speak the words aloud: “My mom has Alzheimer’s disease.” Even then, I could only whisper it between sobs.

Eventually I found a virtual support group for adult children of parents with early onset Alzheimer’s—the kind that strikes before the age of 65—and a handful of us whispered to each other over Zoom once a month. I began sharing my experiences on social media and more people my age came out of the woodwork to say they, too, are slowly and silently losing a parent. 

“She’s in the end stage now and it’s the worst thing I’ve ever seen,” one woman in her thirties wrote to me about her mother. “I haven’t met anyone else with a similar experience.”

Alzheimer’s was never on my radar; there is no record of it running on either side of my family. My mom was a highly capable executive assistant who spent her free time quilting and tending to her vegetable garden. She looked forward to retirement and becoming a grandmother. I’ll always remember how she danced around my living room in 2015 when I shared the news of my pregnancy. I didn’t expect to rejoice over my daughter learning how to use the toilet, dress herself and read at the same time my mom lost those abilities.

We certainly never discussed how things might play out if she were to develop dementia. It’s a conversation I didn’t think to have—and might have been afraid to have, as if saying “Alzheimer’s” aloud could conjure it into reality. Still it crept up on my mom, stealthy and vicious, and stole her from me piece by piece.

My friends—most of whom have healthy parents who host holiday dinners and babysit their kids on weekends—sympathize, but can’t relate. It’s my lonely reality right now. But like the Stark family in “Game of Thrones,” I issue an ominous warning to my fellow millennials: Dementia is coming. 

I’ve seen it with my own eyes; I’ve heard it in the whispers. And the statistics are grim. The Alzheimer’s Association estimates 6.9 million Americans age 65 and older are living with Alzheimer’s dementia in 2024. It projects this number will balloon to 12.7 million by 2050.

I worry about the onslaught of devastation that’s coming for boomers and their millennial children. Our parents are the ones who swept us back into the nest during the Great Recession, kept us on their health insurance plans until we turned 26, and opened up guest rooms and basements to us temporarily—and not so temporarily—during the pandemic. Many of us are still paying off decades-old student loans. We’re unprepared to not only lose our parents’ support, but to muster all our energy and resources to support them. 

How many boomers have long-term care insurance or the savings to fund long-term care? How many of their children realize they will be the ones to provide or pay for this care? Are there enough neurologists to diagnose millions of new Alzheimer’s cases? Enough home health-care workers to support family caregivers? Enough memory-care facilities to house patients? Enough therapists to help families survive the excruciating experience of losing a loved one over many years?

To echo my mom, I feel scared. 

I’m not equipped to fix our health care system’s current and future failures around caring for Americans living with dementia and supporting their families, but I do have some advice on a personal level for families who may face this fate. It all starts with a conversation.

My family was completely unprepared for all the challenges of Alzheimer’s disease. Nothing will ease the heartbreak of an Alzheimer’s diagnosis, but making key decisions ahead of or shortly after a diagnosis can ease some heartache down the road for loved ones. 

When my mom was diagnosed in November 2019, I thought we had plenty of time before we needed to discuss the details of her inevitable decline and confirm her wishes. But the initially slow progression of her disease accelerated into a freefall during the first year of the pandemic, and we were left scrambling for solutions from a place of panic. Once the window has closed for someone with dementia to make informed decisions about their future, loved ones are left to make their best guesses. 

A survey by the Kaiser Family Foundation found that fewer than half of adults have seriously discussed long-term care plans with a loved one—including who will help take care of them and how they will pay for health care and other support they’ll need if they become seriously ill. And nearly 7 in 10 boomers will need long-term care in their remaining years according to the U.S. Department of Health and Human Services. Families should have open conversations now about the future, whether or not there is a history of dementia in the family. 

Get real about finances. 
Discuss the resources you’ll have available to pay for care. The cost of caring for someone with a progressive neurodegenerative disease is staggering, and the truth about who pays for it can be summed up by one of fellow millennial Taylor Swift’s songs: “You’re On Your Own, Kid.” 

Medicare only pays for long-term care if you require skilled services or rehabilitative care in a nursing home for a maximum of 100 days; that hardly scratches the surface of the amount of care needed for someone with dementia who typically declines over several years. Medicaid may cover some long-term care costs, but only for those with very limited financial means. Long-term care insurance can help, but be sure to review policy details and coverage limitations. Veterans may be eligible for benefits through the Department of Veterans Affairs. My friend Lauren, who cared for her grandmother with Alzheimer’s and previously worked for the Alzheimer’s Association, advises to “check out your state’s aging department or your local Area Agency on Aging (AAA). Each state is different and some have bridge programs for people with Alzheimer’s or other diseases that can be a stipend to pay for assisted living or memory care until someone qualifies for Medicaid. In some cases there are home-care grants, and others will pay for facility-based care.”

But many families—like mine—rely on personal savings and home equity to pay for care. My mom’s husband Don was initially determined to care for her at home, but in the darkest days of the pandemic, the emotional and physical toll it took on him was clear and cruel. “We can’t save her,” I told him, “but maybe we can still save you.” We moved her into a memory care facility near Seattle, which over the past four years has drained hundreds of thousands of dollars from the retirement savings they worked so hard to build. The monthly cost has risen to more than $13,000. We are counting down the months until we’ll need to sell their home. 

It’s a stark reality many Americans face, as detailed in the New York Times series “Dying Broke,” and few people realize it until it’s too late to prepare. Try calculating the median costs of care in your area—including in-home care, adult day care and full-time care in a facility—and consult with a financial advisor to get personalized guidance based on your circumstances.

Talk through medical options. 
Alzheimer’s disease is invariably fatal, but there are medications and experimental treatments that may help manage symptoms or slow the progression. Discuss whether or not you’d want to take medications or participate in a clinical trial. 

My mom began taking two medications immediately after her diagnosis. I realized in the spring of 2023 that her quality of life had declined to the point where it no longer made sense to attempt to slow the progression of the disease and, after many discussions with family members and her doctor, we tapered her off the medications. Even though I felt this was the right decision—the one she likely would have made if she could—making it was agonizing. My mom had a standard advance health care directive, but it did not account for the nuances of dementia care. How I longed for a clear record of her wishes.

Consider filling out the dementia-specific advance directive created by Dr. Barak Gaster, an internist at the University of Washington Medical Center. Discuss it with loved ones, and share copies of it with them and with health care providers. The Conversation Project also provides a guide to determining what matters most to someone living with dementia so they can have a say in their health care.

I agonized for months over whether my mom needed to endure her decline at all. Would she have wanted to end her own life instead? Should I have helped her explore options while she was still capable of carrying out a plan? The answer, it turned out, was no. Once I felt brave enough to broach the topic, Don assured me her Catholic upbringing made the idea impossible. Having no religious roots myself—and having witnessed her suffering up close—I can’t say I’d have the same answer if I find myself in her shoes someday.

It’s worth discussing where you stand on the idea and considering the options, which do not include medical aid in dying in the U.S. Even in the states where it’s legal, people with dementia are excluded from utilizing it due to two of the requirements: once they have less than six months to live, they are no longer able to make and communicate an informed decision to health care providers.

However, it filled me with great peace to read Amy Bloom’s beautiful memoir “In Love,” which chronicles her husband’s decision following an Alzheimer’s diagnosis to end his life with the help of Dignitas, a Swiss nonprofit organization. I also learned about voluntarily stopping eating and drinking, and read with great interest “The Last Day of Her Life,” a New York Times Magazine feature about how Cornell psychology professor Sandy Bem orchestrated an early exit on her own terms.

Complete and share important paperwork.
In addition to having a standard will and estate plan in place, it’s crucial to record all financial and health care wishes in the following legal and medical documents. Consider working with an attorney who specializes in estate planning or elder law to cover all your bases.

Discuss the details of these documents with the people who will be responsible for carrying out your wishes, and share copies with them and with health care providers. Don’t skip the sharing part; no one can follow your directions if they don’t know they exist.

Durable financial power of attorney: Designate an agent (and at least one backup) to make decisions regarding your money, property and belongings if you lose the capacity to do so. Following a dementia diagnosis or other mentally incapacitating health event, the agent should contact every entity involved with your finances—including Social Security, Medicare, the IRS, insurance companies, banks and utilities—to complete any paperwork required for them to recognize the agent as the sole executor of your accounts. For example, the Treasury Department doesn’t recognize power of attorney for handling federal payments like Social Security; one must separately apply to serve as a person’s representative payee.

Don described the entire process of taking control of my mom’s finances as a total nightmare. He was met with red tape at every turn, and had to physically bring my mom to several offices along with documentation from her neurologists regarding her diagnosis and mental incapacity. It was incredibly stressful for both of them. “If she had been any more incapacitated”—at the time, she was still able to hold a normal conversation and sign documents—“I don’t know how I would have possibly done it,” he said.

Advance health care directive or living will: Specify what actions should be taken for your health if you lose the capacity to make decisions. Make clear your wishes regarding artificial life support and more.

Durable health care power of attorney: Designate an agent (and at least one backup) to make health care decisions for you if you lose the capacity to do so. Discuss your wishes with these agents and make sure they are comfortable carrying them out.

Do not resuscitate (DNR) order: This medical document instructs health care providers not to perform CPR or other life-support procedures if your heart or breathing stops. Discuss your wishes with your physician, who will fill out the form.

Portable medical orders (POLST): This medical document is more specific than a DNR or advance health care directive and is for people who already have a severe illness, like dementia. The form and its exact name vary by state, but it communicates your wishes as medical orders, including whether or not you want CPR, to be transported to a hospital and to receive medically assisted nutrition. Discuss your wishes with your physician, who will fill out the form.

Millennials: Plan for your future now.
The longer we live, the more our risk of dementia increases. The time is now for millennials to prepare for our own potential long-term care needs.

If you’ve held off on contributing to a 401(k), IRA or other retirement savings plan: start today. If you already contribute and are able to increase the amount: start today. If you’ve never even heard of long-term care insurance or looked into applying for it: start today.

I felt hopeful in 2019 when Washington state established the WA Cares Fund, a first-in-the-nation mandatory long-term care insurance program, but almost laughed when I saw the maximum benefit is $36,500 (adjusted up to inflation). It’s a drop in the bucket for someone with dementia. But still, it’s better than nothing, and far more than what many Americans have planned for their long-term care.

If you have any assets, a spouse or children, it’s essential to have a will and estate plan in place, and to create a record of your financial and health care wishes before you’re no longer able to do so. You can always change them later. 

Let’s break the silence.
Alzheimer’s is the most-feared disease of older Americans, and the only one of the top 10 causes of death in the U.S. with no known cure. The stigma around Alzheimer’s causes people to live with it in silence and shame, and their families to grieve in silence and shame as well. Some call it a family disease because of the devastating impact it has on loved ones’ mental and physical health.

I’m done whispering. Now I’m yelling: Dementia is coming, but we don’t have to suffer through it alone.

I’m encouraged by my generation’s propensity to share our struggles, thanks to social media, and to embrace therapy and support groups. I believe many of us will cope with losing our parents by shedding light on our darkest experiences. It makes a world of difference to connect with others enduring the same heartbreak. The Alzheimer’s Association has a 24/7 helpline (800.272.3900) and offers support groups and a free online community for people living with dementia and their loved ones.

The greatest tragedies are made even worse by our failure to learn from them. And the lessons we learn are made even more valuable when we share them.

I still can’t save my mom, nor the millions of boomers who will be diagnosed with Alzheimer’s in the coming decades. Maybe I can, in some small way, help save the people who love them.

Alzheimer's disease, dementia, mom

Missing

by devonpass3 Comments on Missing

“Not a day goes by that I don’t miss my mother.”

This comes from a core memory I have of my mom and I lying in bed sometime during my elementary school years, chatting before she tucked me in for the night. I don’t remember the context of the conversation that came before or after, but I clearly recall the quiver in her voice, the heartbreak behind each word as she said it. It was perhaps the first time I realized my mom wasn’t invincible. 

My mom’s mother, Mary Behrens, had diabetes and died from a stroke in 1992 at age 69, when my mom was 33 and I was 4. I have no memories of her or of my paternal grandmother, a lifelong smoker who died of lung cancer in 1991, also at 69.

Even if my grandmothers had lived long and healthy lives, I wouldn’t have grown up knowing them well. My parents moved us away from our extended family in Southern California to the Pacific Northwest in 1989. The story goes that they fell in love with Seattle’s gorgeous greenery, temperate climate, and more affordable real estate on a summer road trip to the 1986 World’s Fair in Vancouver, British Columbia. They even walked through a few open houses on Capitol Hill. Since I was born the following spring, I have strong reason to believe I was conceived on that trip, perhaps in the camper they borrowed from my mom’s father. Romance!

I’m grateful my parents moved us to Washington. I loved growing up here, with our mountains and lakes and distinct seasons. The sound of rain instantly makes me feel at home. But I’m sad I never knew my grandmothers and only saw my grandfathers, uncles, aunts, and cousins every few years. I have stacks of letters from my grandfathers and knew them well enough from our visits, but we never had the kind of relationship that can only be cultivated by living in close proximity.

It must have been difficult for my parents to leave their families in California to raise their own a thousand miles away. It must have been even more difficult when both their mothers fell ill and died just a few years after we left. Suddenly, the distance between them could no longer be bridged by a phone call or flight; the missing could not be alleviated.

I was thrilled for Evie to be able to grow up with all her grandparents nearby. My mom especially couldn’t wait to be “Nana.” She talked about putting a crib in her sewing room so she could babysit all the time, but that never happened due to her decline from early onset Alzheimer’s. She and Don only ever watched baby Evie once for a few hours while we attended a friend’s wedding in my hometown.

I now sit on the floor of that room from time to time, slowly sorting through my mom’s belongings and packing up boxes to take to Goodwill. Sometimes I think about the different memories that could have been made there, and that’s what makes me saddest about all this: mourning the relationship Evie is missing out on with her nana. Nana is still here, but not in the way my mom and I had both hoped.

They do spend time together, and my mom always has a smile on her face when Evie is around. Evie has learned a great deal about patience and compassion, as she’s played the role of assistant caregiver and even comforter to me at times. She’s had to grow up a lot faster than many kids in that regard, and learned much earlier than I did that her mom isn’t invincible.

Evie is incredibly close with Aaron’s mom, Greta, who goes above and beyond to nurture their special relationship. “GG” takes Evie on adventures to Skagit Valley to see the tulips and Bainbridge Island to hunt for beach treasures, plus invites her to sleep over on weekends in her own room outfitted with cute bedsheets and plenty of stuffies.

I’m eternally grateful for Greta. She is the grandma I wish I could have had. She is the mother-in-law I’m so lucky to have. Thanks to her, I don’t think Evie feels like she’s missing out. Only I feel a hole in my heart for what might have been.

One summer Saturday, I arrive at Don’s house for a visit and ask how my mom has been that day.

“When I picked her up, she was crying about her mom,” he tells me. I haven’t seen her cry since we adjusted her meds, so this really strikes me. Considering all the things my mom has lost—memories, motor skills—it feels particularly cruel it’s the feeling of missing that remains. It has endured for half her life: 33 years with her mom, 33 years without. But perhaps this is proof love lives outside the brain.

My mom at 20, celebrating her mother’s 57th birthday on April 11, 1979.

Much earlier in my mom’s illness, I looked through her will and found it was nearly complete, save for a blank worksheet meant to detail what she wanted done with her remains. I was nervous to upset her, but needed to ask before she could no longer understand or respond to the questions: What kind of funeral do you want? Where should we put your ashes?

Her answers are scrawled in the Notes app on my phone: “Mass at Saint Teresa of Calcutta Catholic Church. Ashes in cemetery with her parents.”

At the time, I was sad to learn she wanted her ashes laid to rest in California. I wished she wanted at least some of them closer to home so I could visit more often and feel her around me. But upon further thought, I realized home is somewhere else for her, and I don’t believe one’s earthly form means much at all once the spirit departs. If reuniting my mom’s remains with those of her parents helps at all to cure her missing, I’m happy to do it.

Another Saturday in July, it’s too warm to take our usual midday trip to Cottage Lake Park so my mom can visit the ducks and watch kids play on the playground. I tell Don I’ll take her for a little spin around the block once we arrive back at the memory care facility instead.

It’s late afternoon then and the sun is filtering gently through the trees, a cool breeze tempering the day’s brutal heat. On a whim, I push my mom’s wheelchair over to a little garden next to the parking lot and sit beside her on a bench. Now feels like as good a time as any to say the things I’ve been meaning to say to her while she can still potentially understand them.

I take her hand and tell her she’s been such a good mom and taught me so much about how to be a strong woman.

She continues staring into the distance.

I tell her I hate what’s happening to her and wish so badly I could change it all.

She remains stone-faced.

I tell her we’re all going to be okay—Don, Brandon, Evie, Aaron, and me—but we’ll always miss her so much. Just like how she misses her mother, I add.

At this, she stirs and reacts for the first time. “I think she might be gone,” she says.

I don’t want to upset my mom, but I feel too cracked open to lie to her. Instead, I squeeze her hand in what I hope is a comforting gesture.

“Yeah,” I say quietly. “I think she might be gone. But I’m here with you.”

She does not respond. We sit in silence for a few minutes, still holding hands, me trying and failing to hold back tears. Then I wheel her into the building for dinner.

It’s hard to explain the chasm that exists between us even when—especially when—I’m with my mom. We are on different planes of time and space. I may not even exist in her current reality, whereas I could not exist without her in mine.

But we have some things in common now. We both feel a little lost and scared. We both have the primal urge to go to our mothers for comfort. And both of them are inaccessible to us, just out of reach on the next plane.

I can always go to the well of love she so generously filled up for me. Still, not a day goes by that I don’t miss my mother.

Alzheimer's disease, dementia, mom

Destabilized

by devonpass4 Comments on 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.

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.

mom

A Julia Child Christmas

by devonpassLeave a Comment on A Julia Child Christmas

The holidays are a tricky time for many people, for so many reasons. I learned from last year’s heartbreak to go into this year’s celebrations with zero expectations. The result: a happy Christmas with my mom, who smiled all evening.

Last year, I gave her a fleece blanket printed with family photos, and she had no reaction at all when I helped her open it. This year, I put my energy into making something she could still enjoy: Julia Child’s bœuf bourguignon, a dish we made together for Christmas dinner in 2010. It’s a labor-intensive endeavor with incredible results.

At 23, I needed my mom’s guidance to make it. It felt good to work my way through the steps we once followed together and realize, at 36, I am more than capable of doing it on my own. Her gift to me then, my gift to her now: a dish filled with love and endless patience, made richer over time.

The night ended in tears all around because we knew this might have been her last Christmas. I hope it was. I would have been ashamed to say that once, but I say it with my full chest now. Nothing good awaits. I would love for my memories of her enjoying this Christmas to be the ones that endure.

I go through periods where I’m unable to read about others’ experiences with dementia because I don’t have the capacity to absorb anyone else’s pain. Other times, like now, I feel nourished by seeing my darkest feelings reflected on the page. “Dementia sucks you in with a terrible centrifugal force,” Suzanne Finnamore writes in her new book My Disappearing Mother. “It puts you in the position of wishing your own mother dead.” On top of the emotional agony of watching a parent wither away over many years, the shame around having feelings like this is unbearable. I vow to leave it behind in 2023.

I love my mom and I wish for her suffering to end. I am a good daughter and I will be relieved when she dies. 

Dementia is an endurance sport, and right now feels like mile 20 of a marathon. The toughest bits stretch far ahead; the finish line keeps moving, and a different pain awaits there. I will do whatever it takes to continue on, side by side with my mom. 

At 23, I needed her guidance. At 36, I am more than capable. My gift to her now: a journey filled with love and endless patience.

mom

Past Lives

by devonpassLeave a Comment on Past Lives

Four years of grieving what was and accepting what is.

When I’m with Janet, I wonder where my mom is. She might wonder the same about her daughter. 

When I dropped her off on Saturday after a visit at her former home, I hugged her and told her I loved her. She politely replied, “Thank you for having me over today,” like she would to a neighbor she doesn’t know very well who randomly invited her in for tea. 

I hope her daughter still exists in her mind as someone younger and more carefree, with fewer grey hairs and fewer hurts. I wish I still existed that way, too, but I accept what is.

If she doesn’t recognize me as her daughter and I don’t recognize her as my mom, we are virtually strangers. We are linked through blood and birth, but as if in a past life.

Aaron and I watched the film Past Lives on Saturday night (potential spoilers ahead). In it, Korean childhood sweethearts Nora and Hae Sung are separated by a move and reconnect intermittently throughout their lives. They know each other so well from their younger years, yet are strangers as adults. They seem destined to be together, but as they grew up, their paths diverged in such a way that makes it nearly impossible.

The concept of in-yun is woven throughout the film. Nora explains: “It’s an in-yun if two strangers even walk past each other in the street and their clothes accidentally brush, because it means there must have been something between them in their past lives. If two people get married, they say it’s because there have been 8,000 layers of in-yun over 8,000 lifetimes.”

At one point, Hae Sung wonders if they are currently experiencing a past life, and what will their relationship be in the next?

The film is gorgeous and heartbreaking; the perfect example of holding many opposing truths at once, and of grieving what was and accepting what is.

I don’t know if in-yun applies to mothers and daughters, but I do know my mom and I have left our marks on each other. I hope it’s enough. 

It comforts me to think that, while her body remains here on Earth, my mom’s spirit—the very essence of her that I’ve watched gradually fade away over the past four years—may already be somewhere between this life and the next, waiting to know me again.

mom

The Next Chapter

by devonpass4 Comments on The Next Chapter

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?

mom

Hot Tub Time Machine

by devonpass2 Comments on Hot Tub Time Machine

“We still need things from our parents—some understanding, some piece of love, whatever it is. There never comes a time when you … don’t sort of hope, even in their decline, that they can still be there for you.”

Anderson Cooper on anticipatory grief

This is a story about getting drunk in a hot tub, but it’s not quite as exciting as the circumstances imply. For that, please proceed directly to a very different corner of the internet.

It was a Thursday, two days before my thirty-fifth birthday. I had a shitty workday and, by quitting time, needed to soak in our hot tub with a big glass of sparkling rosé in hand.

We hung out in there for a while as a family, and I had such a lovely buzz going that I fetched another glass and returned to the hot tub as Aaron and Evie got out. I sipped and scrolled on my phone as both forms of bubbles melted away my tension. I must have exhausted the content on my social media feeds because I ultimately found myself in my voicemail archive, staring at dozens of entries indicating messages from my mom.

Since her early onset Alzheimer’s diagnosis in 2019, my mom has slowly slipped away. It happened so gradually that every time I visited, her general reticence and increasingly jumbled words seemed normal. But I remembered, staring at those voicemails, that she was once upbeat and articulate. She once knew how to call me, and did so often to confirm plans, thank us for coming by the house, or check on us during inclement weather. And she always called on May 21 to sing happy birthday to me.

Two habits that drive Aaron crazy—my tendency to keep my phone on silent and never answer calls, and my total disinterest in deleting anything—proved valuable in that moment. My voicemail archive held pieces of mom I thought were lost forever.

I began listening to her messages and transported back in time. It was 2018, and my mom was wondering what time we were meeting at the mall for our Mother’s Day shopping trip. It was 2019, and she needed to know my Social Security number to update her beneficiary information for a new insurance plan. It was 2020, and had I heard about this virus going around?

I closed my eyes and listened to the mom I used to know, the mom who no longer existed—at least in any way she could communicate to me. I let my now intense buzz convince me that I had just missed those calls, that she was still the same. I could call her back right now and say, yes, I will stop by the store on my way over and pick up a bag of ice; no, don’t worry about paying me back.

And then I listened to the birthday messages. She and my stepdad sang an exaggerated version of happy birthday, with my mom replacing “dear Devon” with “dear sweet Devie Doodle Bug.”

It was then I started crying, realizing I’d never get a birthday phone call or voicemail from her again.

This is a small loss in the grand scheme of everything Alzheimer’s has stolen from us. But that evening—thanks in part to potent rosé—it unleashed a tsunami of grief.

In an effort to Be Okay and enjoy my life, I rarely tap into that deepest level of hurt. I’ll shed a few tears every now and then, particularly during therapy, but mostly I keep things tight. With my defenses down, I gasped for air as sobs overtook me.

I found myself wrapped in a towel, crumpled on my bedroom floor, raging over the phone to my stepdad about how fucked up this whole situation is. Why her? Why us? He understood and talked me down from the height of my hysteria.

Eventually I pulled myself together enough to get dressed and take Wally for his nightly walk. As we set out around the neighborhood, I called my mom on the off-chance she’d answer the phone. I just wanted to hear her voice. I just wanted to know she was still here.

She didn’t answer my call. Normally I would leave it at that, but something compelled me to try again.

“Hi, Mom?” I said, my voice cracking. “How are you?”

“What’s wrong?” she asked, concerned. I couldn’t believe she’d recognized the heartbreak in my voice.

“I just miss you,” I replied. “You… live so far away.” Our physical distance wasn’t the problem, but I didn’t want to mention the real issue.

“I know,” she said. “I miss you, too.”

I started crying again, struck by her clarity. It was 8:30pm and she was probably exhausted, yet she was able to express herself in a way I hadn’t witnessed in a long time.

Our phone conversations—on the rare occasions she answers—typically last about five minutes. I tell her everything that’s happened in the few days since I saw her last, then run out of things to say. She doesn’t contribute much, and there’s only so much silence I can bear to let hang between us.

On this night, we talked—like, a real back-and-forth conversation that mostly made sense—for 19 minutes.

We talked about my birthday coming up in a few days, and she asked how old I was turning. “Thirty-five,” I said, and she laughed: “How can that be? I still feel about forty!”

We talked about memories from when she really was forty and I was eleven, which were much more vivid for her than anything that happened in the past week. We talked about how she was worried that she hadn’t heard from Don lately, even though I know he calls her multiple times a day, every day. And we talked about how we missed each other, and how she was sad to hear me sounding sad. We said we loved each other, and that we’d talk again soon.

After we hung up, I took huge, deep breaths and tried to memorize everything about what had just happened. I had taken a photo of a stunning sunset during our chat. I took a screenshot of the call log. I wanted tangible evidence that I had gotten my mom back, if only for 19 minutes.

It struck me that I hadn’t been mothered in a long time. It’s not something I really appreciated when I did experience it, and it’s not something I realized I’d missed until that moment. My mom and I always had a good relationship—except for a few teenage years, when my hormones may as well have been napalm—but it’s not like I constantly turned to her with my boy troubles or friend drama. I didn’t seek from her the words of parental wisdom you hear at the end of every Full House episode.

But she was always there for me for the big things, like when my BAC was higher than my GPA the first quarter of college and I was hospitalized with pneumonia from wearing only skimpy going-out tops to freezing frat parties. Or when I wanted to go on the pill and asked her to take me to the doctor since I was still on her health insurance, and she did so without judgment. Or when I revealed I was thousands of dollars in credit-card debt after graduation, and she helped me make a plan to pay it all off instead of admonishing me for my stupidity. (She was relieved since she thought my big secret was that I was pregnant—which I never was, thanks to the pill.)

I still try to rely mostly on myself (and my therapist) to manage life’s everyday struggles. I like to keep my sadness contained, not wanting to infect others. Keep things tight, right? But it turns out I do still need my mom.

…

I went on to have a lovely birthday weekend, celebrating in person with friends and all different parts of my family, including my mom. I didn’t get a happy-birthday voicemail, but I did get an in-person rendition, which is definitely better. Someday that will be gone, too.

As a mother, I now understand my birthday means even more to my mom than it does to me. It’s my birthday, but it’s her Birth Day. I think about how April 29, 2016, is the most special day of my life, and figure May 21, 1987, must be right up there for my mom. I’m her second kid, but she made it no secret she wanted a girl and would keep trying until she got one. I may have come bursting out before she could get a desperately wanted epidural, but I think I made up for it with the fact that she’d never have to go through that again.

…

I try to be grateful for what I have left of my mom and not focus on what we’ll lose next, or guess at when she’ll leave us for good. I’m conflicted between wanting to keep her earthside forever and wanting her to be released from her pain.

She endured my excruciating arrival; I’ll endure her excruciating departure. Love is at the center of it all.

I don’t know what happens to us after we die. I’m humbled enough by the magnitude and mysteries of the universe to admit that. I respect anyone who possesses the faith to be certain that heaven or hell or some other manner of afterlife awaits us. There is safety in certainty. I prefer to marvel at all the possibilities.

My mom has always said, half jokingly, that she’ll haunt me when she’s gone. If she has any choice in the matter, I’m sure she will. But if there is some grand plan for our existence, I don’t believe hanging around my house and flickering the lights is her destiny. I like to think she’ll move on to something better.

I hope her energy, unleashed from the plaques and tangles that choked it in this lifetime, finds freedom as something wonderful in the next. Maybe she’ll be a bird or a butterfly. Maybe the universe has a sense of humor and she’ll be an elephant. Or maybe her energy will disperse, becoming one with the elements. Maybe it will coalesce, on occasion, when it feels some force pulling it back together and toward something it once knew.

When my mom is gone, on my birthday, I’ll listen for her. Maybe I’ll let my skin go wrinkly in the hot tub and remember that night it was a time machine. Maybe a spring breeze will tickle my neighbor’s wind chime. Maybe I’ll close my eyes and believe it’s my mom calling to sing to me.