My Mother died sometime early last year. But no one sent our family any condolences. No one shared a series of memorable moments or spoke at her funeral. In fact, I cannot even tell you when she actually left us. My mother has Alzheimer’s. And if you think saying she died though she still lives is being melodramatic, then you have never loved anyone who succumbed to this horrible disease. Her body is eighty. Her mind is both childish and elderly; no age fits.
She was diagnosed five years ago through a spinal tap that showed she had particular proteins. Though not fool proof, these can be defining marker of ALZ. However, I first noticed that something was up on a trip to the Gulf in the Summer of 2013.
We both burn in the sun, her much faster than I, and we have both suffered small skin cancer surgeries, yet we refuse to stay away from the beach. We love the water so much that we prop ourselves under a fancy umbrella, coat ourselves with thick layers of zinc oxide like cream cheese on bagels, and stay put until nature drives us indoors.
We planned to splurge on early dinners each evening. Though she had been to this beach a number of times, I noticed that she could never recall where our car was after each meal. Gee, that happens to all of us sometimes, right? But this was every time we parked. Nor could she understand why I turned left out of the condo lot when we drove to dinner. Left was the only direction we could go and not hit the sea. Worse. . .she often struggled to pull up certain words. “The. . .the. . .whatchya call the thing that. . .the the. . .” These were subtle clues that perhaps only her daughter would notice.
My grandmother also had Alzheimer’s, a specific type of Dementia, so we knew word loss is a symptom. Gramma’s disease didn’t seem obvious until she was deep into her 80s. Therefore, my mother’s apparent memory failure at 73 frightened me. And her. So early. Too early.
She was never one to lose control, yell in anger, but when, on our trip home, I tried to discuss how she was struggling with direction, she screamed that if I ever asked her about her memory again she’d cut me out of my parents’ will. As if they have millions to pass down (They don’t), as if this would stop me from figuring out what was up (It didn’t). She was in tears, and we didn’t speak the rest of the afternoon’s drive. But I knew, and her aggressive fear supported my suspicions.
Each small step off the Alzheimer’s cliff was harder to ignore and even harder to discuss.
By Christmas, she gave me odd gifts, very unlike her to purchase, as if she did not know me. This was my first sense of loss. My mother was typically so astute and thoughtful about presents. When I said so to a group, expecting comfort, one woman scoffed and told me I was being silly and jumping to conclusions, judging me as if perhaps, I were selfishly complaining about “weak” gifts, and not frightened for mother’s brain. I couldn’t care less about the product. The act was was the issue.
By the next Spring of 2014, Mom would call me, worried about my health insurance. I’d reassure her that I had great coverage. And then a few days later my phone would ring: the same concern. And reminding her that we repeated this conversation a few days earlier rarely ended well.
But. . .she was still Mom, still happily playing bridge, cooking, socializing, reading books and discussing the world with me.
My father made appointments the next Spring of 2015, when it was clear to him that she, the woman who introduced us to and then taught us how to use the personal computer and all its accessories years ago, fell victim to an email-slash-phone company scam. After adjusting all their accounts to save them from fraud, Dad knew his wife of nearly 60 years was not completely herself. Sometimes when you are that close to someone, recognizing the change is harder. But still. . .Mom was Mom.
I almost joined a support group in Atlanta eighteen months ago, but the leader of the center told me attending would simply scare me since my mother was still “with us” in terms of being independent and cognitively capable. Sure, she couldn’t always think of the word for washing machine, but she’d laugh when I filled in the blank, and thank me, joking, “See, it’s just words I can’t find. If you were always with me, I’d never have trouble. . .”
I had watched my grandmother die with the disease at 92, so I understood what this group advocate meant. However, my grandmother, though she lost her ability to speak or walk, never became violent or nasty, never roamed the halls. . .never became. . .a lump. There was a spark in her to the very end; possibly a heart attack took her and not the final stages of Alzheimer’s where the victim becomes totally disengaged and incapable of anything at all, even breathing.
The advocate I had contacted suggested I was not ready to listen to the horror stories that others might need to share in a group setting, for right then, my mother was still herself; she would call me, still knew all her grandchildren’s names and mostly their ages, and what was up with each. She still discussed my two cats and two dogs like her own family, wishing she could take them home, make them her pets.
Yet, we were all reeling, knowing what was descending on my mother and our lives. Bit by bit she was losing herself. And there was zero help for these early stages.
My father took Mom to visit her brother and his wife in Virginia the summer of ‘17. Mom knew who they were, but did not know their children anymore. My Aunt thought Mom acted much better than I had described. My Uncle was shocked at how badly his sister had failed. She was at the point of repeating herself, retelling the same story in mere minutes, and this threw him for a loop. But worst of all, Mom was very aware that this awful disease was stealing her away, and she felt shamed that they could see it.
I traveled with her to her brother’s home again Spring 2019, and though both remarked that Mom seemed more relaxed and not much “worse,” she would cry herself to sleep next to me, in the guestroom bed we shared, moaning how I was the baby and she was the Mom, not the other way around.
“This isn’t right,” she complained.
The fact that I had to navigate ticketing and security and boarding for her as we traveled through Hartsfield to Newport News, and worse, had to poke through her suitcase—did she have enough undies? Socks? Was she packed properly for cooler weather?—didn’t feel right to Mom. I told her this was the circle of life while I rubbed her back, helping her fall asleep.
“Mom,” I said, softly in the dark, “Sometimes a Daughter gets to care for her Mom.” Though I knew her emotions were part of the disease and not necessarily part of her logic, I still tried to reason with her, calm her with these words.
My mother had always been the most capable, talented, clever woman I’ve ever known. If there was something she wanted to figure out, she did. If there was a skill she wanted to learn, she became an expert: Sew, reupholster, keep the accounts, invest, revamp the computer, strip furniture, knit, crochet, paint, bake, garden, bridge. . .parent. . .all while also making a serious living as a real estate broker before she retired. Her husband in the Air Force when we were growing up, she often reared us alone, kept a beautiful home and then packed up and traveled the world whenever Dad was reassigned. She was smart and witty, and insightful. And though I am her grown daughter, and have inherited many of these traits—she made me self-confident—I still leaned on her for her wisdom and companionship; I still desperately want to.
And to realize that slowly, but surely, she could no longer do these things was killing her emotionally. At first, after diagnosis, she could remember being once able to do just about anything, but knew she could not recall how to apply those talents now; this fact depressed her. Up till a few years ago, she often pulled out a letter I had written to her on her 50th wedding anniversary, telling her how admiring I was of all of her traits. . .traits I then listed in detail for her. I described how she was the greatest role model anyone could have.
“I love this letter. Did you mean all this?” she’d ask. Then later, as her memory worsened and these skills faded like a dream, she would read and wonder, “How did I do all these things?”
I’m glad I wrote that love note in 2008, for I don’t think she knows she has such a letter anymore. And if I had waited much longer to say these words, to describe my gratitude, she might not have understood.
She would ask in the Spring of 2019, did she really make a buttermilk pie last Fall? Did she really refinish my dining table five years ago? She was not sure she once could, let alone had ever done so. I have come to wonder: maybe not realizing what skill she had lost was easier than knowing she was losing it. But that is just my rationalization of all our pain.
She would cry, sometimes on the phone or sometimes clinging to me in person, remembering that she once had a cat who had died unexpectedly twenty years ago. Though loved, this kitty was never her most beloved, but you would never have known this with the way she suddenly carried on. With Alzheimer’s, the recollection of Yogi’s death caused fresh pain like it was happening that moment.
She has had many pets, and like me, treats them like babies, caring for them till the very end. But somehow, the visual of finding Yogi dead under a crib she kept for her grandchildren, was stuck on a loop in her memory bank. Nearly every time we meet, she complains that Dad won’t let her have a cat, and returns to Yogi’s loss. Though I have argued that a pet will make her feel better, perhaps get her off this particular replay loop, I agree that Dad feels too overwhelmed to have to worry about a cat escaping or about caring for it, too. Who am I to judge how much he can handle?
But even with this emotional hallucinating, Mom was still my Mom. Though less able to grasp all the nuances, less able to answer my, “What have you been up to this morning?” she still could talk to me. I once could set her to conversing by bringing up anything she did recall, her parents, her childhood; though her memories were not accurate, with help, our discussions were still mother and daughter moments.
However, until the summer of 2019, my father had been shielding me, and the day I was forced to realized this was anguish. I knew she was changed, of course, but he had masked some sort of bigger transition from me.
I felt bamboozled, like I lost the opportunity to say good-bye once more as my mother was leaving.
A few summers ago, we had taken her to see a piece of property we bought in Seagrove; she struggled with a menu at a beachside restaurant, masking this by complaining the room was just too dark to see, but she did eventually choose a dish. Later she was excited to walk the narrow lines of our slice of land.
Now, though she still appears to read, she will look and look at a menu, scanning it like it hides a secret. Servers are confused by this woman who demands ten minutes to read all the types of soda offered, telling themselves, don’t most people rattle off a drink without thinking? Mom is no longer aware that Diet decaf Coke is her favorite. We must choose everything for her. She now warns me not to buy land at the beach because of “That horrible hurricane”, (Michael) forgetting a beach home is already in the works. (I had fantasized that I could take her to her favorite place more often. . .)
And even though I was aware of all these essential changes, in the summer of 2019, I had believed she was still sending me emails and funny articles, she was still calling me; in my mind I pictured her turning on her computer and perusing her email, or picking up the phone and pressing the buttons. This communication was a sort of marker for me. . .Mom can still. . .
But then one day, last summer, taking her shopping, I found she did not know what credit cards were or how to use them. She couldn’t recall that she had plenty of money in her wallet, so she worried over and over that she didn’t know how she could pay. And my comments, “Don’t worry, Mom, I’ll pay,” didn’t calm her.
She would circle one particular rack, pulling out the same, voluminous, brightly colored shirt to show me, forgetting immediately that I had just said, “Yes, that’s pretty, but it’s way too big for you.” She’d twist about, gripping the Petite Small tag inside her collar, making sure that she wasn’t the same size as the shirt she wanted while I replaced it on a hanger. . .and then around the rack she’d go to do it all over again.
She could recall each time that neck openings revealed size markers, but she could not recall she had just touched that shirt.
Interestingly, as she forgot what she had just held, she kept choosing the very one—XX-large, colorful—consistent taste, I guess. I let this go on for a while, smiling through it for she was happy shopping the same rack for the same shirt. But I was also heart broken. This was my first honest exposure to how far her brain had deteriorated.
When we returned home, in telling Dad about this, inadvertently, I discovered that she was not the one sending me email. Dad was using her account, instead of his own. She was not the one dialing the phone; again, Dad was making the choice to call me, and handing her the phone. Somewhere along the way, my mother had lost the ability to do so and I wasn’t informed.
I had been holding onto how Mom could still. . . while she couldn’t. Yet. . .yet, even then, she was my Mom when Dad passed her the phone.
And then. . .poof. . .she wasn’t.
Identity is so wrapped up in memory; knowing this person in front of me is not the same woman who accomplished so much, who had such a rich, multi-layered life, who raised me and taught me and loved me is a huge, painful loss, no easier than if she had died suddenly in a car crash. And though friends and acquaintances will say, Oh, I’m sorry, how horrible when they hear Mom has Alzheimer’s, they are often picturing the strangeness they see in films, the sad absence of memory in some distant elderly relative they barely knew, or the difficulties the disease puts the victim’s caretakers through.
They are not picturing a metaphorical death that my mother or her family suffers when the daily transition from herself to this other occurs. The double death of Alzheimer’s, first of the person, and then of the body.
A quick, literal death is shocking and gives families no room to say goodbye, yet in its wake comes an acknowledged, supportive grieving structure. A slow death by cancer or other terminal illnesses is awful in its own way, but can allow family and the sufferer goodbyes as they near the end. I have seen this process up close and personally as a hospice volunteer and as a relative. However, with Alzheimer’s, there is that lengthy suffering, but no timely grief system in place, and miniscule social support.
There are also no true goodbyes.
When victims are diagnosed, do you say—while they are still swearing that they are not losing their memories—“I love you, and it will suck to lose you; I hate the fact that I’m losing you?” the way you can with other terminal illnesses? No, it is too soon for the victims and survivors. I tried, but Mom, like most victims, adamantly argued that Alzheimer’s was not happening. Denial is one on humanity’s most powerful mechanisms.
Victims, while still cognitively capable, want to avoid discussing their illness, so families find saying goodbye shunned. But if you wait to say these words, will it be too late? In truth, how do you say goodbye to someone who will live for years after they are gone.
You can say your good-byes when the time feels right, but no time ever feels right, because aside from denial, the victim is dealing with the unknown; there is no life expectancy date doctors can confidently offer. . .ten years, six, fifteen? Plus, unlike with other terminal diseases, no Hospice takes them while they are still conscious of who their daughter is or even why she is sad.
When sufferers actually are “ready for hospice,” by that point, you don’t say to any person who can’t think straight: Hey, you used to be a different person and I miss that person. Doing so only confuses them and could tragically result in that painful conversation becoming the loop their brain judders obsessively around.
Because of how different this disease is, the diagnoses of Alzheimer’s, the community’s mourning process, and the way the medical world handles these patients are all wildly off kilter with the rest of healthcare’s other terminal illnesses.
Let’s say a cancer patient receives a six-months-to-live diagnosis. Aside from the stages of grief, the sufferer and their families wonder, will I live that long? What should I do now? Will I suffer? Will people reject me? And doctors and family—along with a whole industry of caregivers from grief therapists, to oncologists, to visiting nurses—can assure victims that their pain will be managed, their loved ones will be there to take over. And everyone can say goodbye as the time comes near and if not too late, the patient will realize the love. Believe me, I’ve done this with family and, as a hospice volunteer, I have watched other grievers do this with their own family members.
With my sister-in-law’s cancer, there were doctors and nurses, and monthly and weekly visits centered around giving Lori a voice, around patient advocacy, and the dying process. With Alzheimer’s, there is no doctor there to assure victims of any sort of management plan. No one to watch over them but the people who love them. It’s: You have Alzheimer’s, take this med that does not work, see me in six months, when I will have no new info. And by the way, if you need it, here’s an antidepressant. The professionals are blaringly absent until the patient is barely able to feed herself, let alone know why anyone is there.
With Alzhemier’s, true, there come the same stages of grief as with any terminal diagnoses, and many of the same questions. But for the victim, add on top, a debilitating fear of becoming a physical and financial burden for years, for often a decade or more. And even worse, throw in the faulty worry of becoming an embarrassment, a clown, and the petrifying belief they will be abandoned in an abusive nursing home. Victims of other terminal illnesses do not worry that their brains will fail them to the point where they can no longer self-advocate.
Thus, with Alzheimer’s the resulting denial is lengthier and floods into a time when the sufferer’s brain cannot grasp what’s coming. I have a friend suffering from MS who is actively working on his bucket list; right now, he’s on his way to a dog mush in Alaska. Check! Alzheimer’s denial is so powerful, that embarking on such a plan feels like defeat at first, and becomes an impossibility later. There was no way I could say to Mom four years ago, let’s go to Thailand this summer (before you forget what Thailand is.) The same woman who threatened to take me out of her will if I ever again spoke of her crumbling memory?
She simply asked me, “But why would we do that?”
Checking off a Things-to-do-before-I-Die list first requires acceptance.
For my husband’s sister, acceptance came in waves, and would disappear periodically. As Lori neared succumbing to ovarian cancer, we all often pretended that she was going to be around the next Thanksgiving, a year later; she was going to travel to Hawaii with her buddies come summer. Still. . .even with the weird self-induced subterfuge, she walked into Hospice aware of herself and us, knew when we spoke to her on her deathbed, and knew who was speaking. An Alzheimer’s patient just forgets why he is so angry and depressed long before final goodbyes. Has no idea why there are random tears on his cheeks. Meanwhile, though processing their own acceptance, families are suffering more, taking on a greater share of work, and both welcoming and fearing a death somewhere deep in the future.
By the time a patient comes seeking answers from professionals, they are typically in Stage 4 of the seven defined stages of Alzheimer’s, but doctors know that to continue enjoying life to the fullest is important. Thus, because of the disease’s lengthy decline, Doctors want Alzheimer’s victims to focus on the good, to almost go into a sort of dismissal of the truth “for now” while they still can. Meanwhile, they hand them a brochure listing all the Alzheimer’s stages the victim will pass through without stating they have already bypassed three or four, but then doctors add on quick, but ominous suggestions that families get their affairs in order.
The irony of doctors’ willingness to embrace a fugue-like denial of memory loss makes sense, for as I said, victims are suffering and facing two deaths, one of the person and then one much, much later of the body. So, “let’s not remember that we cannot remember” seems like a useful defense mechanism, especially since the stages can linger for years or rush like a hurricane through a brain.
No matter the doctor’s intention, this encouraged denial is an interference in the mourning process, as well.
Concurrently, just like the local Alzheimer’s support group leader who told me last year that it was too early to come to the Caregiver Grief sessions, group therapy is too early for many patients when they need it the most. Support groups for the actual Alzheimer’s patients are fewer and farther between than what is available for other diseases; a breast cancer sufferer has support groups galore, and she knows why she is there. But, when an Alzheimer’s patient is able to know where she is, the sessions are too honest for people who still want to cling to the chance that their memory is not disappearing.
And then when their memories are almost gone and there is no denying it, patients find the groups too difficult to navigate. Imagine a room full of grievers who can’t recall why they are there or who the other people are. Imagine trying to organize these groups so that attendees are all at the same stage of memory loss. Impossible.
A quick internet search for support groups “near me” for cancer alone results in over 400 million results; plus, the platform prompts me to narrow my search to types of cancer, offering foundations for people with anything from Bladder to Pancreatic to Bone cancer. The American Cancer Society’s page wants to help me so badly, that they break down all the different types of support I can receive, from transportation, to therapy, to babysitters, to end of life care. Whatever I can think of, they have a group or a person ready to help.
However, Google returns only 1% of those number of hits for Alzheimer’s in the Atlanta area. Sure, there are far more cancer types compared to the various forms of dementia, so maybe that makes sense. But upon closer inspection I see that these available pages are often copies of each other, mirroring what that one counselor had told me— how if Mom can still dress herself, it is too soon to come—and offering barely more than what was printed on the early, after-diagnoses brochures. Quick descriptions of what to expect and a hotline to call.
Looking for therapists who work with actual Alzheimer’s patients was even less productive: 57 thousand, exceptionally repetitious hits nationwide popped up. But upon closer inspection, most offerings were incorrectly focused on caregivers not therapists, and included research centers who wanted study participants rather than help centers who wanted to help Mom. Again, I imagine the greater availability of people ready to work with victims of other terminal illnesses is due to other patients’ survivability, their knowable future, the acceptance-while-still-cognitively-capable.
The idea of therapy is to process, and to progress. ALZ patients regress, and they lose their process; they don’t even remember process.
And frankly, I think so many people and professionals avoid dealing with dementia sufferers and their families because, holy crap, what if this were me?
Thus, there simply is not the scaffolding among the industry and among the communities of friends to help families and victims face and conquer losses day-to-day.
My close friend’s mother is diagnosed with stomach cancer, and we come out of the woodwork for a handful of weeks to babysit her grand-daughter while she takes her mother to chemo; we bake casseroles so she doesn’t have to cook after an emotional day, we call her with love and prayers, knowing there is an end in sight. . .suggesting that the hardest part will not last much longer. Either her mother will live or will not.
But with Alzheimer’s, the system is out of whack. Each part is the hardest part. First, accepting that nothing cures this disease is tough, but then comes patients’ suffering as they realize they will lose their minds. That becomes the hardest. No. . .seeing them struggle to navigate the world with this deteriorated brain is harder. Helping them like one helps a newborn is so much harder. . .Wait. . .is waking up and discovering you lost them, yet here their bodies still live the worst? Maybe. Finally, they still need care, serious, difficult caretaking, yet they don’t even know who is caring for them. That might be the hardest step of all.
When, then, in that sequence do friends bake casseroles. . .and for how long? Seriously.
To be fair and honest, what help that the community does offer, exists only if the victim is willing to open up and share their diagnoses. Even with open communication, what seems to be the norm is a patient’s close friends and sometimes even family members disappear, saying, “They don’t even know me, too weird; why should I bother.” This has not yet happened to Mom, not fully.
God love her, my mother’s neighbor has never heard either of my parents utter the word Alzheimer’s, but Carole still attempts to take my mother for walks the length of their street every day. No matter how my mother behaves, no matter that she cannot recall Carole’s name, Mom’s friend shows up to walk with a smile on her face. Mom’s bridge team let her play much longer than she knew the bidding sequences until, frankly, a few other teammates needed nursing homes as well. But still, even in these cases, no open-hearted circling-of-the-wagons occurs like garnered in other diseases. My father alone struggles to cook each night after corralling and protecting his wife all day with only my help in sight. Is this because Mom has been so unwilling to discuss her diagnosis? Or is this because people forget how terminal this disease is because it takes so long?
The closest I have come to an open discussion with my mother of what she thinks about her disease was several years ago. She was complaining about not being allowed to drive and how she didn’t like the way my father was treating her. In other words, she was losing her abilities, and thereby her independence, and that was not sitting right with her though she never mentioned her memory or Alzheimer’s. The cause and effect of Dad taking her keys was nearly lost on Mom. And though I knew Dad would always love her, I promised I would steal her away and keep her with me if my father got “too bad” because frankly, Dad can get “too bad.” It is not easy being a caregiver.
“Don’t worry, Mom. I love you and you can live with me anytime you want. I will care for you as well as you have mothered me my whole life.” Stilted, but true words to soothe her.
We sobbed and had trouble forming words for at least thirty minutes after that chat, just holding each other on my sofa. But even then, notice on the surface, I was talking to her about “possible” (pretend) spousal abuse rather than her disease. Mom was not ready to discuss that her Alzheimer’s was why she could not drive, not ready to admit that I was losing her word-by-word, cell-by-cell. She was still Mom and was not going to discuss a day in some future fearscape. She would rather complain about Dad’s “temper”. We mourned through stand-ins, not openly.
Alzheimer’s is not only a thief of the mind, but of the mourning process. Kubler-Ross be damned.
Yes, my mother still knows I am her child though there was one moment last July when she wanted to know who was that man driving up front (my husband was taxiing my parents home); she was shocked when told that stranger was married to her daughter. “I have a girl?”
Later that day, she could even describe how she momentarily forgot who I was, able to remember not remembering: “It’s so weird. I know who you are now.”
That’s the funny thing about Alzheimer’s. It is not a steady, consistent decline. She could play bridge as recently as Spring of 2019, but cannot find the grocery store. She cannot cook a meal, but can peel potatoes and boil water if I ask and hand her the proper utensils. She can dress herself and matches her clothes like her life depends on it, blue pants, blue socks, blues shoes, blue scarf, blue earrings. She can crack a smart-alec, witty retort, but have no idea what a comedian is. Just like in healthy brains, there are clearer days than others. Diet, sleep, exercise all matter.
But now, like a light switched off, I realize that though she knows she has a daughter, I can no longer talk to my best friend the way I always had. When she does talk, she does not have the same expressions, the same spark in her Liz Taylor eyes. She asked me oneday where did I get my curly hair. “Did a stylist do it?” Yes, I’m glad she can still say stylist. But she doesn’t remember how her mother had curly hair; getting her to talk about herself or her past is nearly impossible now, for even the present is so fleeting to her. If I talk to her about my sons, I’m telling her a story about strangers.
Often, she seems shifted into that space where many Alzheimer’s patients go: the interested bystander who listens because they really don’t know who or what is going on, but don’t want it to show. They become masters at finding excuses to hide their memory loss, until even that takes too much effort, and eventually say about everything, “Well. . .I don’t know about that.”
This truth can open up all sorts of philosophical questions about identity and life: Is “who we are” attached more to our thoughts and memories than our bodies? Who is this person Mom is becoming?
And don’t confuse what I am saying. I love this woman as much as I ever have, but the woman who was my mother is almost gone, and few around me understand. It’s a loss people will not help me mourn for many years to come. I love this woman still for all she has ever been, for all she has ever done or thought or felt. And I love her because she needs my love more than ever.
As far as we as a family have progressed in processing this tragedy, there is still something besides Mom that is missing: Support in our grieving.
I do wish that other people knew to mourn with me today as I absorb that Mom “died” sometime recently without me knowing, knew to send heartfelt condolences and not wait for the day years from now when Mom’s passing will only be a relief from the prison of her own brain. But how does one announce this? My mother died recently at an unknown hour. But her body still lives?
And how do they respond?
There are few people willing to mourn with me now when the hurtful loss, her “death” is fresh and ongoing. There is no custom to follow. No etiquette. No whole page in the newspaper dedicated to such announcements. There are no other deaths that occur unmarked, unrecorded beside perhaps prisoners of war, those missing in action or the unknown kidnapped. Ironic since Alzheimer’s is a sort of captivity.
I’ve even heard people tell me these words: At least she is alive. . .a phrase that implies the speaker’s pain is competitively far deeper because they recently lost someone to a literal death.
I write this to say, in honor of all families going through this, we need to develop a custom recognizing how mourning during Alzheimer’s destruction deviates from the norm. Nothing about it is like other deaths, other grieving steps. Can whoever the new Emily Post is write new etiquette defining when to say what during the losses caused by Alzheimer’s or Dementia?
Seriously, if we can imbed new cultural customs like the ridiculous neighborhood Halloween Boo Bags or Christmas’s elf-on-a-shelf in what seems like mere nanoseconds, we certainly can change how we collectively mourn the loss and subsequent deaths of 262, 000 loved ones a year by dementia and Alzheimer’s.
Late fall, I just sat with Mom on my screened porch watching the last of the migrating hummingbirds fight over my red feeders. We rarely spoke.
Birdwatching takes up a large chunk of her day, but now the hummers are all South. Yesterday, a Carolina Wren, her favorite bird for “It just looks like a cute, little a chipmunk,” kept checking out the seed tray. Mom didn’t know what it was, or even that she had claimed it as her favorite bird, but she still enjoyed sitting quietly with me, tracing with her pointed finger how the wrens zip back and forth to the nearby oaks and the porch.
I’m currently in a wheelchair having shattered my right ankle and my left shoulder in a silly bicycle accident. Dad was ready to drive home, and had come outside to collect Mom. As we were moving to say good-bye at the door, Mom noticed the laces on my one good foot had come undone. She stopped my wheels and squatted down. Dad literally whispered, “Ain’t no way she’s gonna do that,” convinced Mom no longer understood how to tie shoes. But slowly and certainly, she looped one lace over and under and through. Tightening the bow, she patted my foot like she had done so many mornings decades ago. “There you go!”
I know one day I will really have to say goodbye for good to this woman who only occasionally appears, and I hug her too long each time we part, but for now, I’m trying to celebrate that I can hold her and enjoy her presence. . .At least she’s alive. Meanwhile, so few people in my life know what’s going on in our hearts.
5. We Have Summers Off.
Steering with My Elbows 