Browsing Tag

alzheimer’s disease

Reflections
The Longest Day

I looked back into my journal from this day last year. My mother had been dead for just over 4 months and I was still thrashing beneath the weight of my grief.…

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June 22, 2018 by elizabethgracewolf
About

Hi. I am Elizabeth Grace Wolf – eldest daughter of Anna (aka Nancy) and Louis Brood. When I was in my twenties, both my parents were diagnosed with Alzheimer’s disease within 4…

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December 7, 2015 by elizabethgracewolf

upsidedowndaughter

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Oct 8

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So proud of my friend @jeff_borghoff who is speaking at the #walk2endalz today in Atlantic City, NJ about living with early onset Alzheimer's Disease after being diagnosed at the age of 51. He is also a caregiver for his father who is living with the disease. I love you Jeffrey and @kimberlyborghoff. Thank you for your courage, your heart, and your passion.

@alzdelval @alzassociation #endalz #alzheimersawareness #alzheimers #alzheimersdisease #kickalzintheballz #fightwithyourheart

So proud of my friend @jeff_borghoff who is speaking at the #walk2endalz today in Atlantic City, NJ about living with early onset Alzheimer's Disease after being diagnosed at the age of 51. He is also a caregiver for his father who is living with the disease. I love you Jeffrey and @kimberlyborghoff. Thank you for your courage, your heart, and your passion.

@alzdelval @alzassociation #endalz #alzheimersawareness #alzheimers #alzheimersdisease #kickalzintheballz #fightwithyourheart ...

108 4

upsidedowndaughter

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Nov 7

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Such a special morning ❤
Dad's day center is closed for election day so it was a sweet surprise for my sister's beauties when I showed up with Pop Pop. Little Lou opened the door in a shirt just like Big Lou's! And Pop Pop got to walk his grandson into school! Heart overflowing!

#poppopsofinstagram #myfathermyheart #myfamilymyheart #auntlife #purelove #iamacaregiver

Such a special morning ❤
Dad's day center is closed for election day so it was a sweet surprise for my sister's beauties when I showed up with Pop Pop. Little Lou opened the door in a shirt just like Big Lou's! And Pop Pop got to walk his grandson into school! Heart overflowing!

#poppopsofinstagram #myfathermyheart #myfamilymyheart #auntlife #purelove #iamacaregiver ...

147 18

upsidedowndaughter

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Nov 20

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Monday morning feels. As we like to say in our family: So sweet your teeth hurt! 😄

This is Dad's smile of joy after reading the words "We Love Our Pop Pop" from his custom coffee mug and taking in all the beauteous pictures of his grands.
Happy Monday friends. We are so grateful for all of you 💖

#sosweetyourteethhurt #mondayfeels #myfathermyheart #myfamilymyheart #poppopsofinstagram #fightwithyourheart #endalz #alzheimers #iamacaregiver #alzheimersawareness
#facesofcare #joy #gratitude

Monday morning feels. As we like to say in our family: So sweet your teeth hurt! 😄

This is Dad's smile of joy after reading the words "We Love Our Pop Pop" from his custom coffee mug and taking in all the beauteous pictures of his grands.
Happy Monday friends. We are so grateful for all of you 💖

#sosweetyourteethhurt #mondayfeels #myfathermyheart #myfamilymyheart #poppopsofinstagram #fightwithyourheart #endalz #alzheimers #iamacaregiver #alzheimersawareness
#facesofcare #joy #gratitude ...

155 7

upsidedowndaughter

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Mar 5

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"Nancy? Did anyone tell Nancy I'm here? Nancy? Did they say we're sunk Nancy? I need to tell Nancy. Lizzie please don't cry. Please don't cry Lizzie. I can feel your tears through my shirt. I can hear you crying for me." #thepoetryofconstantloss

#endalz #alzheimersdisease #alzheimers #dementia #dementiacare #iamacaregiver #grief #loss #heartache #myfathermyheart #fightwithyourheart #facesofcare #alzheimersawareness

"Nancy? Did anyone tell Nancy I'm here? Nancy? Did they say we're sunk Nancy? I need to tell Nancy. Lizzie please don't cry. Please don't cry Lizzie. I can feel your tears through my shirt. I can hear you crying for me." #thepoetryofconstantloss

#endalz #alzheimersdisease #alzheimers #dementia #dementiacare #iamacaregiver #grief #loss #heartache #myfathermyheart #fightwithyourheart #facesofcare #alzheimersawareness ...

157 31

upsidedowndaughter

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Nov 11

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Rolling with Team Broodstreet at the #walk2endalz in Philly today!

#endalz #fightwithyourheart
@alzdelval

Rolling with Team Broodstreet at the #walk2endalz in Philly today!

#endalz #fightwithyourheart
@alzdelval ...

99 3

upsidedowndaughter

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Aug 17

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The sweetest sleepy face I have ever rested eyes upon... #myfathermyheart #iamacaregiver #endalz

The sweetest sleepy face I have ever rested eyes upon... #myfathermyheart #iamacaregiver #endalz ...

224 13

upsidedowndaughter

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Nov 11

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The reasons I #walk2endalz

#endalz
#fightwithyourheart

@alzdelval

The reasons I #walk2endalz

#endalz
#fightwithyourheart

@alzdelval ...

160 9

upsidedowndaughter

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Dec 20

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Last Christmas I poured my heart into finding us the most beautiful wreath. It was our only decoration that year and all I could bear as I witnessed my mother slowly dying. That wreath hung on our door nearly til she left us in February. •
Momma believed in Christmas. I learned recently that the root of belief means "to hold dear" and with everything I am I want you to know my mother held this season dear. If someone had asked her, "What do you want for Christmas?" She might have answered, "The ability to give." Believing means receiving what you have given. She gave her heart.
•
Last year's wreath was custom made by Farmer Tom at Springdale Farms who told me: "If you don't see exactly what you're looking for, I will make it for you." And he did. He made us the most beautiful wreath I had ever seen. I couldn't hold back tears when I saw it and I left a small tip when I paid in an attempt to show the gratitude my words could not convey. I would have paid a thousand times what it cost me. I wanted to give my heart for it... It was my heart.
•
Now it is Christmastime again. My first without my mother. I need a new wreath.
•
I called over to the farm market last week: "When is the kind man in who makes the wreaths?" "He is here now." "We'll be right over." Dad and I made our way there. Swallowing grief, I ordered nearly an exact replica: Red ribbon trimmed in gold. Balsam. Holly. Pine. Farmer Tom asked me to write my name atop our order slip which he took from me and stared at for a long while. "Elizabeth Wolf." He said it several times. "Hold on a minute." He went rummaging through a pile of papers then produced my order sheet from last year, lifting it like a treasure. "Here you go. I have a credit for you." A ten dollar bill dangled behind it.
It was the tip I had left him. My heart. He had been holding it for me. Holding it dear. Believing in me through this long year in which I lost my mother. All these months as I've been grieving that bill has been waiting for me. Sitting on a shelf taped to a piece of paper waiting for Christmas to come. Waiting to be remembered. Waiting for me to receive back what I had given. Waiting to wreathe me into believing.

Last Christmas I poured my heart into finding us the most beautiful wreath. It was our only decoration that year and all I could bear as I witnessed my mother slowly dying. That wreath hung on our door nearly til she left us in February. •
Momma believed in Christmas. I learned recently that the root of belief means "to hold dear" and with everything I am I want you to know my mother held this season dear. If someone had asked her, "What do you want for Christmas?" She might have answered, "The ability to give." Believing means receiving what you have given. She gave her heart.
•
Last year's wreath was custom made by Farmer Tom at Springdale Farms who told me: "If you don't see exactly what you're looking for, I will make it for you." And he did. He made us the most beautiful wreath I had ever seen. I couldn't hold back tears when I saw it and I left a small tip when I paid in an attempt to show the gratitude my words could not convey. I would have paid a thousand times what it cost me. I wanted to give my heart for it... It was my heart.
•
Now it is Christmastime again. My first without my mother. I need a new wreath.
•
I called over to the farm market last week: "When is the kind man in who makes the wreaths?" "He is here now." "We'll be right over." Dad and I made our way there. Swallowing grief, I ordered nearly an exact replica: Red ribbon trimmed in gold. Balsam. Holly. Pine. Farmer Tom asked me to write my name atop our order slip which he took from me and stared at for a long while. "Elizabeth Wolf." He said it several times. "Hold on a minute." He went rummaging through a pile of papers then produced my order sheet from last year, lifting it like a treasure. "Here you go. I have a credit for you." A ten dollar bill dangled behind it.
It was the tip I had left him. My heart. He had been holding it for me. Holding it dear. Believing in me through this long year in which I lost my mother. All these months as I've been grieving that bill has been waiting for me. Sitting on a shelf taped to a piece of paper waiting for Christmas to come. Waiting to be remembered. Waiting for me to receive back what I had given. Waiting to wreathe me into believing. ...

158 37

upsidedowndaughter

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Nov 30

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I wasn't expecting the surge of heartache that took my breath away and filled my eyes with tears while standing at the postal counter this morning watching the worker cut open the first pack of Alzheimer's stamps to be released into my local community. These stamps are available starting today and a portion of their sale will go to the NIH to help fund research to #endalz. The woman being helped next to me looked over with such recognition and tenderness in her eyes and the only words she uttered were "my mom." .

Mom. Momma. Mother. Mine. Too. Father. Also. .

Now four of us are in tears and we're feeling the kind of pain that comes from loss, from knowing the horrors of this disease. And also the kind of pain that comes with hope. We have a fighting chance. Especially when we come together. .

I wasn't expecting the surge of heartache this morning but in its swell I was carried by a deep and instantaneous sense of community. With a love like that who knows what else is possible.

#alzheimersstamp #alzheimers
#alzheimersawareness
#iamacaregiver #community #connection #recognition #love #mycommunitymyheart #fightwithyourheart #uspostalservice #postoffice

I wasn't expecting the surge of heartache that took my breath away and filled my eyes with tears while standing at the postal counter this morning watching the worker cut open the first pack of Alzheimer's stamps to be released into my local community. These stamps are available starting today and a portion of their sale will go to the NIH to help fund research to #endalz. The woman being helped next to me looked over with such recognition and tenderness in her eyes and the only words she uttered were "my mom." .

Mom. Momma. Mother. Mine. Too. Father. Also. .

Now four of us are in tears and we're feeling the kind of pain that comes from loss, from knowing the horrors of this disease. And also the kind of pain that comes with hope. We have a fighting chance. Especially when we come together. .

I wasn't expecting the surge of heartache this morning but in its swell I was carried by a deep and instantaneous sense of community. With a love like that who knows what else is possible.

#alzheimersstamp #alzheimers
#alzheimersawareness
#iamacaregiver #community #connection #recognition #love #mycommunitymyheart #fightwithyourheart #uspostalservice #postoffice ...

177 31

upsidedowndaughter

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Jun 18

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National Alzheimer's Dinner!

I can't even tell you how much I love these people! I can't wait to bring our collective passion and voice to the Hill tomorrow. 💜

#alzforum #endalz
@alzassociation @alzimpact @alzdelval

National Alzheimer's Dinner!

I can't even tell you how much I love these people! I can't wait to bring our collective passion and voice to the Hill tomorrow. 💜

#alzforum #endalz
@alzassociation @alzimpact @alzdelval ...

123 9

upsidedowndaughter

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Jan 1

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In March, about a month after Momma died, my nephew Louie was over for an afternoon play date with me, Uncle G, Uncle Casey and Pop Pop. We were spread out on the living room floor building a tower from a deck of cards when Louie jumped up suddenly, ran to our picture window, pressed his face against the glass and grandly announced: "It's 4:48!" We all looked down at our watches and cell phones incredulous to see: It was 4:48. "Louie, how do you know this?!" I asked, shaken a bit by this three year old who (back then) couldn't even identify numbers let alone tell the time. "I saw it on her watch. I saw it on Mom Mom's watch!" He declared, pointing out the window onto a bleak day. We all gathered to look. A few birds shuffled around the feeder. That was it. I stared harder. A chill ran through my body. What could he have seen? Later that night I couldn't sleep. What had compelled Louie to announce the exact time with no rational way of knowing? I did what one does when they want an answer to someting fast. I plugged "4:48" into the oracle interwebs and felt my heart ping. The top hit was a verse from the Gospel of John. I do not claim a particular faith. This is simply the truth of my experience. The verse states: "Unless you people see signs and wonders, you will never believe." 2017 has been a year of signs and wonders. I have seen how we die and come to believe in the possibility that we never really do.

For 2018, may we continue to be on Mom Mom's watch. 🦋

In March, about a month after Momma died, my nephew Louie was over for an afternoon play date with me, Uncle G, Uncle Casey and Pop Pop. We were spread out on the living room floor building a tower from a deck of cards when Louie jumped up suddenly, ran to our picture window, pressed his face against the glass and grandly announced: "It's 4:48!" We all looked down at our watches and cell phones incredulous to see: It was 4:48. "Louie, how do you know this?!" I asked, shaken a bit by this three year old who (back then) couldn't even identify numbers let alone tell the time. "I saw it on her watch. I saw it on Mom Mom's watch!" He declared, pointing out the window onto a bleak day. We all gathered to look. A few birds shuffled around the feeder. That was it. I stared harder. A chill ran through my body. What could he have seen? Later that night I couldn't sleep. What had compelled Louie to announce the exact time with no rational way of knowing? I did what one does when they want an answer to someting fast. I plugged "4:48" into the oracle interwebs and felt my heart ping. The top hit was a verse from the Gospel of John. I do not claim a particular faith. This is simply the truth of my experience. The verse states: "Unless you people see signs and wonders, you will never believe." 2017 has been a year of signs and wonders. I have seen how we die and come to believe in the possibility that we never really do.

For 2018, may we continue to be on Mom Mom's watch. 🦋 ...

165 24

upsidedowndaughter

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Apr 28

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Five years of senior prom photos from dad's day program. This day has always been one of our most joy-filled of the year. Though today was coupled with heartaches too enormous for me to tell. Joy and sorrow are always resting against each other - sitting back to back, knees curled into their chests, tears streaming down their faces.
.
.
.
"Are these words or tears? Is weeping speech? What shall I do, my love?" -Rumi
.
.
.

Five years of senior prom photos from dad's day program. This day has always been one of our most joy-filled of the year. Though today was coupled with heartaches too enormous for me to tell. Joy and sorrow are always resting against each other - sitting back to back, knees curled into their chests, tears streaming down their faces.
.
.
.
"Are these words or tears? Is weeping speech? What shall I do, my love?" -Rumi
.
.
. ...

168 10

upsidedowndaughter

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Nov 6

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Pics from today's National Family Caregivers Month Summit in NJ District 3 hosted by Congressman Andy Kim. Andy promised me months ago that he would not only cosponsor legislation to help increase care and support for families touched by dementia but that he would also work to weave together and amplify the already existing supports plus help to build a more robust, systemic infrastructure to help address the diverse needs of our community. I am so grateful to all the providers, caregivers, educators, and policy leaders who gave voice to this conversation today and came out to represent the people they serve. There was so much depth, presence, creativity, and care in that room. 💜
Every millimoment of this work is buoyed by my father's pride and by the everpresensence of my momma's love. #nationalfamilycaregiversmonth #iamacaregiver #endalz #alzimpact #alzforum #dementia #alzheimers #alzheimersdaughter #becarecurious

Pics from today's National Family Caregivers Month Summit in NJ District 3 hosted by Congressman Andy Kim. Andy promised me months ago that he would not only cosponsor legislation to help increase care and support for families touched by dementia but that he would also work to weave together and amplify the already existing supports plus help to build a more robust, systemic infrastructure to help address the diverse needs of our community. I am so grateful to all the providers, caregivers, educators, and policy leaders who gave voice to this conversation today and came out to represent the people they serve. There was so much depth, presence, creativity, and care in that room. 💜
Every millimoment of this work is buoyed by my father's pride and by the everpresensence of my momma's love. #nationalfamilycaregiversmonth #iamacaregiver #endalz #alzimpact #alzforum #dementia #alzheimers #alzheimersdaughter #becarecurious ...

106 6

upsidedowndaughter

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Feb 2

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I was buttoning up his shirt when he leaned in for a loving head nuzzle. I asked him if we could capture the moment.

#myfathermyheart #iamacaregiver #dayinanddayout #endalz #alzheimers #facesofcare #fightwithyourheart #alzheimerscaregiver #tendernessisstrength

I was buttoning up his shirt when he leaned in for a loving head nuzzle. I asked him if we could capture the moment.

#myfathermyheart #iamacaregiver #dayinanddayout #endalz #alzheimers #facesofcare #fightwithyourheart #alzheimerscaregiver #tendernessisstrength ...

269 36

upsidedowndaughter

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Feb 11

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February 10th. My mother has been dead for a year. We all went for lunch this afternoon to one of her and Dad's favorite places. When our check came my sister suggested we extend our love and pay another diner's tab. Our eyes trailed the booths and tables. How could we ever choose? I shared our intention with our waitress and asked for her help. "Do you have any other tables?" "Just one." She gestured her chin toward a woman sitting alone at a small table in the back section of the restaurant. "We would like to pay her bill. But please don't share this with her until we leave. I don't want her to feel uncomfortable." I sign each check and we are gathering our things to go when I see our waitress making her way toward me wide eyed. "I am so sorry," she says, "I had to tell her! She was getting ready to leave and asked for her check!" I start to say "Don't worry" but the waitress continues, "And you won't believe this... This is the anniversary of HER mother's death! She is shaking and crying over there in disbelief!" Not disbelief, I think. Belief.
Momma has been teaching me this.
I raise my eyes to the woman who is clutching her chest with one hand and blowing kisses with the other. I feel our hearts melting together and I am drawn towards her. "Thirty years ago I lost my mother," she tells me when I arrive. And suddenly I am in a timeless blur where I am hugging this stranger and feeling my mother - sad and happy in grief and wonder.

#mymommamyheart #endalz #grief #belief #wonder #loss #fightwithyourheart #alzheimers #alzheimersawareness #iamacaregiver #facesofcare

February 10th. My mother has been dead for a year. We all went for lunch this afternoon to one of her and Dad's favorite places. When our check came my sister suggested we extend our love and pay another diner's tab. Our eyes trailed the booths and tables. How could we ever choose? I shared our intention with our waitress and asked for her help. "Do you have any other tables?" "Just one." She gestured her chin toward a woman sitting alone at a small table in the back section of the restaurant. "We would like to pay her bill. But please don't share this with her until we leave. I don't want her to feel uncomfortable." I sign each check and we are gathering our things to go when I see our waitress making her way toward me wide eyed. "I am so sorry," she says, "I had to tell her! She was getting ready to leave and asked for her check!" I start to say "Don't worry" but the waitress continues, "And you won't believe this... This is the anniversary of HER mother's death! She is shaking and crying over there in disbelief!" Not disbelief, I think. Belief.
Momma has been teaching me this.
I raise my eyes to the woman who is clutching her chest with one hand and blowing kisses with the other. I feel our hearts melting together and I am drawn towards her. "Thirty years ago I lost my mother," she tells me when I arrive. And suddenly I am in a timeless blur where I am hugging this stranger and feeling my mother - sad and happy in grief and wonder.

#mymommamyheart #endalz #grief #belief #wonder #loss #fightwithyourheart #alzheimers #alzheimersawareness #iamacaregiver #facesofcare ...

250 66

upsidedowndaughter

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Apr 30

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TAPESTRY

Ever since they were boys, my father and his brother Sam worked side-by-side 6 days a week running the family upholstery shop. A. Brood & Sons. That store was the lifeblood of our family. Brood Fabrics. I hear those words in Uncle Sam's voice, answering the phone whenever I called over to the store to talk with Dad. I hear his bird song whistle traveling out from his office loft, drifting down through the bolts of mohair, silk, chenille to capture Dad's attention on the shop floor below. That store was the evolution of a dream. A dream realized by their Jewish father after he made a home in Philadelphia following his emigration from Poland just prior to WWII. That store was the foundation our family was built upon. My father and his brother carried their father's dream forward as long as they could until a complexity of circumstances (including Dad's Alzheimer's diagnosis) forced them into retirement in 2010. My father was 76 at the time. Uncle Sam was 80. If you were to count up all the hours in their lives, they may have spent the majority of them together. Brothers, business partners, best friends, soul companions. After the store closed, for years whenever the brothers would speak their conversations were saturated with longing for the days they spent together on 4th Street on Fabric Row. Even now, many days Dad will emerge from a revery asking for a ride to the store. Whenever he is in despair or feeling gripped by his anxiety, he will ask for his brother Sam. "I need to call my brother Sam. I need to talk to Sam. Please help me get my brother Sam on the line." We took my father to see his brother for the last time on Saturday morning. We sat Dad by Sam, guided their hands together, and let them be that way for a while - drifting through dilaudid and dementia induced haze. In that state I felt their yearning as well as their peace. Woven together, they lived for and within each other.

Sam slipped from his body yesterday afternoon trailing threads into the other world. We cling to the opposite end of this distance. The gravity of our loss pulls the wrinkles from the weaving revealing an intricate tapestry of family and love.

#family #love

TAPESTRY

Ever since they were boys, my father and his brother Sam worked side-by-side 6 days a week running the family upholstery shop. A. Brood & Sons. That store was the lifeblood of our family. Brood Fabrics. I hear those words in Uncle Sam's voice, answering the phone whenever I called over to the store to talk with Dad. I hear his bird song whistle traveling out from his office loft, drifting down through the bolts of mohair, silk, chenille to capture Dad's attention on the shop floor below. That store was the evolution of a dream. A dream realized by their Jewish father after he made a home in Philadelphia following his emigration from Poland just prior to WWII. That store was the foundation our family was built upon. My father and his brother carried their father's dream forward as long as they could until a complexity of circumstances (including Dad's Alzheimer's diagnosis) forced them into retirement in 2010. My father was 76 at the time. Uncle Sam was 80. If you were to count up all the hours in their lives, they may have spent the majority of them together. Brothers, business partners, best friends, soul companions. After the store closed, for years whenever the brothers would speak their conversations were saturated with longing for the days they spent together on 4th Street on Fabric Row. Even now, many days Dad will emerge from a revery asking for a ride to the store. Whenever he is in despair or feeling gripped by his anxiety, he will ask for his brother Sam. "I need to call my brother Sam. I need to talk to Sam. Please help me get my brother Sam on the line." We took my father to see his brother for the last time on Saturday morning. We sat Dad by Sam, guided their hands together, and let them be that way for a while - drifting through dilaudid and dementia induced haze. In that state I felt their yearning as well as their peace. Woven together, they lived for and within each other.

Sam slipped from his body yesterday afternoon trailing threads into the other world. We cling to the opposite end of this distance. The gravity of our loss pulls the wrinkles from the weaving revealing an intricate tapestry of family and love.

#family #love ...

165 53

upsidedowndaughter

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May 21

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In writing this I feel like I'm trying to organize the shattered remains of a delicate heirloom. I turn each fragment over in my hands examining its edges asking: Where do you fit? And how did it come to this? The pieces are so fragile, so barely capable of being held. They disintegrate under the weight of my gaze, within the scrutiny of my questions. In this way does someone with dementia become invisible. In this way does a caregiver disappear. The dusty residue fills the fine lines on my fingertips. 💜

I have been struggling for two and a half months to write an update on our path through this disease process. I have been at an utter loss for words. .
.
.
#iamacaregiver #thisisalz #myfathermyheart #alzheimersdaughter #alzheimersdisease #endalz #alzheimers #dementia #insomnia #psychosis #hallucinations #despair #grief #akathisia #exhaustion #invisibility #facesofcare #caregiver #heartache #fightwithyourheart

In writing this I feel like I'm trying to organize the shattered remains of a delicate heirloom. I turn each fragment over in my hands examining its edges asking: Where do you fit? And how did it come to this? The pieces are so fragile, so barely capable of being held. They disintegrate under the weight of my gaze, within the scrutiny of my questions. In this way does someone with dementia become invisible. In this way does a caregiver disappear. The dusty residue fills the fine lines on my fingertips. 💜

I have been struggling for two and a half months to write an update on our path through this disease process. I have been at an utter loss for words. .
.
.
#iamacaregiver #thisisalz #myfathermyheart #alzheimersdaughter #alzheimersdisease #endalz #alzheimers #dementia #insomnia #psychosis #hallucinations #despair #grief #akathisia #exhaustion #invisibility #facesofcare #caregiver #heartache #fightwithyourheart ...

189 65

upsidedowndaughter

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Nov 24

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Portrait of my heart: Thanksgiving 2017.

#thanksgiving2017 #myfathermyheart #myhusbandmyheart #mylove #myfamilymyheart #fightwithyourheart #iamacaregiver #endalz

Portrait of my heart: Thanksgiving 2017.

#thanksgiving2017 #myfathermyheart #myhusbandmyheart #mylove #myfamilymyheart #fightwithyourheart #iamacaregiver #endalz ...

172 7

upsidedowndaughter

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Jun 15

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I am heading to the Alzheimer's Association advocacy forum kicking off in DC this weekend and I know I'm supposed to be fighting but all I want to do is remember. I don't want to fight against who they are and who they have been. I want to remember. I am made of this. Made from them. Made from seven years of giving everything - body heart mind soul everything - to their care. I want to remember. 💜

#alzforum #endalz #alzheimersandbrainawarenessmonth

@alzassociation @alzimpact

I am heading to the Alzheimer's Association advocacy forum kicking off in DC this weekend and I know I'm supposed to be fighting but all I want to do is remember. I don't want to fight against who they are and who they have been. I want to remember. I am made of this. Made from them. Made from seven years of giving everything - body heart mind soul everything - to their care. I want to remember. 💜

#alzforum #endalz #alzheimersandbrainawarenessmonth

@alzassociation @alzimpact ...

226 35

upsidedowndaughter

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Nov 17

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I am honored to have been deemed "Official Dresser" and to be a regular receiver of this man's teeming gratitude. Every button I button, every cup of coffee I pour, every egg I flip, door I hold open, seatbelt I fasten - "thank you, thank you, thank you." He even thanks me for cleaning the kitty boxes and they're my cats! Actually he more than thanks me - he praises me. I'll vacuum the living room around him and look over to find prideful tears in his eyes. All I have to do is care. All I have to do is bear my heart into this world. But what if my heart is broken? What if its jagged edges catch on the shattered splinters of other broken hearts hurting them even more? How do I clean up this mess?

#iamacaregiver #iamahuman #iamsorry #sorry=fullofsores #brokenheart #splinters #jaggededge #endalz #alzsucks #facesofcare
#fightwithyourheart

I am honored to have been deemed "Official Dresser" and to be a regular receiver of this man's teeming gratitude. Every button I button, every cup of coffee I pour, every egg I flip, door I hold open, seatbelt I fasten - "thank you, thank you, thank you." He even thanks me for cleaning the kitty boxes and they're my cats! Actually he more than thanks me - he praises me. I'll vacuum the living room around him and look over to find prideful tears in his eyes. All I have to do is care. All I have to do is bear my heart into this world. But what if my heart is broken? What if its jagged edges catch on the shattered splinters of other broken hearts hurting them even more? How do I clean up this mess?

#iamacaregiver #iamahuman #iamsorry #sorry=fullofsores #brokenheart #splinters #jaggededge #endalz #alzsucks #facesofcare
#fightwithyourheart ...

172 29

upsidedowndaughter

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Dec 17

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An epic day of adventuring in the capitol with the loves of my life! A new holiday tradition has been born.
#myfamilymyheart #fightwithyourheart #iamacaregiver #endalz #holidaytradition #washingtondc #capitolhill #smithsonian #airandspacemuseum #nationalportraitgallery #washingtonmonument #presidentspark

An epic day of adventuring in the capitol with the loves of my life! A new holiday tradition has been born.
#myfamilymyheart #fightwithyourheart #iamacaregiver #endalz #holidaytradition #washingtondc #capitolhill #smithsonian #airandspacemuseum #nationalportraitgallery #washingtonmonument #presidentspark ...

159 17

upsidedowndaughter

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Jun 19

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My brother and I got a little rained on enroute to the Senate Committee on Aging hearing (Changing the Trajectory of Alzheimer's) but the rain felt so refreshing after a powerful day of meetings with our NJ legislators and their staff. A thousand thank yous to @corybooker @senatormenendez & @reptmac for listening to our many stories, for supporting Alzheimer's research funding, for helping amplify the need for palliative and hospice care training, and for working with us to recognize Alzheimer's disease as a public health crisis. Also, deep gratitude to @sensusancollins and @catherinecortezmastofornv for introducing, sponsoring, and wholeheartedly championing the BOLD Infrastructure for Alzheimer's Act. Today's hearing was incredible!
#endalz #alzforum @alzassociation @alzimpact
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#iamacaregiver #alzheimers #dementia #advcocacy #washingtondc #dayonthehill #alzheimersdaughter #alzheimersandbrainawarenessmonth #thelongestday

My brother and I got a little rained on enroute to the Senate Committee on Aging hearing (Changing the Trajectory of Alzheimer's) but the rain felt so refreshing after a powerful day of meetings with our NJ legislators and their staff. A thousand thank yous to @corybooker @senatormenendez & @reptmac for listening to our many stories, for supporting Alzheimer's research funding, for helping amplify the need for palliative and hospice care training, and for working with us to recognize Alzheimer's disease as a public health crisis. Also, deep gratitude to @sensusancollins and @catherinecortezmastofornv for introducing, sponsoring, and wholeheartedly championing the BOLD Infrastructure for Alzheimer's Act. Today's hearing was incredible!
#endalz #alzforum @alzassociation @alzimpact
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#iamacaregiver #alzheimers #dementia #advcocacy #washingtondc #dayonthehill #alzheimersdaughter #alzheimersandbrainawarenessmonth #thelongestday ...

141 12

upsidedowndaughter

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Jun 22

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The Longest Day

I looked back into my journal from this day last year. My mother had been dead for just over 4 months and I was still thrashing beneath the weight of my grief. At least that’s how I wrote about it then. I used myself up trying to fight it off. I was claustrophobic of my own skin. I’d go to the gym trying to sweat through the pain and I’d wind up collapsed in a heap unable to restrain hysterics. I couldn’t find space for myself. Anywhere. Meanwhile, I was still caring for Dad day in and day out. I was greedy for quiet and isolation. I spent so many days in a stupor while also looking everywhere, and desperately, for signs of her. One morning while Dad was at his day center I dragged a chair out onto our lawn. It was a humid morning and almost immediately sweat was beading along my hairline. Salt and water. This is what I had come to. I felt sticky and itchy. Uncomfortable and restless. A breeze must have come then and on it the memory of her touch. I felt her smoothing my hair back. It was a delicious kind of pain.
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We went away to the beach that summer. The entire family for an entire week. I looked for her every day. During a long bike ride down the coast Casey rolled over some glass and caught a flat. We were 8 miles from home so we called for a ride and waited. He stayed roadside but I walked out onto the beach. For an hour I traced spirals into the sand falling to my knees now and then to unearth some glimmer of her. I saw her in everything. .
.
Later that summer I found solace in a line from Clarissa Pinkola Estes: “This is our meditation practice - calling back the dead and dismembered aspects of ourselves, calling back the dead and dismembered aspects of life itself.” As a caregiver for two parents with dementia, not only did I feel dismembered, I wasn’t sure I could put myself back together in the right order. I couldn’t go back to who I had been. As my friend Joni @days_with_mom_and_dad_by_js shared in the wake of her father’s passing: “I will never be the same.” Same. From the root “together with.” I will never be together with her again. (Continued in comments)

The Longest Day

I looked back into my journal from this day last year. My mother had been dead for just over 4 months and I was still thrashing beneath the weight of my grief. At least that’s how I wrote about it then. I used myself up trying to fight it off. I was claustrophobic of my own skin. I’d go to the gym trying to sweat through the pain and I’d wind up collapsed in a heap unable to restrain hysterics. I couldn’t find space for myself. Anywhere. Meanwhile, I was still caring for Dad day in and day out. I was greedy for quiet and isolation. I spent so many days in a stupor while also looking everywhere, and desperately, for signs of her. One morning while Dad was at his day center I dragged a chair out onto our lawn. It was a humid morning and almost immediately sweat was beading along my hairline. Salt and water. This is what I had come to. I felt sticky and itchy. Uncomfortable and restless. A breeze must have come then and on it the memory of her touch. I felt her smoothing my hair back. It was a delicious kind of pain.
.
.
We went away to the beach that summer. The entire family for an entire week. I looked for her every day. During a long bike ride down the coast Casey rolled over some glass and caught a flat. We were 8 miles from home so we called for a ride and waited. He stayed roadside but I walked out onto the beach. For an hour I traced spirals into the sand falling to my knees now and then to unearth some glimmer of her. I saw her in everything. .
.
Later that summer I found solace in a line from Clarissa Pinkola Estes: “This is our meditation practice - calling back the dead and dismembered aspects of ourselves, calling back the dead and dismembered aspects of life itself.” As a caregiver for two parents with dementia, not only did I feel dismembered, I wasn’t sure I could put myself back together in the right order. I couldn’t go back to who I had been. As my friend Joni @days_with_mom_and_dad_by_js shared in the wake of her father’s passing: “I will never be the same.” Same. From the root “together with.” I will never be together with her again. (Continued in comments) ...

151 37

upsidedowndaughter

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Jul 23

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I spent the weekend remembering. .
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#momma #iamacaregiver #lovesofmylife #bestfriends #butterflymedicine #respite #lowbushblueberries #echinacea #monarch #blackswallowtail #tigerswallowtail #frittilary #lepidoptera #nectaring

I spent the weekend remembering. .
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.
#momma #iamacaregiver #lovesofmylife #bestfriends #butterflymedicine #respite #lowbushblueberries #echinacea #monarch #blackswallowtail #tigerswallowtail #frittilary #lepidoptera #nectaring ...

155 10

upsidedowndaughter

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Oct 18

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5 months ago, I attended a Town Hall event hosted by my district congressman @repandykimnj. During that event, the subject of Alzheimer's and dementia care came up. As a volunteer advocate for the @alzassociation and the ambassador to Congressman Kim, it is my job to make him aware of our federal legislative priorities and help illuminate for him the ways his team can support constituents facing a dementia diagnosis. I realized at that town hall that I had a bit more work to do... I went straight home and started writing Andy a letter. In the midst of writing, my phone rang. When I answered, I heard: "Elizabeth, this is Andy Kim." I was in awe, elated and so intensely grateful for his call. Andy had recognized there was more work for us to do together; our commitment to the Alzheimer's community was synchronized. Since then, I have been working closely with my great friend and inspirer @jeff_borghoff along with members of Congressman Kim's district team - the beauteous, wondrous Lynette pictured here who is a family caregiver herself for a mom with Alzheimer's and also the ED of Caregiver Volunteers of Central Jersey. Here we are today at the final planning meeting before our National Family Caregivers Month Summit where we'll be bringing together caregivers, policy leaders, physicians, other members of the medical community, and a diverse constituency of care providing agencies from our district. Our goal is to spark a conversation and ultimately to integrate, strengthen, and make accessible the network of care supports available to those in our community who are on the dementia journey. Every single nanosecond of this work is fueled by my grief, heartache, longing, and HOPE. 💜🙏💜

5 months ago, I attended a Town Hall event hosted by my district congressman @repandykimnj. During that event, the subject of Alzheimer's and dementia care came up. As a volunteer advocate for the @alzassociation and the ambassador to Congressman Kim, it is my job to make him aware of our federal legislative priorities and help illuminate for him the ways his team can support constituents facing a dementia diagnosis. I realized at that town hall that I had a bit more work to do... I went straight home and started writing Andy a letter. In the midst of writing, my phone rang. When I answered, I heard: "Elizabeth, this is Andy Kim." I was in awe, elated and so intensely grateful for his call. Andy had recognized there was more work for us to do together; our commitment to the Alzheimer's community was synchronized. Since then, I have been working closely with my great friend and inspirer @jeff_borghoff along with members of Congressman Kim's district team - the beauteous, wondrous Lynette pictured here who is a family caregiver herself for a mom with Alzheimer's and also the ED of Caregiver Volunteers of Central Jersey. Here we are today at the final planning meeting before our National Family Caregivers Month Summit where we'll be bringing together caregivers, policy leaders, physicians, other members of the medical community, and a diverse constituency of care providing agencies from our district. Our goal is to spark a conversation and ultimately to integrate, strengthen, and make accessible the network of care supports available to those in our community who are on the dementia journey. Every single nanosecond of this work is fueled by my grief, heartache, longing, and HOPE. 💜🙏💜 ...

106 14

upsidedowndaughter

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Nov 6

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Savoring the calm and my Poppy's sweetness after a wild weekend that started with him falling in love and included my way too brief stint as a cowgirl, an ambulance trip to the ER for Dad, and running around with dinosaurs among other adventures. He is home and fine and I have much to process about the last few days that I would love to connect with you all about soon. Stay tuned... #thisisalz #myalzstory #myfathermyheart #endalz #alzheimersawareness #alzsucks #iamacaregiver #fightwithyourheart #alzheimersdaughter #daughtersunite #dementia #alzheimers

Savoring the calm and my Poppy's sweetness after a wild weekend that started with him falling in love and included my way too brief stint as a cowgirl, an ambulance trip to the ER for Dad, and running around with dinosaurs among other adventures. He is home and fine and I have much to process about the last few days that I would love to connect with you all about soon. Stay tuned... #thisisalz #myalzstory #myfathermyheart #endalz #alzheimersawareness #alzsucks #iamacaregiver #fightwithyourheart #alzheimersdaughter #daughtersunite #dementia #alzheimers ...

160 12

upsidedowndaughter

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Oct 26

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Wishing you all a very sweet weekend 🧡🍁🧠🌻🐛

Wishing you all a very sweet weekend 🧡🍁🧠🌻🐛 ...

172 16

upsidedowndaughter

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Oct 25

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The sweetness of this moment is a buoy.
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Life is a little turbulent right now... Dad's anxiety has been on a crackling high and his perturbed restlessness has been making us all feel seasick. My vigilance toward his needs evokes a low grade vertigo, and I am dizzy trying to hold it all together. I feel compelled to talk about these issues for they seem critical to the conversation around Alzheimer's care. Keeping our home has become a real concern unless I can get back to work soon. This will require full day care for Dad, and I am so scared to start a new job for fear that he won't feel stable, and that I will be constantly worrying about his instability. This is assuming I can even get a job. I haven't had steady work in over 4 years... unless you count caregiving. I love Dad's current day program but it only runs from 8:30-1 and anyway he is teetering on the edge of losing his place there because, as a social day care, they aren't equipped to manage his anxiety, incontinence, or refusal to eat. I am also trying to qualify him for #Medicaid (thanks to Alz for wiping us out financially) with the hope that additional resources might help, but the application requires an inordinate amount of dredging, paperwork, and time; the process carries no promises; and I'm not even certain it is our best option nor entirely sure the specific help it might bring. Meanwhile, I have been holding my breath waiting to hear whether Dad will be awarded grant support from #HilarityforCharity. When Momma died in February, they graciously transferred the grant she had been awarded and since then Theresa has been a loving caregiver and companion to my father. I am in despair thinking he might lose this relationship and that we all might lose the sweet moments of ease she has brought to our lives. So here I am clinging to my buoy, riding out the uncertain storm, trying to discern some sort of coherent future. I am applying to graduate school, looking for a job, working fiercely to salvage my marriage, and doing everything I can to take care of myself so this horrifying disease doesn't waste my brain too. It might anyway. Every day I remember this.

#endalz #iamacaregiver #alzsucks

The sweetness of this moment is a buoy.
.
.
.
Life is a little turbulent right now... Dad's anxiety has been on a crackling high and his perturbed restlessness has been making us all feel seasick. My vigilance toward his needs evokes a low grade vertigo, and I am dizzy trying to hold it all together. I feel compelled to talk about these issues for they seem critical to the conversation around Alzheimer's care. Keeping our home has become a real concern unless I can get back to work soon. This will require full day care for Dad, and I am so scared to start a new job for fear that he won't feel stable, and that I will be constantly worrying about his instability. This is assuming I can even get a job. I haven't had steady work in over 4 years... unless you count caregiving. I love Dad's current day program but it only runs from 8:30-1 and anyway he is teetering on the edge of losing his place there because, as a social day care, they aren't equipped to manage his anxiety, incontinence, or refusal to eat. I am also trying to qualify him for #Medicaid (thanks to Alz for wiping us out financially) with the hope that additional resources might help, but the application requires an inordinate amount of dredging, paperwork, and time; the process carries no promises; and I'm not even certain it is our best option nor entirely sure the specific help it might bring. Meanwhile, I have been holding my breath waiting to hear whether Dad will be awarded grant support from #HilarityforCharity. When Momma died in February, they graciously transferred the grant she had been awarded and since then Theresa has been a loving caregiver and companion to my father. I am in despair thinking he might lose this relationship and that we all might lose the sweet moments of ease she has brought to our lives. So here I am clinging to my buoy, riding out the uncertain storm, trying to discern some sort of coherent future. I am applying to graduate school, looking for a job, working fiercely to salvage my marriage, and doing everything I can to take care of myself so this horrifying disease doesn't waste my brain too. It might anyway. Every day I remember this.

#endalz #iamacaregiver #alzsucks ...

175 61

upsidedowndaughter

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Oct 31

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#Halloween2017 🦋🦄 #myfamilymyheart #auntlife #siblinglove #poppopsofinstagram

#Halloween2017 🦋🦄 #myfamilymyheart #auntlife #siblinglove #poppopsofinstagram ...

166 11

upsidedowndaughter

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Dec 8

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"To convey dementia's linearity-bending disease process requires that the reader approach what is being conveyed with a willingness to be bent." I'm heading into the last week of my next-to-last semester and this is the first line from the monster paper I'm wrapping up about younger onset dementia.

This guy's smile reminds me why I'm doing this. * * * "How are you poppy?" I ask him. "We're doing fine." He is always "We" because She is with him always. With us. With me now as I retrace the last decade of my life, bending...

"To convey dementia's linearity-bending disease process requires that the reader approach what is being conveyed with a willingness to be bent." I'm heading into the last week of my next-to-last semester and this is the first line from the monster paper I'm wrapping up about younger onset dementia.

This guy's smile reminds me why I'm doing this. * * * "How are you poppy?" I ask him. "We're doing fine." He is always "We" because She is with him always. With us. With me now as I retrace the last decade of my life, bending... ...

109 16

upsidedowndaughter

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Oct 4

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"There's a shredding that's really a healing that makes you more alive." -a Rumi translation 🦋

One of the ways I coped with my mother's Alzheimer's disease was to imagine her brain as a butterfly chrysalis. I imagined it shrinking and softening and reforming. I imagined her growing wings. On February 10th of this year, it shredded open as she flew free. A few months after Momma's death I began seeing Monarch caterpillars crawling around in my garden. For 5 years I have been growing their only food source hoping to attract them. But this is the first year they came! I have been observing their activity ever since as they've been eating down the milkweed, forming chyrsalides throughout the garden, and emerging into breathtaking bursts of life. I will never be able to say the wonder of this coincidence. It has gifted me with the chance to feel my mother close, to feel the life that was taken from her being given back. 🦋

I was ecstatic to spend today learning about monarch biology, migration, habitat, and lifecycle with @mg_nature of @capemaymonarchs and get a peek at painted ladies, buckeyes, skippers, swallowtails, and sulphurs too. .
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#endalz #iamacaregiver #capemaypoint #capemaymonarchs
#monarch #monarchbutterfly #monarchmigration
#milkweed #asclepias #asclepiastuberosa #pollinatorgarden #nativeplants #seasidegoldenrod
#butterflygarden #mindofascientist #heartofamystic #life
#death #grief #transformation #rumi #fightwithyourheart

"There's a shredding that's really a healing that makes you more alive." -a Rumi translation 🦋

One of the ways I coped with my mother's Alzheimer's disease was to imagine her brain as a butterfly chrysalis. I imagined it shrinking and softening and reforming. I imagined her growing wings. On February 10th of this year, it shredded open as she flew free. A few months after Momma's death I began seeing Monarch caterpillars crawling around in my garden. For 5 years I have been growing their only food source hoping to attract them. But this is the first year they came! I have been observing their activity ever since as they've been eating down the milkweed, forming chyrsalides throughout the garden, and emerging into breathtaking bursts of life. I will never be able to say the wonder of this coincidence. It has gifted me with the chance to feel my mother close, to feel the life that was taken from her being given back. 🦋

I was ecstatic to spend today learning about monarch biology, migration, habitat, and lifecycle with @mg_nature of @capemaymonarchs and get a peek at painted ladies, buckeyes, skippers, swallowtails, and sulphurs too. .
.
.
.
#endalz #iamacaregiver #capemaypoint #capemaymonarchs
#monarch #monarchbutterfly #monarchmigration
#milkweed #asclepias #asclepiastuberosa #pollinatorgarden #nativeplants #seasidegoldenrod
#butterflygarden #mindofascientist #heartofamystic #life
#death #grief #transformation #rumi #fightwithyourheart ...

149 16

upsidedowndaughter

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Sep 4

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Another day, another café.
~
We are on our way home!

#myfathermyheart #endalz #iamacaregiver #fightwithyourheart #alzheimersawareness

Another day, another café.
~
We are on our way home!

#myfathermyheart #endalz #iamacaregiver #fightwithyourheart #alzheimersawareness ...

106 2

upsidedowndaughter

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Jan 7

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Earning his nickname "Snack Attack" with his 3rd dinner of the night 😂. "Boy is that good. Very hearty. Mmmm. Nice!" #veryhearty #myfathermyheart #myfathermyhearty #howtofeedasenior #endalz #alzheimersawareness #enddem #iamacaregiver #facesofcare

Earning his nickname "Snack Attack" with his 3rd dinner of the night 😂. "Boy is that good. Very hearty. Mmmm. Nice!" #veryhearty #myfathermyheart #myfathermyhearty #howtofeedasenior #endalz #alzheimersawareness #enddem #iamacaregiver #facesofcare ...

145 8