twinkle in his eye

"I remember you when you were just a twinkle in your daddy's eye."
spark
spirit
emotional attachment
joy
love
empathy

smile that reaches the eyes

window to the soul

self centered
emotionally detached
apathy
isolated
flat affect
withdrawn

You can call me Mariarose - her eyes light up

then the spark is gone

looking at the photos of Mom from her last five years, you can really see it in her eyes
hollow eyes       joy-less

support

 Hello dear readers, it's been a long time.

I encourage caregivers to get all the support and education they can. I found it extremely helpful.

There are two online people who are really knowledgeable in this area.  The first is Teepa Snow:

TeepaSnow.com

www.youtube.com/@teepasnowvideos

 The second person has frequent short reels on facebook, Adria Thompson of Be Light Care Consulting 

BeLightCare on fb 

www.BeLightCare.com

a child

"Our spirits are eternal. Our souls are forever. The next time you encounter an elderly person, look at them and know they are still a child, just as you are still a child and children will always need love, attention and purpose."  a quote from a fb post by the Blue Ridge Believers September 28, 2018

Tony Bennett

John Colapinto wrote a very moving article for the AARP. It is about Tony Bennett and his Alzheimers.

 Link https://www.aarp.org/entertainment/celebrities/info-2021/tony-bennett-alzheimers.html

I see that this is part of a series of articles by the AARP about Tony Bennett and his journey, that his family wants to share with us, to know, learn, and understand.

"... his expression had a masklike impassivity" made me cry.  I know that look so well.

Montessori

A wonderful article about using the Montessori method of education with people who are living with dementia.  Check out the Association Montissori International AMI website for more information. LINK

You can find their video here: VIDEO

Wendy Mitchell

A heartfelt blog by Wendy Mitchell who has Young Onset Dementia 

 "Which Me Am I Today?"  

https://whichmeamitoday.wordpress.com/

coffee breaks and tea time

coffee breaks and tea time

Dehydration can cause health problems.
Dehydration causes confusion, effects coordination, exacerbates dry skin. It can cause nausea, fainting, and dizziness. Dehydration can worsen constipation and cause headaches.

Dehydration is evidence by a decrease in urination and its dark color.
Dehydration happens not only in the heat of summer, it can happens in winter too. In winter the air is dryer, we don't have the "hot and thirsty" feelings, but we can still be dehydrated.

And worse it can compound the brainfog of dementia. Someone with dementia may not be able to recognize they are thirsty or have the ability to ask for a drink.

Instead of fighting the battle with dementia and your loved one "you must drink another glass of water", what if we develop the routine to have daily coffee breaks and tea time, morning and afternoon, pause and refresh.

Some elders have smaller appetites, so opportunities for more small meals is a good thing too. Stop and pause, the opportunity to have a little bite to eat at coffee or tea time.

More small meals is another way to get in a healthy snacks: cheese and fruit with crackers, or vegetables and humus, or fruit muffins, or mini meatballs, or fruit and yogurt parfait.

And your beverage doesn't have to be coffee or tea.  Fruit or vegetable juice, ice tea, herb tea, popcycles, lemon-aid, fruit and yogurt frappe, milk shake, water, or seltzer.
Maybe this is time to sneak in that dose of fiber into a smoothie or nutritional supplement into a frappe.
Or maybe the tea time beverage can be the first course for dinner, a soup.  A soup can be hot and hearty or a cold soup, chilled and refreshing.

I make a chilled cucumber soup in the summer, it contains broth and peach yogurt, blended with cucumbers and mint. My granddaughter calls it a cucumber smoothie - whatever you call it, it's delicious and nutritious. 

smart devices

Hi dear readers, long time no post...

Today I was listening to NHPR "Here & Now" and an article by Robin Young about the Super Bowl LIV commercial for the Google Voice Assistant.  An elder man was asking "Hey Google" to help him remember stuff about his wife Loretta.  "Hey Google, remember Loretta hated my mustache."

I think one point of this news article was the question: are we letting Google (and other platforms) have too much of our personal information?  But whether it's talking to our computer aided devices or typing into them directly, so much of our quirks and secrets are already out there.   I remember searching online for patterns to make cloth diapers, for my soon-to-be grandchild. For months and months after that I was plagued with advertisements for diapers.

However my thoughts ran to a different question.

As my Mother's dementia grew she would purchase the same items over and over.  Link  She had eight bottles of molasses in her pantry. She would send the same birthday gifts to her granddaughters over and over. She would buy a birthday card every time she was in a store for whomever had the next birthday, her birthday card collection was huge.  She was using computers for email and creating documents, but she never got into browsing the web, or shopping there.

In my dementia caregivers support group I heard of people with dementia who got quite out of hand with the HomeShoppingNetwork. Watching tv and purchasing another set of pots and pans for their daughter-in-law, because you know she would love new pots. Or purchasing another big cozy bathrobe because mine is old and ratty and this one looks so soft.

We have all heard the story about the parrot that was ordering treats from Amazon through a voice activated assistant. "Hey Siri - Polly wants more crackers."

 I already have become use to just snapping off an order to Amazon for that big bag of cat food I can't purchase locally. It's all so convenient.

So my question is: as most of us are now quite use to using our highly connected computer aided devices for everything, how will those habits help or hurt us when dementia creeps in?

"Hey refrigerator, purchase OJ."  "Purchase OJ"  "Purchase OJ" "Purchase OJ."

"Hey thermostat, turn the heat up.  Turn the heat up. Turn the heat up." When she really is sick with a fever and needs help.

"Hey Siri call the police I can't get up."

"Hey Alexa call the police there is a strange man in my house" who is really just his own reflection in a mirror.

the teacher

I have always hoped, that with age, I would grow-up to become a wise woman,  I would become a sage woman.

In my internet browsing I found a lecture by Scott Stuart - Dimensions of Dementia: Deepening our Care.  In his lecture Scott talks about the worth of all people, and the value of all people, at all points in their lives.  Scott also talked about what we can learn from those who have dementia. They are still teaching us things, and we should be receptive to these life lessons. 

My Mother was a teacher, she was a very good teacher. What did Mom teach me, while she had dementia, although indirectly?

That raising children, which I believe is one of the hardest job in the world, is a piece of cake, compared to dealing with dementia!

She has taught me that dementia is not really like a Dementor, a character from the books of Harry Potter. Yes, dementia sucked out the happiness that was in my Mother and most of the happiness that was in our relationship. But the dementia-demon has not sucked out her soul.  Her soul and her tortured body were very much still there together, until she died.


What did my Mother teach me?  That you will always miss you mother after she is gone, even if she has been gone for sixty years. You can still miss her with all the emotional rawness as it was the day she died. It can be as powerful as it was sixty years ago.

What did my Mother teach me?  We are creatures of habit. We like certain things and we don't like certain things.  Mom never liked button down shirts or flannel sheets, and somehow she could still communicate that to me. Her aides just attributed that to her daily grouchiness, but I knew the difference.

When Susan lost her mother, she wrote in her blog:  "Along the care giving road something amazing happened, my mom gave me a gift of pure Love. My mom knew love and taught me to experience it too. My mom's illness was our greatest blessing, without it, I would not have a heart that is full of love."

I can't care

Again, Teepa Snow has succinctly put into words what it took me years to realize.
My mother had Vascular Dementia and maybe Frontal Temporal Dementia too.

She couldn't care.
She couldn't care.
She couldn't care.

The "I care about xxx" part of her brain was busted.

www.TeepaSnow.com 

https://teepasnow.com/resources/for-families-and-friends/#resources

Oh why does my Mother's dementia still hurt my heart so much?

a dog named Stormy

The family plot, where my Mother and Father (and other ancestors) are interred, is in the old section of the cemetery, most stones date from the early 1800's to early 1900's.  So I usually never see other living people when I visit this cemetery.  Once I was surprised by a walker on her daily constitutional. She quite snuck up on me and scared me to pieces.

Down the path there is a well with a hand pump where you can fill your watering can, to water the flowers you've planted on your ancestors' graves.  As a child I remember learning how use this hand pump, how to prime it, and how to fill the watering can without soaking your socks and sneakers.

Things change very slowly in this part of the cemetery, subtle changes.  A large tree was missing from the neighborhood, just a stump left. 

One day, a year or so after my Mother died, I arrived at the family plot to see a man planting a ginkgo tree.
Isn't this something usually done by the cemetery workers?
This man had a young golden retriever dog with him, who immediately came over to me as friendly as could be.  I walked the dog back over to his human. 

"Hi neighbor" I said.  It seemed a fitting, yet strange thing to say. Will be be eternal neighbors some day? I went over and introduced myself.
He was replacing the old tree that was destroyed by the previous winter storm.
His family plot is the one with the beautiful rose quartz headstone that I've admired since I was a kid
After a bit more conversation I went to plant the irises I brought.

The golden retriever came back and sat next to me, as I dug and planted.  He let me hug him and pet him. He sat on my father's flat stone, beside me. I couldn't plant, I just cried and cried, hugging this dog.  He put his paw on my thigh and let me weep into his soft fur. He stayed with me for a long time.  I wasn't just teary.  I had those big sobs that catch in your throat. I was a mess.

My father always had golden dogs, retrievers or mutts.
This dog was being so friendly, affectionate, and comforting.
His name was Stormy.

naughty words

Again and again.
Just like dementia does, I'm going to remind you to watch Teepa Snow's videos.
Here she talks about our language skills and how they are affected by dementia.
Watch here.  December 21, 2017 entry on YouTube at "Teepa Snow's Positive Approach to Care"

the last bath

It has been four years since Mom died.

There are still memories of Mom and her dementia swirling around in my head, things I want to write about. This story is about her last bath.

Mom caught pneumonia, was sent to the ER, admitted into the hospital, and died the next day. All so sudden.  You can read about it here.

The hospital called me early that morning, she had died during the night. I stopped by her assisted living residence to pick up some clothes. I hugged and cried with the staff. They had already been informed by the hospital.

When I saw Mom, she was lying peacefully on her back, all tucked into bed, intravenous lines removed and beeping heart monitor taken away.

The nurse was there with me, calm and reassuring.
"Did I want to bath her before we got her dressed?" she asked. "I will help you." We knew she was dying, they had kept her clean, did I really need to bath her? But, this was a gift, a special time with my Mom, one last physical act between us, one last time that I could touch her, hold her, and take care of her - a goodbye event - a ritual.

Still attempting to protect and honor her modesty, we bathed her bit by bit, uncovering and exposing pieces at a time. Sort of like how a masseuse reveals only the parts to be massaged. I washed her hair too, her short silky brown hair, I towel dried it and tried to brush it.

Her body was cold and deathly white on top and so very hot and purple on the bottom side. That she was so cold and so hot at the same time was something I was not expecting.

Mom never liked my help getting dressed. I would stand behind her, or off to the side, when helping her. She would kick me when I would put on her sneakers. I can remember "angry dementia Mom" saying snarky things like "did you get a good look" when I was helping her into a johnnie at doctor appointments.

Getting her dressed was both horribly sad and humorous. She was dead weight. She was like a rag doll, and like a Barbie doll, I couldn't easily bend her to get her dressed. Trying to hold her leg while putting on her socks just got me laughing.

It was heartbreaking, joyous, and humorous all at the same time. As I tugged Mom's jersey over her head or tried to pull her socks up I kept waiting for "angry dementia Mom" to pop up and start yelling at me. "What in the #%$# do you think you are doing? I don't need help getting dressed." But when I brushed her hair I could hear my "real Mom" say in a soft voice "Oh that feels good."

Thank you to the hospital staff for letting me have this time with my Mother, and supporting me through this ritual.

Lewy Body dementia

Dementia in all it's forms

Stealing skills

Battering the brain

Loosing our loved ones 

Causing confusion

Disguises as depression

Ruthless with Robin

Read about Robin Williams and his Lewy Body Dementia.

 Huffington Post

The Guardian

I'm sorry

Teepa Snow always has such good information to help us caregivers do it better.
Please watch this video.
I'm Sorry

Jim

Please hold in your hearts Jim and Karen and their children.
 
Jim passed away this week from Younger Onset Alzheimer's Disease.
He could have been my younger brother: a healthy, intelligent, active guy with a wife and two children. 
Alzheimer's is NOT just an old person's disease.
Alzheimer's is NOT a normal part of aging.
Alzheimer's is a thief, it steals and steals.

We are Missing Jim.  (That was the title of Karen's blog, it has since been taken down.)

misspeak

Thank you Kate Swaffer for all you do.

Go read her list! HERE

two years without her

Two years ago, Mom died.  I was just sitting here thinking of what to write in this post and my brother called.

He called just because he was thinking of me.  He didn't remember what day it was.  I told him I was just thinking about him too.

We shared news of the joys that are in our lives.  We rejoiced in our children and grandchildren.

He told me not to cry, and go do a happy dance for Mom.  So I'm going to dance around today and wiggle my butt in my too tight jeans, and think happy thoughts about Mom.

improv

So, I was canning summer vegetables and crying all over the tomatoes.  I was listening to the radio program "This American Life" and a rebroadcast of an episode from last summer.  The story was about Karen, her husband Mondy, and her mother Virginia.  Virginia has dementia.  Go listen HERE.  Start listening at 27:30. 
Then go to Karen's website:  In the Moment (new version) and learn about her tools and techniques. As she says " In the Moment ... was developed after my surreal world of improvisation collided with the very real world of Alzheimer's disease."
Then go to her other website Ubuntu.  Looks like some good resources. (note: 2018 Ubuntu web site down.)

death and taxes...

So here it is, the middle of April, and for those of us in the US it is TAX TIME. The deadline for filing our federal and state taxes is here.  The joy of spring is overshadowed by the task of filling out these forms. 

For many of us, we put it off until the last day, the last possible moment.

I have been doing Mom's taxes for many years. Her tax situation was very simple. There are a lot of lines on her tax form with $0.

Why have I been procrastinating? Why? Every time I sit down to start her taxes I would get a big cramp, a lump in my heart, my stomach would clench, a feeling of dread would engulf me. I could not face her taxes. Why?

I think... it's because I now remember my Mother as the woman she was. I can now remember her as the intelligent, creative, loving person she was. I am not plagued by the memories of the day-to-day devastation that dementia created. I have stopped thinking of her as ONLY that woman.

But, the tax forms, once again, take me back to that place, the place where dementia held my Mother. A place I don't want to be.  A place with the HUGE monthly checks for her assisted living residence and medications; a place with cases of incontinent panties; a place where she was so lost.

But dementia no longer has my Mother.

Mom, tomorrow I will take you walking through my spring garden, we will talk about the narcissus as they poke up from the icy soil, we will discuss rhubarb pie recipes when we see the emerging leaves, we will talk about the returning Canada geese, we will enjoy the warm sun, and try to imagine sheep shapes in the clouds.  And yes, Mom, I got your taxes done, just in time, we won't have to worry about them, every again.