ring

I keep procrastinating. I know she is not going to like it. I know it will make her angry. I know it will make her sad.

I have to get the ring cut off her finger. The ring has scarred her flesh. It is way too tight. This is the same ring she lost two years ago, when her fingers had become so thin from not eating.  Now her body is swollen and her fingers are too.

Two months ago I managed to massage the other ring off her hand with a lot of hand-cream and tugging. I told her I was taking it, I told her I would keep it safe. I told her it was cutting into her skin. I told the aides, I wrote it in her guest book. However the next time I saw her she was crying and saying "lost... Grammy's... lost..."  Trying to communicate to me that she had lost her mother's ring. Once again I tried to reassure her that I had it and it was safe. But it didn't matter what I said, when she looked at her hand, it was not there.

Over and over, day after day, she will look at her hand and see that her ring is missing. It will make her very sad.

This ring won't budge, It has to be cut off.

spooning

When I got to Mom's, she was still in bed. I could not rouse her. She grunted a "no" when I asked her to wake up and visit with me. She yelled a "no" when I asked her to get up and eat breakfast. She didn't respond when I asked her to wake up to look at the Christmas cards and gifts that she had received. The aide said Mom had grunted "five more" each time she asked Mom to get up that morning.  We all like to sleep in "five more."

I have to remember to "be with her where she is." 
I climbed onto Mom's bed and spooned her, stroking her hair and shoulder.   We are not a pair of tea-spoons, that's for sure, more like two casserole spoons, I giggle to myself! I look down at the cat curled by Mom's knees, I see the bed post.  It is the bed that I had as a child.  How many times did Mom crawl into this bed and spoon me when I was little?  How many times did she cuddle me, when I was sick with the chicken pox, the flu, or a broken heart?

The aides came in again and finally got Mom up and into the bathroom, where they helped her to wash-up and dress.

We "walkered" into the dining room and had a little breakfast. She must be prompted to eat, she seems to have lost her drive/motivation/initiative to eat.  I guide her through her breakfast, handing her the glass, the toast, then fork, then glass... over and over. 

We look at the new Christmas cards after breakfast. She can't open the envelopes, she can hardly open up the cards. Some names bring a smile, some bring blank stares.  

People:  please sign your cards and letters with more than your first name!  Mom knows a lot of "Barbara's".  I certainly don't recognize your handwriting, and I know she doesn't.  Some dear-old-friends are gracious enough to write a sentence or two, to prompt an old Christmas memory and connection.  "I was just remembering all the fun times we had decorating our second grade classroom for the holidays."  "What sticky-fun we use to have making wreathes for the church fair."  These small sentences really bring a smile to Mom's face.  And they help me decode which "Barbara" you might be, so that I can help Mom recall happy holiday memories.  But, thank you, thank you, for all the cards and letters. They bring me joy.

one word

If I could describe Mom's journey through dementia in one word, it would be anger.

There is a new person at our Alzheimer's caregivers support group. She is a caretaker wife. Her husband is a large and intelligent person. He is someone who was always responsible, in-charge, providing leadership, and direction. Now he is angry.  People are telling him that he can no longer do things he once did, that the things he is saying or doing is "wrong". He is arguing back. He is yelling and angry. She is scared. I am worried for his wife.

He, like my Mother, will not believe the chaos that dementia is causing. They will both keep fighting. They both know they are right.

Dammmmmdementia I hate you.

sing with me

My brother, EJ, came to visit. After a delay caused by hurricane Sandy, he finally got his trip rescheduled and came east.  It was really good to see him.

On our first visit, we got to Mom's after lunchtime. She however was still at the table, now eating alone, as her neighbors had finished lunch and walkered away.

(Did I just make up a new word?
"They walkered away." You know what I mean.)

Mom was slowly finishing her meal. The aide would come over periodically to keep Mom on task, stabbing food and handing her the fork.  Mom looked at the fork of food being presented to her, looked at the aide, and then looked at my brother. She began to cry, big sobs and big tears. I've never seen her cry like this. I think, Mom was deeply mortified that she was being fed like a toddler in front of her son. The aide, was quick to understand what was going on. She got cheek to cheek with Mom and whispered comforting words to her: it was alright, we all need help some times, your son understands.

Having a conversation with Mom is difficult. She gives no meaningful or appropriate responses to our questions or comments. Maybe twice in three days, she looked at EJ and gave a genuine acknowledging smile. Mostly her face is just a curious or blank expression. I interpret her expressions as: what are you people doing here, why are you talking to me, I have no idea what you're talking about, or I don't know how to respond to what you are saying.

This week is Mom and EJ's birthday.  EJ asks Mom "It's my birthday this week, can you sing the happy birthday song to me?"  We both start singing. Mom just looks at us with questioning crooked eyebrows.  She doesn't sing a word, she's not even lip-singing or humming along.

Later, EJ tried to get her to sing, one of the favorite songs that she would teach her students, but again, she just looked at him with that questioning expression. We're singing, but she's not.

He stopped again to see her on his way to the airport.  He was unsure whether he could fit in another visit with her. Then he told me, "Yes, I'm going to see Mom this morning, it could be the last time." 

slip sliding away

The changes are coming fast. Every day, something else is failing.

For so long Mom has been fighting me. Denying that anything was wrong. Fighting my helping her, resisting my meddling.

Yesterday at my visit she was all drowsy and sleepy.
She was full of shakes and tremors. Sporadically jerking, her whole self twitching. She couldn't keep a grip on her drinking glass, it kept slipping down, or splashing up. The fork kept jumping out of her hand, launching lunch off her plate like pool-balls. I would put the fork back into her hand and help her stab some food. Sometimes she could get it into her mouth, sometimes not. This went on for a while.

An aide came over and told me that they have been holding Mom's hand as she holds her fork or glass, for a few days now.
"Did I want to feed her?"
I froze!
"Or I could do it?" she said. She must have seen the shock on my face. I could help Mom grab her fork, I could help Mom stab her food. I could NOT help guide her fork to her mouth. Why? What was wrong with me?

I felt like Mom would open her eyes, perk up and start yelling at me. I could hear her in my head yelling at me. "What in the he** do you think you're doing?!? I'm not a baby! I don't need your help. I am fine! I can do this!"  This is what my demented Mother should be saying to me. But she's not going to yell at me anymore. The words are going.  Yup, I'm now grieving the loss of Mom's behaviors from early stage dementia.  aaaaahhhhh!!!!  I have been the manifestation, the representation, of "normal". If she kept telling me that she was capable and able, yelling at me that my meddling was unnecessary, telling me she was fine, then maybe everything might be fine. But nothing is fine, nothing at all.

Mom was so drowsy, she could not stay alert through her lunch.  She was falling over in her dining room chair. I could not rouse her. I talked loudly, I pinched her, I tickled her. I got no response. She was in a thick doze. I would lean in with my cheek next to her's and sing in her ear. No response, no recognition. I was forehead to forehead asking her to wake up and talk to me, to open her eyes and eat dinner. No response. I was IN HER FACE, something that she hates, and she didn't even swat me away.

hurting

Some things don't change.
This is exactly what I'm feeling today.
The deep sorrow.
Just like three years ago.

singing

We hear a lot about music and Alzheimer's. I know how important music is to everyone, babies and elders.
This is an interesting video about using music to connect with someone.

So I was thinking... maybe I'll get my guitar out, I think it's time to brush up on all those silly songs, the campfire songs, the songs from Girl Scouts, the hymns, the folk songs, the carols, and all the songs that Mom taught to her second graders.


She doesn't want to watch the birds and flowers.  Putting together puzzles is no longer something she can do.  She can't figure out what to do with a handful of playing cards. She doesn't like looking at magazines, it makes her frustrated.

Maybe it's time to bring my guitar with me when I visit.  Time to try something new.

There is an old saying: when you sing, you pray twice. I sure could use the extra prayers!

Maybe some of Mom's neighbors will sing along with me.

"I've got something in my pocket that belongs across my face... so I take it out and put it on... a great big Brownie smile."  "Smile though your heart is aching. Smile even though it's breaking."

candy house

She is changing; and it frightens me. Again I have to adapt to these new behaviors, I have to change, because she is changing.

Her sentences are mostly gone. Her word-finding is spotty.

What struck me yesterday is her non-response when people talk to her.  There is no conversation, not even a grunt or smile or nod. As if she doesn't know/remember that when you talk to someone, they should talk back.  She gives me a hollow expression, an unsure stare, a lost-in-space glare.

I slipped her repaired glasses onto her face, she brightened up, realizing that she could see better. Then she knit her brow and stared at me. I think she was asking "Why did you have my glasses? Why did you take them off my face?"  She didn't even realize she was without her glasses for the past two days. So unlike her screaming and crying in June, when she was without her glasses for the first time. (Unfortunately, her old glasses didn't hold up long enough for me to get the repaired new glasses back to her.)

The activities leader came over and said Hi.  She greeted Mom with warm words. She looked at me sadly and told me that Mom is not singing anymore.

Last summer we talked about Hurricane Irene, and the huge rainstorm. Yesterday Mom wasn't even aware of the bad rains and swaying trees outside her window, from Hurricane Sandy.

We are looking through her latest issue of Yankee Magazine.  I'm flipping through the pages (her fingers weren't cooperating) and pointing out and commenting on the photos. She's not really paying attention. She's not engaged in this activity. All of a sudden Mom reads "Candy House". It's a small advertizement for Mrs Nelson's Candy House.
"Yes, I remember going to Mrs Nelson's Candy House." I say brightly.
"Yes." Mom says.
"It was beside DeMoulas grocery store."
"Yes." Mom says.
"It was next to Grant's department store."
"Yes!" Mom says.
"They must be making lots of chocolate candy for Halloween."
Mom stares at me, she is lost, the conversation is over. 

strength

Give me strength, oh please, give me strength.

mammogram

Mom flunked her mammogram. Not that the radiology tech even got to give Mom her mammogram. It just didn't happen.

Mom was clean and dressed, had eaten her breakfast, and ready for me to bring her to her appointment. The aids are so good.
Mom and I slowly walk out to my car, she's shuffling behind her walker; step with her left foot, drag her right.
"Where are we going?" she asks fifty times.
"You have your mammogram today. We're going into town, to the doctors office." I repeat.
"I just had one." she repeats. I feel the same way, didn't I just have one, and now it's time for another.
"All us women need to get our breasts checked, Mom, we all do it."
"Where are we going?"  We begin the conversation again.

We get to the hospital, she starts to panic, the office is at the hospital campus, she recognizes the hospital, she doesn't want to be here. I don't know why.
"Why are we here!?!?"
"You are just here for a mammogram, they are just going to take some pictures." I try to exude calm.

I park in a space for the Walking Disabled, nice and close.  I hang up my new parking tag. I can't get Mom out of my car. She can't get leverage on the door or walker handles. She is like a rag doll, a very heavy rag doll.
"I can't. Nooo." she cries.
A petite elder man comes out to help, he is a hospital volunteer. I worry more about him than Mom. Somehow Mom finds some strength, and we get her up and behind her walker.  He directs us to radiology.
It's not that far, but for Mom it is a long walk.  She wants to sit down in the reception area, I won't let her, I walk her straight through to the dressing rooms. She sits and I help her into the johnny.
"Necklace" she screams.
"I'll put it on, Mom, it's right here, I'll keep it safe." She swats my hand, I've put the necklace on backwards, she tries to tug it off over my head. I fix it so she can see me wearing it properly.

With a lot of effort Mom stands and starts to walk to the examination room.
I spoke with the staff yesterday during the preregistration phone call. They know that Mom has dementia, they know she is a slow walker, they know that she will need to do this exam while sitting on a stool.  They have scheduled two people to help Mom through this.The four of us slowly walk down to the examination room.  Mom is whining and whimpering.  We try to get her to sit on the stool, she won't sit because there are no chair handles for her to grab, she is afraid, she is out of sorts, she is not trusting any of us to get her onto the stool. She can't calm down, she can't be reasoned with. She is scared and frightened.

"Let's not do this today," the tech says "We can try again on a better day. We'll contact her doctor and let her know what happened."
"There won't be a better day." I say quietly.

Mom is exhausted, they offer me a wheel chair. I push Mom into the changing room, I get her dressed.  We go to the cafeteria, I'm pushing her and dragging the walker behind me.  We have a drink and Mom calms down. I push her back to the parking lot.  The same kind volunteer comes to help me get Mom into my car.

Back at Mom's place, I have to find two aides to help me get Mom out of the car.  She is spent.

Will I ever be able to take her out again?

no more puzzles

There will be no more jigsaw puzzles for Mom. It was something she loved doing, it was something we could still do together, but now it is too much.  She can't even pick up the puzzle piece. I have to put it into her fingers, in the proper orientation, point to the space where it goes, and then watch her for ten minutes try to cram one piece into the one open space, and not get it in.

"Noooo" she wails. Her face gives me a multitude of expressions. Emotions that she can no longer express with words.
No, you are wrong, that piece doesn't go there.
No, don't make me do this, you are torturing me, it is too hard.
No, this piece is the wrong one, why are you teasing me.

There is no connection with shape and void, there is no connection with color matching. All the jigsaw puzzle skills have vanished.

glasses 4

Last Tuesday Mom's glasses were missing, again. They were found, lenses out, screws gone. She wears them when sleeping and napping. She has done this for years.  I gave her the old super-duper-glued-together glasses and went to get the new ones fixed. 

Today the staff called me, to tell me Mom's glasses are broken, again.

I think it's time for the staff to "take" her glasses when they get her into her pajamas and distribute her evening medications. She's not going to like that!

photos

Mom and I spent a lot of time yesterday looking at old photos.  Because her vocabulary and clarity had really declined the past few months, I wanted to do a little testing, I wanted to force words out of her.

Her sentences are very short. Most of her words aren't found in a dictionary.
I find it funny that her "catch phrases", the ones she has always used to string together her conversations, are still there.  And these phrases still pop-out clearly between her jumbled phrases.

Yesterday, I was the one to tell Mom about her photos, I was the one to repeat her stories back to her. It was easy, as I have heard these stories over and over and over.  When a photo brought back to her a strong memory, her sentences and word recall were much clearer. 

We were looking at photos from my son's wedding. He was married on my Mother's front steps, at that house she loved so much. There was a photo of my two sons together; all so very grown up and handsome in their black suits. Mom points to the younger son and asks with clarity "What about him?"  She's asking me "Is he married yet?" I laughed and laughed, "No, Mom, he's not married."  I can't wait to tell him that his Grandmother was worried that he's not married.

As Jolene Brackey reminds us in Creating Moments of Joy  “They may not recognize you but they have not forgotten you.”

less and less

Mom is more and more confused. Her words are more and more garbled. She cannot remember how to use parts of her body. She cannot follow instructions.

hate mail

Part of why I write this blog is to get thoughts out of my head. Once I've written them down, I don't mull over them or let them disturb my sleep. This blog is a way for me to process thoughts and get on with life.

I need to write about the hate mail. My husband tells me to just "forget about it" and I will, once I write it down.

As you know, I am participating in the WALK TO END ALZHEIMER'S. I have been fundraising through emails, facebook, and by handing out pledge sheets to people I see. But then I remembered other people we know: Mom's friends and neighbors, her "dear old friends", the women of her monthly luncheon group, friends from her church, and our extended family. These are people I can only communicate with the old fashion way, with a letter. I don't expect a donation from everybody. I know some of these people have severely limited incomes. But maybe my letter will encourage them to call, write, or visit Mom. To remember her.

I have also shared with you how I had to clean out and sell her house. (Such a short sentence for such a huge project!) These physical assets have become liquid assets now. Money for the monthly bill at the assisted living residence, money for her medications, insurance, clothes, cat food, toothpaste...  she still has lots of financial expenses and responsibilities, it's my task to do that for her. It's still her money. I'm just her poa.

Someone mailed back the WALK pledge form with a handwritten note at the bottom, no return address, no name. After reading it, my husband and I both knew who it was from.  He said I received a FU letter.  It made my stomach turn.

"Please use our share from the proceeds from the sale of (her) house and antiques as our contribution. This should put you over ($ fundraising goal)."

Your share?!?
My Mother's not dead!

AAQI in Houston

Once again I am honored to have six of my Priority Quilts at the International Quilt Festival in Houston, TX.  These little art quilts are part of the Special Exhibit and sale by the AAQI, the Alzheimer's Art Quilt Initiative.

** The AAQI will be bringing TWO THOUSAND little art quilts to the festival **

The festival runs from October 31 to November 4th at the George E Brown Convention Center.

 The AAQI always has Priority Quilts for sale on their website. 
(AAQI project and website closed December 2013) 
The Alzheimer's Art Quilt Initiative sells small format art quilts (9" x 12" or smaller) donated by their supporters to finance Alzheimer's research.

blah blah blah

Words, words, words... Mom is loosing her words. At our last visit, I'm not sure any of her sentences made any sense.  We "talked" for three hours, but I don't think in that whole time, she said anything you would consider a structured sentence.

She pointed to my knuckles and said "Poop hand."
"Those are my freckles."
"Poop on hand!"
I wonder where that thought came from?  

Alzheimer's Action Day

PURPLE DAY
PURPLE DAY
MAKE IT 
MAKE IT 
GO AWAY

it takes a village

As I drove away from visiting Mom the other day, I had to stop for a school bus.  The driver made sure I had stopped before letting her charge cross in front of me.  She smiled and waved as we passed. It reminded me of Kathy, who faithfully bussed my kids for over 15 years. Both of these women are part of that "village", that caring place that we need, to raise our children.

And I had just left my Mother in her "village". I am so glad my Mom is living in her assisted living residence. It truly is a community, a village, a nurturing caring place.

I was there for the end of summer outdoor bar-b-que. It was a beautiful sunny day. Tents and tables set up in the parking lot. Colorful mums and scarecrows were all around.

What struck me, that day, was that everyone participated in this picnic lunch. It was a festive and fun bar-b-que. The director was passing out burgers and dogs, the hairdresser was handing out ice cream sandwiches, the financial officer was refilling empty lemonade cups, the driver was cutting up someone's burger, an aide was wiping melted fudgecycle off of a chin, the maintenance man came around with seconds, and another aide was passing out sun hats for the hot and sweaters for the chilly. And of course the kitchen staff created this delicious lunch. People were laughing and eating and enjoying themselves.  I am so grateful for this caring community where Mom lives. This village that not only supports my Mother's physical needs, but accepts her as she is.

My husband and I are searching for our next home, our retirement home.  We are not just looking for a house, we are searching for a community.  Wouldn't it be great if all towns were there to support all their citizens:  the little kids, the athletic kids, the geeky kids, the musical, the shy, the single parent, the widow and widowers, the elders, the ecological, the lgbt, the housebound, the hungry, the artists, the political, the religious, the farmers, and people like my Mom, who can't live on their own.

The House I Loved

I grabbed the book "The House I Loved" by Tatiana de Rosnay off the library shelf because of two reasons. The first was it's title.  My Mother also loved her house, she was so adamant that she was never going to leave it. What did Ms. de Rosnay  have to say, about another house that was so very loved? And the second reason was that I had recently read another of her books "Sarah's Key" and enjoy her style of writing.

In the book "The House I Loved" we are reading what Rose is writing to her husband Armand. I believe she is writing in a journal, but writes as if it's for Armand's eyes. Rose loves their house. The house of her husband's family.  It is a warm and beautiful place, unlike the soulless place she grew up.  Her story jumps back and forth through time. She recollects events and people throughout their shared history and the years before and after their marriage.

And then it's there:  the blank stares, the wandering, the dementia. Armand has dementia. I'm reading this book for pleasure and dementia finds me. This is not a book from that stack of books, resources I go to when I don't know how to deal with my Mother's dementia. This is suppose to be fun reading. But it's there, dementia is everywhere.  

The story Ms. de Rosnay writes is also gripping because Rose, throughout the book, reminds us, over and over, that she is not going to leave her house, she loves her house, it is integral to her existence.  This is the way my Mother felt. Would my Mother have done what Rose did, if she were in her right mind...?  Is Rose in her right mind...?

I often wonder what would have happened to my Mother if I had left her in her house. Could I have left her there? Was there really no choice, but to drag her kicking and screaming out of there?  Why did Rose's friends and family not make that same decision?

Read the book!

when's lunch

Mom has just finished eating her after lunch cookie, washed down with a glass of milk. She is still holding her glass, when she asks me. "When do we have lunch?"

a gift

I am rereading "Creating Moments of Joy".   It's a book I highly recommend to all caregivers.

I bought Mom some new pj's, a larger size, her old pj's make her look like a stuffed sausage.  When I give them to her she's going to fight me, and argue with me, and disagree that these new pj's aren't the "right" ones.  I can see the battle play out before it even happens. So sad.

So, I had a thought.  I wrapped the pj's in gift wrap and slapped on a gold bow. Then I wrote out a card, with a picture of a cat on it, of course, and it reads:  "Dear Grammy, I saw these pj's and thought of you. I know you like blue. Love, DB"   Yes, I signed my son's name to this card. My son has no idea that he gave his grandmother pj's today.  I am using my own children in this deception with my Mother. 

But, you know what?  Mom was thrilled to get a gift from her grandson. She coo-ed over the cute cat on the card. She told me the pj's were very pretty. She was so excited to get them that she wanted to try them on right away.
You know what?
I created a moment of joy.
I avoided a battle with Mom.

She wore the gold bow for the rest of the day like a corsage.

The aide asked me if I thought Mom would wear these new pj's.  They know how hard it is to get Mom dressed everyday, especially when her favorite ("the only pair I have") pair of jeans is in the laundry. I was grinning and laughing, "She likes them now. They are a gift from her grandson. Just remind her of that."

big sister

Yesterday I was talking on the phone to one of Mom's dear friends, JT. A woman who has known her for twenty-plus years. They have been through a lot of life together.  I think of JT as the "big sister" that Mom never had. I know that Mom loves JT like a sister too.

JT is a wise woman, a sage woman.  She was one of the few people that Mom would listen to, Mom would take her criticisms seriously, as dementia was taking hold of her behaviors and words.

JT visits Mom often, they reminisce about the old times, they share the latest news about their friends, they play cards, take walks around the grounds, they go out for lunch.  JT was always so good at "being with Mom where she is" and steering the conversation to calm and good thoughts.

All that has changed, dementia has drawn another curtain down between them, Mom has turned a corner.

I was talking on the phone with JT. She was SO sad.
"When I leave your Mother, I sit in my car and cry."
"Me too, me too."
She was so full of grief, she has lost her dear friend, the bonds they shared, the connections, the history.

I know my Mother recognizes JT as a friend and a stable person in her life, because she will look at JT, when she is lost or confused, like a deer frozen in the headlights. She is looking at JT for the answers, any answer, some answer, some piece to cling to. Because JT has always been a rational, warm, and strong friend.

I know JT will continue to visit Mom.  She is loving like that. But it will be hard, harder than before.

powerful

"What's the one thing you never want to forget?"
What a powerful question.
What a powerful video.

The WALK to End Alzheimer's

Well here we are again, another year has come and gone, and dang-it-all, no one has found a cure for Alzheimer's.

So I will again participating in the WALK to End Alzheimer's this September. As this is an anonymous blog, it's kind of hard for me to ask you to make a pledge for me or my team.

The folks from my support group have joined together as a WALK team. You could too.  Or you could make a pledge to a friend who is walking, or to the Alzheimer's Association in general.

The Alzheimer's Association hot-line is there with friendly, compassionate, and knowledgeable people who can help. People who are only a phone call away, day or night. 800-272-3900

 

"We walk... to honor and remember those we have lost. We walk... to share our story of living with Alzheimer's and join together to raise awareness and funds. We walk...so future generations won't have to face Alzheimer's."

expectations

My expectations only lead me to grief and sadness. I expect too much from my Mother:  acknowledgement, politeness, conversation, manners... 

I have to let go.
I have to not expect.
Not to anticipate, to want.
It is SO HARD to do.

My goals and wishes for my Mother were for her to be safe and happy.  That is all. Even these two desires are too much, I am expecting too much. 
She is safe, yes, she is well cared for.
But she is neither happy nor content.
She is broken and I can't fix it.

authority

I finally have one. I have a Parking Permit for the Walking Disabled, aka a handicapped parking hang-tag for my car.  Now when Mom and I go for a ride, I can park closer.

To get this hang-tag, the department of motor vehicles needed the signed application from me, a signed form from her doctor, and a copy of my durable power of attorney.

So... all this paperwork for a tiny blue parking permit got me thinking.

When I sold Mom's house, no one asked to see my durable power of attorney.  No one ever asked if I was authorized to sell this house.   Yes, they asked to see my identification, I am who I am. And, yes, I am my Mother's daughter. And, yes, I have a key to this house. BUT am I the person who my Mother has authorized to "acquire, dispose of and sell real property?"
The people who did the closing wanted to see my father's death certificate, to make sure he no longer had any claim to this property. They are the same people who handed me that big check, and never asked me if I had authority to take it.  (tisk, tisk, tisk)

I have heard of many families, who have parents with dementia, who are fighting about authority, power, control, and money. Fortunately we're not one of them.  My Mother gave me a job to do, and my brother trusts me to do it.

the yelling stage

We are all amazed by the toddler who wakes up hungry in the middle of the night, climbs out of his crib, drags the kitchen chair over to the freezer, and is found the next morning sleeping contentedly on the kitchen floor next to an empty tub of ice cream.  We are amazed because just a few short months ago, this was a helpless baby, someone who could only communicate by crying. Crying because he's hungry, cold, sad, sick, lonely, wet, itchy, scared....

As my Mother's abilities disappear, as bits and pieces of her intellect flicker on and off, her problem solving skills no longer even match those of a determined and hungry toddler.

My Mother is in the yelling stage now.  She is frustrated by her inability to do things for herself. She is frustrated by what is going on around her, she doesn't like her clothes, she doesn't like the food, her neighbors, or her sneakers. She is frustrated by her inability to get herself out of a "problem situation", she doesn't know what to do or how to make it better.  So she yells.

She can't find the right words to communicate her needs.  She can't ask someone, "Would you please put the dvd into the dvd-player so that I can watch a movie?"  She waves her hands around and screams "hey you, HEY, HEY, HEY, disk, ugh, movie, NOW, yes, come on you can do it, DO IT NOW!"

"This is hard!"  She bangs her toast on her plate "No, no, no, no!"
"Mom, you asked for toast, this is nice toast."
"No, no, no, no!  Yuck!"  I don't think anyone could have made a better piece of toast, but it was not right, for Mom.

I brought her the jeans, Sarah's jeans. They looked very much like her old favorites.
"These aren't jeans, I'm no dummy, theses aren't jeans, no ugh, ugh.." she's waving her hands at the pants, I think pointing out that they have no back pockets. "These aren't jeans! Are you stupid?! No yellow..." She's pointing at the lack of gold top-stitching that these jeans don't have.  She balls them up and throws them on the floor.

I'm full of every emotion:
I want to laugh, she is yelling at me because the pants don't have gold stitching, since when has my Mother been so fashion conscious, about her jeans, of all things?
I want to smack her, I want to slap this nasty woman.
I want to yell back at her. "You ungrateful woman, I have been to six stores and five consignment shops, these are the only jeans for 100 miles. I've washed and hemmed them. Just wear the +*^%$ pants."
I want to cry, why can't I make her happy, why can't she accept these pants? Why can't she accept anything? She's fighting, she's frustrated, she's lost.

She is snappy and sarcastic and curt to her aides and neighbors, and me.

I am so sick of it.

pants

Again, I am buying my Mother more pants, she is growing and outgrowing her slacks.

Mom use to buy her favorite slacks from j.c.p.  For the past few years I have been able to replace her favorite pants easily.   But they have recently discontinued that line of clothes. Don't they know I have a Mother with dementia - who will ONLY wear what she knows and likes already?!!! I guess this line of clothes was too ordinary - too basic. But it was great for the way my casual seventy-something Mother likes to dress.

I went to the local consignment shop. I'm looking for elastic waist cotton slacks: denims... chinos... something similar to what she likes to wear, but in the next larger size.  I find one pair, and another, and another. Wow I've hit it big  --  pun intended!  I check the labels to make sure they are really all the right size.  Then I see them. Sarah's name tag is ironed into each pair of slacks.  My heart sinks.  I start to cry, right there in the consignment shop.

Most adults don't have nametags in their clothing.  It's not like Sarah had a great winter at WeightWatchers and now needs a new svelte wardrobe. It's not like Sarah went to summer camp and needed her clothes labeled.

Why doesn't Sarah need all her slacks?
Who has had to clean out Sarah's closet?

blueberries - part 2

"Did these blueberries come from Aunt R's yard?" Mom asks.
"No, Mom, they came from my yard."
"Oh..." she groans "Ok, I'll have one."

So, the blueberries were from the wrong garden, and she ate just one.
Yup, Aunt R has been gone at least 26 years, but I guess her berries are still the best.
I guess the wrong berries can't jog happy blueberry memories. 

I hope the staff enjoys snacking on them.

blueberries

My husband and I have started raising chickens, laying hens to be more exact. This is a new experiment for us. We started out small with our livestock, honey bees, and now we're onto larger animals, maybe next year we'll get some goats and sheep.

What has this to do with dementia?

To get the hens to come to us, to think of us as the source of all good things (food, water, and safety) whenever we go to the coop, we bring a gift. Some yummy gift. Slugs, broccoli leaves, lettuce, tomato ends, Japanese beetles, clover flowers... all stuff from the garden.  This week my husband has started bringing the hens blueberries. They love blueberries!

(All the animals in my yard love the blueberries: robins, bluejays, chipmunks, and even the wild turkeys. It's quite a sight to see the turkeys flying up into the blueberry bushes.)

Just like when I visit the hens, when I visit Mom, I try to bring her a gift.  It could be a magazine, a photo (old or new), a dvd, or maybe her favorite licorice.  (I don't count clothing and pads as gifts, she likes nor desires either, they only cause arguments. I now try to hide the clothing I bring, and sneak them into her drawers when she's otherwise occupied.)

Today I'll bring Mom a pint of blueberries.

I'm sure we'll talk about the time we went blueberry picking up on the mountain and she carried my newborn son in the backpack. I'm sure we'll talk about the forever-blue diapers from the toddler who sat in the middle of the bushes and ate and ate and ate. I'm sure we'll talk about her Dad, the reluctant picker, who stuffed his blueberry pail with pine-needles so he only had to pick enough berries to cover the pine-needles.

Let's go jog some old blueberry memories.

creativity

You have heard me talk of the AAQI, Alzheimer's Art Quilt Initiative, and the small art quilts that I make for this organization. But, quilting is a new venture for me. Something I have only learned these past few years because the opportunity to work in a quilt shop came my way.

Why would I work in a quilt shop if I wasn't a quilter?  Because I am a fabric artist, a lover of textiles, a lover of color and pattern, and most importantly I am a weaver.  Or at least I was a weaver.

My Mother's dementia has stripped me of my creativity. The chaos that has been running through my life because of her condition has chased my muse away. My looms remain bare, there is no weaving going on in my house.

My weaving business has folded.

I was teaching classes, I was giving talks, I was taking classes, my works were in exhibits, I was an active guild member, I was selling my handwoven items at craft fairs, in museum gift shops, and to customers all around the world through my on-line shop.

My looms are covered in dust and I cannot find my way back.

As I cleaned out my Mother's house, I took back the many woven items that I had made for her. The linen table runner that covered her sideboard for many years. The two large rugs from the bedroom floor. The scarf that she wore with her good coat to church each Sunday.

Today at my Alzheimer's caregivers support group we talked about expressing ourselves creatively. Spilling out our grief and feelings with art. Somehow writing this blog helps, but I miss my looms.  I miss the weaver that was within me.

My Mother has lost her creativity too.  She has no desire (impetus, need, want) to do anything. It is so hard for me to accept this part of the new her.  She is not reading, or writing, she doesn't draw or doodle. She has no desire to watch the birds or walk in the gardens. She is lost and so am I.

How can I express my grief with my weaving?  How to merge the process of creating something with the reality of losing someone?
The first thought that popped into my head, was to weave her a shroud. Oh my, how morbid.
Would I be like Penelope? Weaving the shroud by day and unweaving it at night, trying to extend time before the inevitable?  I'll have to make it blue, it was her favorite color.

the shadow

We all do it. All of us caregivers do it. We look over our shoulder to see if Alzheimer's disease is coming to get us too.
Please listen to Alanna Shaikh's TED talk. She has been looking over her shoulder too.

large numbers

I'm feeling crushed by this sea of extremely large numbers.
Alzheimer's Association Video

glasses - part 3

Recap: Saturday -- Glasses lost and broken. Monday -- My frustrating visit with Mom's ophthalmologist. I glue her glasses together.

On Tuesday I make an appointment with another eye doctor. Mom has seen her for eye infections and other  eye problems.  However the next available appointment isn't until July!  I take it, and also get on their appointment cancellation list. Something is better than nothing.

Wednesday morning the staff from the assisted living residence calls, Mom's glasses have fallen apart again, they are going to try to glue them. "We've got to do something..."

In a flash of desperation I drive over to my optometrist's office.
"It's for my Mother... she has dementia... Alzheimer's... she has broken her glasses... can you help me... can you... soon?"  I think I was almost in tears.
"Well Dr D is on vacation for the next week."  My heart sinks. "But Dr L has an opening tomorrow."
"Dr L?"
"She new with our office, she's very nice, and she has a few patient with Alzheimer's."
Tomorrow, tomorrow!  Mom's going to get her eyes check tomorrow!  I'm doing the happy-dance in the parking-lot.

I have to shuffle my work schedule around quickly - thankfully I work in a place that is very accommodating and flexible.

On Thursday I drive Mom to my optometrist's office for the exam.
"This is not my doctor." she is edgy.  They were so nice to Mom. They did not belittle her, or treat her like an idiot. They did not get frustrated by her slowness or inability to answer question.  They are people who "get it", who understand communication and compassion.

Mom could not tell the doctor if A was clearer than B. Mom could not answer most of the questions, that the doctor asked. But she could read the letters, she was a reading ninja. Mom remembered, that when you see the charts, you read the letters.  She read and read. I guess that was good enough for the doctor. The doctor was calm and polite throughout the whole examination. While we were waiting for Mom's eyes to dilate, for the next part of her exam, another staff person came into the room with 5 or 6 different frames. Frames similar to what Mom had, something that would be familiar and comfortable for her.  They didn't make her get up from the exam chair to shuffle into another room, they brought the frames and mirror to her.  So thoughtful. They even adjusted the frames to fit Mom's face that day, so I wouldn't have to bring Mom back to the office when her glasses were ready. (It's only a 180 mile ride for me.)

Mom has new glasses and they look great. (The super-duper-glue held the old ones together long enough.)
"Why are you giving me new glasses?" she asked when I gave her the new ones. I shake my head and laugh to myself. You don't remember anything, do you.
"They look so nice on you, Mom."

resources

Mary at "Down the Rabbit Hole" recommended a YouTube video by Teepa Snow.  I would recommend watching all Teepa's videos.  She has some good stuff to say!

gliders

There is a group of  glider-chairs (rocking chairs) near the French doors that lead to the courtyard.  A place where one can sit and enjoy nature, watch the chipmunks and the goldfinch at the bird feeders.

Mom refuses, adamantly refuses, to sit in a glider.
"Those chairs are for the old people, see."
She will drag over a dining room chair, even if all the gliders are empty.

moisturizer

A long time ago, when Mom was living at home alone, her dementia got in the way of her ability to take a shower, to take a shower thoroughly, and her ability to remember to take a shower. 

Now her aides prompt her every few days to take a shower, they supervise her. 

I don't think they do any "hands on" bathing yet, as I found a (new) empty bottle of moisturizer in Mom's shower.  I think she was using it as shampoo.  And because it is a thick lotion, and probably didn't run out of the bottle fast enough for Mom, she propped it upside-down on the grab-bar, with the lid off.

Is this when I take away all lotions and creams - so she doesn't confuse them with her toothpaste?

glasses - part 2

Mom's been in her room since Saturday, she won't come out, because she doesn't have her glasses. She's been crying (on and off for three days) because she has no glasses. The staff has told my Mother "your daughter is taking care of it", again and again, over and over. (What can I do on a Saturday night or Sunday? The optometrist isn't open till Monday.)

Her frames were two year and two months old and they broke.

It's been 26 months since her last eye exam, and her prescription has expired.
The staff at the optometrist's office told me it's "against the law" to make a new pair of glasses with an old prescription. A prescription that expired two months ago. No, they can't be soldered. No, they don't repair broken frames.

This is the same office where, three years ago, they "sat by and laughed" while Mom tried to understand why her contacts had all disappeared; where they told her she had put two contacts in one eye, and the wrong one in her other eye.

This is the same office where, two years and two months ago, the office staff came out into the waiting room to ask me in a loud voice, in front of my mother and all the other waiting patients, "It says here she is taking Aricept, does she have Alzheimer's?"

 ~ - ~ - ~ - ~

"I don't want to go the eye doctors, there is nothing wrong with my eyes, don't make me go there."
"You can't get new glasses unless you go to the eye doctors."
"I just want my glasses, give me back my glasses, you took my glasses."
"Mom, you broke your glasses, you have to wait and get new ones made."
"I don't want new ones, give me back my glasses, don't play games with me."
She doesn't understand.

No, I don't want to bring my mother into your office for an eye exam. She won't be able to answer your questions with any clarity or truth or rationality or reason.

"Mrs. Abcde can you see the letters?"
"What? That's not my name"
"Can you read the letters?"
"Yes"
"Which one is clearer A or B"
"Yes, they're both fine"
"Which one looks better A or B"
"Yes"
"A or B"
"What?"

 ~ - ~ - ~ - ~

I asked the optometrist's staff.  "What do the other elders do? Those that can't answer questions? What about those who can't get to your office?"
"We have 95 year old patients that come in here."
"Yes, many 95 year old people are quite able to get around, that's not my question. What about people who can't get in for an exam? How do they get new glasses?"
"They come in."
"What about people who can't respond correctly to questions? What about someone with dementia?"
"The doctor is very good with old people and children." 
"My mother is not a child."
"I'm sorry."

I'm frustrated, why can't you just make a new pair of glasses with this 26 month old prescription? You have 20 years of data of her face measurements, you have 20 years of data on the lenses she has bought before, as well as the shape and style of her frames. My Mother has been crying and unable to see for three days. She doesn't understand. 


I am frustrated.
I stopped at the hardware store to buy some super-duper-glue. They all say "not to be used on polyethylene or polypropylene plastics"  What are glasses made of?  I try to glue the frame together. I try not to glue my fingers to the frame. Hold, wait, count, sing to myself. It doesn't work. What are frames made of?  I try again, no luck. I glue the bottom frame to the lens.  Hold, wait, count, sing. It's sticking. Hold, wait. It's still sticking.  I glue the top of the frame to the lens. Hold, wait, count.  One drop of glue that has left a track down the side of the lens.  Oh hell - oh well.  They are together, not properly, not pretty, but they are together.

I bring them to Mom. The first words out of her mouth, a very loud  "Where are my glasses?"  I hand them over very gently. I give her stern warnings about how they might break again.
She's not listening to me. She has her glasses. It's all my fault that she hasn't had her glasses. It's all my fault that she can't see. It's my fault she's been crying for three days. In her mind I should have been there IMMEDIATELY with new/repaired glasses, because the aides kept telling her that "your daughter is taking care of it."

Maybe the dementiademons will look the other way for a few weeks and let the super-duper-glue do it's job; as I try to get a new exam and a new pair of glasses for Mom.

glasses

So, I get a phone call.
Mom has lost her glasses.
The staff found most of her glasses; a bent frame and one lens.
ugh

urgency

Mom is at that next step in her physical deterioration. She is not always able to get to the toilet in time.  It just takes too much time. From the time when her brain tells her "it's time" to the time when she is seated on the toilet.

She has to get up off her chair or bed, stand up, turn around to find her walker, align the walker in the proper direction, walk around chairs, neighbors, and tables to get to her room.  Open the door, pat the cat, open her bathroom door, shuffle to the toilet, turn around, wiggle her buttocks out of her too tight pants... you know the rest.

And perhaps on her long journey there she might get sidetracked by the photos on the bulletin board, her shadowbox, music from the speakers, talking to her aides, pictures on her tv, her mail, the cat, birds at the feeder.... who knows.

It's sad and it's a huge smelly mess.

love the one you're with

It was a good visit!

My brother EJ and his daughter LM came from across the country for a visit.  It had been about a year since I saw EJ, when he came to help me move Mom into assisted living.  It had been much longer since I had seen my niece LM.

For weeks before their visit, I had been talking about them with Mom. "LM is coming to see you soon."  I would get all the photos of an older, grown up, LM and show her.  I really wanted Mom to accept this young woman as her granddaughter. I didn't want Mom to get angry or frustrated or argumentative when she didn't meet a 6 year old granddaughter, but an 18 year old.

I guess the dementia-demons took the week off.  Mom was smiling and loving, she was happy to see her son and granddaughter. HURRAY!!!!!

Each day our visits were very simple, going for walks by the river. Slow, slow walks, Mom pushing her walker, LM walking carefully beside her.  We'd take our sandwiches to the picnic shelter by the dam.  We did a lot of sitting, eating, and talking.  Sometimes Mom would be with us in the conversations, many times she zoned-out. Mom never asked questions, she never asked about LM's graduation or going away to college, she never asked about her other granddaughter or her daughter-in-law, but she just listened to our conversations. Isn't it sad, that our expectations of a "great day" are so minimal. 

People often ask, do I have siblings that help me, help me with the horrors of dementia care-giving.  Even though EJ lives thousands of miles away, he IS supportive.  We are on the phone all the time, he is encouraging and resourceful. Yes, I am the one HERE on this side of the country with our Mom, he is the one on the other side of the country with his in-laws.  Unfortunately Alzheimer's disease and dementia have infiltrated the lives of all three of LM grandparents.  My sister-in-law is the sibling in her family that has taken on the responsibility of care-giver for her parents. And I know my brother has been the caring son-in-law, for those parents.

Didn't CSN&Y sing about "love the one you're with". I'm glad my brother is there for his in-laws. I glad he is there to support his wife as she has to make tough decisions for her parents.

quite a show

Apparently Mom has seen a man running up and down the halls in his johnny and graduation gown, with his bum hanging out.
She thought it was a good thing.
There are currently no men living in my Mother's neighborhood.
Any man living in Mom's neighborhood would not be running.
People in Mom's neighborhood are dressed, no one wears a johnny.   

I think "Patch Adams" has made an appearance in Mom's imaginary neighborhood.

I still want to barf

Today was the day, I sold my Mother's house.  The knot in my stomach is huge. This house was never MY house. I never lived there.  I have a feeling like I've done something terribly wrong, and yes, I can never un-sell it. Mom has no idea what I did today.

A new couple is moving in.  It is now their turn to sit on the porch and watch the humming birds fighting over the bee-balm plants. They will watch the fawns being birthed in the field. They will pick the blueberries in July and the strawberries in June. They will get their car stuck on the icy driveway next January. Will they ever love this old blue house as much as my Mother did?

I signed my name a hundred times today. It was all a blur. I came out of the meeting without the keys and with a check.  I guess that's all I can ask for.

reality tv

When I visit, I usually help Mom read her mail. We read and re-read her cards and letters that she gets. Sometimes the new mail on her table are the letters from last summer. But it's all new news to Mom. She won't let me throw away a single scrap of paper, not even the ripped and wrinkled envelopes.

Last week Mom got a nice letter from a dear friend, Liz. Someone she's known since they were both young mothers together in the church community.  Liz also included a beautiful family photograph. It was of she and her husband, their children and their spouses, and all the grandchildren.  Her family, like so many of our families, is spread across the whole country. It must have been wonderful to have them all together.  Mom recognized Liz and husband (which was great) but she could not recognize any of their kids. Well, of course these "kids" are now in their 40's and 50's, not the 8-10 years old she thinks they should be.


My mother's tv/dvd player is no longer hooked up to receive tv signals. That's fine with me, because she was becoming agitated and upset by what she saw on the daily news programs. Mom can still play her dvd documentaries and movies, and sometimes she still remembers how to do that.


Last week, one evening, she watched the movie Jumanji, the dvd box was still beside her tv.  An exciting fantasy adventure movie, filmed in one of our favorite cities, Keene. So the setting of the movie is VERY normal New England scenery.  The house is a very normal New England Victorian home. The streets and buildings are very much like what Mom might see any day in town. But what happens in the movie is VERY much not normal.  Lions are in the kitchen, rivers run down the staircase, jungle vines grow through the living room windows, and giant spiders attack the actors in the attic. In the movie, the little brother, turns into a half boy - half monkey.

Mom grabs my arm and pulls me close, she wants to whisper a secret to me, her eyes are checking frantically for others who may be listening.  There is no one else in her room, but she wants to be secretive.  She points to the photo of Liz's family.  "One of Liz's children is an animal."
"Oh?!"  I say, not knowing how to respond.
"See... they have a monkey in their family."  She says it like she thinks poor Liz has been tricked, and doesn't know what's going on. She's pointing at the picture.
"Nooooooo, Mom, that's one of Liz's grandchildren..." with short dark hair, just like the little brother in the movie.

Yikes!!! Mayday! Mayday! Divert! Divert!
I think that dvd is going away.

isolation

My mother was once a VERY social person, a do-er, a go-er, a joiner.  She was always part of all the groups. Now she is not. 

She has been in assisted living for fifteen months.  She has not learned anyone's name, she doesn't even seem to want to.  She has not tried to make friends. She has not reached out to her neighbors for their companionship. She has not tried to connect with the staff. She is alone.

When I call her neighbors and staff by their names, she asks me "How do you know their names?"
"You just read their name tags" I want to snap back at her, but I don't.

There is a wall between her and everyone else.  There is a wall between her chaotic mind that contains only her and her cat, and the rest of us. She will never cross that wall and join us. She is alone, and lonely, on her side of the wall. 

Dammmmmm dementia I hate you.

escape plans

While Mom and I were working on some jigsaw puzzles I was listening in on the conversation of two of Mom's neighbors...

Tina and Barbara were rocking side by side and looking out the wall of glass doors into the courtyard. Beyond the courtyard is a fence. They were planning something. 

They were talking about pushing the lawn furniture up to the fence and jumping over.

"They took the lawn furniture away because they are worried." 
(Aside: the lawn furniture is still in its winter location.)
They both agreed they didn't know whether to go left or right on the road, because they really didn't know where they were.
"I think we're in (state)."  
"Maybe." 
"I know we're at Stuvwxyz."
"But I don't know where that is." 
Tina points to a card attached to her walker, "It says here it's in (town)." 
"Yes, but I don't know where (town) is." 
"I think it's in (state)." 
"Are you sure?"
"We could push the furniture up to the fence and jump over."
"Where would we go?"
"I don't know where I am."
"You're at Stuvwxyz."
"How did I get here?" 
"Our families dropped us off."
"I've got a car at home."
"I hope someone is feeding my cat at home."
"Are you 96?"
"No, are you?"
"We should jump over the fence."
"How would we get to Pennsylvania?"
"I've got a car at home."
"Where are we?"
"I think we're in (state)."

This conversation went around and around for about twenty minutes.

cried wolf

The boy who cried wolf or The Mom Who Cried Bra.

The musical talent that comes to Stuvwxyz is amazing. Another pianist came to play for the afternoon sing-a-long. She played, by ear, all the show tunes, patriotic songs, camp songs, and folk songs that the residents requested. It was fun.

After the sing-a-long had ended Mom leans into me and whispers "I need a new bra. This one's not right."
"Yes, Mom, your bras are pretty old and worn out."
"No, this one's not mine, they gave it to me to wear."
She proceeds to flip up her jersey and show me a beige padded bra.
"You're right Mom, that bra's not yours." I'm laughing. "You've got somebody's bra on." And it's way too small.

We go to her room to change into her own underwear. I can't find any of her bras.  They are all missing. I help the aide check the laundry room. Another aide tells me that Mom's been complaining about her beige bra. "Well, yes, it's not hers." I'm laughing.  Mom's always been a person who only wears white cotton underwear. This beige nylon padded thing is SO not her style.

After a few quick circumference measurements and a hug goodbye, I leave Mom to her dinner and drive two towns over to pick up an assortment of new white cotton bras.

When I return she is already done with dinner, has put on her pj's, and is getting ready to watch a dvd. She has put two dvd disks into the slot on the top of her tv. 

Mom is very cooperative about trying on the new bras.  From her motions and movements, I think the aides must be helping her get dressed in the mornings, more than I thought they did. I'm pretty sure she got into her pj's by herself, as today's clothes are scattered on the floor. 

We find two that fit well, I pull out my trusty laundry marker and write her name in them. Doesn't everyone carry a laundry marker with them?

So this is the story of The Mom Who Cried Bra.  She has been telling me, and I'm sure she tells her aides too, that the clothes in the closets are not hers: all she owns is a pair of blue jeans. But today she tells them that this bra is not hers and no one believes her.

You've gotta laugh or you're gonna cry.

Good thing she doesn't wear a hearing aid or dentures!

bruising

Mom had a large bruise on her upper arm. She said it didn't hurt, she could not tell me where it came from.  "Oh it's nothing!" she dismisses my concern.
I tell the nurse, who already is aware of it. No one knows how it got there.

It could be from when Mom's bed collapsed, she might have caught her arm on the bedpost. It could have been from a blood pressure cuff, elders do bruise more easily.  But it's a mystery.

Yesterday I asked Mom again how her bruise was. She shows me a patch of faint greenish skin. "Oh it's fine, you know I got this bruise when I carried in that huge armful of firewood." and she makes the motions of carrying an armful of logs.
"You're right Mom, that's probably what happened. I'm glad the bruise is going away now."

Carrying in firewood?! She hasn't carried a piece of firewood since 2008. Stuvwxyz has fireplaces, but they are gas fireplaces.

I'm glad she's solved the mystery.

spring drive

Yesterday I could not get myself up to visit Mom. I just did not want to go. I did not want to face her.  But after much delay I finally set out.

Because it was such a beautiful day, clear blue sky, and in the high 70', I decided to be brave and took Mom for a car ride. No, Mom, you don't need a jacket today, it's nice and warm out, but you can wear it anyway it looks so nice on you.  (See how I recovered from my fumble - I diverted the argument!)

Mom pushed her cart (aka the walker) to the parking lot. Not that she needs it, she tells me again, but because she likes pushing it around. I get her into the car and figure out how to fold the walker up and stow it in the trunk, it just fits.

She seems pretty alert today, she comments on all the usual things as we drive past them: the dry rivers, the extremely blue sky, the beautiful mountain, the budding trees.  You can tell a lot about someone's vision by what they can see out the car window.  Maple tree buds, check. Reading street signs and cars' license plates, check. We play the vanity license plate game, trying to figure out the coded abbreviated message as we follow the car in front of us. BRDWTCR - "Oh look, it's a bird watcher." Mom says. "You should have that one." she says as she points out HIKER.

We get to the next city and I cruise up and down Main Street looking for a coffee shop where we might have an afternoon snack before we make our way back. I have to park four buildings away from the cafe, but Mom seems perky so this walk will be a good test of her stamina, now that she's using the walker. The one step up onto the curb is a problem.

I park in front of a bank. "That's my bank, what's it doing here?"  She recognizes the green logo.
"Mom, there's a branch of that bank in every town."
"Oh, I D Bank." she reads. She is reading the logo, not grasping how the graphics make up the letters TD.  You go look at it, you'll see what she saw.

We see other folks out today with their walkers, their bikes, and their skateboards. It's a beautiful spring day.  She is laughing at all the "girls", the young college women in their sleeveless spring dresses, she thinks they are being silly.

She has a fruit cup and I have ice coffee.  Mom is doing pretty well on our outing today. Stepping down the curb to get back into the car is a problem.  Getting up out of my car, is another challenge. There is nothing for her to grab onto.  We manage somehow, her knees are shaking. But she doesn't fall down!  What would I do if she fell?

All in all it was a good day.  140 miles for a cup of coffee, with Mom, it was a good day.

loving deceit

They did it. The physical therapists, the aides, the nurses, the activities people, they did it!  They collaborated in this deceit, the scheme, the plan.   They got my Mother to use a walker. Of course she still thinks she is not using the walker. She is pushing this wheeled thing-a-magiggy, her cart, (do not say walker) to help her carry items for other people. Mom is being helpful.

And of course, it is helping her.  It helps her get up from sitting. It helps her walk in a much more upright position. It is taking some of the pressure off her knees. It helps her with stability. It helps her move faster. 

mercy

This week my husband's aunt lost her ten year battle with ALS. 

In my faith, I believe that she is now free of the body that had held her captive for so long. I can now see her as the exuberant and vibrant woman that I remember.   

At the funeral I find myself praying for mercy, mercy for my mother: please release her from the torture of dementia. Is this selfish of me? Do I just want the pain to end, for me?  Does she feel the agony?  

My cat is dying of cancer. How come we can talk about putting my cat out of her misery, but... humans are allowed to suffer.

Live free or die, death is not the worst of evils.

temper temper temper

Everything has become a battle with Mom. She has become SO disagreeable.

Her legs and knees are failing. I took her to her doctor and for x-rays. She's got arthritis in her back, in her hips, all the way down to her knees. She is adamant that she does not hurt and that nothing is wrong, but her body language tells us otherwise. 

She is now barely able to get up out of the chair. She is now cruising from one piece of furniture to the next piece of furniture, like a toddler who is learning to walk. 

I took Mom to see her primary physician, for an evaluation. The staff at Stuvwxyz and I have noticed that her walking has deteriorated, she is much more slow walking, and very slow to get up from a chair. Of course, Mom was adamant that nothing is wrong with her.
She yelled at me a few times in front of the doctor "Marrrrrriiiiiiaaaaaaa, What are you doing to me?!"
Like I've ratted her out, or told our worse secret to the school principal. 

She told the doctor that I was her sister.

She yelled at me a few more times (while the doctor was there) that I had fooled her, because I told her I was taking her to the dentist today. Which I never did. I think, she thought, she was going to the dentist because the aides made her brush her teeth, when getting ready that morning.

The doctor had Mom walk, and bend, and get up on the table, where she manipulated Mom's legs, knees, and hips. All the while Mom is adamant that there is nothing wrong with her and she doesn't know why she has to be there, because she was suppose to be at the dentist.

The doctor then quietly suggested that maybe Mom might use a walker to help her get around. At the sound of "walker" Mom started screaming and yelling. A HUGE tantrum. It was not pretty.  The doctor had to yell back at Mom, that "we don't yell in the hospital." Then Mom was yelling in angry whispers for another few minutes.  She also yelled some words about "I don't have Alzheimer's, I remember everything."

The doctor requested that Mom have hip and knee x-rays, which she did, grumbling all the time about "nothing is wrong with me."  The x-ray department was at the other end of the hospital, walk, walk, walk......
The doctor and the x-ray technician both asked Mom if she has back/hip/leg/knee pain. Mom keeps saying she is not in pain. "Of course not, I'm fine."
But the x-ray technician also thought she might be, because of the way Mom behaved as the tech moved Mom around on the x-ray table.

This is the first time I really had to help Mom get undressed and dressed. I've helped with jackets and socks and shoes before, but never have I had to hook her bra or put on her slacks or hold out her t-shirt above her arms, so she could just point her arms up in the air. Like she's two years old, well except the bra part.

Mom is now almost always walking in a snow-plow-skiing position, bent over with her thighs and knees together. This probably provides her some stability. She is now dragging her right foot.

I've also noticed, that more and more she is apt to erupt in anger at something I've said that she  disagrees with. I think this is anger coming from her frustrations, the frustration when her brain won't cooperate.

The walk from x-ray back to the car was a long one, for her.  All the time she's grumbling about how far it is, "how much further do we have to walk", "why did I park so far away"...  and then every other sentence was about how well she can walk and "why did you take me here today" and "I'm perfectly fine."  The outside hospital doors were a half flight of stairs away. I ask her if she wants to take the stairs. She looks at me like I'm crazy. "Of course not!" she barks.

This exciting trip to the doctors started and ended with a fight about wearing a jacket, hat, and gloves. It was 27'F (-3'C) out with a very blustery wind. "I've lived here for years, I know what it's like, I don't have to wear a jacket."  I carried her jacket and made her put it on before we went out. Of course she can't zip it up because her chubby hips and tummy. The walk across the hospital parking lot was very windy and cold, and being a very slow walker, took twenty times longer than it would have for most people.

The PT people are working with her again - but she is not cooperative. The therapist has left a walker in Mom's room, hoping she might use it, but instead Mom takes the dining room chairs (which have two wheeled legs) and pushes those around.  She has a collection of dining room chairs in her room.
I predict that she will be in a wheelchair by May.   

She is also destroying her chair and bed because of the way she uses them to get up and down.  The bed has collapsed a few times last weekend.  I have to fix it somehow tomorrow.... I don't know to fix it or what I'm going to do...

Her frustrations, her need to keep what little independence she has, her need to see herself as the capable and able 24 year old she thinks she is.  "I don't want to look like them" she whispers to me as she points to a group of her white-haired neighbors.

where is he?

Mom loves her photographs. For a few years now, she has been tearing apart the photo albums and re-sorting the pictures. Sorting them into groups that don't make any sense to me.  When Mom moved into assisted living, we moved her card-table with the mountain of photos, as it was, into her new apartment, so this "project" would be there for her to work on.  She really has not touched it since.

At my visit on Thursday, I brought her more photos from "home" and then, in an attempt to clean her apartment, we spent two hours going through the pile of pictures on the card-table. The layer of dust on the pictures got us both sneezing.

She told me stories about each photo. Stories that I knew were not real, true, or accurate. But sometimes Mom would pop-out a golden bit of knowledge, that would surprise me.

We were looking at a picture of me, at 1 years old, sitting on my Dad's knee on the front steps of our new home. "That's JL and the baby." she says. She does not say "her" or "you" or my name. She can't connect the baby to the woman sitting beside her.  "I wonder where JL is? I haven't seen him in a long time." Mom says this with the tone in her voice, like she thinks he's wandered off to Texas. I gasp and sputter, once again shocked by Mom's words.  I divert her attention to the next photo.

Many of the pictures were from her time teaching; the musicals she put on with her students, the bulletin boards in her classroom, the projects the students worked on, the outings and trips they took.  She was very excited to talk about her time as a second grade teacher.

There were many photos from her college years. Adventures with her sorority sisters. Class trips and other activities. "You remember swimming at Xyz Lake!" she giggled.  "We stayed in Jane's family cabin, remember, it was fun, we were all together, you remember." She would then press me to tell her what I remembered about this vacation. I forgot to fib. I forgot to "be with her in her place."  I told her I could not have been there, as I had not been born yet. Then she got angry, cause she was "right" and I was "wrong" and that "of course I should remember this vacation!"

Divert, divert, on to the next photo.

A picture of Mom and Dad on their honeymoon.  They are standing on a hilltop or cliff, with the mountains behind them. A tiny black and white photo of two skinny young people. "Oh, there's JL." she groans. "I wonder where HE is these days?"  she looks at me for an answer. "Where IS he?"  I don't know what to do. Do I give her a fiblet or the truth?
"Mom, Dad's been dead for about 12 years." I say quietly.
"Oh? Humpf." she mutters and looks at the next photo.

So much for remembering my Father's five year slow decline to death. I guess those memories didn't stay with her. So much for the grieving widow. Should I be glad that she didn't fall apart at this "news" about Dad? Dammmdementia I hate you.

groundhog day

You remember the movie Groundhog Day, where Phil has to relive Groundhog Day over and over. He knows each day is a new day, full of new opportunities or the dread of repetition. For him, the calendar will not advance to February third.

Then there is the movie Fifty First Dates, where Lucy's brain is stuck. She wakes up every morning thinking it's the Sunday of her accident, over and over.  In the movie she meets Ten-Second-Tom, who's memory loop lasts ten seconds.

Where Mom lives there is a woman, that I think of as Ten-Minute-Tina.  She is like Tom, in ten minutes she has already forgotten what has gone on before. Every ten minutes she asks the same questions "Why am I here?" "Where am I?" "How do I pay for this?"  And every ten minutes the staff, and her compassionate neighbors, try to answer her questions.

Ten-Minute-Tina's repetitive questions bother my Mother, because these are the same questions that bother her. "Why am I here?" Mom might not have spent time worrying about that question today, if Tina had not expressed it herself, over and over.

The staff is so good, giving Tina a reassuring answer, and then diverting the conversation to safe and happy topics, over and over.

yelling

I hate being yelled at.
I hate being screamed at.
I hate being belittled by my mother.
I hate her demented behavior where she screams at me because I've done something "stupid."

This was NOT how I was brought up.
These are not the behaviors of MY mother.

Who is this evil woman who has taken over my mother body?

Dammmmm dementia I hate you.

the snowplow

Mom has been slow to get up out of a chair for a few years. The muscles in the top of her thigh are just not doing their share of the work. For a few months she has been rocking herself to launch out of chairs, "one two three umpf" using her arms and the sturdy arms of the chair to help her up and out. Long ago, I realized that sitting her in a low soft sofa was not a good idea.

The past 15 months that she's been living in assisted living, she's gained about 20 pounds. That additional weight has not been helpful.

Now Mom's walking has become much worse. She was becoming a slow walker, now she is creeping. I notice that she is doing a lot more "cruising". That behavior that babies do when they learn to walk, they walk from table, to chair, to sofa, to chair, holding on to one thing after another. This is what Mom is now doing. 

She is also walking with her thighs and knees together, only swinging out her lower leg and foot. When I went to imitate her motions, I recognized it as the snowplow ski position. She has found stability in her snowplow position while she walks: bent at the hips and knees, leaning a bit forward, knees and thighs together, feet apart, toes pointing in.

Because she is still walking, she thinks there is nothing wrong. In her mind she is still running swiftly down the halls.  Trying to get her to use a walker would bring about a huge fight. Do you think she would accept ski poles?

ashes to ashes

A long time ago Dad made me a lovely pine jewelry box. The sides were all dove tailed together. The lid had a beaded edge. The surface was shaved and sanded smooth. It was my jewelry box for many years.

After Dad died his body was cremated. His ashes were returned to us in an over-sized waxed paper take-out container, wire handle and everything, like a gallon size serving of General Tsao's Chicken.  I thought Dad's remains were better suited to my jewelry box.
My brother transferred the ashes and glued the lid closed. He later told me about all the wonderful things he found in there. (I'll spare you the details.) Dad's ashes and my jewelry box are forever together in the family plot.

While cleaning out Mom's house I found another wooden box that my father had made. This one was similar to my jewelry box, but was not completed. It still needed more sanding and finishing. When I opened up the unfinished box I saw a note. In Mom's handwriting it said "For my ashes." Yikes!

This was the only possession of Mom's where she indicated how she wanted it to be passed along. I had asked her for many years to put labels on her furniture. If she knew that one of the grandchildren wanted this rocking chair or if that cousin wanted that dresser then she'd better label it.  How else would I know? I didn't want to be in the middle of family squabbles about furniture. But she never labeled anything.

While cleaning out Mom's house I found a little blue gift box, the kind of box that might have held a scented candle.  It was heavy and rattled.  When I opened it up I spilled some of the contents on me and the floor. These were Dad's ashes. What were they doing here? I guess Mom had set aside some before we interred the rest. This little blue box is now on my bookcase beside the AMC White Mountain Guide and the little gold box of cat's ashes.

...and to dust you shall return

eye drops

Mom was upset because the aides keep harassing her, they want to put eyedrops in her eyes.
"There is nothing wrong with my eyes. Why do they keep bothering me? All they time, they want to do it all the time."

Mom doesn't remember crying in pain because her eye hurt so much, she doesn't remember someone taking her to the eye doctor, she doesn't remember being told she has an infection in her eye.

the twelfth day of Christmas

So today is the twelfth day of Christmas.

I'm trying to be positive. I'm trying not to think of the angry and lost woman my Mother has become. I'm trying to remember the good stuff.

Here is a list of twelve gifts that my Mom has given to me, gifts that have kept with me throughout my life:

The ability to see color. When she taught us Junior Girl Scouts the Dabbler Badge, we learned to look at things and see all the colors. To look at a cloud and see the pink, blue, white, black, and gray. To see the red, purple, gray, brown, and black in the bark of a tree.

Mom was an enthusiastic and loving grandmother, even though she did not have an example to follow.

She let me be crafty. I made doll clothes for my troll dolls. We spent one Christmas school vacation making a dollhouse out of a cardboard box. With a sofa from a matchbox, a bed from a Christmas card box, and "Modern" fireplace from a TP tube.

We went camping, summer and winter. Though I wish I had had a better sleeping bag. I'm surprised I still have all my toes.

My parents asked my new boyfriend to come on our family vacation. They asked him to join us because we were going on a two week canoe trip and I needed a partner in my canoe. He's still in my canoe. I also think they liked him and knew him to be a capable camper and paddler.

Mom let me go away to college even when my Dad thought I should live at home and commute.

Mom pointed out that some kind loving people can still be bigots and racists; and you're never too old to learn not to be.

She taught me to buy quality. Money is well spent on a good pair of shoes, a dress, chainsaw, or flatware; rather than poorly made stuff that will need to be replaced too soon.

She taught me that volunteering is an important part of life.

We saw America, the summer of my 11th year, taking a three month cross country road trip in the van and pop-up camper. National Parks and natural wonders.

She taught me that a family is not just made up of parents and their children.

She gave me a guitar, even after I "abused" hers.

rolls eyes

"Look what I have to put up with." my Mother groans.
This is her new phrase, her repetitive response to everything that doesn't agree with her.

Mom loves to sing, she once was the Cherub Choir leader at her church.

She loved to sing with her students, her annual school play was always a musical. She would always teach her students songs that reflected on materials they were learning: Learning about frogs, she's got a song for that. Learning about the Statue of Liberty, she'll teach you a song about that. Learning about self-esteem and tolerance, she's found songs about them too. She was a member of her church choir for many years, until her last performance when she passed out under the piano on Mother's Day.

The activities people at Mom's assisted living residence include music and singing in the daily activities. I'm sure this is as successful as it is because of the background of the residents and their deep rooted love of music. One day the residents were all walking back to their neighborhood from an activity in a different part of the building. I could hear them coming down the hall. A little parade of ladies and gentlemen all singing together, just because. Another day Mom's neighbors were gathering for supper, but the food had not yet arrived. So we all started singing silly songs about food. "On top of spaghetti, all covered with chee-eeese..." Do you know, these folks knew ALL the verses!

Yesterday, during my visit with Mom, the activities director stopped by to invite Mom to sing.
"The Stuvwxyz Singers are gathering in the parlor, we need your voice."  She has turned a routine activity into a singing group. They are a choir, they are practicing, they have a purpose. They take their music to share with the other neighborhoods of the assisted living residence.

We are singing rounds today, Frère Jacques and others. 
"Mom, I remember you teaching us to sing this round in Jr Girl Scouts."
"Look what I have to put up with." she replies.
So I hear it, the disdain in her comment. She knows that she should be the one leading the singing. She knows that she should be teaching today's songs in four part harmony, as these are adults who can sing. That they are all singing children's rounds is... silly.

But, she can't keep the four lines of the song in order in her head. She can't keep on track as we break apart into two groups to sing the round as a round. 
We move on the other songs. Songs with lyric sheets. Her reading skills are not so good. She is stumbling with the printed word. Songs she knows, but she doesn't.

What she thinks she is capable of doing and what she can do are far apart.

I think back to when she was living alone at home. She thought she was cooking, eating, bathing, cleaning... but she wasn't. She thought she was driving safely... but she wasn't.

selfish dreams

This morning I wrestled myself awake from the midst of a disturbing dream.
One of those dreams that make you feel physically sick, and clings to your soul like pine pitch.

I was a teen, biking from the house my Mom still owns to "home", the house where I grew up. Then on a lonely piece of road my bike tire went flat, the whole wheel bent all out of shape and fell off the bike.  I'm carrying and pushing my bike, when I see a man coming towards me. He has a hunting rifle and is mumbling to himself.  He sees me and starts to walk faster.  He is close enough that I can hear him yelling threats at me.

I walk up the ramp onto the highway, pushing and carrying my bike, the man is still following me yelling his evil intent.  I walk off the highway into the rest area. There is a coffee shop there, full of teen boys watching cartoons on the big plasma tvs, and drinking coffee. The man follows me in.  I feel safe in the company of these other kids.  The man sits at a table of other men, they are all talking as if they know each other.

I get a cup of coffee, and go to a corner table. I hide myself under my jacket and call my Mom on my cell phone.  (This is weird because cell phone didn't exist when I was a kid.)

"Mom can you please come and get me, my bike tire is flat."
"I just started my lunch." I can hear her eating while she's talking.
"Please come get me, my bike is broken."
"Well, I'm eating now."
"You can finish your lunch first, it's ok. Please come and get me."
"Well, you're being very selfish." she says.
"Can you come and get me?"
"Well, you're being very selfish."
"Please, my bike is broken."
"Well, you're being very selfish."
"Mom... there is a big scary man following me, I can't walk home."
"Well, you're being very selfish."
"Please come get me."
"Well, you're being very selfish."
"Mom, he is following me."
"..."
"Mom?" There is no reply from my Mom. "Mom?"  All is quiet on the phone. She has not hung up. She is just not talking. This goes on and on in my dream. Me pleading and her non-response.

When I end the phone conversation and get out from under my jacket, the big scary man is staring at me chuckling to himself, as if he's heard every word I spoke to Mom.

I walk over to sit with the boys watching cartoons. I am shaking in my dream and in real life.