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dementia

 

Living Where Everything Is Forgotten: A Mother and Son’s Struggle Toward a “Dementia-Friendly America

Tuesday, June 7, 2016 at 8:48 a.m.

By Robrt L. Pela

 

GUEST BLOG

 

“My mother is washing dishes. She’s using a paper napkin she found in the kitchen sink, and a little bit of leftover coffee from a mug on the counter. She scrubs at bits of egg stuck to a fork, sets it next to the saucer she’s just cleaned. Then she grabs the saucer, wets the napkin with the coffee, and washes the saucer again.

 

“Hey, Duchess!” I call to her from across the kitchen. “What’re you doing?”

 

“I’m getting all the train books ready,” she replies, looking cross. “She said they were eight coming, the children.”

 

She moves to the refrigerator, and begins to gather food for the people she imagines are on their way to this house where she has lived for 50 years: a half-empty Tupperware of minestrone, a hard-boiled egg, the bowl of oatmeal she refused to eat this morning. (“It’s too spectator pump,” she had complained, pushing the bowl away.) She piles these things onto the kitchen table, then heads off to her room, probably to dress for her phantom company.

 

By the time she arrives there, my mother will have forgotten what she wanted. Her 10-year-old Alzheimer’s diagnosis was recently reclassified; she’s now a 6 on the Global Deterioration Scale, a means of measuring the depths of dementia that tops out at 7. The Duchess will arrive at her bedroom, become distracted by something — a lampshade, her framed wedding portrait, my dead father’s key ring — and dressing for imaginary company will be forgotten. These days, for Maria Domenica Clemente Pela, pretty much everything is forgotten.

 

I don’t follow her to her room. I’ve got a kitchen to clean and a stack of insurance papers to fill out before I take the Duchess to her quarterly oncology appointment later this afternoon. A decade ago, I took my time with things: finished a project only when it was perfectly complete; awoke when I was done sleeping. Today, I’ve learned to take shortcuts. There’s never enough time to do everything, or to do anything especially well.

 

I am what is politely referred to as a caregiver.

 

I spend most of my days and some of my nights here at the suburban West Phoenix house where I grew up in the ’60s and ’70s, where my 91-year-old mother and I have been playing a decade-long game ever since she began losing her mind to Alzheimer’s disease: She is the Duchess of Pela, and I am her minion. I awaken her, bathe her, dress her, and feed her, after which she sits in her kitchen, a gentle expression fixed on her face, reading and re-reading the story of her life, a 249-page, handwritten essay she composed a dozen years before she began forgetting who she was and where she lived. Several times a day, she looks up from her journal. “Have you read this?” she implores. “It’s good!”

 

In the afternoons, the Duchess is restless. Her journal no longer holds her interest; she refuses to play with her little box of paste jewels. She’s anxious to get home to the house in northeastern Ohio where she hasn’t lived since 1942, worried she won’t be able to find it on her own. She paces, maniacally tidying her kitchen, distracted by some puzzling chore she must complete but can’t quite fathom.

 

I’m distracted today, too. I’ve received a press release announcing that Tempe has joined the Dementia Friendly America initiative. Introduced last summer at the White House Conference on Aging, this yet-unfunded program means to create a “national dementia friendliness,” one city at a time, by training individuals, businesses, and first responders to recognize and respond appropriately to people with memory impairments. Thirty-six towns and cities in Minnesota, where DFA was launched last year, have adopted the initiative’s four-phase roadmap; in March, Tempe became only the sixth city outside Minnesota to join the dementia-friendly fray.

 

How’s that going to work? I wonder, as my mother ambles into the kitchen carrying three handbags and a toilet plunger, a wilted brassiere wrapped around her wrist. How is an entire city going to learn to deal with old folks who insist that Herbert Hoover is president, people who can’t tell a bra from a bracelet?

 

The very idea of a dementia-friendly world strikes me as preposterous. I can’t convince the respite care workers I sometimes hire, who are supposedly trained to deal with the memory-impaired, not to tell my mother that her husband died three years ago. She thinks she’s 9, and little girls don’t have husbands. It upsets her to hear otherwise. Some of the medical professionals who look after the Duchess, when told she has Alzheimer’s, speak more loudly, as if volume adds clarity — even though she’s not hearing-impaired. If I can’t get my mother’s own children and grandchildren to take part in her care, how can Tempe expect to sell sensitivity training to a reluctant universe of clerks and bankers and doctors?

 

“Is this yours?” my mother asks, holding out the toilet plunger.

 

“Yes,” I lie, taking it from her. “I’ve been looking for it everywhere.”

 

“Well,” says the Duchess, looking me up and down. “It doesn’t look like it’s going to fit.”

 

The statistics are bleak. According to last year’s annual report from Alzheimer’s Disease International, the number of people with dementia worldwide has grown to just shy of 47 million. That figure is expected to double by 2030, and to triple 20 years after that…. For now, one in nine seniors has some form of dementia. Arizona alone will see a 71 percent increase in the number of residents with dementia over the next 10 years.

 

….There are other hurdles to a dementia-friendly anything. According to that ADI report, about half of all dementia patients go undiagnosed, in part because most people figure there’s no point in being diagnosed when there’s no cure.

 

“We’ve got a long road ahead of us,” Jan Dougherty tells me when I call to ask about this Dementia Friendly thing “Right now, dementia is where cancer was in the ’60s or HIV was in the ’80s,” Dougherty explains. “People are really just starting to talk about this disease openly. There’s more education on the stupid Zika virus than there is on dementia. But we have to start somewhere.”

 

The program is designed, according to that press release, “to help communities better understand, embrace, and support residents living with dementia.”

 

Okay. But how? I watch an animated video on the DFA website in which ethnically diverse line drawings are made happier because everyone they meet knows how to interact with dementia patients. According to the cartoon, DFA will educate local businesspeople about how to support customers with dementia, convince employers to support employees who are caregivers, and teach law enforcement and city service providers how to deal with the demented. DFA is also proposing changes to transportation, public spaces, and emergency response that would allow people with dementia to interact in their community.

 

In some cities, “memory cafes,” where memory-impaired people can gather, have made it onto the must-have list. Businesses will all, according to this plan, one day post a logo on their doors.

 

“To ask priests and rabbis if they want to learn more about dementia?” I ask. “To request pro bono representation for Alzheimer’s patients?” I apologize to Mitchell for being slow on the uptake.

 

But even with the help of the little cartoon, I’m still struggling to grasp how Tempe will implement a program whose four phases include vague bullet points like “Form a community engagement sub-team” and “Develop an organized process flow and timeline,” and wraps up with “Create and implement a community action plan.”

 

“One person at a time,” Mayor Mitchell replies. “Fifteen hundred people in my community have dementia, and I need to get the city educated on how to help them.”

 

Okay. But would Mitchell have climbed aboard the dementia-friendly bus, I ask, if his own mother didn’t have Alzheimer’s?

 

“I don’t know,” he answers. “Would you be writing a newspaper article about it if your mother didn’t have that same disease?”

 

Touché, Mayor Mitchell.

 

The Duchess and I are seated in the waiting room of her new general practitioner’s office, waiting for the results of her annual tuberculosis test. She is stressed out about getting home late for supper and being grounded by her father, who died in 1958, and I am entertaining myself by counting the number of times she tells me she hasn’t any pancakes in her purse (17 times so far, and she’s not carrying a purse today).

 

The woman seated across from us smiles at me. “My mother had dementia, too,” she quietly confides. I return her smile and think to myself, Okay, I’m about to have this conversation again.

 

“I took care of her for two years before we had to put her in a home,” she is saying, and I’m thinking, Two years? Really? Two.

 

“How difficult that must have been for you,” I say. “And how does she like it there?”’

 

“Oh, she died three weeks later,” the woman replies, after which the Duchess and I excuse ourselves and move to the other side of the waiting room.

 

A little while later, we’re taken to an examination room by a nice medical assistant named Juanita, who talks baby-talk to my ancient mom.

 

“Will you get up on the scale so we can weigh you, please, Miss Mary?” Juanita asks with a big pout, her words all syrupy, rounded vowels. The Duchess shoots me a look that clearly says, Get this person away from me! and I look back at her with an expression that replies, Oh, right, you’re the parent I inherited my crummy attitude from!

 

“My mother has late-stage Alzheimer’s disease,” I explain to Juanita as I pantomime how to get on and off the scale. “Sometimes showing works better than telling.”

 

Juanita smiles at me and turns to the Duchess. “Have any of your medications changed since last time you were here, Miss Mary?” My mother begins a long, disjointed explanation of why she chose to wear this particular pantsuit, indicating the sundress I’d put on her that morning. Juanita turns to me.

 

“Is she always like this?”

 

“She has late-stage Alzheimer’s,” I remind her, handing over an updated list of medicines. My mother is still trying to tell her pantsuit story when the doctor joins us. Rather than talk to my mother as if she were a precocious toddler, he ignores her entirely, speaking only to me. It turns out Her Majesty does not have tuberculosis.

 

When we get home, I put the Duchess down for a nap and then I call Olivia Mastry, the executive lead for Dementia Friendly America. I want to ask her, “How come everyone gets to have a mother who dies except me?” I’d like to say, “How come health-care workers all call my mother Miss Mary, as if she were a plantation owner in antebellum Atlanta?” Instead, I ask how much importance DFA plans to place on training medical professionals to deal with demented people.

 

Plenty, she promises. “We have tools and resources that guide each sector of the community, and there’s a real emphasis on physicians and their staffs. It’s not all clergy members and clerks. We’re still defining what dementia-proficient means for medical workers, and once we do, everyone from doctors on down will be held to a standard.”

 

Really? Training the entire medical community seems like a pretty tall order. I call Dr. Pierre Tariot, my mother’s doctor at Banner Alzheimer’s Institute, and ask him if this seems doable to him.

 

“While Dr. Tariot and I are saying our goodbyes, the respite care worker arrives for her twice-weekly shift. “Hellooooooo Miss Mary!” I hear her cooing in a voice typically reserved for really cute puppies. “Remember me?”

 

Maybe, I think to myself, I’ll die in my sleep tonight and I won’t have to deal with any of this anymore.”

 

 

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Tom and Karen Brenner have responded to my post two years ago about the Montessori Method for use with the elderly in dementia. I am reposting this with their note on their newly published book, “You Say Goodbye and We Say Hello.”

Napkinwriter

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I am currently looking into the work of Karen and Tom Brenner of Brenner Pathways. I am inviting you to visit their website  www.brennerpathways.org  and view the amazing video “Montessori Stepping Stones – Brenner Pathways.  As I am a devoted enthusiast of Montessori for the young, their work in employing Montessori Sensorial learning with dementia and Alzheimers patients has really caught my attention and interest.

I share below a writing from Karen’s website blog with a good reminder for us (who can) “remember” not to use the word remember with our afflicted loved ones. This is precious to learn.  I decided not to paraphrase or describe what she has said here, for she says it only too well.

From the writing of Karen Brenner MA

“Did you know that there are different memory systems at work in our brains?  One of those systems is the declarative memory system. This is…

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Tom and I have been getting our affairs in order. We’ve received no bad news or anything like that. We anticipate and look forward to a very healthy and happy 2014. But we have “basement issues” with unsorted boxes and papers from our foray of frequent moves and we’ve bravely decided to tackle just a bit of it.

Some of that includes straightening out the fireproof box and making sure records are current and pertinent.  I was mom’s durable power of attorney and we’ve just passed the 6th anniversary of her death in November 2007 so I walked down memory lane a bit before continuing on my task.

Mom was at Hazel Findlay Nursing Home in St. Johns, Michigan when she passed, a long-term resident with Alzheimzers disease. Even without her speech, mom could, nearly up to the end, brighten a worker’s or visitor’s day with her cheerful smile and laugh.

Before entering residential care, mom was living in an apartment near her sister in Indiana. When she visited us, she loved to dote on our cat, Bradley. She kept up a pretty bright conversation with him, and saw him only through compassionate eyes of love. They were pals.

Mom’s been on my mind lately anyway, not just because of the paperwork but because it is Thanksgiving season turning quickly into pre-Christmas season. These were festive times for mom and baking was her speciality. I, in fact, was boasting about her famous pumpkin pie (like none other) that was a cherished heirloom in our family at our October high school reunion luncheon and found myself promising to bring the proof to our November luncheon.

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Six pies later, I had pretty wide acceptance that her pumpkin pie was pretty darn good. Mom took out all the stops during this season with her baking. Many traditional Norwegian specialties plus the always-loved sugar cookies cutouts, the confectioners sugar pecan balls, and many others that were stored all over the house and somehow kept fresh right up to the holiday. Mom gave much of it away, but my two brothers and I were lurking when ever we could to capture an extra one or two when nobody was looking.

They may not have been looking, but once in awhile we heard from far in another room, “You kids, get out of the kitchen!” How did they know?

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Tom was reading the newspaper one night and said to me, “Oh, guess what is the secret ingredient to the best pumpkin pie.” I bit (no pun intended) and answered, “Ginger.” “Wrong,” he said. “Love.”

By the time Thanksgiving had come and gone, I had added four more pies to my production for family. And I have to agree. I know mom’s baking came from love. And my own? Surely, love is the added ingredient that was enjoyed by all.

About three years before mom died, I wrote a poem at an IWWG Writers Conference I was attending in New York. As I did in every visit to mom, I also tried, in the poem, to get behind that mask of Alzheimers and touch my mom by calling out her identity. This is the poem.

Her Name is Marion
by Susan Heffron Hajec

She is somebody
her name is Marion.
She is somebody
she is my mother.
She is somebody
she is ill with Alzheimer’s.

She is somebody
she is the delete key that’s been
mistakenly pressed on the computer of life.
She is the jigsaw puzzle
with the missing pieces.
She is the finished recipe
minus a key ingredient.
She is the sunset
blocked from view.
She is the wrapped birthday present
without the signed card.
My mother is somebody
Alzheimer’s is the lurking bandit.

My mother is somebody.
She is the gentle sensation of peach fuzz
on my cheek.
My mother is somebody
She is the beckoned smile from a baby.
My mother is somebody.
She is the organizer in a house of chaos.

She is somebody
her name is Marion.
She is somebody
she is my mother.

                    Skidmore 2004

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SoulCollage South Africa facilitators

Catherine Anderson’s First Class of SoulCollage Facilitators
in South Africa in 2012.

I am so excited to be taking SoulCollage Facilitator training from marvelous and inspirational artist extraordinaire, Catherine Anderson in Charlotte, NC in early August this year.

I completed my initial training with Catherine last year in a wondrous visit to her charming and spiritually energetic studio, filled to the brim with image and word resources, plus her own abiding Presence.

I look forward to incorporating this SoulCollage practice into my own personal life and into the life of Souljourner at-Large LLC programs and retreats. It is all coming into view and purpose for me.

I say yes to it all.

Anderson - Sue's Soul Collage Dave

This is my soul collage card that “breathes my heart”. I made it in Catherine’s workshop. It tells of the voyage I’ve had with my “big brother,” Dave who is now travelling in the misty paths of Alzheimers.

Dave is on the twilight journey of the canoe paddler, (or perhaps it is the dawning of a new morning experience of life). He is alone but not alone. There is the dandelion whiffs of memory within me of Dave holding his little sister secure in the flower of life, pulling the wagon with little sis in it, establishing a fulfilling brother-sister relationship through personal letter writing.

Toward the top of the card, the message  of the card is”heard and read” by me in the silence of completing the card.

The message I hear internally is that a candle will light his way now and the flame of my love accompanies him. I add a little chocolate for sweetness on the cobblestone path he walks within the disease. There will be peace within each of us as we give way to the path that is before us and that is ours alone to walk. But truly not alone. That is a message I needed to hear. It has shone light upon my path and it acknowledges for me that Dave’s path is blessed.

This soul card has given me great comfort as the distance between us grows and I look for the grace in aging. It is there. I must agree and sit within it. All is well in this world.

Soul Collage  Facilitator Training at Catherine Anderson

SoulCollage Cards from Catherine Anderson’s
Facilitator Training in March 2013 at her Charlotte NC Studio

Seena Frost is the founder of SoulCollage. She puts forth a great question to us:

SoulCollage - Seena Frost founder

Seena Frost, SoulCollage Founder

SEENA’S CORNER

Most people still have the hierarchical world view that views real change as coming primarily from the top and seldom from down where “we” live; so, we vote, then sit, watch the news, and feel helpless. What if this belief could shift? What if more and more people begin to feel and know themselves as being deeply interconnected with the whole fabric of the planet? …Could doing SoulCollage® help people develop, at a Soul level, this perspective of interconnection?

When we speak from our cards, we often are surprised and excited by the synchronicities and connections that show up. We begin to awaken to the reality that, deep down, we are as interconnected as the millions of cells in a physical body.

~ Seena Frost
Founder of SoulCollage®
(April 2011 Neter Letter)

Do you have a big pile of images you have saved in the closet or under the bed that you have been waiting to figure out what to do with?

Soul Collage - Labyrinth of Messages

Find a Labyrinth of Messages coming forth from your Cards.

I am eager to find ourselves sitting together, creating the images that will touch the deep wisdom within us. It will also give the SoulCollage creator a resource available to them at any time to “go within” and hear how the image speaks to them over and over again.

I will be able to help you do this in a short while. In the meantime, start collecting images that attract you for no apparent reason at all and ones that you just know belong to you. They give you a little jolt inside, they brighten up your attitude, they draw forth awe and respect for you, or they feel happy, joyous and free.

Just begin building the pile.  You will be fascinated how they create your cards “instantaneously” and with deep purpose.

This is just plain fun. And after that, you get the bonus of knowing these cards have always belonged to you.

Thank you, Catherine, for the great introduction of SoulCollage to Napkinwriter, as a glorious new way of writing.

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I am currently looking into the work of Karen and Tom Brenner of Brenner Pathways. I am inviting you to visit their website  www.brennerpathways.org  and view the amazing video “Montessori Stepping Stones – Brenner Pathways.  As I am a devoted enthusiast of Montessori for the young, their work in employing Montessori Sensorial learning with dementia and Alzheimers patients has really caught my attention and interest.

I share below a writing from Karen’s website blog with a good reminder for us (who can) “remember” not to use the word remember with our afflicted loved ones. This is precious to learn.  I decided not to paraphrase or describe what she has said here, for she says it only too well.

From the writing of Karen Brenner MA

“Did you know that there are different memory systems at work in our brains?  One of those systems is the declarative memory system. This is the memory system that affects short term memory, language, facts, recent episodes and executive function (the ability to make large and small decisions.)  This is why a person living with Alzheimer’s often cannot remember things that happened five minutes ago, or remember the names of loved ones, or struggles to make the simplest decisions. Just as the lyrics from the old Frank Sinatra song describes:

“It seems we stood and talked like this before. We looked at each other
in the same way then, but I can’t remember where or when.

For someone living with Alzheimer’s, it is as though someone walks in every five minutes with a magic wand, waves the wand, and poof, everything that just happened to them in the last few minutes disappears. This disappearing act happens every few minutes, all day long. Can you imagine how frustrating, how frightening, how aggravating this must be?

It is often made even worse by well-meaning caregivers who insist that the person:

“Just ate dinner ten minutes ago, don’t you remember?”

“Just saw your daughter this morning, don’t you remember?”

“Just went outside for a walk, don’t you remember?”

The problem is, of course, that people with Alzheimer’s don’t remember these episodes that just happened. That magic wand wipes the slate clean again, and again, and again.

To make our lives and the lives of people living with Alzheimer’s a bit easier, we recommend that you lose the word “remember.” This is not an easy thing to do. In the course of a conversation, it is very natural to ask each other if we remember a person or event. But, for the person living with Alzheimer’s, asking them to remember is like asking them to jump up and fly around the room.

Declarative memory also affects language, and that is why people living with Alzheimer’s often struggle to remember names of people or names of common objects…
We all do a little of this ourselves in our daily lives. We’ve all had the experience where a word is right on the tip of our tongue but we cannot find it…. But, for the person living with Alzheimer’s, the constant struggle for words can be exhausting and enraging.

Many times when we are working in a nursing home or an adult day center, we will hear family members or friends pleading with their loved one who has Alzheimer’s, “You remember, Mom. They lived next door to us for forty years! You have to remember them. She was your best friend!”

Because of the impaired declarative memory, people with Alzheimer’s are often not able to remember names or faces of people they have known most of their lives. Trying to convince them otherwise is not going to help. We have to understand what they are dealing with; there are parts of their memory that are simply gone.

….To keep the ones we love in our life, it is important to understand that occasional fleeting moments of recognition or remembrance are causes for celebration, not despair. Rather than constantly mourning the loss of the person we knew and loved, we must learn to appreciate these brief encounters, these moments of connection.

We must learn to see them as little gifts that flash brightly and leave just as suddenly as they come. If we can learn to enjoy this flash of connection, these little moments, we can have the people we love in our lives again, not, of course, as we used to have them in our lives, but still with us, one brief moment at a time. These moments of recognition, of connection, are like little jewels that are strung on the necklace of time.”

Written By Karen Brenner – September 14, 2011

Karen Brenner has worked in the field of education for 30 years as a teacher and administrator. She co-founded Montessori schools in the Chicago area, one of which specializes in the education of children who are deaf or communication disordered. She is co-founder with her husband Tom of the consulting and educational company, Brenner Pathways. Tom Brenner holds an MA in Gerontology and has been working as a trainer, writer and consultant in the field of aging for many years. Together, they employ the Montessori Method of sensorial learning with elderly group home care of dementia and Alzheimers residents.

www.brennerpathways.org

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Mom & Grandma Marion with Laura Sue

                                    Her Name is Marion

                                                         Susan H. Hajec

                    She is somebody
                               her name is Marion.
                    She is somebody
                               she is my mother.
                     She is somebody
                                she is ill with Alzheimer’s.

                     She is somebody 
                                she is the delete key that’s been
                                     mistakenly pressed on the computer of life.
                      She is the jigsaw puzzle
                                 with the missing pieces.
                      She is the finished recipe
                                  minus a key ingredient.
                       She is the sunset
                                  blocked from view.
                       She is the wrapped birthday present
                                  without the signed card.
                        My mother is somebody
                                   Alzheimer’s is the lurking bandit.

                        My mother is somebody.
                                   She is the gentle sensation of peach fuzz
                                            on my cheek.
                         My mother is somebody.
                                   She is the beckoned smile from a baby.
                          My mother is somebody.
                                    She is the organizer in a house of chaos.

                          She is somebody
                                    her name is Marion.
                          She is somebody
                                    she is my mother.

                                                  written at IWWG, Skidmore 2004.

In the photo above, mom is with our firstborn daughter, Laura Sue, dressing her for her Baptism in Lexington, Kentucky in July 1966. You can tell by the instant, strong eye contact that they had a most precious bond throughout mom’s life. I remember being so proud to share our daughter with my parents — what an immeasurable blessing it was for us all — to be duplicated once more two years later with the birth of our second daughter, Kathleen Marie.

My days continue as a mom and I have many happy days, not just one a year because I am a mom.

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