alone

I just finished reading the book "The All-Weather Friend's Guide to Alzheimer's Disease."

Mary M Cail ends her book with this thought: "Dementia is a hard road to travel. Keep someone you love from traveling it alone."

Life is hard, having a friend to travel along with you is wonderful.
I am so grateful for Mom's friends, who visit with her still.

praying with Sam

When I got to Mom's yesterday, she was in a state of agitation. She couldn't find her church newsletter. She couldn't remember the name of her minister.
"I remember Rev. H__" Mom said "I really liked him" (Rev H_ was from her church in the 1940's.) Mom needed to find her newsletter. "Tell me his name!" she yelled at me.
"Your church has a new interim minister, Mom, I don't remember his name."
"Well you go there too! Why don't you remember!" she barks.
"I don't remember his name." I don't correct her, I don't go to her church, I really don't remember.

Apparently one of the aides had been in her room earlier, to invite her to a worship service later in the afternoon.  Mom felt that she needed her newsletter as proof that she was a church member (?) or because the worship was being lead by someone from a different denomination than her own (?) who knows.

We join about a dozen other people in the parlor for Tuesday afternoon worship. Gathered around in a circle: Mom's neighbors, some staff, some family members. Somehow I end up across the circle from Mom, sitting between Anne and Sam.

We have the order of worship booklets and pages of Christmas carol lyrics. Long pauses throughout worship, while we all stop and help one another find the right page for the words or lyrics. "We're going to sing "Angels We Have Heard On High" on page eight." I fold over Anne's papers, I point to the beginning of the lyrics, she points to the wrong song, I point again, she points, I smile in acknowledgement. She gets lost on the page again, I point, running my finger along under the words. It is amazing how well our small group can sing. Some of these folks hardly mumble or talk, but they sure can sing.

I don't think Sam can read any more. But a lifetime of worship stays with him, he knows when to mumble the appropriate response and to hum along with the hymns.  During one of the prayers Sam takes my hand. I squeeze his back. After the prayer is over, he won't let go. There I am, my left hand is helping Anne follow the order of worship, my right hand is with Sam's.  Hanna hears our singing from across the hall and wanders into our circle, clutching her baby doll. It's like a bizarre dramatization of the scripture we've just heard, of Mary and her newborn son.

During communion the minister comes around the circle and asks each person if they want to partake. Mom begins a conversation about how in her congregation, she served everyone individual cups of grape juice. I'm laughing and rolling my eyes. Yes Mom, once upon a time you were the deacon who served. Now we're here in the "church of those gathered around the card-table in the parlor". I'm so grateful for this minister, who gave his afternoon, to lead us in worship. To tell us THE story that we've all heard a hundred times before, to sing carols we all know by heart.

We end worship with "Joy to the World", my left hand with Anne, my right in Sam's, smiling at my Mother, she is singing loud and clear. I can't sing, I'm all choked up.



I love to tell the story of unseen things above,
Of Jesus and His glory, of Jesus and His love.
I love to tell the story, because I know ’tis true;
It satisfies my longings as nothing else can do.

I love to tell the story, ’twill be my theme in glory,
To tell the old, old story of Jesus and His love.

I love to tell the story; more wonderful it seems
Than all the golden fancies of all our golden dreams.
I love to tell the story, it did so much for me;
And that is just the reason I tell it now to thee.

I love to tell the story; ’tis pleasant to repeat
What seems, each time I tell it, more wonderfully sweet.
I love to tell the story, for some have never heard
The message of salvation from God’s own holy Word.

 

I love to tell the story, for those who know it best
Seem hungering and thirsting to hear it like the rest.
And when, in scenes of glory, I sing the new, new song,
’Twill be the old, old story that I have loved so long.

small talk

Small talk - I'm terrible at small talk. I'm socially awkward. What should I talk about with my husband's work associates at the company holiday parties?  What can I say to the spouses of my work associates?

I have always loved the scene in the movie "While You Were Sleeping" when the new fiancee is enraptured by the conversation around the Christmas dinner table. "These potatoes are so creamy. John Wayne was tall. Dustin Hoffman is not tall." She is overjoyed by the crazy conversations.

Can you follow the conversation around your own family's holiday dinner table? There is never one conversation at the table, there are many threads, all crossing and weaving together, branching off and coming back in. The larger the table of people the more crazy the conversational tapestry.

I'm reading another book  The All-Weather Friend's Guide to Alzheimer's Disease, by Mary M. Cail PhD

Chapter 12: the author invites Michael and Elaine to her home for a dinner party. Elaine has Alzheimer's.  Michael has become an isolated caregiver. Michael and Elaine have been socially dropped from most of their couple-friend activities. Elaine's conversational abilities are scant. Her sentences don't make sense.

As the evening unfolds the author realizes, that if you were to look at a silent film version of their dinner party you would not know that Elaine has Alzheimer's.

The other people at the party were willing to converse with Elaine in HER time and space. Responding with interest to her garbled sentences. It's not what you say it's how you say it. 

Smiling with your whole self, touching, looking someone in the eyes. Being with them where they are. Who cares what the words are. Do you really remember the point/theme/plot of any dinner party conversation?  There is not going to be a test.

What do we remember from the holiday table? The good food, the laughter, the companionship, the togetherness.  It's all small talk, just now, with dementia, some conversations are much smaller than they use to be.

pack it up

The auctioneer came, packed up, and took away the contents of Mom's house.  Yes, I know it's been over a year since Mom moved into assisted living. I've been emotionally unable to get this task done.

Oh, bit by bit I have dispersed some of Mom's possessions, but the bulk of it all has remained, sitting in a cold dark house. The children's books went to the school library. Craft supplies were sent to a group. The pots and pans went to a young friend who just moved into her first apartment. Clothing went to a shelter, linens went to a sick friend. Mom's basket collection will become gift baskets, maybe already carrying a turkey dinner to someone in town. One rocking chair went to a grandson. The flatware went on eBay.

There are a few odd collections left, items that I'm not sure what to do with, things the auctioneer didn't think he could sell.

It was hard, watching the furniture move onto the truck. The old marble-top bureau that I had used all throughout my childhood. I had watched myself grow-up in that mirror. I had dusted every curve and groove of that bureau, my hands knew the feel of every carving.  I keep reminding myself, it's just stuff. Clinging to it will not heal Mom, it will not make her any more able. But, this truck of furniture will now become a liquid asset, to allow her to stay at the assisted living residence for a few more months.

One of my sons came to be with me while the auctioneer and his team packed the truck. There was nothing for him to do. We both just stood around with our hands in our pockets, watching. But to have him there with me, gave me the strength to be there.

Somehow it all still feels wrong... Mom's still alive. But she has no idea what I'm doing. She has no idea what I've done with her house and her collections, her furniture and her books.

a birthday

Happy Birthday Mom.

Her neighbors and staff celebrated her birthday at breakfast.  There were cards, singing, a corsage, and some cat-themed gifts. Everyone knows Mom loves her cat!

The staff knew that I was taking Mom out for lunch, and that we were meeting up with her girlfriends from the Birthday Lunch group.

How old are you? Is a usual question at a birthday party. But for Mom, she has no idea how old she is, and she doesn't want to accept 76 as the answer. One of Mom's friends in the Birthday Lunch group was adamant that Mom acknowledge that she was 76 years old. I wanted to smack this woman. Mom just doesn't understand, and you can't make her understand.

The lunch out was nice, the conversation flowed about friends gone and friends that are away. Mom was quiet for the most of it. Could she have put a name to each of these dear old friends, gathered around the table, celebrating, laughing, joking, as they have done monthly for the past twelve years? No, I don't think so. I think even the ability to recognize some of them as "dear old friends" had escaped her.

Mid-way through lunch Mom had a mini-tantrum, the onion rings were bothering her, she wanted them off her plate. Easy enough to remove them from her sight.

After lunch we all returned to Mom's place for birthday cake and conversation. I had baked Mom's favorite carrot-cake, one of those famous family recipes. She didn't want cake! She doesn't like cake! She always has a cookie and milk for her dessert and that is what she wanted! The staff all smiled and nodded, they were prepared with Mom's cookie. I fed them cake. I cut pieces for Mom's neighbors and the ladies from the Birthday Group. 

Two of the women from the staff sang a beautiful song to Mom. A song that made me fill up and cry. I had to walk away, to scream silently in the hallway, to howl.

After all the activities today, she can't hold onto the idea that today is her birthday, all the goings-on are for her, we are all there for her, for her special day. Lunch and cake have been too much for her. She is tired, she is lost, she is spent. I still don't think she comprehends that it was her birthday. Cake + flowers + cards + balloons + gifts + singing = ??

who

My son and his wife went up to visit Mom yesterday.  It hurts, no matter how old you are, when your grandmother doesn't know who you are.  My d-i-l told me, "It was an emotionally exhausting visit."

anosognosia

Paula, over on her blog MindingMum, pointed out a brochure about anosognosia from the AlzOnLine.
Yup, anosognosia describes my Mother exactly! Add the independent personality to the dementia with the anosognosia and you get one stubborn woman.

lunch

A few weeks ago I told you that Mom's sorority sisters were going to visit and take her out for lunch.  I told Mom this on a Tuesday. She was dressed and waiting all day Wednesday and all day Thursday. Thursday at 1:00 I got a call from Mom's aide: were these ladies coming to take her out for lunch? I had no idea. I was at work and had no way to get in contact with them. It was a very rainy day, were they lost, broke down? Did they ever call and excuse themselves?

At my next visit with Mom, she told me she was angry that she had missed her "meeting at the sorority" and that she would have gone if she had her car.

The ladies did finally make it up to visit Mom. They took her out for lunch.  The note I got from one of them said that they didn't think Mom knew who they were. She couldn't connect the old names with these old faces. She couldn't even participate in the conversation about the "good old times".   When I asked Mom how her visit was, she didn't remember going out to lunch at all. She was still feeling angry that she had missed the original "meeting at the sorority".

I am grateful for these ladies for trying to maintain the bond of friendship that has been there for so long. To reach out one more time, before they all fly south for the winter.

the book

I got the first sign of affection from my Mother today, since...I don't know when. She reached out and touched my hand. An acknowledgement and thanks for something I did for her.

Dammmdementia I hate you.

Maybe fifteen or so years ago, Mom had written thirty-five poetic stanzas about all the animals that visit her yard. Something suitable for the early elementary school reader, something that her students would enjoy. Simple zoology, factual and fun animal poetry. As I was cleaning out her house I found many copies of this work, each printed off her computer with edits and corrections.

All through the years we've talked about getting this book published. Perhaps a cartoon of the animal one side of the page, with the appropriate stanza; and on the facing page a real picture of the animal with information about it. Science, poetry, art... all rolled into one. That was the kind of teacher my Mother was.

But time is running out, Mom's reading and comprehension skills are fading.

There are many places on-line where you can get a personal book made with your photos and your words. This seemed like a way to get the poetry to become an actual book.

It arrived last week, not bad, I should have gone with an even larger font. I couldn't wait, I couldn't save it for Mom's birthday (in three weeks), I couldn't save it for Christmas, I had to give it to her.  And because it is special to me, and I hope to her, I wanted to give it to her quietly, without the distraction of celebrations.

"Did I write that?" she asked me ten times.
"Yes Mom, your wrote every word, your name is on the cover."
"I don't remember these."
"Can you read to me about the fisher?"
As she reads the stanzas, sometimes I know she is reciting it from memory, other times she is stumbling over the printed words.
"Did I write this?" she asks again. "Do you have the original? Can I see what I wrote?" She is trying to puzzle this out, as if she could only believe it was her poetry if she could see it in her own handwriting. After flipping through it for a while, I finally get her to read it to me, all of it. Then she reached out to touch my hand.
She told me that this could be her Christmas present. Her gift to me was her touch.

recipes

I moved Mom out of her house one year ago.  Time flies, even if you're not having fun.

Another task on the procrastination pile, was to go through Mom's cook books and recipe cards. It turned out that it wasn't as hard to do as I had anticipated.  Her beautiful handwriting, spoke to me, a part of her that is gone, her artistry, her clarity.

If I kept the cards would it help to "keep" my mother? No, of course not.  But throwing them away, one by one, seemed so mean. Mom, can't we bake these cookies, together, one more time?

My Mother's mother died when she was young, she never had her own mother's recipes. I think the new step-mother threw them all away. It was always a sore spot for her, because her mom was a great cook.

So when I grew-up and left home, I was keenly aware that I should grab the family recipes while I had a chance. My collection has always included the family favorites and as I found out last night, Mom's recipe card collection included some from my repertoire. As I already had all her best recipes, what was the point of saving any of these cards? I kept about six, the most favorite from my childhood, soiled and stained, bent and smudged cards, with Mom's beautiful handwriting.

What I didn't expect to find in this huge pile of cookbooks and cards was Mom's aunt's recipe notebook. It is a collection of little slips of paper: lists of ingredients with no titles, no directions, no temperatures, nor time. This aunt, like her sisters, were all reported to be excellent cooks.  Who knows what I will find in there when I read through that book. Maybe the recipes for her legendary banana cake or historic holiday leg of lamb.

old friends

Some of Mom's sorority sisters are going to be taking her out for lunch tomorrow. When I told her that yesterday, she could not gather her thoughts around the meaning of those words. It was so hard to see that.

These ladies all went to "teachers' college" together in the 1950's. It's wonderful that after so many years, they still get together once or twice a year. And it is wonderful that they are willing to travel way up there to see Mom, to still include her.

When it all finally clicked in Mom's mind, her next reaction was:
"I don't have anything to wear."
"Yes, you do Mom, you have a whole closet of nice clothes."
"Those clothes aren't mine. They were left over from somebody else."  So we proceeded to have a round and round conversation/argument about whose clothes are in her drawers and closet. (Divert!!)
"Let's go pick out an outfit for you to wear to lunch on Thursday."
"When? Who's coming?"
"Some of your sorority sisters are coming on Thursday. Look I wrote it on your calendar, today is Tuesday, in two days you'll go out to lunch."
"What day is today?"
"Today is Tuesday (pointing to the TUES on the digital clock) in two days you'll go out to lunch. Your sorority sisters are coming on Thursday. Look I wrote it on your calendar ."
Why does this conversation still surprise me?  Mom hasn't known her days and time for over two years.

I got out Mom's college year book and found the group photo of the sorority.  I read off some of the names of some of the ladies I think will be visiting. "Look, here's Annie and Lauren and Margaret and Irma and you."  She cradled the yearbook in her arms. Running her finger over the photo and pointing out people. This was something familiar. She reclined on her bed, cuddling the book, looking at all the young women wearing their sorority blazers and dark skirts. It was like she was hugging her teddy, comfort and familiarity.  What will she think tomorrow when six gray-haired ladies come to take her out for lunch?

My husband asked me if my Mom knows when I'm coming to visit her. Meaning, do I call her in the morning to let her know that I'll be there later that day?  No, I haven't done that in years, I just show up. Why call her and tell her I'm coming, and then have her worry for the next few hours that I'm not there; or have her forget altogether that I was coming and had called in the first place.

"I have a photograph, Preserve your memories, They’re all that’s left you..." Old Friends by Simon & Garfunkel

thoughtful writing

I just discovered the New York Times writer Paula Span.  I find her writing thoughtful and thought provoking. Here is a list of her posts.

jealousy

I am half way through reading Tears in God's Bottle by Wayne Ewing. I would recommend it to any spiritually minded person who is dealing with Alzheimer's disease.

Wayne's wife Ann has Alzheimer's disease. In the third chapter Wayne talks about Divine Jealousy. He was angry, hateful, and jealous whenever he saw other couples; "joyful lovers" he calls them.

I too was feeling full of angry jealousy last week. I have a mother, but I don't. We SHOULD be going to the Museum of Fine Arts and enjoying a day in Boston together. We SHOULD be making Christmas wreaths together. We should be ... but we're not. All this jealously erupted at my caregiver's support meeting last week, I completely lost it, I yelled and cried.

I am also full of shame, ashamed for these feelings. I've had my mother for 50+ years. It's been a pretty good run, for the most part. But, my lovely daughter-in-law, lost her mother a long time ago. Here I am complaining of ONLY 50 years together, when she had barely a handful of years with hers.

Just as Wayne has to rethink his jealously, to rise above the negativity and despair that hits us all. I am trying to do that too. He writes of the sacredness of jealously. Now when he sees couples, he rejoices that they too have found love, love like he and his wife Ann once knew.

I must remember to cherish all mother-daughter relationships. The one with my own sweet and supportive mother-in-law; and the growing mother-daughter relationship with my own daughter-in-law.

I will try, to rejoice, when I next see a mother and daughter together, and be happy that they too have this precious relationship that I once had.

six little quilts

Well, I have some exciting news! Six of my Priority Quilts will be at the International Quilt Festival in Houston TX next week. These six little quilts will be a small part of the HUGE Alzheimer's Art Quilt Initiative (AAQI) special exhibit and sale. The AAQI is bringing 1500 Priority Quilts to the festival. Fifteen hundred - wow! Everything is bigger in Texas.
The AAQI put together a fun video to show some of them, if you don't blink you may see one of mine.

I started quilting for the AAQI one year ago. I have made it one of my priorities to make Priority Quilts. With all those sleepless nights worrying about Mom, it's not a hard thing to do.

The International Quilt Festival in Houston is one of the largest and most prestigious quilt festivals in the country. To have a quilt pass the jury and be exhibited into the show would be a real honor. My beginner quilting skills are far, far from that day.

So it's been providing me with a laugh, that I can say with all the truth of a Alzheimer's-caregiver-fiblet, that "I have a quilt at THE Houston quilt festival".
It's like saying "I went to MIT", when in reality I took one post-grad course, off-site, pass-fail.

If you are in Houston next week, November 2-6, go to the George Brown Convention Center - exhibit hall row T, and see the 1500 AAQI Priority Quilts. (It's in the same area with Project Linus and 1,000,000 Pillowcase Project. Two other great groups.)

The AAQI always has Priority Quilts for sale on their website.
(The AAQI project ended and their website closed Dec 2013.)

eyebrows

I've inherited many of my mother's physical characteristics: narrow shoulders, wide hips, freckly skin... and her eyebrows. I think shaping my CroMagnon-man eyebrows was the only feminine grooming pointer my Mother ever taught me. 

Whenever I see Mom I give her the once over - I check her out and really look at her. I look for signs of bathing, or lack of bathing. I look for new spots or bruises. I check her nails. I look to see if her glasses need to be washed.  I check her out because I know she doesn't.  In her boredom or anxiety she will sometimes pick at a piece of skin until it's bleeding. Every so often she'll let me get a peek at her torso if I ask to see her stitches.

Yesterday when I was visiting, during our quite time together in her room, we were talking about her friend JT.  Mom and JT went out for lunch and a scenic ride this week. Mom is so blessed to have JT for a friend.

So we're chatting and I'm giving Mom a look over. Something about her face was different. Something just didn't look right. I lean in real close and look.
"Mom, what happened to your eyebrows?"
"There's nothing wrong with my eyebrows."
"Mom, where are your eyebrows?"
"Oh I plucked out all the white ones."
"Oh...ok..." I try not to make any more stupid remarks. Mom has plucked out almost all her eyebrows. She's got day-old stubble where her eyebrows use to be.

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

apathy

I definitely saw apathy in my Mother's behavior.

But... the question is how is that different from: (1) winter SADD, (2) winter weather restricted isolation, (3) sadness from the loss of a spouse or partner, or (4) depression.


http://www.docguide.com/neuropsychological-correlates-apathy-mild-cognitive-impairment-and-alzheimers-disease-role-executive?tsid=5

sharing

There is a lot of sharing that goes on at the assisted living residence. Sharing, borrowing, collecting, redistribution of assets... call it what you will.

But don't call it stealing, it is definitely not stealing. Stealing is when you know something is not yours and you take it anyway.

It's not stealing to walk into your neighbor's room and take their photo album. Because you once had a photo album just like that one, and the people in those photos look just like... her, you know, him, those people.

It's called collecting when your roommate has 15 toothbrushes and 6 tubes of toothpaste you have 0.

It's called redistribution of assets when the once all green bath towels are now burgundy, blue, yellow, and white.

Yes, when I first moved Mom to assisted living I put her name inside all her books, I labeled all her dvds, I ironed name tags into all her clothing. I wrote her name on all her sheets and towels. Now it really doesn't matter, does it? Her stuff is around there someplace. Her hair brush could be visiting with a neighbor. And, whose lace curtains are these, on the back of Mom's chair?

the Walk to End Alzheimer's

please ask, please tell

Today is the end to Don't Ask Don't Tell.
I feel the same way about Mom and her dementia.
No more secrets.

Please ask, please tell.

Please, ask me how she is. Ask me about her, remind me of who she is and how much you like her. Ask me if it's ok to visit her, ask me if it's ok to write or call. Yes, yes, yes!!!

And tell - tell everyone. My Mom is being destroyed by her dementia. Her original diagnosis is vascular dementia. Does that mean she doesn't have Alzheimer's disease? Maybe, maybe not, but does it really matter? She has an incurable progressive dementia illness that will someday take her from us. So tell, tell everyone what's going on.
Help me raise awareness about Alzheimer's disease. Help the Alzheimer's Association as they help us through this nightmare. Any research done on brain health is good for us all. Any cure for Alzheimer's will provide insight and hope for other brain illnesses.

Today is World Alzheimer's Action Day - please ask - please tell.

change change change

How has Mom's dementia affected me, how has it changed me? I was wondering about that the other day when I realized that... as silly as this sounds... I'm not afraid of "old people" any longer.

When I was growing up there were no elders in my family, nobody lived long enough to become "old". The only elders I ever knew were the folks that I saw in nursing homes when visiting with scout groups or church groups, standing huddled with my peers while singing carols or passing out May baskets. YOU know how scary nursing homes can be to a child: the people talk different, they move different, and they smell different.

I never considered my neighbor, Auntie Ruth, as old. Because even in her eighties she was still gardening, active in church, and happy to play with us little girls from the neighborhood.

How else has Mom's dementia changed me?
I try to cherish each moment. I try to find joy in little things.
I believe in support groups.
I cry a lot more. The grief fills me up and spills out my eyes. So... I don't wear as much mascara as I use to.
I'm not afraid to introduce myself to complete strangers.
I've become better able to communicate on the phone to advocate for my Mother's needs and rights.
I go to the gym and exercise regularly.

And Mom's dementia has reminded me how precious my brother is, he's grown from that cute little kid, to an amazing man, with a wonderful family.

Heartbreak to Hope coming to NH

from the Alzheimer's Art Quilt Initiative (AAQI) website:

The exhibit: "Alzheimer's Illustrated: From Heartbreak to Hope" continues its five-year journey across the United States with a stop at the Belknap Mill Quilters Guild Quilt Show, October 1-2, 2011.

The exhibit will hang in the Conference Center at Lake Opechee Inn and Spa, located at 62 Doris Ray Court in Laconia, NH.

Thank you Belknap Mill Quilters for hosting this exhibit at your quilt show!

flash mobs

There was an Alzheimer's Association flash mob at Faneuil Hall yesterday. To raise awareness and promote the "WALK to End Alzheimer's".

There was also one in Seattle last weekend.
(I don't know who took these videos - thank you for letting me link to them.)

I'm watching these YouTube videos of people dancing, being silly, raising awareness, making other people happy... and I'm crying, sobbing all over my keyboard. Every person there, every dancer represents someone with Alzheimer's, someone they love has this disease. Every person there is going through this heartache too.

who?

Today, Mom greets me with the query "And who are you suppose to be?"

the idea library

More good resources at the Idea Library
http://www.alz.co.uk/icaniwill

hi Mom

It took Mom a while to recognized me.
I stumbled through "Hi Mom. How are you today Mom? It's good to see you today, Mom."

All the time she just stares at me with a blank look on her face. "Hi Cat, how are you today?" I pat the cat and grit my teeth. I try not to burst out crying, I try not to run hysterically from the room, I try to keep it together.

The blank stare, the hollow expression. Then she finds me.

natural disasters

It's been quite a year for natural disasters.

We had huge amounts of snow this winter, with many rooftops buckling and collapsing. Then in March there was the horrible earthquake and tsunami in Japan.

In June a tornado or two cleared a path across the state of Massachusetts, where tornadoes hardly ever stay on the ground for that distance.

Earlier this month the whole eastern part of the US felt the earthquake in Virginia, which cracked the Washington Monument.

And this week Hurricane Irene gave us a thorough soaking and almost washed away the state of Vermont.

What has this weather report to do with my Mother? Mom watches the news on TV, she sees images of these natural disasters over and over.

When I was visiting Mom last Thursday, we discussed the coming of Irene, which would probably just be a very bad rain storm by the time it reached Mom’s area.

Mom reminded me of the Great Hurricane of 1938, when she got caught in the storm and was pushing me in the stroller across town in the rain and wind. Of course, I didn’t correct her, because in 1938 she was the one in the stroller, not me.

My Mother’s father was born on the day of the 1906 San Francisco earthquake. No one in the family ever noticed that connection until recently. It’s probably because in 1906, that horrible news never made it to the little New England town where he was born. There was no YouTube to let us immediately see, hundreds of personal videos of these disasters. There was no CNN or Weather Channel. There wasn't even radio. People didn’t hear about all the things we hear (and see!) now.

Last month, when they moved my Mother from the independent wing to the not-so-independent-wing they told her a therapeutic fib-let. They told Mom that she had to move to the new room because they needed to do some construction on her old room. Something had broken and it would take a few weeks to fix it. They had to move all her stuff so that it wouldn't get ruined by the plaster dust... yada, yada... you get the idea.

So Mom is in her new room in the new wing of the building.

Last month she sighs and says "Nothing's the same."
"Oh? What's not the same." I ask.
"This place, it's all new, it's too bad what happened to the other part of the building."
"Oh? What happened?"
"You know! The tornado! It ruined _____. That's why I had to move down here."
"Oh, that's terrible. I'm glad you're safe here."

This morning my brother and I were talking on the phone.
Mom told him that she was sad because she can no longer go to the lounge for games and sing-a-longs... because... the hurricane washed it all away.
Fortunately these disasters are happening only in Mom's mind, not at the assisted living residence.

Mom's mind: that’s a natural disaster of a different sort.

book review

I just finished reading the book Alzheimer's in America: The Shriver Report on Women and Alzheimer's. It's a somber read. It's a concise synopsis of the effect of AD on everyone. Yes the title specifies Women, but it talks about all of us, those with the disease and those who have to care for them.

The most powerful part of the book is that many of the chapters of the book are written by other people. People who have AD and people who know someone with AD. It is the raw emotion of their words that reminds us that we are not alone. It is akin to being at my support group. Sometimes it just helps to know that you are not the only one going through this. You nod your head and cry too.

Thank you, Maria Shriver, for using your VOICE to educate people about Alzheimer's and it's impact on all of us.

the WALK to End Alzheimer's

I am participating in the WALK to End Alzheimer's this fall.
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.

But I can ask you to join the WALK yourself, or pledge to a friend who is walking, or to the Alzheimer's Association in general.

They have been a great help to me.
They have great resources.
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

As they say
"Alzheimer's is a thief who robs us of the people we love."
Ain't it the truth.

two years

It's been two years that I've been blogging about Mom and this nightmare of dementia. As I look back, I think this journey started in 2006, something was just not right with Mom.

Quirky self isolating behaviors.
The excuses - the covering - the coping -

I don't have to go to every meeting.
You do it.
Write that down for me.
I'll do it later.
That phone doesn't work.
I'm fine.
The computer isn't working again.
I had to buy a new printer the other one wouldn't work.
This remote control doesn't work.
You have to come and take me to the doctors now.
This key doesn't work.
I'm going to heat up some V-8 juice for supper.
I don't want to drive after dark.
The grass is wet I'll mow it tomorrow.
I had to drive down there to turn around.
The garage door opener is broken.
I don't feel like it.
You have to fix this computer now.
This ATM card won't work.
Get your nose out of my business.

It seems like she couldn't solve problems. She could not gather the right thoughts to help her deal with obstacles or to handle situations that were different.

So when she turned off the computer's surge protector, and then the next day she wanted to use the printer and it didn't work, she "solved" the problem by buying a new printer.

So when the smoke detector went off because she forgot her dinner on the stove. She "solved" the problem by silencing the smoke detector with a broom handle.

So when she misplaced her key ring, instead of looking on the key rack for the spare keys, she ordered new lock and keys for the P.O. box and new keys for the car.

And instead of asking for help, she denied that anything was wrong and covered her mistakes.

I wish my Mother could have been brave like Janet.

that necklace

Mom has a necklace she wears every day. It has great sentimental value for her. It is big and brass and jingles. Every day she wears her too-tight jeans and her brass necklace.

When I took her to her doctor's appointment last week, as she undressed, I put the necklace in my purse, and then I forgot about it.
By Saturday Mom was in a panic. She could not find her necklace. Mom wrote up large posters and hung them in her bedroom windows, facing out to the woods. "Find my jewels."

She told her friend she had lost "something" she had lost something very special, but she couldn't even say the word "necklace". She's clutching her breast and crying, "You know, you know that thing, I lost it." She told her friend that she had lost it while bending over the river. (How did a river get into this saga?) This friend helped Mom look in all her drawers and in and under her bed.

Finally one of the aides remembered that Mom and I had gone to the doctors together, and called me. Yes, it's here in the bottom of my purse. I feel like I have the baby's pacifier or the toddler's favorite stuffed animal.

When I called Mom to tell her that I "found" her necklace, she was almost crying. "You don't know how much it means to me."
You're right Mom, I don't understand, I don't understand how you can be so fixated on this necklace, how you can spend hours and hours crying about it, but you don't even care (care, remember, know) if your brother has visited you this year, or if your son has called you today.

I also don't understand your anxiety about your cat. You don't like to leave him alone in your bedroom, you're afraid he's going to be lonely. Yet, you don't play with him.
"I have to see the cat."
"He's ok Mom, he is laying in the sun, on your bed, taking a nap."

"I HAVE to go see him!
He's my family!
YOU don't understand." she yells at me.

I don't understand. Damndementia, stab me in the heart, why must you be so cruel.

purple skin

Mom has a huge bruise on the back of her hand.
"Mom, what happened, how did you get that bruise." I'm holding her hand in mine, the bruise covers the whole back of her hand, it is purple, yellow, and green.
"That's not a bruise, I don't know what you're talking about."
"Mom, your hand is purple."
"That's not a bruise, people can have different colors of skin, you know."

I'm worried - yet I'm laughing on the inside.

Here is the second grade teacher part of my mother popping out. She is reaching way back in her mind to teach me all about our "under-under-wear." She would teach her second graders that, just like we can all have different color underwear, we can all have different color skin.

Yes Mom, but purple is an underwear color, not skin color.

gray hair

"Your hair is real gray, my hair is naturally brown."
"Yes Mom" today I slide in the comment "I dye my hair gray so I'll look older."
"I know you do."
If I have to hear about my old gray hair one more time I think I'll explode.

the mini-test

All day today dementia has been taunting me. "I've got your Mother and you can't have her. Na na na naaaa na."

From the first response to my "Good morning Mom." "oh..." to the last response "Bye Mom I love you." "umm..."

Today was Mom's annual physical with her primary care physician. Her doctor is wonderful, we are so lucky. She really listens to Mom (and me) and is thoughtful and respectful. I gave the doctor my list of concerns, the first item was Mom's continual loss of cognition, her mental decline. This summer she is having a hard time with he/she and him/her. She doesn't remember anybody's name. Sentences start out about one thing and quickly morph into a totally different topic.
"We had chicken for lunch because the cat likes to sleep with me." I hardly ever hear one complete sentence.

Mom's doctor decided to give her the Mini-mental screening again. I think Mom only got two answers right, she could name a pen and a watch when asked "What is this?"

We had been waiting in the examination room for a while, Mom in her johnny and me with my notebook. We discussed all the posters on the walls: osteoporosis and spinal curvature, using bug repellent to protect you from ticks, hand washing safety, and the farmers pictured on the calendar.

"Do you know what month it is?" the doctor begins.
"Hmm, well we had the fourth of July."
"Do you know what season it is?"
"Oh? Um, it's spring."
"Do you know what year it is?"
"I don't have to know what year it is, no one asks me that, I just show up when they tell me it's dinner time."

The calendar is directly across from her, she doesn't even know how to find the answer, how to cheat, how to look up to the calendar to find the answer. She can't use her tools.

"Do you know where we are now?"
"Stuvwxyz blah blah blah, but we just call it Stuvwxyz, I don't know what the rest of the words are, I don't need to know all the rest of the name, but we just call it Stuvwxyz."
"Yes, Stuvwxyz is where you live, but do you know where you are now, right here with me?"
"ummm..."
"Do you know the name of this hospital?"
"aaah..."
"Do you know what town we are in? Do you know the town where Stuvwxyz and this hospital are?"
"ummm..."
"I'm going to tell you the name of three objects: apple book coat; repeat these three words: apple book coat"
"Apple cook boat"
"Apple book coat"
"Apple book coat."
"Good"
"Repeat this sentence exactly as I say it: No ifs, ands, or buts"
"No if and buts."
"Now can you tell me those three words I had you remember"
"Apple.... ummm" Mom is even holding her coat in her lap, and a there is a book in mine. ABC, 1,2,3, the book and coat are gone.

Aunt J

Mom's Aunt J__ was a headstrong and critical woman, someone who was always hard to please. Aunt J__ has been gone for almost twenty years.

Mom likes wearing her favorite pair of jeans, she wants to wear them every day. This faded pair of jeans are too small, they are ready to burst at the seams. I show her her other clothes in her closet.
"Those aren't my pants, I don't know who put those clothes there, I can't wear those clothes."
"Mom, your name is on these clothes, they must be yours."
"I don't have a closet, those clothes aren't mine."

"Aunt J__ stole my jeans" she says, patting her thigh, "but I got them back."
"Oh really?"
"Yes, Aunt J__ stole my jeans!"

Oh no, I hope that Mom does not think of one of her aides is Aunt J__. That would not be good. The aide that probably took Mom's jeans to the laundry.

moving... again

Mom's journey down the path of dementia, has lead her to another wing of the assisted living residence. The wing that is not independent living. Last week Mom moved to her new room.

This is the more-assisted living wing, the wing where the exit doors have key pads, so only those who know how, can leave. This is the wing where the glass stemware at the dining table has been replaced by safe plastic drinking glasses and the table cloths have been replaced by cloth place mats. The elegant dining room has been replaced by the communal gathering area.

This is a small neighborhood of people, those who need extra help. It's where Mom will get more daily help with dressing, cuing, bathing, more personal monitoring.

Hopefully she will be calmer and happier, because she will be more directed. For a while now she didn't know where she should be or what she should be doing. Mom was lost. She was lost in her head and lost in the independent wing of the assisted living residence. Her world had been 150' of a zigzag hallway, from her bedroom at one end, to the dining room at the other, and she was lost. She was frustrated, confused, anxious, and lost.

Her new room is in the part of the assisted living residence where I thought she might be placed last fall, when she first moved there. However, she was able to live in the independent wing for the past nine months. Now it was time to move. It has not been an easy move for Mom. She wants to be back "up there with the grown ups." She doesn't want me hanging up her photos and knickknacks because "I'm only going to be here for a week."

There is grief. I'm saddened by the continual decay of my Mother's being.
But there is comfort knowing that she is where she needs to be, where there are nice people caring for her.

but

I HATE dementia

I HATE Alzheimer's disease

I HATE IT

I HATE IT

I HATE IT

we don't talk about money

We don't talk about money, just like we don't discuss religion or politics. It's bad form to talk about money. But seeing as how on this blog, and many other caregivers' blogs, we talk candidly about everything from love to poop, I guess I will talk about money.

For many years Mom didn't want my help with her finances, "keep your nose out of my business."
Then very reluctantly she started to accept my help, paying bills and coordinating the visit to the accountant at tax time. And then very quietly, I took over all of Mom's financial tasks.
When she moved into assisted living, I took her check book, ATM card, and credit cards out of her purse. I left her a pile of one dollar bills, and took the tens and twenties.

"I need new shirts, I have nothing to wear, I want the ones with the smiling face, I want you to buy them, I know my mother has lots of money, she told me."
(Oh boy, Your mother never had two nickels to rub together and she's been gone for 55 years.)

When my brother and I first started talking about Mom's demented situation, and the necessity of getting in-home care or moving her into assisted living; my sister-in-law told me to start with the money. I took her recommendation seriously, as she is the sibling responsible for her two elderly parents. She has twice the chaos that I have.

Find out Mom's financial picture. Then I will know what she can afford and how longs she can afford it.

Yup - I said it. Hey Mom, how long can you afford to live?
I'm budgeting your life Mom.

At $4100 a month you can live for another X years. At $7600 a month it will only be for Y years. When the money runs out, what do I do with you then?

Mom is very fortunate, Mom has a monthly pension. She worked at the same job for almost 30 years. She also gets a small widow's pension from my father's employer, where he worked for 30 years. How many of us have pensions? How many of us have worked for one employer for our whole careers?

But the value of her monthly pension is nowhere near enough to pay her monthly bills. Her pension is based on her earning levels of a job that spanned the decades of the 1950's to 1980's. Way back in the 1980's when gas was $ 1.25/gal and coffee was only $0.40/ cup. Way back in the 1950's when my father could fill his gas tank for less than $1.00.

Mom's monthly assessment at the assisted living residence is more than the cost of her first home; and she had a 30 year mortgage on that.

Yup Mom, I'm budgeting your life. Is it a race to see which runs out first?

new clothes

Mom has been argumentative when I bring her new clothes. "That's not my size, I can't wear that."
So I return them to the store.
Last week I had an idea. I bought some new jerseys, washed them, ironed her name tag over the "wrong" size, and then just hung them in her closet.
On my next visit she showed me one of her new jerseys.
"I found this in my closet, I haven't seen this jersey in a long time. I'm glad I found it."

Yes! Score! One point for the devious daughter.

hair dryer

Mom is so lost. She is loosing touch with reality, more and more.

"They gave me this hairdryer. They said it's mine for keeps."
How do you reply to this?
"Well that was very nice of them." I blurt out. Good thing she can't see the bewilderment on my face. This is the same hairdryer she has had for years. It has hung in the same place at her apartment for nine month. She uses it almost every morning.

I guess her aide found her the other morning with the hair dryer in one hand and the tv remote in the other, and no idea as to what she should be doing.

cousins

On Saturday I brought Mom to a cousin's cookout. It was fun, a great time to reconnect with relatives who are now scattered about the country. When I was growing up, these cousins were the "little kids" as they are four to ten years younger than me. Now their children are the young adults, going off to college and traveling around the world. Time really does fly.

My parents and their parents are good friends. They did lots of things together as a foursome: fairs and festivals, cookouts and campfires. My folks even helped them build their log house, their retirement home, on the pond. "Do you remember building the log cabin?" Mom asked everybody, over and over.

After both women became widowed they still did things together, even traveling to Europe. Cousin P_ understands what is going on with Mom. Her own mother had Alzheimer's disease. She understands Mom's limitations and absurd conversations. Cousin P_ is still warm, fun, and loving toward Mom.

At the cookout Mom did not want me to sit with her. I was afraid that she might become lost because she was someplace "new", there were a lot of unfamiliar people about, and it was quite loud at times. She kept trying to shoosh me away, so she could talk to people without me around. "These are my relatives, not yours." she repeats.

I am again stung by the "thoughtless" things she says. I know she is "taking claim" to these people, they are hers, they are her friends, they are important to her. She is collecting what she knows. Gathering her possessions to her bosom. Just like when she says, over and over: "this is my church", "this is my cat", "this is my friend".

She doesn't remember: if these people are her relatives, I would be related because I am her daughter.

"It was nice to see all the cousins today." I say as we walk to the car.
"These are my relatives, not yours." she repeats.
"They are my cousins too." I say quietly.
She gives me a sideways disdainful glance, "No they're not."

The truth is, these people are my Dad's cousins, not Mom's. I am the one related to them, not her. But, today they are hers, I'm just the driver.

the hamper

Mom doesn't know how a hamper works. It seem so bizarre but it's true.

I know, there are many, many Alzheimer's caregivers, some who read this blog, who are going through much worse; such as helping a parent who doesn't remember how to use a toilet.

You put the dirty clothes in the hamper, the nice girl takes it away, and brings back clean clothes. No, I guess that's not true, in my Mom's mind.

Mom and I were talking about going to a cousin's cookout this weekend.
"I can't go, I have no clothes to wear."
"I thought you wanted to wear your new black pants and your black and white blazer." She had already set the blazer aside with her black purse and shoes.
"Those pants are too long."
Oh no, not the too long pants again...
"I can hem them for you, please try them on so I can see how much to take up." She holds them up to her hips, bends over and looks down to see them touching the rug.
"They are too long, look at them!"
"Ok Mom, I'll hem them for you, before the party. While we're here, why don't you put on a clean jersey, this one is spotted." It has lunch dribbled down the front. I reach into the closet and grab another jersey, this too has a dirty front. The third one looks ok.
"That one is dirty!" she yells.
I turn it around and examine it well, "It looks clean to me."
She takes it and starts to dress. "Don't put those in the hamper!" she is frantic.
"They are dirty, Mom."
"Don't put them in the hamper!" she is stamping her feet and yelling. All of a sudden she is on fire because I want to put dirty clothes in the hamper. She's yelling that they won't wash her clothes, they don't wash her clothes, they steal her clothes, you have to put them on the floor, that you can't put clothes in the hamper, you have to hang dirty jerseys in the closet... this is so bizarre. She is yelling and screaming at me like I don't know anything about laundry, like I'm an idiot. Oh my gosh, may-day, may-day, divert, divert - get me out of this "conversation".

"Mom, let's go to the kitchen and have a glass of oj."
"Ok" she looks at her chest "This shirt is dirty."

use the good dishes

Did you ever hear that adage, that you should use the good dishes?

I was reminded of that yesterday when I visited Mom. Here at her assisted living residence, where people are living the final chapters of their lives, they are "using the good dishes", literally and figuratively.

Everybody there knows my Mom. Everybody knows her business. As a shy and reserved person, sometimes I am taken aback by all this "in your face" intimacy. However, as I have said before, it's like I have acquired a dozen sisters and brothers who are taking care of Mom. They are there for her, they know her needs, they are responsive to her, and they accept her as she is. Which is sometimes hard for those of us who knew her from "before".

Yesterday I saw the chef having a game of chess with one of the residents. He was feeding the soul as well as the body.

One staff member helped Mom tell me all about the outing they had the other day. Not by talking to me over Mom's head. But by talking and reminiscing with Mom about all the fun they had had together on that outing.

When the local bridge club meets at the assisted living residence, they are served coffee and cookies on the good dishes, the pretty cups and saucers on a big flowery tray. Not paper cups and cookies in a plastic sleeve.

Every day is a special day, use the good dishes - what are you saving them for?

hate

Hate - such a powerful emotion.

I don't hate too many things, actually I can't say that I really hate anything. Well... anything except dementia, Alzheimer's disease, cancer, war, greed, and hate. Ok, so I've got a list.

It's just that I've noticed the word hate is used frequently in the blogs of other Alzheimer's caregivers. We hate Alzheimer's disease. We hate what it has done to our loved one, our family, and ourselves. We hate it and we say we hate it. We scream and cry it out loud. We scream it quietly into our sleeve at the grocery store and muffled into our pillows at night.

Is hate the most powerful emotion?
No, I think love is the most powerful emotion.
Hate is second on my list.
The love will see us through this.

wandering

I carry around a tote bag full of stuff about Mom: my power of attorney, her list of medications, all her doctors' contact information, her insurance card, the contact information for the people at her assisted living, a list of her girlfriends and neighbors, notes from my support group, her checkbook, keys to her house, the garage door opener, any toiletries or cat food that I've purchased to bring to her. You get the idea.
When Mom was still living alone at home, I thought I might have to include a some more personal items, such as a change of undies and slacks, and moist wipes.

Today I read the book review at agelessdesign.com for the book In Search of the Alzheimer’s Wanderer by Mark Warner, I had a thought. I should have a photo of Mom in my tote bag.

honor your Mother

Last post I talked about how Mom's dementia has taken me on a path of lying and stealing, squashing the Commandments left and right.

What about honoring my Mother? I do love her, we had a pretty good relationship and some days now are ok. But many days I don't like this new version of my Mother. I procrastinate on my way to visit her, I put off doing her chores, I can't do what she wants. I'm heartsick.

How can I honor my Mother? I can tell you all thank you for the things you have done for her. I can tell you thank you, because she will never be able to do it herself.

Thank you to my care-giver's support group, for being.

Thank you to Mom's friends, friends who still call and write, who visit her, lead the sing-a-longs, hem her pants, or take her out. She may no longer remember your name, but your friendship makes her happy.

Thank you to Mom's neighbors who plowed her driveway, checked in with her when she was alone, who brought her firewood and drinking water during the storms. For being good neighbors.

Thank you to her doctors and their staff. For continuing to treat her with respect.
(To those of you who don't.. plffffbbbb!)

Thank you to the ladies at Mom's bank. Who "get it". Who helped keep Mom's assets secure. Who helped me quietly and correctly take over Mom's finances.

Thank you to the cousins far away, who call, write, email, and send treats to Mom. She loves getting those photos and licorice.

Thank you to the understanding folks who help me enroll Mom in the new health insurance plan. To those who guide me as I have to refill a long list of meds. Who don't roll their eyes or talk condescendingly to me as I wade through the lingo of Medicare, Medicaid, and donuts.

Thank you to my friends and family. For standing with me as we go through this together.

Thank you especially, to ALL the people at the assisted living. For looking after her with kindness and compassion.

lying and stealing

As I have mentioned before, my Mother has been teaching me to lie; well not really, Mom's dementia has been teaching me to lie, and it's been teaching me to steal too.

When Mom was still living in her own house, I would steal the rotten food out of her fridge and the expired food from the pantry. "Why are you throwing that away? It's perfectly good!!" (Note to self: don't let her see me do this next time.)

I stole her car. It's been almost two years and she is still angry about that, which she tells me every time we see a Subaru.

I quietly stole the photos from the big pile on her table. Photos of Dad, the ones she hadn't yet torn in half.

I stole her check book and ledger. For a while, she would let me help her pay her bills, we would do it together, but then it got too much for her. She was loosing bills, she would pay bills twice, or not at all. It got to the point where I had to steal her bills and solicitous junk mail. (Jeesh this sounds really bad doesn't it!) I would go to her mailbox before my visit, and take out the bills, but leave the rest of her mail. Later when I would drive her to do all her errands, we would get the mail, there was always lots of mail. She never really missed her bills.

Then I did the biggest theft of all, I stole her house and all her worldly goods. I packed her up and moved her to an assisted living residence. I am the reaper: disposing of her possessions, her crap, her collections, her stuff, her clothes, her dishes, her house, her home.

Now that Mom is at assisted living, I'm still stealing. I steal the month's worth of old newspapers and the piles of dirty tissues that can't seem to find the trashcan. I steal the boxes of stale Christmas cookies and the Valentine's candy that she wouldn't eat. "Don't take those, someone will eat them." (Someone who??) I steal her dirty clothes and her too small slacks.

This sounds really bad, it sounds like I am a crook and a cheat. These are tasks I didn't want, these are responsibilities that I didn't choose. My Mother made me her power of attorney twelve years ago, something I never thought I'd have to act upon. Just like I never thought I'd have to blow my Mother's nose or tie her shoes.

And I'm still lying to my Mother. "Where are my Indian Head Pennies?"
I don't know Mom, where were they?
"They are in the bottom drawer of my dresser, in my bedroom."
I'll look for them next time I go to the house. Her dresser is right here in front of her, at her new apartment. But it is empty, she doesn't use it, it is just here, being something familiar. She is thinking of her dresser as it was in her bedroom at home. The one that is still "there" in her mind. The pennies are at my house, waiting for me to give them to her grandchildren.

Which other Ten Commandment can I break? How about honoring your Father and Mother... let's not go there today.

looking back?

I reflect, I look back. I don't know why. To find answers? To see how long this dementia has been causing chaos with my Mother?

The spring of 2007 Mom had her first neuropsychological evaluation. She told us all she "passed with flying colors."

That spring, Mom and I did a lot of painting, planting, and trimming around her house because that summer my son was to be married in her front yard. But as I look back, Mom didn't do any of the painting, planting, or trimming. I did, my family and the workmen did. She always had excuses.

We went to the garden shops together and bought hanging baskets and porch railings planters. We bought coir liners and soil. We bought a kazillion 6-packs of flowers and ivy to plant in the planters. She returned the liners, she didn't like them. She returned the planters, she thought they were ugly. She returned some of the plants, they were the wrong color. Then she watched; she would lean on the porch rail and watch me plant, watch me water, watch me trim, prune, and rake. "I'll just go find my work gloves." and she would wander away. "Let me look in the garage for the other clippers." and I would find her in the kitchen reading the paper. It was more than chore avoidance, it was detachment.

We were going over the to-do list with my son and his fiance. "Yes" my Mom said "I have a friend who has some 8' tables we can borrow." Then month by month, Mom reassured us that she had arranged to borrow these tables. Then two days before the wedding "Of course you can't use them, he's lent them to blah-blah for their annual blah-blah-blah."
This was a little kick in the pants - as we scurried around to rent tables at the last minute. But this was SO not my Mother. She was always such an organized person, someone you could count on to do what she says she'd do. She was always such a leader, not one to watch from the sidelines.

Months after the wedding I learned, that after the wedding guest had left, Mom spent the night crying. Not tear of happiness for the bride and groom, not tears for her long gone husband, but tears of despair for her cat. She couldn't find her cat. This is the cat who hides when ONE other person comes into the house. There were a hundred strangers in his territory and he hid. He was hiding in his usual place in her bedroom closet, a place she never looked. A place I always found him, in the years following, whenever he was "lost".

What signs of dementia do I see now that I didn't see then? I see irrationality, irrational behavior, more than being old and "set in her ways", more than being the elder and being able to "do what ever I want." I see fear and anxiety over things and situations that didn't warrant it. I see a shrinking of her world, limiting her boundaries, a self imposed isolation; more than just not driving on highways or into Boston.

do it now!

Mom called me Sunday morning. She was surprised that the call went through. I was surprised that she could find my phone number on the first page of her address book and could press all 11 numbers in order.

She greeted me with her now routine "where the hell are you?" She yelled at me because I wasn't there to take her to get her hair cut. Time has no meaning.

Last week she whined that she needed to get her hair cut, now! But I can't take her to the ONE person she trusts to cut her hair, for another two weeks.

We talked about her going downstairs at the assisted living and letting THAT WOMAN cut hair, but Mom was adamant that SHE would do a "crappy job" and would only "hack at my hair with her scissors." I don't know how to change her mind about the resident hairstylist.

Taking Mom to her favorite hairstylist is a full day project for me. One hour up to get Mom + 20 minutes to get her out of the building + 30 minutes drive to + 30 minutes of wash, cut, and blow dry + 30 minutes driving back + at least 20 minutes to get her back into the building + one hour drive home. Her beautifully coiffured locks are not worth 4+ hours and 100 miles of driving.

I think it's time for Mom to accept a new hair style and stylist. HA HA HA HA right...

what do you know?

I read so many blogs and books by caregivers and talk to so many caregivers who are so frustrated by everyone else -- who just don't GET IT. Everyone: neighbors, doctors, waiters, friends, home health aides, and siblings who just don't GET IT.

Our loved one can have vascular dementia and still be witty. They can have Alzheimer's dementia and still be intelligent. They can have Lewy Body dementia and still be knowledgeable and thoughtful. They can have dementia and still be smart. It is NOT all or nothing. Their common sense, their logic, their abilities, and their reality are nibbled away bit by bit.

The skills that disappears for one person are not necessarily the same ones for someone else. It's like someone has taken a paper punch and keeps punching holes in the book that is my Mom's user's manual.

I have a friend who still wins at Scrabble, but she can't add ten plus ten. Just because Grandpa can still debate the political situation in the Middle East doesn't mean he remembers what to do with a toothbrush. Mom's age appropriate attitude of "I'm an adult, I can do whatever the hell I want" doesn't apply to her driving a car with no regard for the rules of the road.

For a long time, my Mother would tell me things so that I would believe she was ok. It was her way of coping with the horrible chaos going on in her brain. She would reassure me that she was doing fine. So I wouldn't have to worry about her? So I wouldn't find out the truth? So I would keep my nose out of her business? Her fibs were her way of coping.

The first time she had a neuropsychological evaluation, she told us all (repeatedly) that she "passed with flying colors." It was only years later that we learned that this doctor gave her the most minimal screening. A doctor's visit of only ten minutes with a person who is denying that anything is wrong, was a failure.

How different would life be if my Mother had asked her doctors for help with the changes going on? If she had asked for answers and planned for her future? Why wouldn't she talk to me about her worries and concerns? Why couldn't she ask me to help her, back when we could have worked together? Why, why, why? What if - what if - what if only?

I don't really know what I want to say tonight. I'm just frustrated.

where are the pants?

For the past week, the big question on everybody's lips, has been "Where are you Mom's pants?" It is kind of comical and it is kind of frustrating.

Last week, I had Mom try on her brown pants - she could not even get them zipped. She has definitely gained a few pounds since moving into the assisted living residence. So I took the brown pants home with me, telling her I was going to hem them for her. (Liar liar pants on fire!) I checked the rest of her clothes: three pairs of jeans, one pair of blue chino, two pair of black slacks, they are all the same size as the brown pants that don't fit.

Ok, time to buy some new pants for Mom. How do you buy someone clothes, of an unknown size, with out having their body with you? (Did I tell you I hate shopping?!)

Then the phone calls started.
I got a late night call from one of Mom's friends "When I was up to see your Mom today, she was in a panic, she can't find her pants, I helped her look all through her apartment, in all the drawers, and the pants are nowhere."
Well, they were there in her closet, yesterday when I was there? I reply.
"We talked with the aides, and we went down to the laundry to check. No one has seen her pants."
I explain to Mom's friend, about Mom needing larger slacks, and that I would be up next week with some new clothes.

I even got a call from the director of the assisted living "Do you know where your Mother's pants are?"
"Nope, I saw them last week when I was last there, but I'll be up with new ones tomorrow."

Yesterday, I was greeted with cheers by the receptionist. "Oh! Your Mom will be so happy to get new pants." This is getting comical, I thought.

But Mom was not at all pleased. "I want my old pants, I don't want new pants, look at that size, they are going to be huge on me, I don't wear that size, I want my old pants, I just want my jeans, feel these they feel like crap, they are going to be too long, I don't need new pants, don't make me try these on, I don't want new pant, I just want my old pants."

"Don't make me try these on." she cries. If you had walked by the door and heard her, you would have thought I was torturing her.
She doesn't understand she has gotten bigger, she doesn't comprehend that she can't wear her old pants. Her ONE pair of old jeans fit - so she's got enough clothes.

I'm trying to be UP about this.
Look how nice these slacks look on you, won't it be nice to have new clothes for spring?
"I don't want new pants, don't take my jeans away."
I'm not going to take your jeans away, I know you like wearing them.
Around and around the conversation goes. I get her to try on some of the pants, she won't try on any of the pull-over jerseys I brought. As she's slowly trying on the clothes, I'm peeking in all her closets and drawers, looking for the now famous missing slacks. There are NO pants anywhere. Where could they have gone to?

All the new clothes are spread all over her bed. My patience is growing thin. Besides the missing pants, Mom's mattress pad is also missing, where did that go to? Did I write her name on that? Will it return eventually? Then I see that Mom has four pillows on her bed. I know she only owns three, I'll have to return the extra one to the laundry room. The fourth pillow is heavy and lumpy like an old feather pillow.

But it's not a pillow, it's a pillowcase full of slacks. Hiding under her other pillows.
All the pants have been found, but the mystery remains.

loss of appetite

This post is not about Mom's loss of appetite, but mine.

Actually Mom's been gaining weight. As much as she complains about the food at her assisted living residence, as much as she pokes her finger in her mouth and makes gagging noises when I ask her how dinner was, she seems to eat everything on her plate. Her aides tell me she's a good eater. She even ate all the lima beans in mushroom sauce with no complaint, two foods that she never cooked for her family! Go figure. All the meals that I've eaten with Mom at her new residence have been wonderful. Colorful, tasty, balanced, nicely presented, a real dining pleasure.

But my appetite has disappeared. I've had a whopper of a cold this past week, sleeping and coughing and sleeping. One day I ate just a half of a banana and a cup of yogurt. Another day a bowl of oatmeal. One day a half serving of potato gnocchi. Just a few sips of coffee - I don't even miss my coffee - I must be sick. I look down at a bowl of cream of wheat, and can't even imagine finishing it all, it's way too much food. (omg - I sound like my Mother!) There is leftover pizza in the fridge, it is not calling to me. (I must be sick.) The homemade chicken noodle soup I made last week, doesn't entice me either.

I finally realized how bad my appetite was, because today I'm vertical, finally doing something other than sleeping and coughing, and I'm hungry. Food finally has some appeal.

When my Father was dying, he gave up eating, he just stopped, he didn't want to eat anymore. He would push away the spoons and cups and shake his head. It was hard to believe that my Dad would not want to eat. But I had learned that that is one of the steps that some people take on their way to death. I was hard to get Mom to stop battling with Dad, "Open up, you have to eat this." He would swat her spoon away. "Come on you have to eat something, eat this." It was hard to make her understand that she couldn't feed Dad if he no longer wanted to eat, it was his decision.

Can you imagine not wanting to eat? Can you imagine that food no longer holds any appeal? No desire for sweet, salty, sour, succulent, smooth, spicy, savory, tart, tangy, creamy, chewy, crunchy, crispy, juicy, or zesty. No desire for barbecue ribs where the meat is so tender if falls off the bone? No desire for peppermint ice cream covered in hot fudge sauce? No desire for a red ripe tomato, fresh from the garden, still warm from the sun?
Yes, now I can imagine it, this past week I really didn't want to eat.
My darling husband would make me a bowl of oatmeal, when even toast seemed like too much to chew. But the oatmeal had no flavor.

Food - so much a part of living - so much a part of death.

I'm feeling better now. I'm hungry.

learn the numbers

Here is the new video from the Alzheimer's Association.
View it and weep.
Share it and create awareness.

games

Well, I did it, I played Bingo for the first time, with my Mother and her neighbors at her assisted living residence. First time? you ask. Yes, this was my first time, I was a Bingovirgin. When I was growing up Bingo was considered gambling, something verboten by the denomination I belonged to in my youth. As Mom reminds me (again and again) she had only ever played Bingo once, way back in 1969.
I remember watching Mom and her Aunts, but I was too young to play. "What would Aunt T__ think of me playing Bingo?" Mom asks again.

So why do the "old folks" play Bingo? Well, as I learned from watching, they play because it's an educational tool. Who knew! As a child of two teachers (and a mother of two sons) I know all about the art of making learning fun.
"G fifty-six, G five six"
Remember numbers? Can you find the 56 on your card? Can you find the 56 on both of your cards? No, not four six, the five six.

I watch the woman who is running the game. She is keeping an eye on the cards of a few of the players. Giving out hints to those who need them. She would sometimes call out numbers that had been called long ago, so that hopefully Alice can find N44 this time.

I'm watching Mom's card as well as my own. It makes my heart heavy to see how hard it is for Mom to identify the numbers. To ponder if she should cover the 67 with a chip or not. To have to work at finding that simple answer.

I'm so busy watching everyone else that I don't cover my N42.
"You should have all your N's covered." says the woman running the game. This last round is a game called cover all where you try to be the first to cover the whole card. Hey, I'm new at this, what do I know. My N42 is bare, I really don't care, I'm just here to be with Mom. A few more numbers are called and then she calls N42, she's been watching everyone's cards, mine as well.

like a child

As my Mother's intellect unwinds, as she slowly comes undone, she becomes more and more like a child.

A friend was talking about getting her grandson a walking push toy, something to help him steady himself as he learns to walk, it brought to mind all Mom's neighbors with their walkers.

My Mother's taste in food has changed, she desires more sweets and treats. She makes gagging noises and motions and says things like "I'm not going to eat this garbage" loudly in the cafe. She screams in the grocery store "No, no, no asparagus! Never liked it, never will." Many adults go from eating solids, to tiny pieces of food, to eating only finger foods, to puree food, to liquids - just like a child - only in reverse.

Like a child her words are blurted out thoughtlessly. She has to be reminded to be more compassionate in her thoughts and words. "She can't be my visiting nurse. She's too fat to be a visiting nurse." Mom, you were once 75 lb larger than you are now, not everyone is tiny. "That man, he talks funny." Mom, he had a stroke, he has to learn to talk again, Dad had a stroke and he had a hard time talking.

Like a child, she needs my help to put on gloves and tie her boots. We argue that she needs to wear gloves and a jacket because it's 5' outside, but she don't understand what a temperature of 5' means. She screams "I don't have to do what you say, I can do whatever I want."

Like a child, she sometimes can't buckle her own seat-belt. When she can find it, Mom brings the strap over to me, and then raises her hands up out of the way. Arms up in the air, just like my little boys did when they got buckled into their car-seats.

Like a child she wants me to do things NOW. Right now! Do it right now - give me it now - I want it now - now. Even if we just did it today, yesterday, or this past month, we have to do it NOW.

Just like a child, I worry that Mom might become lost, thankfully she doesn't have a strong desire to wander. Mom wears an emergency button, do you think she would know to press it if she needed to? Mom's new address and phone number are on cards in her jacket, purse, and wallet. Would she recognize this as her true address? Or would she tell someone "24 Maple Street" where she lived 60 years ago?
My friend lost her Mother in the grocery store. She turned around and her Mother had vanished. Fortunately this store had a process in place for lost children and adults, they took my friend's concern seriously. Workers watched the exits and methodically combed the aisles. Like a child, she did not think she was lost, she had just gone to find ... something.

Like a child, Mom acts like a ten year old, who goes into the tub, turns on the shower, stands there and then gets the towel wet. "I took a shower" she says. I know she didn't wash, when I can see that her feet are still dirty. I don't know why she is reluctant to bathe, I don't know why she can't do a thorough cleaning, I don't know why she fibs about taking a shower. Does she get in the shower and then think "I'm done" and then get out?

As I look through the adult care catalogs, I see so many "child-like" items: bibs and diapers, stuffed animals and baby dolls, texture toys to keep idle fingers busy, picture books with large words.

We can't treat our elders with dementia like children, because they are not. They are adults that deserve respect and dignity. However they have to be kept from the dangers of their own child-like behavior, they have to be saved from those that prey on the elderly, and intimately cared for when they can no longer do it themselves.

There is a caretaker I know, who talks about protecting her parent, from the stares and nasty comments of other people. She is embarrassed for her parent, because of her parent's child-like behavior. An 18 month old doesn't feel ashamed or embarrassed about removing all their clothes and running around naked, they are not being naughty. But it is hard to deal with the "real" world that won't accept this behavior from an 80 year old, an 80 year old who had the emotional age of a little child.

And like a child, I know my Mother sometimes only can understand things she can see. If it is "out of sight" it is "out of mind." She can't remember people who are not in her photos. She can not find her clothes unless they are piled up on her dresser and chair. She can not find her books or dvds unless they are laying around. Her shoes have to be beside her chair. Her drawers and cupboards are empty. Her purse is slowly becoming a blackhole. She puts lots of stuff in, she carries it about, because she knows it's important, but doesn't look inside to find things. "Why would I do that? It's not going to be in there!"

Just like babies who love to play peek-a-boo; they don't understand that you are still there when you hide behind your hands.

AAQI exhibit

I just learned that the AAQI traveling exhibit
"Alzheimer's Illustrated: From Heartbreak to Hope"
will be at the "Hands All Around XIII" Quilt Show.
March 26-27 at UMass Amherst.

Thank you so much to the Hands Across the Valley Quilters Guild for their support of the AAQI and including this exhibit in this year's show.

snow?!

Ok - in the last post I said "let it snow, let it snow, let it snow."
Can I retract that statement now?

snow day

Today we had another big snowstorm, I wasn't expecting it, at least not the amount that greeted me this morning. I felt jubilation. That feeling, just like when I was a kid and they would cancel school because of the snow, and you had a whole day with no responsibilities.

Growing up, both my parents were teachers, on snow days, we would get the phone calls, early in the morning, 5:30 at the latest, if school was cancelled. Of course Dad taught school in a different town and just because he got to stay home didn't mean we did. One very snowy winter I think Dad only taught five days the whole month of February.

So this morning (late morning!) I put on my snow-pants and boots and joyfully went out to shovel the snow. It was the nice deep fluffy kind of snow. Everything was so beautiful and white.

Let it snow. I thought. Let it snow - let it snow - let it snow.
Mom is safe. I don't have to worry about her today!

I don't have to worry that her power will go out.
I don't have to worry that she can't keep the wood stove going.
I don't have to worry that she will leave hot ashes on the wood porch.
I don't have to worry that she doesn't have water.
I don't have to worry that she won't have water to flush the toilet.
I don't have to worry that her pipes will freeze.
I don't have to worry that she will freeze.
I don't have to worry that she will use the oven to heat the house.
I don't have to worry that she will not eat or drink because the power has gone out.
I don't have to worry that she will lock herself outside, in only her nightie, while she feeds the birds.
I don't have to worry that she will slip on the icy stairs.
I don't have to worry that her aides won't make it up the driveway.
I don't have to worry that she will not get her medications today.
I don't have to worry that she won't get plowed out.
I don't have to worry that nobody can make it up her driveway.
I don't have to worry that she will get her car stuck half way down her driveway.

Let it snow - I am home today - a day with no overwhelming and exhausting worry - for Mom.

feelings

Not another book about dementia or being a good caregiver. People are always recommending books for me to read. Some are great and insightful, some are just dull listings of facts and ideas.

When I got "Creating Moments of Joy" from the library, I was surprised at it's small size. I flipped through it: large font and lots of chapters. Something I could easily get through one chapter at a time, as I snatch little bits of reading time throughout the day.

As they say - don't judge a book by it's cover. Once I started reading, I saw my mother and myself in every chapter. I cried, I laughed. I couldn't put it down.

So what, if Mom wears the same clothes everyday. Who is it going to hurt? For her it provides comfort. My thoughts jumped to my four year old son, who wore that blue dinosaur cap everyday for a whole year. It made him happy, that hat.

We hear more and more about living in the moment and seizing the day. And with dementia it is especially true. They are where they are, it might be 1952, but that's where they are now, and we have to be with them where they are, and be kind and loving and compassionate. Isn't this a message for everyone we encounter? It is about how you make someone feel. Don't you want to make someone feel better, to feel joy, even for a tiny moment?

There is no tomorrow, there is only now.

a little hope

Yesterday, after work, I ran up to visit Mom. She wasn't in her room. I found her reading the newspapers in the resident's kitchen. She was in a good mood and glad to receive more Christmas cards. (Unaware that I had brought them.)

I have mentioned before, all traffic passes by the kitchen, so we usually see lots of folks. It has nice big picture windows into the hall and out into the courtyard. B_ went by with her walker. Mom waved and smiled at B_. "That's my friend, we do puzzles together."

I was in delightful shock. The little me inside was doing a happy-dance! She had smiled, waved, and used the word "friend".
These people who were "the patients" and "old drooly people" last month, were now becoming "friends".

We left the kitchen for the late afternoon activity in another room. I followed Mom in. Before we found a chair, she stopped and spoke to the group gathered there. "I'd like you all to meet my daughter."
omg!!! THIS was my social, friendly, outgoing Mother. Here she was, introducing me to "her" group. I could feel it in her tone of voice and in her manner. She was finally feeling like a part of her new neighborhood. The little me inside was happy-dancing all over the place!

I know she still doesn't know what season it is, I know she is still wearing the same clothes over and over. (The staff said they do steal and wash them.) I know she still feels lost and lonely. But, today was a good day, a very good day.

sewing

While cleaning out Mom's house, I've been gathering up her sewing stuff. She doesn't have an actual sewing box, just a box full of notions.

Yesterday I combined Mom's sewing things with mine, putting her little brass safety pins with my pins, adding her buttons to my collection of buttons, putting the elastics with the elastics. And again putting the extra stuff in a pile to take to the recycle center for other sewers to use.

She has about twenty sewing machine bobbins, all full of thread, mostly black and white. Who knows how old this thread is or what fiber it is. So I decided to empty the bobbins. I put them all in my lap and proceed to gather up the ends and start pulling, it's like reeling silk, but it's not. My left hand covers the bobbins and guides the group of threads, my right hand draws them up and away, gathering this large tangles of threads. A huge nest of snarly thread. It's like my Mother, as she is unraveling, as she is coming undone. Then I see that the predominantly black and white now includes greens and pinks, Mom has filled her bobbins by winding new colors over the old colors. Now there are purples and reds, blues and oranges. How long have these colors been on these bobbins? I continue to unwind, the little metal bobbins tinkling together in my lap.

These bobbins go with Mom's sewing machine, it is a Singer Featherweight. The classic sewing machine of the mid twentieth century. She got it as her sixteenth birthday gift. It's the machine I learned to sew on. (Now can you guess what I got for my sixteenth birthday? A 1970's p.o.s. Singer that never worked as well as this Featherweight.)

I'm a little scared to try it, to see if it still runs. A couple years ago she said it wasn't working, and she brought her project to me to sew. (Hmm, looking back, was it the machine or was it her?) I thread the machine like we're old friends. It's all so familiar, the feel of the bobbin case as it clicks into place, the grrr of the motor as the belt catches the drive wheel. This little machine is sewing just fine. But it's dirty. It has too many years of dust, lint, and cat hair all over it. I get out the screwdrivers, rags, tweezers, cotton swabs, tiny paint brushes, the instruction book (Remember, Mom never throws anything away!) and get to work. There is a lot of lint and dust. But the worse part is the oil slick in the bottom tray. It's all gummy and smelly. Residue from way too much oiling and not enough cleaning.

What do I do with this Featherweight? What do you do with a house full of memories?

Remember the tomato pin cushion; full of sawdust, fat and squishy with green leaf on top and the strawberry attached. Mom's tomato pincushion was falling apart, sawdust leaking everywhere, the strawberry long gone. I removed all the straight pins. Then I started to feel other pins inside, you know what it's like to squeeze a pincushion, a bit dangerous. There is always that sewing needle that decides to go all the way in. So I'm squeezing the tomato and finding needles and more needles. This poor little tomato is already falling apart so I cut it open and pour out the sawdust. Inside there are sixty-three sewing needles. This hollow tomato skin filled with a starburst of shiny needles. It's like my Mom, we know the wonderful useful shiny stuff is in there, it's been pushed way down inside, and we can't get at it anymore. If we squeeze Mom, sometimes she'll provide us with bright answers, true and real thoughts. But mostly we get stabbed by her "thoughtless" words.