facts and figures 2014

Read it and weep, share it and create awareness.
Thank you Alzheimer's Association for all you do.
Click on the picture to see it larger. 

Advent

I have started a new photo-blog that is a Joulukalenteri, an Advent Calendar for the 2014 Christmas season.   LINK

There will be a joy, hope, love, silliness, and seriousness.

Come on over and visit, for you are weary and burdened, and I will give you rest, just for a little while.

watch it

This is a good video, short and to the point.
Watch it. Share it.

Tom

Tom made me laugh every Saturday morning. He taught me things I didn't even know I needed to know.  Alzheimer's disease has taken another one of my heroes.
Thank you Tom Magliozzi for making the world a better place.

interment

My brother flew east to stay with me for the week. It was great to have him here, to see him, to just be together.  However his trip had a purpose. He came, so together, we could inter Mom's ashes in the family plot.
 
When Mom died in March, the ground was still frozen, and this cemetery does not open graves in winter. We had to wait.

So together with my husband, sons, daughter-in-law, and our new granddaughter, we buried Mom's ashes. Just the seven of us sharing our thoughts, memories, poems, and songs while circled around a small wooden box.

I wasn't going to cry, I had already cried a river of tears, but they could not be stopped.

Our kids were there with comforting arms, their strength, their youth, their love. Our granddaughter was there with her new-found ability to giggle and laugh. My husband, my rock, keeps me from falling apart.

And my brother, thank you for being my brother, I am so very thankful, for you.

If I Should Go by Joyce Grenfell

If I should go before the rest of you
Break not a flower nor inscribe a stone
Nor when I'm gone speak in a Sunday voice
But be the usual selves that I have known
Weep if you must
Parting is hell
But life goes on
So sing as well.

book review

I couldn't put it down. I couldn't. Her story is so familiar and so sad. She tells it with such clarity, strength, and honesty.

"Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer's" by Meryl Comer.

Thank you Meryl for your words and for your advocacy.

"I don't want anyone to have to be like me."  pg 172

the conversation

From an article by David Kessler in the Huffington Post:  "Choose who would speak for you if you can't speak for yourself and make sure that person is willing to carry out your wishes."  Worth a read.

v.i.b.a.

Thank you to the writer of  Demented The Politically Incorrect Poetry Blog  for nominating with and without her for the Very Inspiring Blogger Award.

I am so grateful for all the bloggers out there, who share their pain, joys, and anguish, while living with dementia and/or helping someone else with their dementia.

I would like to pass this VIBA along and nominate: Creating Life With Words, My Demented Mom, With Heart and Hands, and Living in the Shadow of Alzheimer's.  Thank you all for your support.

all the mothers

I felt you all with me, all the mothers, on Wednesday.  You were all there, I felt you surrounding us with your love.  We were all there to witness the birth of our baby girl, my granddaughter.

Mom, you were there, I heard you crying with joy, just like me, when she was born.  (I also heard you telling me to slow down in the car on the way there so I wouldn't get a speeding ticket, like you did.)

Chris, I held your daughter for you, as she labored, and whispered your love and encouragement in her ears, for you. She did such a good job. Your daughter is an awesome mommy now. You would be so proud of her.

Great great grandmother, I heard you laughing. Yes, they named her after you. It is a beautiful name.  May she grow up to be a nice and loving person, just like you.

beautiful things

Not everything beautiful, that God has made, lasts forever.

Sunsets, warm orange, cool pinks, dusky gray, elusive green. There are certain sunsets that stay with you forever, you remember them, even though they are fleeting.  A windy sunset at Lands End in San Francisco with my husband. A fire red sunset in Key West with my children. A frosty pink and yellow sunset at our new home.

The Perseid meteor shower on a warm August night.

Did you ever go to a concert, and the musicians were so connected that night, the performance was so tight, the music was so beautiful, it made you cry?

The beauty of a sand dune at the ocean.

Being at the top of a mountain with a spectacular view, and a trail of pure white snow, untouched, at your feet for skiing. The snow has never been this perfect for skiing, ever.

Fresh warm ripe strawberries, just picked, the red juice running all over your hands and chin.

A rainbow that stretches from one side of the field, all all all the way up and over, to touch down on the other side of the field.

Fireworks, I love fireworks. They are such a delight.

The bouquet of flowers from my love.

Being at Zion National Park and realizing that you are not able to drink it all in. You can't possible remember how awesome it all is, as you look around at the glory. And your sadness when you realize that you'll never return to see it. You want to just be and enjoy.

Not everything beautiful, that God has made, lasts forever.

There are so many wonderful things in this world that are only here for a very short time. The three seconds of a firework, or the brief million years of Zion National Park.

Where did these pondering come from?

Our friends lost their little son. He just got sick and died. So unexpected, so sad.  He was so beautiful, so joyful, so loved... and now he's gone... like a beautiful rainbow we'll never forget.

great resource

I highly recommend watching any educational YouTube video by Teepa Snow.  She has such great ideas for dementia care; compassionate and caring.

Start here and watch this.
The Pines Educational Institute of SW Florida has many of her talks.

Alzheimer's Care Team Calendar

Today, Joy talked about the Alzheimer's Care Team Calendar on her blog .
This looks like a great resource.  Spread the news.
https://alzheimers.lotsahelpinghands.com/caregiving/home/

opening the door

February 28th, I was roused by the phone chirping at 2:20 in the night. It was the nurse from Mom's assisted living residence. Mom had been awake and fitful all night, her oxygen levels are low, she has difficulty breathing, gurgling, she has a fever, they might take her to the hospital. What does this mean? I don't understand. I'm half asleep.

I had seen her at lunch, just 12 hours ago, she had been fine, her usual self.

So, I go to the computer. My searches lead me to pneumonia. Pneumonia for a healthy person is different than pneumonia for an elder with dementia.

"The old man's friend" was a term I'd hear often, in the next few days.

The nurse called back, they were taking her to the ER.

I grabbed my "all about Mom journal" and her folder of important papers (med. list, the HCP and POA...), my sewing basket, tooth brush, and kissed my husband goodbye.

Mom was there in the quite ER, they put an oxygen tube in her nose and an oxygen monitor on her finger.  She screamed when they took her blood pressure, her frail body not able to withstand the squeezing, she screamed more when they took blood.  They came with the mobile Xray machine to image her lungs.

It seemed like the doctor returned immediately - with words of "severe pneumonia" and "start aggressive antibiotics".

Yes, all these things that I read about, an hour ago on the computer.

I began to shake and cry, I looked at the doctor and shook my head.
"Let's step outside"  he said.

This was the hardest thing I've ever done. To tell them I did not want them to give my Mother "aggressive antibiotics." I did not want them to take her down that path.  The ER doctor understood, he did not question my decision, he let me cry and shake and blubber my request.

The ER nurse came in to check on Mom, "I had to make the same decision for my father...  it is a hard decision..."
Another doctor came to see me. She outlined what was going to happen: comfort measures only CMO ... morphine to help her breath... a quiet room upstairs...

Mom was not really alert, she was having a hard time breathing, she didn't want the oxygen tubes in her nose, she was not comfortable laying on her back, the drug port in the back of her hand bothered her.

Am I doing what my Mom would want me to do for her?  As her health care proxy I've always questioned my decisions - especially when my decisions are not what "angry dementia Mom" wants. And here we are, with the biggest decision of all.  Here was Mom's "exit event".  Here was a door that I could hold open for my Mother, so she could leave.

So I sat, and sat, and waited. How long would we be here: days - weeks?
I talked with Mom - she could not respond. I massaged her hands and arms with moisturizer. I combed her hair and washed her face. I kissed and cried. The hospital brought coffee and muffins for me and ice water for Mom. I dampened her mouth with a strange sponge on a stick.  The hospital staff kept her clean and comfortable, but they mostly just let her be.
My brother had jumped on a plane and was flying, to be here.
My friend Purple Woman came and sat with me. We talked and sat and waited.

28 years and 30 years ago, I was in this same hospital, on the same floor, birthing my sons. I labored for days, breathing hard to bring my precious babies into the world. That day, my precious Mom labored with every breath. She was breathing like she has just run a race. She was fitful most of the day, awake and yet not awake.
Finally that evening, she relaxed and fell asleep.
By morning... she had gone.

finding a good caregiver

Have you seen the TV sit-com "Big Bang Theory"?  Even though I'm much older than the actors in BBT, I find BBT very funny. Is that because as I young woman, I myself was one of those nerdy women scientists?  Yes!  I went to college, I worked, I married, I hung out with... geeks and nerds just like them.

In last night's episode “The Status Quo Combustion”  (season 7 episode 4) we continue to see the problem that Howard is having finding home-care for his mother.
Mrs. Wolowitz has always been a loving mother, we've never seen her, we only hear her off camera. Her comedic stereotype is that she expresses her maternal love very loudly. Now that she is bed-bound and unable to do her own self-care, she has more opportunities to be loud and demanding. We see Howard and his new bride Bernadette move into Mom's house to care for her. We see them admit they can't do it all themselves, admit they are putz, and hire outside help. We see a parade of resigning caregivers as they march out of the house, none of them up to the task of caring for Mom.

I am amazed at how much humor and grace the writers and actors of BBT have put into this storyline. It is a minor story line, but it is full of the heartache and exasperation that we have all gone through when trying to find good home caregivers.

Bernadette says with a bit of truth in her joking:  “Howie, I love you. And as your wife, your mother is every bit my problem as she is yours. So… I want a divorce.”  Being a caregiver can put a huge strain on any marriage. How many spouses run the other way when faced with care-giving their in-laws?  But I know of even more son and daughter-in-laws who have been there 100% .   For years and years Gene was the one who gently carried his frail mother-in-law into the bathtub and bathed her.  Ben's mother-in-law "took over" the very center of their small house, her hospital bed, walker, wheelchair, and commode filling up their living space. And Ben was there for her, with new ramps, good food, in-home help, and a place to call home.

I takes a certain kind of person to be a care-giver, to be a nurse, to be a home-health-aide, to be a personal assistant.  I am so thankful for the aides that took care of my Mother everyday at her assisted living residence. They did things that I never could have done.
My Mother's personality became so that she never wanted to move in to my home, never! Until the end, she never thought she needed any help, such was her dementia.
I am so grateful for the compassion that her aides had for her, their patience and their joy.
"I like my job, I couldn't imagine doing anything else."  This was the reply I got from two aides last winter, after I once again cried on their shoulders and thanked them for taking such good care of Mom.

And so it was, with amazement, that our BBT couple, Howard and Bernadette, found a joyous and compassionate caregiver for Mom, in the unlikely person of Stewart, the comic book store owner.  It takes a special person to be a caregiver.

so true

I was reading Kate Swaffer's blog today.  What she says is so true. 

"The ugliest part of having dementia is probably the reactions of others. The two most hurtful reactions are those who stop spending time with us, and those who don’t believe us."

going through the photos

lost

Even though I've been losing my Mother for over seven years. Even though I've been here, in the front row seat, totally aware of the tiny bit-by-bit degeneration of her intellect and abilities. Even though I knew that dementia had no cure, and the only way "out" of dementia was death. Even though we had a lovely memorial service for my Mother; honoring and remembering the nice, kind, creative woman she once was...

 I feel a deep, sad desire to say goodbye to my Mother.

I feel that I've lost her and I don't know where she is. She's been my responsibility for so long. I have this lost feeling, like I've lost my purse or house keys. I know something important is missing, is gone, and I can't find it.

Is it because dementia has been a series of many little goodbyes?

Is she haunting me, is there something I forgot to do, something she needs me to do?

I'm beginning to hate the sympathy cards that come to the house. Well, yes, no, I'm grateful to everyone, they have been so kind and thoughtful.

But I want to scream. NO! I was not a good daughter! I blew it. I hated her dementia even more than she did. I hated what it did to her. I could do NOTHING to stop it. I could NOT make it go away. I could NOT make her better. I could NOT fix it. I could NOT make her pain go away. I could NOT help her.

I lost
I lost the game
I lost the task
I lost the job
I lost my Mother.

Please hold in your hearts the firefighters who died this week in Boston, the people of Snohomish county engulfed by a mudslide, and all who are lost.

the chapter about the valley

This has been just a piece of the journey of our life together, my Mother and me; one chapter in her life, one chapter in my life.

Dementia is only one chapter.  It is not the chapter about her being a school teacher or the chapter about her being a world traveler. It is not the chapter about my time as a college student or my time as a young mother.  We've had common chapters before:  we lived together for eighteen years, she was my Girl Scout leader, she is my sons' grandmother. Her telling of these stories would be as different as my telling of these tales.  And so it is now.
This part of her story and this part of my story, is all about her trip through dementia.

We have been through the "valley of the shadow of death". The twists and turns, dark corners, and dead end side canyons. Those folks at the top of the canyon, looking down, they can't always see us, they can't always yell down encouragement and directions.  We cannot always see the footprints of those who have traveled this way before us, it is so dark. We cannot see the light of the sky because this canyon is so dark and deep, and full of shadows. We cannot tell false side canyons from the way out, places where we may become lost. The side walls are so steep, so unclimbable, so slippery, we had to persevere.

On her trip through dementia I had to walk beside her.
Sometimes I could not see her beside me. Sometime she didn't know that I was beside her. Many times, in her demented anger, she did not want me on this journey with her, many times she tried to push me away, in her fierce independence she wanted to do it her way and alone. But I had to walk beside her, to the end.

Now that our journey together has ended, as we come out of the dark canyon, our paths will diverge, she will go her way and I will go mine.
Just as our paths diverged when I left home to go away to college.

This chapter of our life together is over.

Recommended reading: "Tears in God's Bottle" by Wayne and Ann Ewing

laughing

I told my husband last night, "I haven't laughed so much in a long time."
Oh, my! What a synopsis to a this past week. But it's true.

Yes there were many, many tears, if you read this blog you know I cry a lot, so much, even now.

But, to have my brother here with me all week, and then to have his wife and daughters join us, and stay at my home; it brought me such joy. To have our sons with us; to see my daughter-in-law aglow with our growing grandchild; it brought me joy. Visiting with our friends, Mom's friends, family, cousins from far away... all gathered together to remember Mom; it was such a comfort.

To share the sad stories, to remember her dementia; brought us all to tears. But even better, to have friends and family remind me of how Mom use to be, to remember her, is such a gift.

Even to share some of the more absurd times of Mom's journey through dementia, we could all laugh together.  

To have folks share memories of Mom; the teacher, the puppeteer, the creative and outgoing lady she was.  Thank you all so much.

free at last

She's free. Free at last, free at last.

Mom passed away this morning. 

She caught a mighty bit of pneumonia on Friday and it was too much for her.

piano man

A neighbor of Mom's, I'll call him Jim, is often asked to play the piano for sing-along, if no one else has been scheduled that day.  He's been around for a few years. Jim must have dementia, because he too lives in Mom's neighborhood.

From Jim's piano style, you know he was once an excellent pianist.  Any song requested comes immediately to his fingers. Some ragtime, ballads, show tunes, hymns; he has played it all and his inner pianist remembers. Beautiful technique, full chords and melody, introductions and lots of feeling. Did he once play with the symphony? Was he a music professor at a university? Did he play with a big band? That is the past. Now Jim is loosing his battle with dementia.

Now Jim is only asked to play at the end of a sing along session. The activities staff know the songs, the ones he likes to play best, and the ones we all know by heart too.

"Hey Jim", the activities leader will suggest, "how about playing Yankee Doodle."

So we're singing along "...stuck a feather in his hat and called it macaroni, glory, glory hallelujah! Glory, glory, hallelujah! Glory, glory, hallelujah! His truth is marching on..."

Jim is redirected by the activities leader "Jim, would you please play Amazing Grace?"

So we're singing "... I once was blind but now I see, his truth is marching on. Glory, glory, hallelujah! Glory, glory, hallelujah!..."

Jim's inner record skips and his memory tracks jumps and we're once again singing a rousing refrain of "Glory, glory, hallelujah!"  He is stuck on this one song, "The Battle Hymn of the Republic".  As long as you let him play he will continue to play the refrain, over and over and over.

"Let's all sing Goodnight Irene."
"... good night Irene, good night Irene, I'll see you in my dreams, glory, glory, hallelujah! Glory, glory, hallelujah! Glory, glory, hallelujah! His truth is marching on. Glory, glory, hallelujah! Glory..."

old wounds

Mom is so lost. She was very talkative today. Not too many real words, but she was chatty. She had a strong desire to talk.

She had some very important things to say to me (the woman in front of her.) But she was getting angry at her inability to make sentences.

Other times she would mumble a serious sentence with one or two real words and expect an answer or reply.  Go with the context and inflection I'm thinking,
"I don't know." "Sure I do."  "Oh yes!"  "Me too." "Yes, I agree."

Have I told you how much I hate this disease.

Many, many times today she got very sad and burst out crying.  It was so hard to calm her, redirect her, or sooth her.  Five minutes later she would burst out laughing. I don't know why.

Going through the old photos is usually a nice activity. But today it just caused her pain. She was asking (again, with babbled words) where was her mother? Is she really dead? Why didn't she know? Why didn't I tell her?  I'm beginning to wonder if, as a young woman, she was left in the dark by her father and aunts, to the nature and severity of her mother's cancer and death. I think they kept this information from her, and now this sadness and anxiety are coming back to her, over and over and over.

She never knew anything more than that her mother had cancer.  About thirty years ago, when my mother was older than her mother ever got the chance to be, she asked me if I knew how her mother had died, because she didn't.  I was shocked. So, I took myself to city hall and got a copy of my grandmother's death certificate.

Her sadness today bounced all over her life events.  Once again I was her sister, her mother, her daughter, and other unknown women.  Her communication style and mumblings with these other women changed as she was trying to communicate with them. 
Once she was talking about "my daughter".
I want to jump up and scream, "it's me Mom, I'm her. I'm right here."

Then later that day when she found me, she was so sad that she hadn't seen me in "so long", "so so long".  Again and again, her pain and sadness run so deep.

I don't like that my presence brings up all the old sad memories and anxieties.  I hate this disease.

I'm listening to the book "Best Friends, Occasional Enemies: the lighter side of life as a mother and daughter." by Lisa Scottoline and Francesca Serritella. It is a hilarious and poignant memoir. The chapter Love and Worry had me crying in my car, again, pull over and cry on the side of the road, and cry, cry for Mom.

glasses 7

Another pair of glasses, frames broken beyond repair.

who who

Partway through my visit, Mom is taken away by her aides to be toileted.
"Come with me, let's go for a walk." they discretely say.

The process of periodically guiding residents (who need reminding) to the toilet results in fewer accidents and fewer messes.

After a few minutes I go to meet Mom at the door to her bedroom, to walk with her back to the lounge.
"Look who's here to see you." the aide says.
"Oh Ruth, Ruth!" Mom cheeps.
The aide gives me a quizzical look and whispers "Ruth?"
I whisper back, "Ruth is one of her favorite aunts."
"Your aunt?"
"No, Mom's aunt.
"Do you look like her?" the aide asks.  I've never really thought about it.  If I look anything like my Mother, then I guess I might look like my great aunt: light brown hair, plump, middle age women. 
If I'm going to be anyone else today, I'm glad she thinks I'm someone special.
I'll take it.