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Archive for the ‘Alzheimer’s disease’ Category

Open Me First

The holiday dilemma: what do you get for the person who has everything?

Perhaps something goofy like slippers that sing Rock Around the Clock, or something extravagant like a set of diamond encrusted napkins rings, the kind of thing that becomes an expensive party joke. Maybe a bauble like a garden statue of lighted snowmen or a set of holiday themed coffee mugs, useless most of the year because, well, they’re holiday themed and who wants to drink coffee in July with Rudolph’s red nose stenciled on it? We can get truly original: a dozen bottles of wine with personalized labels, Humphrey Malarkey Family Reserve Chardonnay, so it looks like Uncle Humph became a boutique vintner on Christmas Eve.  Another possibility is the very exclusive Himalayan Cilantro Sea Salt Spa Scrub with Acai Crystals – imagine how much fun Great Aunt Agnes will have trying to figure out if she should eat the stuff or bathe in it.

My favorite is the two-pound box of Belgian dark chocolate covered bacon bits because dark chocolate is so good for you and bacon bits are not very good for you but, hey, they’re bacon bits – you get it, right? These are the kinds of gifts we consider when we must give something to a person who can afford to buy a new car for each of their nephews and nieces and then pay all the speeding tickets they rack up. Because people who have everything have, well, everything, and anything we might buy is nothing they need and that’s the whole point.

So now we come to the other side of the gift list, the folks who have nothing and need it all. You know what to do about gifting the less fortunate – write a check and deposit it at your favorite charity. Someone is always in genuine need and your check will do wonders for those lacking anything wonderful in their lives.

But what about gifts for another group that’s nearly impossible to choose something for? What about mom or dad or husband or wife who has Alzheimer’s – what do you get people with fragile health and declining mental faculties? At the memory care residence where my mom lives, I notice the usual solutions: a bouquet of roses or potted bamboo twig for their rooms; a warm scarf or some funny socks; a box of shortbread cookies or a bag of gourmet pretzels; cologne or hand lotion; a costume bracelet or sweater vest. All of them are useful and will be appreciated to a degree, but none will fulfill the most desired wishes of the person who is ill. What they really want, and what you really want to give, is restored health. But you can’t.

Here then is the solution to both giftee dilemmas: The very best present you can give is yourself. To someone richer than Midas or ill with an incurable disease, following are the presents they will all love.

Spend time with them. Commit to an extra hour at each visit, an extra day each month. Worth about a million bucks and comes with bragging rights. My daughter-husband-son-wife is here with me because they love me. No dazzling outfits required, no ticket reservations, just sitting next to your loved one in comfy sweats is fine.

Do an activity you can share. Work an easy crossword puzzle or play Bingo or watch an old movie or take a twenty minute walk in the garden or frost sugar cookies or sing the songs they love or make snowman decorations out of cotton balls with them. It’s the with them part that’s the gift and it’s free.

Make a memory bank. Put together a photo album or collage with name tags to identify their family and closest friends. Listen to their delighted comments as they turn the pages or point at pictures. This is so much richer than a traditional financial investment, and the dividends can be spent over and over without ever depleting the assets.

Take them for a safe and simple outing. A half hour drive through the woods or along the lakefront or by the seashore or around a neighborhood where the houses are festooned with holiday lights is a wonderful change of pace. Point out the ordinary and extraordinary with equal delight because they’ll see everything with equal delight.

Be old school. Send a snail mail letter. I’ve watched folks open cards and letters, running fingers over the words, putting them back in the envelopes and pulling them out again,  over and over and over, grinning the whole time. Even if you can’t be there, even if you can, even if they can no longer read, send a card with a pretty image or a letter with a photograph. Write the word love, sign your name. The best stamp you’ll ever stick.

Share the stories of their youth. Remind them of when they were young and if they can, encourage them to tell you more than you knew before, even if the stories they tell are tall tales. Special events like weddings, births of babies, career advancement, and vacations generate hundreds of topics to discuss. It doesn’t matter if they call their husband their father, their sister their best friend, or you by your hated birth certificate name, or if they get dates and places mixed up. You don’t need to correct errors (who cares?) but you can add your own comments as you build moments in the present with remembrances of the past.

Neither very rich nor very ill folks need more stuff to fill closets. They need stuff to fill their hearts. Yours will fill as well. It’s the Open Me First present and it’s the absolute best. And wait till you see those smiles as they enjoy their favorite gifts of the season.

 

Note: I’ve written a novel, Where Did Mama Go? about the devastation Alzheimer’s inflicts on families. It’s in the process of being edited, and then I’ll start querying for an agent to represent my work. My credentials for writing this story are sixteen years of assisting my mom through the labyrinth of this illness.

 

Gift box image courtesy Pixabay.com

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To Grandmother’s House We Go

We’re trying to get to Grandmother’s House. We’re trying to take her home, even though she’s lost.

Those of us who love and care for our family members who suffer with Alzheimer’s disease know that when they say they want to go home, it’s unlikely to be the last place they lived. Because they probably can no longer remember that more recent place, and taking them there may instigate even more despair for everyone. Grasping their desires is a moon shot from making them content. They want to go back to when they were seven and felt safe with their parents; to when they were sixteen and flirting with independence; to when they were twenty-four and exploring young adulthood; to when they were thirty-two and involved with marriage, children, and mortgages; to when they were fifty-eight and celebrating the birth of a first grandchild, a  child’s marriage, another’s college graduation; to when they were sixty-four and enduring their final career years; to when they were seventy-eight and Alzheimer’s knocked down all the retirement ideas they ever thought possible. All of their life collapsed like a block tower that can’t be rebuilt.

The holiday season arrives wrought with expectations and memories that tangle our celebrations by not meeting our high hopes. No matter how much we declare not wanting presents, parties to attend, and over-the-top fashions, if we’re caring for someone who is ill, we’re likely to have our plans changed, our hopes derailed, and at least one event cut short by a crisis. Tears, anger, aggression, bathroom accidents, bathroom refusals, eating problems, repetitive motions and comments, sleepiness, anxiety, total confusion – they all show up like a beggar at our feet. It isn’t Grandmother’s fault. It can’t be, because someone ill with Alzheimer’s is no longer in charge. The disease is in charge – peculiar and heavy handed, blistering with fever and glittering with promises that can’t be kept. I hate you, they say, I love you. You must not love me or you wouldn’t leave me here. I want to go home. And we, the accused, we cringe and cry and dig our nails into our hearts. We have to leave you here at this assisted living residence because we no longer have the strength or skills to care for you “at home.” Their home, our home, someplace other than the residence where they reside – we can’t.

My friends and I discuss whether or not we’re bringing mom (or dad or our spouse) home for the Christmas Day gift exchange or lighting the Chanukah menorah. If we’ll instead replicate the event at the residence where they are cared for by professionals, then abide the guilt of the empty place at the table, the missing voice of the blessings. Can we enjoy the home celebration when they aren’t there, the absence painfully obvious but so much more sane because they aren’t? Will the rest of the family blame us for their inclusion or exclusion? Will extended family support our decision, knowing we’re crying either way?

We do what we can to reconstruct the holidays and celebrations of the times when we were younger and our loved ones were healthy. Some create second weddings so dad can be present because he couldn’t attend his daughter’s nuptials in Arizona. Others arrange for a caregiver to bring grandma to three hours on Christmas morning so she can see her great-grandchildren unwrap gifts. I’m facilitating a Chanukah dessert party at the place where my mom lives, for her, the other Jewish residents, and anyone who wants to stop by for a cookie.

We put together albums with name tags on the photos so our loved ones whose minds are drifting in and out of reality can identify their spouses, their kids, their closest friends. We collect mementos for the shelf in their room, things they can hold and turn in their hands – the carved shell from the anniversary trip to Hawaii, the bronze award for signing the most contracts twenty years ago, the lifetime membership pin for the service organization to which they’d devoted so many years of altruistic fervor.  We coax them to recall names even when they forget them ten seconds later. Even when they are our names. Even when it’s hopeless.

These are the waning years when their moon has left its natural orbit and traverses an alternate route through space. We try to fill their mutilated minds with lifelines and safety nets and touchstones, hoping for memories to be lastingly imprinted. But it is only on our memories they’ll survive, and we wearily know that too, the failures of all our efforts. My mom’s brain will continue to retract, to default to a younger and younger self as she seeks familiarity.

And I’ll find solace in my memories of the occasions when we all gathered to light candles and say blessings for the wealth of our lives. When Mom was well a very long time ago, when my dad was with us. We take our ill loved ones to Grandmother’s House wherever it might be, and there we wait, praying for a few moments of shared joy and the flicker of recognition that makes all the work worthwhile. See you at home, Mom, see you at home.

 

 

Note: I’ve written a novel about the devastation Alzheimer’s forces on families. It’s in the process of being edited, and then I’ll start querying for an agent to represent my work. My credentials for writing this story are sixteen years of assisting my mom through the labyrinth of this illness.

 

Image courtesy Pixabay

Five Across, Four Down

That which we encounter everyday should be that which we celebrate. That which we celebrate can be that which teaches us how better to do what we love. And that which we love can inspire us to write, even when we think our inspiration took off with the last Mongol invasion of Central Asia.

Crossword puzzles occupy a lot of my time, especially true in the last eight years. I don’t have an obsessive love of crosswords, but my mom always did. A pop-in visit to see my folks was as likely to be met with the urgently asked, “What’s a seven letter word for something important?” (gravity) as a heartfelt, “Glad you came by.” Right there, the beginning of a story for NaNoWriMo. Whose mom wants the right puzzle word more than a visit from her progeny? Yours, course. (Well, mine, but you know what I mean.) You thought you were empty headed, completely bereft of words to fill a book, and yet right in front of you, there they are: words a-plenty. Just have to pluck them from her puzzle and plop them into your 50,000 word story.

After my father’s death, crossword puzzles became a link between mom and me, one of the essential strategies for keeping her Alzheimer’s diseased brain as highly functioning as possible. We work them together, and I’m still amazed that she often knows answers I don’t. (Clue: Precedes while. “Erst,” she said. Oh yeah, erstwhile. Now I get it.) These clever word games have taught me a lot in eight years, skills I didn’t know I needed but now seek to augment as much as possible. The more I sit beside my mom, helping her focus on crossword clues and answers, the more I learn about writing. There’s another NaNoWriMo story waiting for a keyboard, should I want to use it: cross word puzzling through mom’s illness. Sort of a mental travelogue.

Patience, spelling prowess, trivia knowledge, peculiar humor, vocabulary building, archaic words, unusual context, flash fiction, courage, tenacity, personal relationships – all these are benefits of doing crosswords. All are applicable skills for writing.

I’ve developed the patience to work at solving a puzzle even when I know the answer is in the back of the book. There’s a certain satisfaction when mom and I complete an entire puzzle and we haven’t cheated once. She contributes about one tenth of the answers, an amazing fact given her condition. The rest is up to me and I’m often stumped. I lean over the book, staring at clues and wondering what could have possibly been on the puzzle creator’s mind to have written such an obscure clue. Kiln: oast. She knew the answer and spelled it correctly. I didn’t. (By the way, beer lovers, did you know that the hops were dried in an oast? What interesting trivia we gather in puzzles.) By the time we’ve finally completed the challenge, I’m thoroughly pleased for having stuck it out. Mom beams. I write a personal note across the top of each puzzle to its creator: Harry, can’t you find any modern words, or, You’ve got a sense of humor, Martha, a wicked one, but humor all the same. Mom loves reading the notes later in the week so I make sure to write one every time. My silly comments make her smile.  My writing has an appreciative audience. I value whatever readers I have.

Puzzle solving teaches about unexpected humor. Most crosswords incorporate several clues related to the title. “Rare Gems” clues included 20 across: Unpolished. No spaces between words, no hint about how many words needed, and the answer: diamondintherough. The clue for 30 across: Had an appetite for Lillian Russell: DiamondJimBrady. The last clue in the gem category, 40 across: Faceted field: baseballdiamond. I groaned that it wasn’t a fair clue, but mom reminded me, “It’s just crosswords.” I grinned. She was right, and it was funny to think about diamonds in so many ways. Rare gems indeed.

A writer needs a broad vocabulary, an internal thesaurus stuffed with words to suit every occasion. Especially useful for me was the reminder that rectos are “right hand pages” (the answer to 14 down,) and then I remembered that left hand pages are verso, which brought me to recall that a leaf is paper with two sides. Yes, all paper has front and back, but a leaf has writing on both sides. Now I’m on to leaf with all its meanings and applications. Every tot learns to gather leaves as soon as she can toddle outside, but leafing through a book has more to do with recto and verso than biology. Leaf sounds poetic to my ear while bract is emphatic, frond drifts in the breeze, pad sunbathes, and petiole and stipule put me back in seventh grade science class. The puzzle proved a useful meandering through related words as a leaf is a major player in one of my books. At my next revision, I’ll check for variety and intent of its synonymous words.  At the moment, mom wants to know what clue I’m reading, and we move on. Alzheimer’s doesn’t make her want to wait for me.

The puzzle entitled “Cut Me a Deal” provided a mini course in flash fiction. The answers included (I’m making it easy on you by separating the words, though the puzzle didn’t) Shuffle the deck, Shuffle off to Buffalo, Stacking the deck, and Deal me in. That’s a pretty generous prompt for writing flash fiction. The story is nearly there; all you need is a main character. So, Ronald Rucinski, you thought you were just a puzzle crafter, cribbed in your corner with naught but the computer light fending the darkness of the room. Now you’re also a high stakes player in a grimy casino off the main drag in Las Vegas, trying to bolster your flagging bank account with a poker faced attempt at betting the bank, working the room, and raking it in. “Deal me in,” Ronald Rucinski said, sliding his toothpick between the amber ivories in his mouth and narrowing his eyes as the dealer shuffled the deck. He hoped the slick bastard didn’t stack the deck like the last chiseler. As a story, it needs work, but all work needs more work. Still, it’s a start, and all stories must start someplace. “Cut Me a Deal” is even a decent working title.

Mom and I exhibit courage when doing puzzles. We write in pen. Pencils dull too fast and I have the courage of my convictions, though evidence suggests I’m often wrong. A writer must be courageous as she faces that blank page each day, grasping at flitting words and forcing them to her tome. Commit to the pen and you’re halfway there. OK, maybe a hundredth of the way there, a thousandth, but still, have pen, will write, and there you are, off on your book’s journey, wherever it may take you, down the occasional false path, but writing all the time. Writing quickly, as NaNoWriMo demands, because 50,000 words can be wrought from crossword books, but you still have to arrange them in a story order of some kind.

The more I’ve worked crosswords with my mom, the more I’ve learned about life. The more I learn about life, the better I write. It’s been an odd place to glean an education and a peculiar way of building a relationship with an ill person. Thank you, Mom, for all you’ve given me, 50,000 words and more. May God protect you and keep you as long as possible from the worst ravages of your disease.

 

 

Crossword puzzle image courtesy: Wikimedia.Commons

 

 

Prayer

At the beginning and the end of all the grief of loss of someone we love, whether to death or to Alzheimer’s, is a need to figure out how to go on living for those of us left behind.

First to rage.

Next to pray.

Then to forgive.

Finally to turn the earth for a garden.

 

 

Just a Thought 14

 

Memory of the Garden at Etten by Vincent Van Gogh, 1888, courtesy Wikimedia Commons.org

I Suffer from Alzheimer’s

Ростислав Иванович Фелицин (не позднее 1820-х годов-1882) – Печальное известие (Чтение письма) (1856)

I drive home sobbing from the residence where my mother lives. Sometimes instead I rant about the injustice of a disease that kills a person before their body is dead, and kills their supporting family in fragments that leave us bleeding. Every once in a while I catch the glance of the driver next to me, shaking their head at my inattentive driving skills. I’m going to cause an accident if I don’t pay better attention. I know but still I cry or scream.

The stricken want to go home. To the house in Santa Monica or Chicago or Trenton where mommy and daddy live. They wait for their husband to pick them up except he died fifteen years ago. They must meet the school bus and walk the children from the stop even if their children have grandchildren. It’s time to make dinner though they haven’t cooked in over ten years because the last time they poured a bottle of soda into the spaghetti sauce and left the gas burner on overnight. They want to drive their car home. It’s parked outside though it isn’t, they have not driven or had a license for more than a dozen years, and no one will let them leave the locked residence where they now live. Still, they demand to go home because this place is not where they live, and you are a criminal for keeping them locked up. You no good terrible husband – wife – son – daughter. If you loved them, you would obey their demands to go home. You must not love them.

They can’t remember anything that is not a memory less than thirty or fifty years old. Certainly nothing that happened ten minutes ago. Many have no memories at all, which is why they don’t eat when they’re hungry (they don’t recognize hunger) or overeat when they aren’t (they can’t recall having eaten five minutes ago) or devour packets of sugar, pour tablespoons of salt on their food, chew on napkins, use a knife in place of a fork, fingers for their soup, or shove an entire slice of cake in their mouths as if it’s one bite. Loss of memory and confusion over engaging in appropriate daily activities are two sides of this damaging illness.

Daytime activities include playing Bingo and Wheel of Fortune, ping pong, chair exercise, singing, dancing, putting together jig saw puzzles, making collages, spreading paint, glitter, and glue in art class, watching the birds in the garden, dozing, and just relaxing. Occasionally they laugh. Some activities earn pretend money. They shop at the residence store where a few “dollars” will buy magazines, jewelry, sports hats, note cards, scarves, crossword puzzle books, gloves, wallets, socks, handkerchiefs, photo frames, pens, sunglasses, playing cards, and snacks like granola bars, cookies, crackers, or miniature candy bars. The most expensive items are the snacks because it prevents them from over eating junk “food.” Some of the residents walk. Walk and walk and walk and walk and walk. Yes, it is like that for some. They cannot sit or stay put for more than a few minutes because they have important things to do, places to go, people waiting for them. They are busy with activities.

They converse though it’s difficult for me to follow muttered conversations, rambling words, or disconnected thoughts. They smile at compliments and say they love you. They pause when you talk to them, nod at your suggestions to get out of the hot sun, or to watch the day’s entertainer. Then they ignore your words. You don’t speak their language either.

We will not discuss bathroom behaviors except to say you must imagine a two-year-old in the body of an eighty-year-old. We will not describe the stubborn and angry refusal to “freshen up.” We will attempt to forget the humiliation of what is disgusting. They have forgotten soap. Being fastidious. And being clean. But I promised: we will not discuss.

You thought you knew Alzheimer’s disease from the commercials, you who do not suffer. I’m not making fun of you or casting aspersions on your vision or curses on your lives. They are not like those people in the pharmaceutical ads, smiling and agreeable, ready to go for a ride to the park for a picnic or to the doctor’s for a check-up. That’s a ten second view of this disease, and you are forgiven for believing it’s the whole story. How would you know? May you never know otherwise.

When it’s time for me to leave where my mother lives to go to work, to go home, to meet appointments or obligations, I’m overwhelmed with guilt. The guilt weighs me down so I can’t lift my feet without stumbling. The guilt in my gut demands to be fed with sugar and carbs, the garbage that savages my diet and my health. For friends, the guilt in their gut leaves them unable to eat anything at all, and their self imposed fasts savage their diet and their health. We all endure bouts of anxiety, so leaving means we really do not leave – we take our ill loved ones with us. They accompany us throughout our day. They sleep at the assisted care residences but they sleep also in our dreams, our nightmares, and when we cannot sleep for worrying. Hours and hours of sleepless nights, and days of exhaustion to follow.

I do not have Alzheimer’s disease but my mother does. Therefore I also suffer. Now you know why I drive home sobbing.

 

*Painting Sad News, 1856, by Rostislav Felitsin

*The official position taken by the Wikimedia Foundation is that “faithful reproductions of two-dimensional public domain works of art are public domain“.

This work is in the public domain in its country of origin and other countries and areas where the copyright term is the author’s life plus 100 years or less.

This photographic reproduction is therefore also considered to be in the public domain in the United States.

Alzheimer’s Pledge

I got you, Mom. If you fall, I will be there to catch you. You have Alzheimer’s disease, and you need someone on your side all the time. I promise to protect your physical presence in the world, even if you have no idea that’s what I’m doing, even if you get angry with me, even if you’re fed up with the whole damned thing. Which you are much of the time. Which I am much of the time.

I am your durable power of attorney for healthcare, your POA. It’s not a position I asked for but I’m happy to do this because you need someone. Every person who suffers from Alzheimer’s needs a POA because that person’s mental and physical health will never improve. It will decline forever until they die. During this term – long, short, agonizing, foreign – someone with the best interests of the ill person must make decisions about medical care. By this I mean all medical care and overall health care strategies: dental, vision, podiatry, bones, hearing, emergencies, daily pharmaceutical regimen, routine examinations, emotional well being, yearly vaccines, food and liquid needs, haircuts, X-rays when indicated, injuries – every aspect of body function. It’s a titan of a job, because caring for another human being is a titanic responsibility.

There’s no remuneration. It’s a freebie, like you were a freebie mom to me when I was little. Except of course, I got older and learned to do more and more on my own, and as all Alzheimer’s victims, you are less and less capable of doing anything, or learning anything new, or becoming more independent. You and Dad probably chose me because I’m the oldest and the one who lives closest. I’d like to think I also proved other noble and noteworthy qualities for the position, but likely, it was just the first two: oldest and nearest. Of course, you never thought you’d need me. You thought you’d both maintain your mental and physical capacities to care for yourselves without interference from anyone else. Still, thank heaven you chose someone, because who knew, right? Who knew you would one day need an advocate?

And this is where it has brought us. You struggling with the daily failures and disorientation that mark your illness, me wrangling with the daily tasks and quandaries of making your life easier, safer, as healthy as possible.

You don’t know that I’ve written a novel about a family trying to find a safe haven for their mother who has Alzheimer’s disease. It’s being edited while I write this, and I hope to submit to an agent I hope will love it and submit it to an editor. It’s a story that needs to be told because other people need to read about the difficulty of finding just the right place for their loved one to live. I started writing it about three years ago. You were long past the time when I could ask your opinion, consult on the accuracy of the plot, discuss the characters.

And I know the first thing you would have said to me, were you able. “You’re not writing about me, are you? Because my life is private and you have no right to tell anyone else about my troubles. It’s not their damned business.”

So here is my pledge as your oldest daughter and your POA, as the person who advocates in your best interest.

 

Dear Mom,

Nearly everyone already knows you have Alzheimer’s disease. Most people spot it the moment they see you, it’s that visible, like a tree floating rootless above the ground. You couldn’t miss it. And that’s the sum of what everyone knows, because you are right. Your life and health are not their damned business. I promise not to tell anything about your personal life.

Tales about “what my mama told me” are all fabrications, far from the truth and employed only as tropes. They are a way to describe situations that are far from the asymmetric orbit of your life. They are not about you.

The book I’ve written is not about you, our family, or the place where you live.

The articles in this series about Alzheimer’s on my blog, Ink Flare, are not about you, our family, or the place where you live.

You are hanging by the slimmest filament to life here on Earth, but I respect you, and all that you’ve always stood for: a sense of dignity, a right to privacy, a demand to keep your own secrets.

I will not betray you. I will not answer questions. I will not speak in asides. I will not reveal your quirks or problems. Your life still belongs to you, no matter how alien your current experience may feel.

That’s my promise to you, Mom. What I write and what I tell is not about you, and never will be.

Not because I’m your POA.

But because I’m your daughter, and I care, and I got you.

All my love,

Shari

 

 

Photo portrait of woman courtesy Max Pixel

 

 

 

 

Don’t Know Much about Alzheimer’s

I don’t. Despite the fact that someone to whom I’m very close, someone I love, has suffered from Alzheimer’s disease for almost two decades, I don’t know much. If you want the science facts: search the Internet, contact your local Alzheimer’s Association, attend support groups and conferences. They are your best resources. I know the basics, of course, but the full history, science, probable outcome, care giving tips, and research on cures – other places will get you more accurate and current information.

This is what I do know: how it feels to be on the inside. If you are a family member, you are as confused, angry, and miserable as the person you love who suffers from Alzheimer’s. In their situation, they rage, weep, howl, throw things, and demand to go home. When you witness their fury, you demand to go home. If they don’t live in a residential facility designed to care for them, and if they live with you, you demand to get the hell out of there. When you leave the place where they reside, you drive dangerously because you are in tears or you’re fuming or you’re demanding of God and all the gods: Where is the justice or fairness of this horrendous disease? And when the hell will it end?

Not just when the hell are they going to find the right pharmaceuticals to stop it or slow it down, when the hell are they going to develop a vaccine to prevent it, when the hell are they going to have the medical protocol to reverse it. But when the hell is the hell you and your loved live every day of your life going to end? And the self-recrimination that erodes your soul because you are more aware than anyone on earth that it will end, at least for your particular loved one who suffers, and for you who also suffer, when they die. And that’s hard to face – your own admission that they’ve had enough of this frightening illness that keeps them from knowing where they are, who they are, and when they can get back to something pleasantly familiar. Your own admission that you feel exactly the same – when can you get back to something pleasantly familiar?

You must begin with language, an odd requirement as the loss of appropriate language is one of the identifying marks of the disease. For us, language is not elusive – it’s inadequate. All the superlative words you may summon are nothing compared to how you feel. Try “angry” – you are way beyond angry, you are enraged, you are furious, you are near homicidal, but who would you kill? How about “despair” – you’ve fallen into the depths of anguish so deep that you’re certain you no longer reside on Earth, yet there’s nowhere for you to go. Or think of “regret” – is there some way to explain how sorry you are for everything you may have done to have caused or exacerbated this illness, so you may return to the way things were?

At least I have the answer to that last one – nothing. You did nothing. Likely your loved one did nothing either. Because despite all the warnings about avoiding inflammation and good diets and lots of healthy activities, the evidence that none of that is any protection lives in the same facility where your loved one lives. Doctors, astronauts, engineers, inventors, teachers, entrepreneurs, nurses, physicists, artists, clergy – they are not just the visitors: they are the afflicted. They are the ones who have forgotten they once headed the pediatric ward at a hospital, or worked on the security team for NASA, or started a well known business still serving the needs of millions of people across the country, or spoke words of faith to the congregation. Because they have forgotten everything — what they ate for breakfast, your name, perhaps their own name, and eventually the ability to speak at all.

Superlative language is a pile of gunk. It doesn’t fit the situation. Make a list of words for yourself – best, first, most, last, worst, hardest – and eliminate everything not strong enough, or descriptive enough, or just plain not expressive enough. You’ll be left with what your loved one is left with: nothing. Zilch. Nada. Bupkes. A big freaking blank. Language as we know it doesn’t touch our desolation. Or theirs.

And how, you wonder, do I, a getting-older woman who’s written six books and one more in production stage, none of which have been published, who was an art teacher and a religious school teacher of decent but really ordinary rank, have the nerve to write about Alzheimer’s in the first place? What gives me the inside edge to write with authority, to point the way for others lost in the fog, and to offer, God forbid, advice? Following is the answer.

My mother has Alzheimer’s. Your husband or wife, your mother or father, your sister or brother, your best friend or closest advisor, your neighbor or colleague has it. Someone you know suffers. I’m going to help you here, you who stand by the side of the person you love. My credentials are not based on science. They are based on proximity and endurance, neither of which I asked for, neither of which my mother asked for.

As an artist, I’ve been trained to see the details, the outlines, the comprehensive whole by which I’m able to project a visual image others can recognize. As a teacher, I’ve been trained to pay close attention to the total affect of my students and to the way they internalize information so they can actually learn something. I know how to describe what’s going on.

And that’s what I’m going to do. I’m going to describe what’s going on with those who suffer from Alzheimer’s, though not the scientific or medical portion of this illness. I know what happens to  the others who suffer – the family loyally by the side of the afflicted. I’m a warrior here. I’m going to report on the front line battles and back end skirmishes from the point of view of a dedicated observer.

Come back. Future posts will address the issues for which the medical community has no answers. I may not have the answers either, but I know the paths on which you will journey and I will help illuminate them. And why, you ask, why her, the writer, the teacher, the artist? What are her credentials?

I care.

And in case you’re wondering: no one knows enough about Alzheimer’s disease.

 

 

Photo of woman crying courtesy: maxipixel.freegreatpicture.com  – Creative Commons Zero – CCO