I lose the mom I grew up with to Alzheimer’s every day. This loss began roughly 12 years ago for me and is with me every day. Others who love her live with similar loss—we each lose her in different ways and stages.
You may see her smiling face in photos and think that the woman you knew is with me. You are wrong.
The woman with me today is someone entirely new. She’s new each day now. This woman speaks very little. She doesn’t follow conversation. She no longer sleeps poorly: she sleeps much of the time. She hasn’t known my name, or her own last name, for more than a year now. She calls dad, lovingly, “The guy.”
When Daniel and I walk in, mom usually recognizes Eva the dog first, then looks up, remembering that she loves us. Or, she at least loves us for bringing a dog to play with her. She smilingly pulls the dog and I down the hall to her dresser to show us the new bracelet or socks or sweater that the guy bought her yesterday. “He’s so good,” she often says. The love and strength that it must take to awaken with a stranger in your bed each morning? Yeah, I can’t even fathom that one yet. Its a love beyond all reason. I revere both parents more as a result.
Spoken and written language gone, mom can’t tell her stories in traditional ways, so she gets creative: using props, gestures, silence, telepathy, empathy, almost-right words, and half words. Which is cool. I love her stories now: each one is a collective haiku crafted of magic. Dad’s stories have lengthened, artfully weaving past and present together: a shawl around our shoulders.
Some days, while mom and I are walking down the grocery aisle she says to me “Hey! I really like you.” And I flush, flattered, knowing that she likes me as a stranger. “That must hurt,” people assume and, too often, say. But most days it doesn’t hurt. I am with a woman who likes me for me. Because of who I am in the moment. She likes me without expectations, family ties, history, or baggage of any kind. And maybe sometimes, because I just put lemon cake—a favorite of hers—in the cart. This sweet new woman likes me as a total stranger. I like her too.
Loss has shown me how “I like you” can be more powerful than I love you.
Loss demonstrates that the coolest stuff is always happening around the words. Difficult to see at a distance, while distracted, or worrying. Loss stills me into better noticing.
This year, I notice that staying with loss has immunized me considerably against the promotion of the always-winning, always-first (and ultimately violence-inducing) cultural myth and its associated orange-haired icon that flashes out at me from all the screens. Those who scream that always winning makes us strong and powerful ultimately haven’t got a clue. Been there. So very glad to be done with that.
If you want to feel strength, gently stay with your loss or a least visit on a regular basis. Listen. Hold her hand. Slow down with her. Be her friend. Walk into and through anger with her: into and through hate. Weep. Breathe. Go for a walk. Accept help from nature and cool people. Eat healthy foods. And put an occasional lemon cake in the cart to mend your hearts. That, friends, is what deep winning feels like. It honors loss. Deep winning eases minds and lifts hearts in all directions around it. Deep winning is hearing “Hey, I really like you.” from a total stranger who you—lucky you—already love like family.
For the past three months, I’ve been an almost daily care partner for our mom, who is moving into late-stage Alzheimer’s disease. Our family has been living with the disease for a decade now. Dad has been caregiving for mom, mostly on his own, for more than a decade (because he saw the disease long before the rest of us did). I am utterly amazed by what he has done. For the past seven weeks, I was with them 24×7 as we travelled across the country and then prepared and sold their home, boat, and trailers. I finally—fully—saw what a toll this is now taking on my dad. I wish that I’d spent this intensive time with them sooner, because there are things I wish I could have helped him do for himself years ago. That said, how about I drop the guilt and just share the beautiful things I’ve learned this month?
1. Scheduling a weekly meeting or call with others like you
Care partners need a place to vent. We need a place where people can completely relate to what we’re going through with insider knowledge, a willingness to listen, and without judgement. We need a safe place to weep. A place to tell our stories of the adventures of Alzheimer’s: many of which are remarkable and amazing and some of which hurt far beyond what we think we can handle. We need this. Period. I don’t care what you have to do. Make this happen.
2. Saying “Yes!” when loved ones freely offer gifts
I learned to do this only this year. Now I see why it took me so long. To this day, as a caregiver, my dad’s go-to response to offers of gifts and help is to say either “You didn’t have to do that.” or “You shouldn’t have done that.” or “No, I’ll do that.” or, my least favorite, “You can’t do that.” (The hell I can’t buddy!) This is not the voice of the man who raised us: the man who accepted our gifts and allowed us to help do everything as kids (as the imperfectly stained fence can still attest). I empathize with wanting things done a certain way: especially in the face of a chaos-generating disease like Alzheimer’s and when your priority is protecting a family member who needs significant quiet, order, and a reliable schedule to reduce the load on their always over-worked brain. And still, from my perspective, learning to say “Yes!” to others, when gifts are offered freely and in love, is among the deepest gifts that attend this disease. Mom is the QUEEN of this. She’s a rock star. To survive as a long-term caregiver, and to thrive as a family, caregivers and care partners also have to become really good at receiving gifts and help.
3. Letting go of people unable to give you the benefit of the doubt right now
The effort required by Alzheimer’s caregivers (especially those who struggle with receiving help) is so intense that I compare it to being caught in the gravitational pull of a black hole. There is no getting away. No down time. All your energy must be directed inward to yourself, immediate-other care partners, and the person with Alzheimer’s. And this can go on for years. This means that you become a very different friend, family member, neighbor, citizen, employee, manager, worker, playmate, life partner, spouse, sibling, gardener, and human being than you used to be.
Your ability to people please, and even to work out small differences, outside your immediate small circle all but vanishes. Communication to the outside world, for example, becomes difficult and often impossible. This can hurt people around you who consider themselves part of your inner circle but who, for a while, must—for your sake—be pushed outside that circle. Some people will turn on you for doing this. Dislike you. Even hate you. They will ascribe the changes in you to all sorts of interesting things—from selfishness to stubbornness to flawed character to greed to arrogance to indifference to not really listening to them. It’s funny. People with ample free time can do a great job at fooling themselves into believing that they can judge, fix, and change other people. We can’t. We cannot suffer these same delusions: we simply don’t have the time and spare energy. Instead, we must let people go. In our case, we’ve let go of a whole lot of people across the last decade. It hurts, I’ve learned, only as long as you fight it. Only as long as you beat yourself up about being unable to fix things that you cannot change. Those who matter to your future will accept you as you are even now, they will either forgive you or see that you don’t need forgiveness, and—I’m learning now—they will find their way back to you eventually. Those who fiercely hang on to you do come back. Those who fiercely hang on to judging, blaming, or trying to change you are most likely gone from your life for good. This hurts. And yet this, too, is a blessing.
4. Recognizing that your pain is their pain
Many people—our mom included—experience a significant increase in empathy living with Alzheimer’s disease year after year. For my mom, at this point, living with the disease doesn’t appear to be the hard part. She accepts all the things she can no longer do. Including, at this point, speaking no more than one or two words at a time. She graciously accepts gifts. Gratefully allows us to help. Loves life most days. The same has become true for me, most days. Right now the hard part for her—and for me and my sister Jen—is watching my dad try to do everything himself, rush, exhaust himself, get frustrated, get angry, and beat himself up emotionally and physically about his own mistakes and completely normal exhaustion-generated human lapses in memory and judgement. When dad is happy, mom is happy. When he hurts, she hurts. When I am happy, Jen is happy. When I hurt, she hurts. Prioritizing ourselves, our health, and our well-being as caregivers and care partners IS how we best serve our loved ones. Neglecting ourselves and our needs hurts not just us: it hurts everyone connected to us.
5. Dropping guilt
Guilt is you carrying a kayak across the desert. You may have needed it in the past for something, true. And you don’t need it anymore. Your family doesn’t need it. Your community doesn’t need it. Certainly the person with Alzheimer’s doesn’t need it. Your guilt is not needed here, care partner. It is unnecessary weight. Let it go. And if you can’t, connect with places, people, and things who help…
6. Opening to nature
What we need in our lives now is more time with people, things, and places that allow us to just be who we are right now, feeling what we feel, as messy as we really are, and that/who show up without a deep need for reciprocity, fairness, correctness, and perfection. We humans may not be great at doing this, but we do at least instinctively turn to nature for help. Here is a partial list of things that are better at allowing us to just be ourselves than most humans are. Increase your contact with one or more of the following things: trees, flowers, dogs, cats, deer, fish, grass, vegetables, fruits, sky, clouds, sunshine, rain, lakes, rivers, oceans, forests, fields, moss, tree stumps, sunsets, sunrises, beaches, rocks, driftwood, soil, seashells, fog, mist, wind, leaves, meadows, birds, music, poetry, art, babies, and puddles. Also, increase your time in spaces that make you feel welcome (from an inviting sunbeam to a soft chair to a neighbor’s front porch). Spend more time in places that make you feel grounded, relaxed, needed, and home (from the presence of a dear friend or sibling to a street or park or forest that you love).
7. Opening to new community
My folks have done a great job of this the last few years, and I think it saved us all a great deal of pain. Open to becoming friends with new people. Different neighbors. Other caregivers who appear to have literally nothing else in common with you beyond caregiving. Talk to random people in stores and restaurants. To friends of friends online (or even strangers if you’re up for it). Delivery people. People in doctors’ offices. People of different ages and energy levels and cultures and backgrounds and previously imagined societal levels. Find authors and characters you’ve never encountered before. People and animals outside your comfort zone. It is these people—this new community—that is integral in helping you survive and thrive as a care partner and as a family. You need them. They save you. And unlike the old you—trapped by old beliefs and ways of thinking—this time you’ll be more fully aware of the fact that these strangers, these new-to-you friends, are saving your life. Co-creating your life. You’ll be more fully grateful for it this time. And, remarkably, in your own gratitude and openness to new community, you will save them in return. Without even trying…
8. Experiencing everyone as a leader
When she’s well rested and feeling supported, our mom makes friends with everyone and everything she meets now. Without even trying. Most days, she couldn’t care less about your size or shape or past or abilities or flaws or political affiliation or gender or age or orientation or beliefs or IQ or planet of origin. In her presence, you are beautiful and perfect as is. If you slow down, and join her in being fully present, it’s easy to see the same in her.
Last week, for example, in the middle of a large family gathering, she left the room for a while and then walked back into the middle of the kitchen wearing only her swimsuit and shoes. She stood smiling at us, waiting patiently, until we offered to join her in the lake. And then we did. And then it was wonderful.
Does it really matter that she can no longer say “I’d like to go swimming now. Will you join me?” Does it really matter that she no longer knows what state we’re in? Or our names? Or her own last name? Mom has become a better leader every year of her life with Alzheimer’s, because she sees everyone around her as a leader too. She is such an amazing gift. In her presence now, we are all leaders. We are all gifts. And we are all helping.
Sympathy is the standard response I receive when I say that our mom has Alzheimer’s disease. If only the world knew how incredibly lucky we really are.
Mom’s been living with Alzheimer’s disease for somewhere between 11 and 14 years now, depending on who you ask. Last week, our full-time care partner dad got sick. Really sick. Fever, intense pain, not sleeping, difficulty moving, back-to-the-doctor-three-times-in-five-days sick. Nothing drives home the 24×7 work it is to be an Alzheimer’s care partner like the care partner himself becoming too ill to do anything. Attention full-time care partners! If you’re struggling with explaining how difficult round-the-clock caregiving is to family and friends, I highly recommend this: get stay-in-bed sick for a couple of weeks (or, take a two-week vacation. Either way, it helps us all out, believe me.)
This week highlighted all of the things Daniel and I were ready to help with and what we weren’t ready for. In a drop-everything-and-move instant, we took over errand running, grocery shopping, and meal planning and preparation. We took over doing laundry. We helped with activities, distractions, and emotional support for mom, whose deeper-than-ever empathy causes her to suffer when dad suffers, and we bumped up our emotional support for dad as well, who struggles with guilt about needing help in addition to being so sick and worrying about mom. We took over straightening up the house and taking the garbage out to the curb.
Fortunately, they recently moved into a neighborhood where weekly housecleaning is part of the rent, so that extra support was lovely. Perfect timing! Mom stepped up too: she cleared the table, dried the dishes, threw toys for the dog and entertained dad, and she got herself ready for bed and ready for the day (things I know he often helps her with). The days he had a fever she checked his forehead every 30 to 60 minutes, all day. Her simple acts of touch and obvious empathy doing more for him, I suspect, than what we did.
What we weren’t ready for
But here’s what we weren’t ready for:
- Detailed medicine and vitamin routines. In what combinations and at what times of day do mom and dad take their medications and vitamins? Thanks to dad, we have a list of all the vitamins and medicines they take, but the list didn’t say… Which ones are taken when? Mom takes pills three times a day and no longer has any idea what they’re called or what they’re for. Also, where do they store the backup pills to fill the 7-day reminder packs? Where do they get them if they run out? Without dad’s help on this, we’d be screwed.
- Showering. Mom hasn’t showered by herself in several years. Dad does this with her. Without him to help, we have no idea what to do. How often does she shower? Is this something she’d want my help with or would she actually prefer professional help? They used to shower just once or twice a week, but we learned he’s been showering with her almost every day this past year, because…
- Toileting. Mom needs a little help with this, now, too. She doesn’t have accidents, exactly, yet. However, she doesn’t know when to flush anymore. She flushes first. And she puts all wastepaper into the wastebasket instead of flushing it—no matter what. Sometimes poo too. And her wiping skills aren’t what they used to be. Mom and dad have routines to help her remember. Routines we didn’t know. And dad has extra cleaning routines in the bathroom and with the laundry now.
- Alzheimer’s support routines. To make life easier for mom, dad does a thousand little things almost without thinking about it. For example, he has a complicated matrix of night lights that are on or off depending on time of day and night. He knows certain TV channels that she enjoys or that don’t disturb her. He has certain things he says, and ways of saying them, to get her to go walking with him or to go out when she doesn’t want to go out but they have to. He keeps silverware and certain condiments on the table, so she doesn’t have to search for them and he doesn’t have to make multiple trips back to the kitchen for them. He keeps certain foods and potholders and even pans on the countertop too, so they’re easily accessed. He keeps other things hidden. Imagine if you had no memory of eating and little ability to feel the difference between hungry and full: it’d be very easy to overeat if lots of junk food was on the counter.
- Major plans changing. Mom, dad, and I were supposed to be flying back to South Dakota this Friday so that we can pack up their home there and prepare it for sale. Today it looks like we’ll need to bump out the trip by at least a week. Travelling with mom is hard when dad is well. With dad sick, I don’t think we can do it. We all have to be flexible. My work schedule (brand new employer) and Daniel’s work have to be flexible. Jen and Cam (whose house we are staying at for a few days on route) have to be flexible. Derryl and Jodi (whose house we are staying at in South Dakota on route and who are driving us several hours to their home) have to be flexible. Our doctors have to be flexible. Our family and friends and neighbors have to be flexible. More and more people have to be able to improvise with us on the fly.
- A doctor for dad and arrangements for getting there. Dad being dad, mom had an Alzheimer’s expert doctor set up for her 6 months before they actually moved here. She saw him for the first time back when they visited at Thanksgiving. Dad had their housing and banking and even state residency figured out ahead of time too. But he hadn’t set up a doctor for himself. In hindsight, when he set up a doctor for mom, we should have helped/insisted that he get one for himself. When he got rapidly sick last Wednesday, he ended up scrambling to find an urgent care clinic in a city that’s new to him and then driving himself (and mom because she can’t be alone) to urgent care although he could barely walk before he called us to tell us he was sick. He called us from the waiting room. Arrgh.
- Accessing money for daily living needs. Mom no longer even has a credit card, which is great because money is meaningless to her. But, when dad becomes can’t-get-out-of-bed sick, how do we pay for their daily food and life supplies? Luckily, dad had enough cash in his wallet to cover this week. And we have a little extra in our account for emergencies too. But I think it’s time to talk to him about getting one of us on their bank account with them. We need to be able to get them what they need, when they need it, at a moment’s notice. If he’d had to go into the hospital this week, or had been unable to give us his debit card info, we’d have been stuck. Thank God we are a family that trusts each other. I can’t imagine what people who don’t trust their relatives would even do.
- Dad being utterly overwhelmed when sick. And more honest about how he feels. Dad’s slightly better today, but he still has at least one more week of rest, antibiotics, and pain medication before he’s back to being well. He’s so exhausted, and in daily pain, that he’s now talking about moving mom into memory care sooner rather than later. Ahead of even hiring a professional to come in and help him. This is hard to hear. But it also feels good that dad is sharing his pain, and what he’s feeling, and how overwhelmed he is. He’s aware that she feels whatever he feels—and is concerned about the impacts of his stress and illnesses on her. Also, what he thinks he can do, and handle, changes day to day right now. It feels like hour-by-hour emotional juggling. I’m so glad that we have people to talk to, vent to. And my writing (aka, Lori therapy) and Daniel’s photography (Daniel therapy). And people around us willing to be flexible. I had to change my own doctor’s appointment 3 times this week. Thanks Polyclinic schedulers and doctors! Even though it sucks in the moment, I’m actually beginning to enjoy hour-by-hour juggling. When I’ve had enough sleep, it makes me feel like a bad ass who can handle anything.
- Extended time away from our own home. This week we became experts at 5-minute bag packing/living away from our own home/grabbing what matters/leaving everything else behind. We sucked at it the first two times, but by time #3, we were pros. We need so little to be happy and relatively little to get our work done. If it wasn’t for the cats and our own wish for slightly more personal space, we could move in with mom and dad indefinitely given 20 minutes notice today.
- Being flexible enough to do this long term—it takes a village. Mom and dad moved closer to us earlier this year, which has been fantastic. We’re able to see them weekly now, play cards, hang out, and help each other out as needed. But we still live 45 minutes apart, because they chose a neighborhood that has assisted living and memory care (for later on) in addition to the cottages they moved in to. This week, dad needed full-time care and a driver to multiple doctor visits on top of mom’s full-time care needs. One or both of us had to spend days and nights at their house. Working together, Daniel and I could just pull off providing this level of support for one week, while still meeting our work obligations and popping home to feed the cats and bring the mail in at our place. I had to cancel several work and doctor’s appointments to make it happen, and Daniel cancelled a bunch of plans as well, but it’s do-able for a couple of weeks. And it pulled forth the question: What would we do if they needed this level of support for a longer period of time? We have no other family close enough to help. It’s clear that we all need to get closer to the people in their new neighborhood ASAP. And become more familiar with the help available there through the assisted living center. It’s also clear that mom’s definitely at a point where she needs a professional care partner we all trust 100% to help with the most intimate of life’s details. Someone who can be there the moments we can’t be: including backing us up if dad gets ill again. Or, it might be time for her move into memory care. It feels early to us, but we intend to back dad on this decision, especially now that we’ve lived in his shoes. Our social butterfly mom will do fine there, too, I strongly suspect. Babies, dogs, cats, and other people with memory issues are her favorite things.
The down side, the up side, and the upside down side
Being an Alzheimer’s care partner is like walking a different circus high-wire act daily, blindfolded, without training, and without a net. It’s all consuming and impossible to describe with words because there’s just not enough time in the day for all the words you’d need. On the up side, your empathy for others expands exponentially all the moments you’re not pulling your hair out in frustration.
This disease shines a light on the weaknesses of our society, our communities, our approaches to health care, our families, and our individual selves. This is a painful thing and a great thing. Because with the light on, we can more fully see what we need and start to imagine something better.
This week, Daniel and I got more insight into what it’s like to be a full-time Alzheimer’s care partner. One week both inspired and exhausted us. And dad’s been doing this mostly alone for more than a decade. He is amazing. He does a thousand little things for mom each day. Things we healthy folks literally can’t even imagine. It’s like being a 75-year-old single parent of a fully enlightened Buddhist toddler on top of being a full-time spouse.
We also gained greater insight into what it’s like to live with Alzheimer’s disease. Mom is amazing. She may not have much memory or speaking ability left, but she is all empathy, all the time. On her own, she doesn’t judge others, period. She’s a joy to be around. She’s happy with what is. It’s only when her care partners are hurting or angry that she feels these things too. In her presence, I become a total bad ass. Because this disease no longer scares me. Or, more specifically, I see no point to being scared in her presence—why transfer my fear to a fearless being who is utterly content with the present moment? From the outside, it may appear that she, or we, are suffering. The opposite is true. Her presence is liberating. It’s totally freeing to live loved for exactly who you are in the moment. To move in the world and live entirely free of negative judgment…
When I walk around town now, I feel like a creature who just alighted on a beautiful new planet for the first time. I look around and wonder about the quiet, hidden bad ass life that I know each human being is living. I gaze into the eyes of complete strangers, feeling their stories, and tears well up in my eyes. Because life, and joy, and disease, and pain, and even death are all amazing. I’m no longer ashamed that life’s pure beauty makes me weep. If anything, these days, I’m more inclined to be curious about why everyone else isn’t weeping right now, too.
My mom Linda was diagnosed with Alzheimer’s disease by a doctor in 2007. She was just 60 years old. Mom, dad Jim, sister Jen, and I all knew that something was going seriously wrong with Mom for several years before that diagnosis. Memory troubles showed up. Anxiety and depression showed up. All new to her. More significant personality changes, such as not wanting to talk on the phone with us anymore, not wanting to visit Jen and me anymore, not wanting to do many of her favorite things, and avoiding spending time with other family members, friends, and large groups of any kind. She began spinning in worry about simple things, such as spending hours worrying that she would forget to feed the dog at 4 p.m. In those early years, worry spinning began causing her to repeat herself: such as asking me 15 times, in 30 minutes, to make sure she didn’t forget to take a bottle of water into the theater with her.
The more we read about the disease, the more we suspected Mom had Alzheimer’s. Even so, it took us years to finally get her to the doctor for that official diagnosis. She was remarkably sly at avoiding that doctor visit, including cancelling appointments behind Dad’s back: another completely-not-like-her thing to do.
Back then, I was terrified and felt utterly alone. I think we all did. And why wouldn’t we? In my country almost nobody is in a rush to diagnosis this disease: not the people who have the disease, not the people who love them, and not even many of our doctors. As a country, this disease terrifies us.
Fast forward to the fall of 2015.
We are an entirely different being today: a collective being. Reflective and thoughtful. Calm within storms some days. Creator of storms other days. Able to drop worry, stress, fear, ego, and even people, if need be, in the blink of an eye. We’re becoming quite the bad ass together. More fluid and funny too. I’m a creator now: poet and artist in addition to writer and editor. My sister recently became a mom. We even speak a wordless new language now. Speak collectively out of habit. From my perspective today, the difficulties we experienced before are mostly symptoms of trying to tackle change and chaos, and trying to fix unfixable problems, as lone individuals. The result of standing in a river alone and trying to make what is right now back into what used to be. How impossible and exhausting that was.
Some people receive long, healthy individual lives to become something more than they once were. Others, like us, receive and accept diseases like this: diseases that require us to become something new, something different, and something more than individual selves each new day. This disease surfaces our collective selves. Our dragon selves. Our river selves.
So yes, as a dragon/river/human/community hybrid being, this disease doesn’t terrify me now. Not anymore. Even though I myself may end up with it as soon as 10 years from now. Thank you Alzheimer’s.
In August I was sitting outside a coffee shop, in the warm sun, having lunch with a friend who is also an Alzheimer’s care partner. In addition to talking about our marriages, food, the wild world of indie authoring and self-publishing, our mid-life aspirations, and our families, he brought up the subject of euthanasia. We talked about when and if our loved ones might make that choice and when and if we, ourselves, would ever make that choice. I’ve never had this conversation with anyone: not my husband, my parents, or my sister. It was a deep, lovely, moving, weird, and fascinating conversation, woven into and around talk of annoying husband quirks, great new food spots in the area, and the stubborn expansiveness of mid-life waistlines.
As I drove home, I realized that I’d just had yet another amazing, life-affirming conversation that I wouldn’t have been strong enough to have before Alzheimer’s disease entered my life. With a close friend I may not have had without this disease. And, even more amazing, that I’d just spontaneously taken a 4-hour lunch break out of the middle of a glorious, sunny work day. The old Lori would never have done that. Never. Thank you Alzheimer’s.
Our new book, The Grace of Dragons: Receiving the Gifts of Dementia Care Partnering, is another gift of our experience. A gift born of finally learning to slow way down and make time for what matters most. It is a collection of essays and poems that I wrote between 2012 and 2015 — the years my panic about Mom’s disease had subsided enough for me to notice beauty again. Create beauty, anywhere and from within anything. The essays and poems have been grouped in the book by one of the gifts they share in common, out of chronological order, so dates, times, and world events may seem a bit jumbled and confused. That’s ok. In this world, the gifts are the focus. Everything else is background noise.
Thank you Alzheimer’s.
Nine years have passed since we first noticed significant changes in mom. Seven years since the official doctor’s diagnosis: Alzheimer’s disease. Back then we blindly accepted the experts’ truths, stories, and definitions as our own. We picked up the following traditional definition, for example, as if God herself had etched it into a large boulder and dropped it unceremoniously on our heads…
According to the Alzheimer’s Foundation (March 2015), Alzheimer’s disease is a progressive, degenerative disorder that attacks the brain’s nerve cells, or neurons, resulting in loss of memory, thinking and language skills, and behavioral changes. According to Bright Focus (March 2015), in people who have been diagnosed, its progress is commonly tracked in three stages:
- Mild (Stage 1). People with Alzheimer’s tend to first exhibit minor memory loss and mood swings and are slow to learn and react. They start to shy away from anything new and prefer the familiar. Patients can still perform basic tasks but may need assistance with more complicated activities. Speech and understanding become slower, and patients often lose their train of thought. They may get lost while traveling or forget to pay bills. As they become aware of this loss of control, they may become depressed, fearful, irritable, and restless.
- Moderate (Stage 2). Eventually, people with the illness begin to be disabled by it. Though the distant past may be recalled, recent events become difficult to remember. Advancing Alzheimer’s affects the ability to comprehend location, the day, and the time. Caregivers must give clear instructions and repeat them often. As Alzheimer’s patients’ minds continue to slip away, they may invent words and not recognize formerly familiar faces.
- Severe (Stage 3). During the final stage, patients become less and less responsive. Memory becomes so poor that no one is recognizable. Patients lose bowel and bladder control and eventually need constant care. They lose the ability to chew and swallow, and become vulnerable to pneumonia, infection, and other illnesses. Respiratory problems worsen, particularly when the patient becomes bedridden. This stage eventually leads to coma and death.
Wow. No wonder we were terrified at the beginning. Some major changes were happening in a beloved family member, we went to our culture’s healer’s for help, and this was the story we were handed: a victim’s story. A half story.
In this half story, mom became something less: a patient doomed to decline, frustration, pain, coma, and death. And everyone else became something less too: caregivers. People in non-stop give mode–no longer part of life’s dance of giving and receiving. In the case of Alzheimer’s Disease, being a caregiver means something worse. It’s akin to being a long-term helpless bystander: someone who gets to spend years busily dusting bookshelves on The Titanic.
Without the wholeness of context and experience–without the whole story–the natural response to having this horror of a half story thrust upon you by a healer is some combination of fear, dread, anger, denial, anxiety, and depression. It’s no wonder that people resist going to doctors to get this diagnosis. And it’s no wonder that doctors hesitate to share this diagnosis once they make it. Offering a half story to already terrified people isn’t healing.
Here in our family, we’re nine years in now. We’re not living somebody else’s story anymore. We’re living our own story. And while I’ll happily support other healers in our culture by doing Alzheimer’s walks and signing up for certain research trials and donating money for research, what I won’t do anymore is sit quietly by as if the half story is enough. We’re all so much more. And we all deserve better.
At 44, I feel like a kid, yet I’m a family elder now. I’m a family healer now, too, within my own family. If I used the traditional definitions, I’d say that mom entered the Moderate (Stage 2) phase of the disease about 18 months ago. But I don’t use half definitions anymore.
Being a family elder and healer involves deep listening and deep gratitude. Listening to my mom, my dad, my sister, and myself as individuals and as a whole. Watching what we do. How we do things. What we eat. Where we go. How we feel. How we change. How we help each other. Reflecting deeply on what is happening with us. I also watch and listen to their neighbors, closest family members, and friends and to my own closest others, too. Watching what they do. How they do things. Our impact on each other. Reflecting on what is happening with those around us as a whole too. I feel deep gratitude in the presence of all these people–even those my family has had to say goodbye-for-now to. Because we’re all part of the whole.
Instead of fighting a whole planet of doctors on this, which I don’t have time for, I think it’s simpler to say that today, from my perspective, my mom’s initial diagnosis was wrong. Or, perhaps that it was half right.
Mom doesn’t have just Alzheimer’s Disease.
Mom also has Linda’s Disease.
Linda’s Disease is a progressive, generative, advanced state of familying in which the closest family members begin spending a lot more time together as adults, staying in the present moment more often together, laughing more, sharing and letting go of fears together, experimenting with new ideas and activities and selves, shedding unnecessary stuff and pain-generating people and places without guilt, communicating far more than before and learning to intuitively, almost telepathically, communicate with and support one another and a growing circle of emotionally local others. By mid-stage, Linda’s Disease cracks open core family members’ imaginations and transforms them into powerful new selves including artists, advocates, activists, poets, parents, grandparents, dancers, care partners, play-event inventors, game creators, and group improvisation experts. The bravest family member slowly becomes a living guru/angel: helping the others shed their burdens and live more awake, aware, brave, and beautiful lives. Eventually, everyone in the core family and closely connected to them receives similar living-guru/angel gifts and shares them with others—across cultures—closely connected to themselves.
Linda’s Disease holds the potential to transform our entire planet for the better.
This is the other half of the story. The one that truly honors mom for who she is today: a woman who reminds us of the deep healing potential of putting on a fluffy robe, folding warm laundry, and laughing together.
Healers, I don’t have to tell you that sharing only half a story with people already terrified and struggling can do harm.
Families, I don’t have to tell you that living only half a story–somebody else’s story handed to you from a distance–can do harm too.
Today we are all being called to live and write our own stories: a story in which we’re characters in the tale and also authors, creators, of the tale. A tale in which we all get a voice. A tale that doesn’t stop half way through, stranding us as victims. A tale in which family members and elders and healers and neighbors and others going on similar journeys play and work hand-in-hand.
We are all so much more than the old story told us we were.
How do I know this?
Because we’re nine years into our own transformation. Over the years since the diagnosis, mom has given us more of herself, not less, than in the past. She’s given me the courage to leave energy-draining work, to turn my home into a community space, to become an author, to move to an island when I felt called to do so but didn’t know why, and to recognize myself as a poet. She helped return me to myself: the girl painting rocks and sitting on the beach writing poetry. She helped return my sister to herself too: giving her the courage to become a mother herself. We can hear her voice within us now, and her story and ours weaving together, whether we’re in the same room or thousands of miles apart.
Our story. Our words. Our definitions.
Here at Moderate (Stage 2) of Linda’s Disease, we may invent words and stories and definitions for ourselves, not because we have to, but because we can. We can! And we may no longer recognize familiar faces because we have shed our former selves and become something both oddly familiar and yet entirely new together. Here we may begin to tell the other half of the Alzheimer’s Disease story: the half that “well” people in our culture often cannot imagine and see without us. Because here, right here, we live and play and dance and laugh and weep together. Here we are whole. Here we become our potential. We become game changers.
I spent last week with mom and dad for mom’s St. Patrick’s day birthday week. We had a fantastic time! We went dancing and their neighbors taught me the two-step and how to line dance. We went to Assisted Living The Musical, to a friend’s choral concert, and rocked out one night at the Arizona Opry. We drove up into the mountains for lunch–stopping along the way to look at wildflowers and views. We also hung out with neighbors during several happy hours, made cookies and bars and margaritas for a party, and shopped for necessities. They wore me out.
We’ve been living with mom’s Alzheimer’s diagnosis for 9 years now. For years after the diagnosis, I was terrified. Mostly–it now seems–because I believed my culture’s shallow, distant hype back then about a lot of things. For example, back then I blindly, unquestioningly, believed that:
- Slowing down means falling behind
- Losing our independence means losing our value or worth
- Dropping our filters and inhibitions means embarrassment and loss of dignity
- Letting go of speech means losing our ability to communicate
- Losing our minds means losing our selves
Wow. What a gigantic load of bullshit I allowed my culture to dump into my head unexamined. Fortunately, our family functions like a sea sponge most days now: shit flows in, through us, and right on out the other side…
1. Slowing down means falling behind – this idea is hooey
Slowing down with our parents and each other these last 9 years has meant we’ve all had to let go of a lot of ideas and former selves and old responsibilities. Mom and dad let go of being the always-there-helping-us-all-the-time-in-person family elders they once were. They prioritized themselves for a change: they had to. They moved to a warmer climate. Started playing bingo every Tuesday and dancing every Friday. They started having happy hours with neighbors every other day or so. Started laughing out loud often, and every day, like they did back when they were first married. Recently they started getting and enjoying reading the newspaper every day again. Dad reads the Funnies out loud to mom. It’s beautiful to watch. Between that and the Internet, he’s more up-to-date on current affairs in this country than just about anyone I know–including my always-up-to-date activist friends across Seattle.
Slowing down has unleashed a series of tremendous gifts for Daniel and I too. There is no judgment here about your life choices: everybody’s life and slowing down looks different. This is just what our slowing down looks like…
A year after mom’s diagnosis, I quit my full-time job to finish a degree instead of trying to do both at once like I’d done in the past. Soon after that, I gave up my pursuit of traditional business consulting and instead turned our home into a free community coworking space—embracing a true-for-me idea that community and closer relationships with neighbors were what we/I really needed. Slowing down even further with neighbors regularly in our home, I re-learned about the gift economy and swapping, sharing, re-imagining, and bartering: things I’d completely forgotten as options. Eventually I began writing books, because I finally had time to notice that I’m a writer. We later moved outside the city and slowed down even more. Here I became a poet and Daniel began hosting photography workshops out of our home. This year, we created our first flash nonfiction book, in just 4 weeks, using found-object art and already gathered community stories. We can move like lightening now when the community needs us to. We now have the space/time/ability to respond in a flash to community needs and also the ability to say “No, we can’t be involved with this right now.” All because we slowed down.
2. Losing our independence means losing our value or worth – also hooey
Losing our independence has meant mom and dad growing closer as time goes on. It’s meant a shift to a 55+ community where they have more dear friends—friends available to them round the clock—and within-walking-distance activities and services. Meant sharing cooking and housework responsibilities and bringing in extra help as needed. Meant a traditional dad—inclined to listen to his own voice as decider and leader—learning to listen more closely and becoming more able to intuitively understand what mom needs. He even began listening to his daughters more, too, who have a lot more to offer than he realized before. Our parents matter more to each other, and more to us, and we matter more to them, thanks to Alzheimer’s disease.
Losing our independence has meant my sister and I growing closer as the years pass, instead of farther apart, even though we live three states away from each other and have different interests, goals, and work lives. It’s meant growing closer to our own husbands, and to each other’s husbands, and to our core-circle friends too. It’s meant becoming even more honest with and growing closer to neighbors. And making friends with other care partners: people we can share anything with. Losing our independence has meant a continuous revealing of our interdependence. A continuous revealing of our individual fears, our hidden beliefs and ideas, and our inner selves. Everyone still in our lives today matters more to us now, not less. And for those who’ve stuck with us through our worst, we matter far more now, too.
3. Dropping our filters and inhibitions means embarrassment and loss of dignity – so much hooey
Mom doesn’t remember names anymore. Yet when she spots people she knows she may sprint across the store, or the parking lot, or the yard to greet them. She often embraces people she knows with full-body joy. On occasion, she may even hug somebody she doesn’t know. Each moment I set aside my own uptight concerns about this, something new comes into focus: most people adore being greeted this way. Mom can pull smiles and laughter out of anyone now, including strangers. Many of her neighbors light up when they see her coming, saying “Yay! Here comes my hug!” The rest of us don’t give each other enough credit. She does. She greets people the way I’ve always wished I could: with the full joy and abandon and pureness of spirit of a puppy. Her dignity isn’t lost. If anything, she points out how far the rest of us have to go.
Mom adores singing and can remember a lot more when she does. She sings along during concerts and musicals now—even when nobody else in the audience is singing. Early on, this embarrassed me. Now I join her. I began noticing that often other people start to sing when she does. We mostly go to concerts and musical events now where we’re surrounded by people who see the genius in singing along to life instead of being an audience of silent observers. Places where audience participation isn’t welcome aren’t places we want to be anyway.
Last week while we were sitting in their retirement community’s Jacuzzi one evening, with 7 or 8 other people we didn’t know, mom closed her eyes, cupped her hands, and began slowly lifting and pouring water over her head repeatedly—in pure, un-bothered-by-others bliss at the feel of the warm water on a cool night—as if she was alone in her own bathtub. At first I felt a little embarrassed. I asked her if she was cold and wanted a towel. But she wasn’t cold. She was just doing her own thing and enjoying the moment differently. I made a conscious effort to get over myself and then I just watched. She was beautiful.
Embarrassment is my burden to let go of, not hers. She’s light-years ahead of me. Mom carries with her the wisdom of the Buddha, the Christ, the Woman, and the Child now. In her presence, I learn to let go of my burdens.
4. Letting go of speech means losing the ability to communicate – total crap this one
Much of mom’s spoken language is gone now. She listens most of the time instead of speaking. Answering most questions as an individual is beyond her. When she does speak, it’s usually in short, 1- to 4-word phrases about what’s happening in the present moment.
A traditional way to look at this (in my culture) is to believe that mom needs help with conversation. Dad, Jen, I, and others close to her serve as conversation supporters: interpreting and filling in the blanks in what she’s trying to say. When strangers or neighbors ask questions, she starts by saying a few words, we fill in a sentence or two, she continues adding a few more, and so on. It’s actually really fun most days to communicate together like this. It feels like a game.
Another way to look at this is to see mom as a teacher of listening, collective communication, and even telepathy. She’s training us to be more intuitive, better listeners, better interpreters, more patient, more creative and imaginative, and to experience all communication as a service to a greater whole. She’s also teaching us to sing more often.
I hear mom in my head more than I ever have before. I can be walking on the beach—four states away from her—and still hear her. Whether I’m creating poetry, a grocery list, or working out a problem in my head, she’s with me now. Her voice and her stories live in my head alongside the voice I identify as my own and the voices of my grandmothers. Many people only open to an experience like this after the death of a loved one. Thanks to Alzheimer’s disease, I get to experience many years of this while mom’s still around in person.
I don’t mean to downplay the frustrations of losing the ability to speak. It can be really frustrating. And at the moment I find great joy in noticing that mom can go days and weeks at a time now—here at mid stage—without appearing to be frustrated about this at all. She’s relaxed into the idea of collective communication and listening. She’s satisfied with hugs and smiles and singing and group improvisation. And so am I. I find that 99% of our time together now is about the pure joy of being together.
5. Losing our minds means losing our selves – the biggest hooey of them all
Mom has taught me that wherever the “self” lives, it’s not as rigidly tied to the mind and the brain as I was once certain it was. At her core, wherever that is, mom is a smiling, kind, happy, helpful, funny, singing, honest, occasionally crying, occasionally jealous, yet always generous soul. The most terrifying part about Alzheimer’s disease was the idea that we would be losing the woman we know, love, and recognize entirely—that a disease of the brain would literally erase her from existence bit by bit as we watched, helpless.
This is simply not true for us. If anything, the opposite is true. Alzheimer’s isn’t easy. Yes, and…
Alzheimer’s has wiped away some parts of mom while revealing and giving to us the core of her. Mom was once whip smart and had a great memory, but we didn’t love her for her intellect and her recall. She was an expert planner and record keeper and home keeper and cook, but we didn’t love her for those things either. Our love grew out of a shared recognition that we were free to be our true ourselves together. Our selves were free to join her smiling, kind, happy, helpful, funny, singing, honest, occasionally crying or jealous, yet always generous self. This is still true. In fact, most days, it feels a lot simpler now than it did 10 years ago. Because the disease hasn’t just knocked away some parts of mom: it’s been knocking away parts of me and Jen and dad that didn’t serve us well. We can move from our core selves now and as a collective self now. The days we do are really good days.
I was just in Arizona for mom’s St. Patrick’s Day birthday week. We were standing at a large department-store counter while a woman blew up a bouquet of green balloons for us for a party their neighbors were throwing. I noticed a big Disney princess display full of gifts for girls. I pointed at the display and said “Mom, how’d you like a princess fleece blanket for your birthday?” She smiled, put her arm around me, and said “I don’t need that. You girls are my princesses.” We hugged each other tight then: both perfectly content and oblivious to the clamor of the too-busy department store. We were both completely aware of what a deep gift the other’s presence is. Mom spoke back-to-back complete sentences to me in that moment—the only time she did so during my 5-day visit. I will never forget that gift, that moment. How we pulled ourselves outside of time together.
Thanks to mom’s disease, we’ve become more fully present in the moment together. We notice the tiniest of amazing things now. We’re grateful for the tiniest of things now. Mom is still right here with me, beside me, within me, arm around me. Still fluidly helping me and teaching me, laughingly or silently, often invisibly. We are unbelievably lucky to be living this life, to have each other, and we know it.
We haven’t lost ourselves. We’ve found ourselves together.