Tuesday, June 30, 2015

At times.......

.....I felt like a little lost child. Mom in hospital again, me sent to a relative somewhere. I got angry and left that all behind me at 17, knowing I would not have to deal with it ever again. (foolish me.) Pretty much, I looked out for me over the years just as I did when still a child.

.....Mary felt like a little lost child too. Cowering in a corner, put down by her father, left un-protected by her mother. She grew up, left, raised a family, stood up for herself, reinvented herself and then came home to this house and spent 20+ years caring for mom, then dad. Tough duty. And now me.

For over six years we lived here with dad and I felt it necessary to stand up for Mary in answer to her fathers constant badgering, and demands. He didn't like me taking his Mary away from him and only tolerated me here because without me Mary would not have returned. We left once and I engineered a return when I witnessed the pain Mary was in as well as her father. They both suffered greatly.

Life was OK for a while, then returned to the same old BS from her dad. Luther could be kind on occasion, but he was always only one breath away from denigrating his daughter .Mostly when I was out of the house or they had gone off somewhere together. Hearing later from Mary the latest jab to her or put down about us, he and I engaged in several verbal battles, much to Mary's sorrow. Why put this out into the open now? This is no secret to family members, especially those who came along and listened to his vitriol. It is however a way to express how protective I have been toward Mary, and she toward me.

We found each other later in life. I am so pleased and grateful that we have. I really believed our battles were behind us. But here we are again, side by side sharing a love neither of us has known before. Laughing in the face of sorrow even while we feel deeply the sorrow dealt to us. We have weathered stormy relationships with family members, dealt with our own demons, been rich and been poor.

We have cried on each others shoulder, felt anger at the injustice of it all, felt relief and joy at the out pouring of love from friends and family, and still say our "I love you's at bed time."

The spoken word cannot do justice to the beauty and love that is Mary. To be spoken of in the same  caring breath as Bella is an honor. See Mary's post below. But then, Mary has honored each of us with her loving kindness.

To the Moon and back a thousand times over. All my love to you my LOVE.

Monday, June 29, 2015

Insights

Part of my nanny job is to bathe Bella and get her ready for bed. [Picture trying to corral a wiggly, squiggly, naked little girl who suddenly has more energy than a box full of puppies and zip her into a one piece sleeping suit.] Since her crib was converted to a toddler bed, she can now jump into bed and burrough down in a corner that makes my back beg for mercy. 

One night after the wrestling match was over, we had this conversation:
M: Do you know you are beautiful?
B: Yes
M: Do you know you are smart?
B: Yes
M: Do you know you are brave?
B: Yes
M: Do you know you are wonderful?
B: Yes
M: Can you think of something else you are?
B: I'm Bella.

Yes, my little love, that's exactly what you are. You are Bella through and through. How lucky the world is to have you in it.
_____

Last week Sweetie and I took one of the action steps recommended in the Together In This guide to ALZ. We are now in possession of legal documents that relay our wishes to our families and medical personnel if/when the time arises. I thought maybe it would be a relief. You know that gee-that-wasn't-so-bad-why-didn't-I-do-it-sooner feeling like when you finally clean the refrigerator or mop the kitchen floor. Instead I left the lawyer's office feeling weighed down with one more reality check to remind me I'm going to lose my Sweetie in a way that scares me and breaks my heart.

I know, I know wills and powers of attorney and medical surrogates are things everyone should have - ALZ or not. Something Sweetie and I should have done a long time ago. Still it's hard a hard subject to talk about.

For the rest of the week I felt like an old poot. Sweetie slept a lot more than I thought he should. As if I'm his sleep warden. I would have slept more than I should except that sleep warden thing goes both ways. I had time on my hands that I couldn't work up the energy to put to positive use.

Yesterday it dawned on me what was wrong. Besides ALZ. Bella's grandparents have been visiting so I haven't been working. Thank god for text messages and videos. I decided I needed a short Bella fix. From the moment I walked in the door I felt like smiling and crying at the same time. Perhaps its the fairy tale quality of their new home which I affectionately refer to as the castle. We all know nothing bad ever happens in fairy tales so my mood automatically lifted. Maybe the big hug and smile that I got from Bella's Nani outweighed my moodiness. Probably it was the look on Bella's face when she saw me. A little bit of "where the hell have you been?" mixed with "I'm glad you're here." We made our way back to the playroom. She handed me a plastic flower. She asked me to bathe her dolly. And she talked. I don't spend that much time around other 2 year olds and I know it's not good to compare. But Bella sure does hold her own in a conversation.

M: Are you still 2?
B: I'm 5.
M: Five? What happened to 3 and 4?
B: I act like I'm 5!
(I think that came from her ballet teacher).

After Dolly's bath it was time to feed her. Dolly had to sit in the chair. And Mimi (me) also had to sit in a chair, not on the floor, a chair. As Dolly ate Bella said, "Tell me about Eleyiana." She only knows Elly from pictures on my camera, but there's no fooling her. Eleyiana led to Christmas which led to Santa which led to Mr. Jack. When the clock said it was time to go, I'd given Bella a full run down of the people in my life. Nothing had changed. Everything was as she remembered it. As I write that I realize how important it is to Bella that things remain the same.

Let's face it, that's pretty important to me too. The irony of the situation is that I'm the one who often introduces new things to Bella and shows her that things aren't as scary as they seem. When we're at the park I encourage her to swing by herself. I show her that ladybugs don't bite. We talk to crows, run down hills, jump from tables (okay, maybe this isn't a good thing to teach a kid), climb trees, and throw rocks in the river which requires getting our hands dirty.

I cried when I left. Quiet tears that I'd been holding back. I've missed you tears. Gratitude tears. Feeling validated and loved tears. All mixed with up with tears of looming loss that might come from any direction.

I've raised my own kids.
I've been a nanny.
I've been a senior caregiver.
Now I'm a nanny again.
There's not a  lot of difference. Babies grow up. Adults grow down.  What is different, however, is the perspective. There is joy and enthusiasm as a child learns to walk, talk, think, become independent. There is sadness when an adult's abilities begin to diminish, when that independence they worked so hard to achieve is lost or taken away. Ask anyone who has had his/her driver's licence revoked.

I expect it will be disconcerting in the next year(s) to see how far Bella's mind expands and Sweetie's shrinks. Yet I think there will be some similarities also.

  • They will both need a routine they can count on in times of stress.
  • They will both need a cheerleader to praise them for their accomplishments.
  • They will both need someone to listen to them, hold their hand, encourage them.
  • They will both need to dream big dreams.
  • They will both need to be creative in whatever form that might take.
  • They will both need to stay active and get plenty of rest.
  • They will both need someone to say "I love you to the moon, Baboon, sweet dreams" every night before they go to sleep.
  • They will both need someone to remind them of their beauty and value.
  • They will both need someone to see the light of God in their eyes.
  • They will both need to be reminded that no matter what happens they will always be who they were created to be - Bella or Jack.*
I am filled with gratitude for the lessons I (re)learn every time I'm in the company of Miss Bella,
Merry ME
(* Maybe it's time to start using Sweetie's real name.)

When life gets messy, clean it up
or
use the soap to blow bubbles

Saturday, June 27, 2015

Challenges … Schmallenges


"Challenge is the pathway to engagement and progress in our lives.
But not all challenges are created equal. 
Some challenges make us feel alive, engaged, connected, and fulfilled.
Others simply overwhelm us.
Knowing the difference as you set bigger and bolder challenges
for yourself is critical to your sanity, success and satisfaction."
Brendon Burchard


Right now I'm feeling overwhelmed
by inertia.
I'm not much in the mood for a challenge.

Merry ME







Friday, June 26, 2015

Now I lay me down to sleep.....


.....I pray the Lord my soul to keep,
if I should die before I wake, 
I pray the Lord my soul to take.

A child's prayer, and yet the summation of all prayers. Alzheimer's, the summation of all (mankind's) fears. We are counselled to fight the ravishes of Alzheimer's for as long as we can, yet to me doing so is wrong. Are we not challenged rather than called to battle? Seeing "living with Alzheimer's" certainly must be yet another challenge in life.

Confronting and overcoming challenges
is an exhilarating experience.
It does something to feed the soul and the mind.
It makes you more than you were before.
It strengthens the mental muscles and enables you
to become better prepared for the next challenge." 

--Jim Rohn


"Focus on what has helped you overcome challenges in the past, and find ways to use these strategies every day as you address challenges and stress."— Amit Sood, M.D.


The ultimate measure of a man is not
where he stands in moments of comfort and convenience
but where he stands at times of challenge." 
--Martin Luther King

For me, for Mary, for you; "may we all stand up to our challenges," facing them with dignity and humor as long as we are able. 

Sending you light and laughter. jdc

Wednesday, June 24, 2015

Learning

Yesterday didn't start off so great.  Sweetie came stumbling into the bedroom room where I was folding clothes around noon. He stood in the doorway, staring blankly like he had no idea where he was or what he was needed to be doing. Of course I panicked. This ALZ stuff is so new to me that every time I see something not quite right, I'm sure we're about to fly down the slippery slope like skiers with no poles. 

M: What's up?
S: No answer.
M: Are you okay?
S: No answer.
M: with raised (i.e. shrewish sounding) voice: What's going on?
Sweetie finally shook his head and seemed to come back from wherever he had been.

Later on, still not quite himself, Sweetie went out to put some kind of order in the stuff we'd earmarked for a garage sale a month ago.  He did this in 100 degree weather. By himself. Even tho the last time we'd discussed it, we'd agreed to make it a joint effort.  He said he had a plan, but his plan was nothing like my plan. I hrumpfed around until finally left Sweetie in his own world. Every time I went to check on him, Sweetie was sitting in front of a chair looking half dead. Eventually he'd made room for the car in the garage. John and Maizey had a path to get upstairs and I could still see the washer and dryer.  I don't know if we'll ever have a garage sale, but the Xmas glasses we never used are neatly lined up next to pastel Easter egg cups and flowerpots; old coffee pots (not one but two) and salad bowls share a shelf with paper doilies and almost new tennis shoes. I did my part by boxing books together by subject. Where is the Salvation Army when I need them?
_____

A limb from a neighbor's tree came crashing down last night around 10:30. The house was immediately engulfed in darkness. I felt my way across the room until I reached the table where the butane lighter is kept. [When my father was alive there was a flashlight on almost every surface in almost every room for just this reason. Lesson learned.] By dim candlelight I walked to Jack's office. He was a all turned around and a little disoriented even though the space he was in was only about 3 feet square.  John's dog, Maizey, came flying down the steps when she heard the limb fall. John suspected it landed on our neighbor's house.

When we went outside to check on things, there were pin pricks of light coming from every house. The good news is nothing was damaged except the stately old oak. The same tree that lost a limb a few months ago. The one John endearingly calls "the widow maker."

With no electricity, Internet or TV there's not much to do except go to bed. Sleep was slow in coming because I shared the bed with 2 cats and a scared 70 pound bulldog. There was no A/C or fan to stir up the hot air. I tried reading by flashlight but it gave me a headache. Sweetie soon came into the room and pushed his way onto the bed. Hail! Hail! the gangs all here!

So there we were, lying next to each other in a hot, dark room, still not sure if we were on speaking terms. "How do you think we're doing with this ALZ stuff?" Sweetie asked, emboldened perhaps  by the darkness.

M: You mean physically or emotionally? Cause, frankly, I don't get what's happening physically. You're supposed to be in the early stages. I haven't read anything about you being "here" one day and somewhere else the next. I thought we had years of "normal" ahead of us.  I get scared when I see you staring off into space. I don't know what's going on. I don't know how to talk to you. Is this the way it's gonna be? And emotionally? I'm not sure I'm up to this.

S: Sometimes it feels like I'm in a black hole, disoriented. Like being in my office before you brought the light in. I knew I was by the desk, but I couldn't tell which direction was which. Something's been "off" for awhile. Now I know it's ALZ.  ALZ is the answer to the questions I've been asking myself for a long time. My ability to reason things our seems to have lessened.

Let's say I had 100 million brain cells. ALZ has killed some of them, so maybe I only have 90 million left.  The good news is there's still a lot I can do, and there's still a lot I want to do.

M: Like what?
S: Go to Scotland. See the Grand Canyon. Visit my kids. Catch a really big fish.

That's as good a note as any to fall asleep,
Merry ME

Saturday, June 20, 2015

Snail Mail, Books and Quilts

Perhaps the only thing better than an actual quilt that you can curl up under would be a picture of a quilt that you can curl up under, or see close up.
Perhaps the only thing better than a pictures of a quilt would be a whole book of pictures.
Even better than that would be receiving that book via snail mail from an Internet friend you've never met, but thought of you because she knows the subject hits very close to home.

Many thanks to Diane Auser Stefan from Arkansas for knowing how much this book would mean to me.

Alzheimer's Forgetting Piece by Piece is a collection of pictures and stories by 54 quilt makers who have been affected by the ALZ. The quilts were originally made for a traveling exhibit to "draw us close to a difficult subject so we can understand, become more compassionate and ultimately use our own talents to effect change."*

"The idea for what would become the Alzheimer's Art Quilt Initiative," writes, Ami Simms, founder of Alzheimer's Art Quilt Initiative" first popped into my head in the shower. When Mom was living with us, it was one of the few places I could let out my tears privately. I took very long showers.

The resulting exhibit includes sad imaginings of an existence stripped of memory and learning' gritty illustrations of the anger, frustrations and stress of caregiving' beautiful tributes to loved ones take by Alzheimer's; and the anticipation of a future cure.These are extraordinary quilts of heartbreak and hopes."*
As wonderful as the quilts are, and to be honest I've only skimmed through the pages, what really touches me is how the community of quiltmakers worked together. I don't think there is a time in history when a group of women have not sat around a quilt frame and stitched for cause. I dare say it all began when cave women circled a dim fire while they made leopard-skin blankets. As important as the blankets/quilts were, even more so is the comaraderie of the women who stitch together pieces of their lives - joys and sorrows, gossip and truth, hopes and dreams, life and death - not just fabric.

In times when fabric and time were at a premium women learned to use both to create wearable, usable art. What might have looked like a scratchy, serviceable blanket held together by tiny stitches was, in essence, a canvas for expressions of beauty and love. As far back as the Civil War quilts were made to raise money for a variety of causes. Like Alzheimer's Forgetting Piece by Piece where all the profits from the sale of the book go to ALZ research, today's quilters often make quilts for special causes. They are often given to sick/hospitalized children, veterans, the homeless and those in nursing homes. Quilts are like warm, cozy band-aids. They help people feel better. The money raised helps fund research and cures. But in its simplest form, a quilt is a representation of the quiltmaker's thoughts and feelings.

This afternoon, I hide from the 100 degree temperatures in my cool, quiet haven. A quilt lies across the chair next to my bed. A cat shares my pillow. I have unintentionally hurt Sweetie's feelings. I feel angry and sad. I want to run as far away from ALZ as I can get, but I will look at pictures of others who have stayed. I want to rage and ask "why me? why now? haven't I done my share of caregiving?" Instead, I will read what others have shared and look for wisdom in their words. I hate living with the knowledge that he big bad wolf is hot on my heels, coming to blow my life to smithereens but for awhile I will take some of the advice I had out so freely. I will give myself a time out, take some deep breaths and feel grateful for my many blessings.


  • I am grateful for Internet friends whose kindness never ceases to amaze me.
  • I am grateful for books that take me to other places like magic carpets.
  • I am grateful for my grandmother who made the first quilt I ever wrapped around my shoulders and who taught me how to quilt.
  • I'm grateful for quilters, known and unknown, who give freely of their time and talent whenever the call is sounded.
  • I'm grateful for my sister and daughter who never met a quilt they didn't like.
  • I'm grateful my Sweetie who can make me laugh and cuss in the same five minutes.


Merry ME

*Alzheimer's Forgetting Piece by Piece, Ami Sims, Curator, Mallery Press, Inc, 2007, pg 3-5


Thursday, June 18, 2015

HMMMMM.....

Hello, this is sweetie writing.

I cannot recall when Mary started to refer to me as sweetie. I don't mind, in fact I like it. But she however isn't given to nick-names. Well....except for Wendolina, or Johnson, and I've never ventured to ask what she used to call Jim. Whatever, he apparently escaped unscathed as he seems to be quite normal. "Whatever," leads me to this:

There are few things I say which bother Mary. One is my all time favorite "whatever." Usually used to be descriptive of a person, place, thing, or some issue of one person or another. My son Aaron brought into his vocabulary "It Is What It Is." I understand that to mean to him just what "whatever" means to me. I use that phrase a lot now. Mary doe not like it either. I believe they are inter-changeable. Well.....? Yeah I guess so.

Speaking to my niece this evening, who said she was sad to hear about my "illness," I responded: "well, it is what it is. This is a new set of challenges for me and I am excited about it." HUH! Excited was maybe not so good a descriptor. Intrigued maybe or, interested. Well, it it what it is, whatever.

Back to nick names. With my white shaggy hair and equally long white shaggy beard, a new semi permanent glazed eye look, and on occasion laughter (who-ME?) maybe Dopey is more appropriate. You know though that I won't suggest it. But now that SHE WHO (in time) MUST BE OBEYED knows about it, she will probably wait until it doesn't matter who calls me what. How will I know? LOL

Sending you Love & Laughter, jdc

PS; The punctuation in these missives may leave a lot to be desired, but the spelling is really good. What you don't see, thanks to spell check is how I rearrange letters, or hit the same key several times. Not because I hold down the key, because my fingers bounce up and down so much. LOL as they type.

Estate Planning

In the Together in This Introductory Guide to Alzheimer's one of the first things on the To Do list - after safety but before medical - is to make sure our legal documents are in order. There are 4 must haves:
Health Care Directive, Medical Power of Attorney, Financial Power of Attorney and Last Will and Testament.

To prove to myself that I am capable of taking action - baby steps, not giant leaps - I called a recommended Elder Care lawyer on Monday. It just so happens he was hosting a brief seminar on estate planning on Tuesday so I said sign us up.  Anyone who knows me knows that I'd rather swim with sharks than sit through this kind of lecture.  I may have lost a few brain cells over the years, but I still consider myself about as smart as the Average Joe. Still when faced with a white erase board with words and dollar amounts written in various colors, separated by columns but hooked together by curving arrows, all my inner kindergartner can think of is recess. 

There were 4 other women and 1 man besides Sweetie and myself in the room. I took notes as fast as I could. I am pretty sure others were comprehending more than I was. No one else had the glazed over look in their eyes with a "la la la la"cartoon balloon hanging their heads.  When the person sitting next to me raised his hand and asked a question about "re-marriage" protection  I stopped coloring in all the zero's and putting smiley faces in all the o's on the page.  The question made the lawyer version Doogie Howzer, MD stop and scratch his head.  He stopped, stuttered a little, took a sip of water before addressing the question. I turned to look at my husband with early stage dementia with his hand still in the air.

WTF?
How is it that Sweetie can ask a brain teaser kind of question?
Didn't we come here because we needed information?
Didn't we come here because one of us has ALZ and can't remember stuff?
Am I on candid camera?

Turns out at one time in Sweetie's life he gave these same exact presentations to retired snow birds living in central Florida mobile home parks. You mean we could have skipped this action step and gone straight to signing the legal forms?

I understand that it is important for me to have a handle on this stuff. I'm glad to have the hand-outs and notes to refer back to. But here's what I took away from the meeting. 


  • Doogie is making enough in legal fees to give away really nice pens.
  • There's got to be a less painful way to explain stuff as boring as the sandscape in the Sahara desert.
  • I should have listened to my father.
  • I don't have much of an estate so why all the fuss?
  • There is not going to be enough money in the national budget to care for all the seniors on medicaid which is the #1 fall back position for paying for long term care of one sort or another. Elder Care lawyers stay in business by finding the loopholes to protect assets and get the government to pay the bills. 
  • Perhaps Sweetie doesn't even have ALZ. I mean, damn, if he can remember estate planning facts and figures from 15 years ago, maybe he's got sleep apnea after all and just needs a little extra oxygen at night. I think we need a 2nd/3rd/4th opinion.
Tomorrow I'll fill out the forms. Tonight I'll eat cake,
Merry ME



Monday, June 15, 2015

New books, changing attitudes

"I'm Still Here" A New Philosophy of Alzheimer's Disease. This book arrived in today's mail. Paging through I found this statement by John Zeisel, Ph, D., the author.
"The people living with Alzheimer's disease have inspired me to stay in this field. The way this illness affects the brain leaves most of them exceptionally perceptive, increasingly creative, and highly emotionally intelligent for years"
So it appears there is a period of heightened brain activity for some years before the decline in abilities. This means the perceptions gleaned from certain TV shows and movies are inaccurate. This does not mean people with Alzheimer's don't have memory lapses or forget things, but those incidents are a smaller percentage than we might have been lead to believe. Rather than having one foot in the grave, and the other on a banana peel, I can look forward to a long time of heightened perception, increased creativity, and highly emotional intelligence. HOO-RAH!

By the way; do any of you holistic folks know anything about drinking apple cider vinegar with honey or baking soda? Please let me know. If you don't want to answer as a comment here, then e-mail me at: jackdcooksr@gmail.com

Sending you Love and Laughter, jdc

___

The book that was delivered for me today is "Alzheimer's for Dummies" by Patricia Smith, Mary MItchell Kenan, PsyD, Mark Edwin Kunik, MD, MPH. As if she were speaking directly to me, Leeza Gibbons wrote in the foreword:
"Education is one of our primary objectives. There is no upside to keeping your head in the sand. This book is a cruical step in your new fight. Arm yourself with the knowledge waiting for you in these pages. It will help you find answers and resources as you adjust to your new reality."

Let the adjusting begin,
Merry ME 

Sunday, June 14, 2015

So..........

today.....

I walked hand in hand with my LOVED ONE,

I spoke to GOD,

I saw a new/old FRIEND,

I drank orange juice to lift up my SUGAR,

I ate breakfast with people who are dear to ME,

I got the recipe (again) for LONGEVITY,

I conversed with friends and was HEARD,

I conversed with friends and heard THEM,

Left comments for my community POSTERS,

I shared in a great turkey DINNER,

I ate asparagus and liked IT,

I BLOGGED,

..........How cool is THAT!






Life Altering Events **

Last year I stopped attending the church I've been going to off and on since I was a child. When I moved back in with my parents I got very involved spiritually and in the workings of said church. Over the years that enthusiasm waned, people I knew and loved died, the congregation diminished in size and I began to feel less and less at home. Which seems weird cause when I do go back it always feels like when you've moved away from home but go back for a visit. You know, those moments of walking in the back door and being welcomed with big hugs and a homecooked meal. But after awhile, when it's time to go, you are pretty sure that while it feels like home, it isn't home anymore.  I will always feel a call to sit in the pew that I shared with my mom and dad; a place where I once encountered the power of the Holy Spirit and the "communion of saints" but now feel only long gone memories. I stopped going because I felt more sadness than joy when I was there.  

I haven't changed my membership but I have been going to another church where I can worship and pray in cognito. I don't feel the need to get involved. I haven't joined a women's group. I don't go to coffee hour. I go to church, share a meal with the Lord, pass peace-filled blessings to those around me and go home. I've also realized that many Sundays it's easier to turn the alarm off, roll over and go back to sleep. I can't say that my relationship with God has diminished, I just don't feel the need to practice it inside the confines of a doctrine or building. Or maybe I'm just too lazy to make the effort.

Also, I think it's okay to say here that over the last few years, Sweetie has been having what might be called a crisis of faith. When we first got together I was glad we had being Episcopalians in common. Now for reasons of his own, he is uncomfortable in church saying rote prayers and listening to homilies that no longer make sense to him. He doesn't feel like his relationship with God needs an intercessor. The concept of the Trinity has yet to be explained in a way he can grasp.  I'll be honest, it disappointed me at first. Then I decided its what we believe that's important, not how we believe. If we both live according to Jesus' mandate to love one another, and honor our Baptismal vow to "strive for justice and peace among all people and respect the dignity of every human being." then I think we're doing pretty good. *
_____

All that to say we had kind of a strange morning. It seems almost as if a window opened to give us a glimpse of what the future might look like. This is where the memory I once had would come in handy because without taking notes or turning on a tape recorder there's no way I can chronicle all that was said.

Because we were having brunch with some friends after church I thought it might be nice to go to church beforehand. It's not far from the restaurant and, under the circumstances, it might be good to be in a place of quiet prayer. Partaking of Holy Communion is a grace-filled moment for me and, let's face it,  Sweetie could use some "grace" even if he doesn't know where it's coming from.

I was up and dressed when Sweetie came stumbling down the hall. He said he wasn't quite awake yet so I didn't think much of it. It was an hour or two before my normal rising time. I wasn't real awake either. As Sweetie reached for his what has become his uniform - white t-shirt and blue jeans - I asked if he could wear something else. It was no big deal really, I just thought maybe he could switch it up a bit.

"Do I have to," answered Sweetie sounding for all the world like a 4 year old being asked to take a bath. In hindsight that should have been a clue that something was off. Sweetie doesn't usually whine. And a shower is usually enough to wake him up. He was walking slower than a turtle and swaying like a drunk. Still I didn't think too much of it. However, by the time we got to church and he could barely walk by himself I began to worry. I thought he just hated the idea of being there. Leaving was okay with me if it was that hard on him. (An aside about how I think Grace works. Sweetie sat on a bench while I parked the car. As he stared at a rosebush, a green dragonfly with prism-colored wings darted between the roses. Sweetie's animal totem just happens to be the dragonfly. I believe it was no ordinary dragonfly, but God in a form Sweetie could identify. When I walked up and took Sweetie's hand in mine, I'm pretty sure I heard a small, but powerful, voice whisper, "Welcome home, Jack.")

We went in, found a seat next to our friends. While I stood, sat, stood, kneeled, sat and stood the way Episcopalians do, Sweetie sat, barely moving. When we got up to go to Communion, he looked like a cross between a wobbly old man and a kid who lost his mother. WTF? When served the wafer, he appeared not to know what to do with it. When the Chalice was presented for "dunking" his hands shook so I thought the whole thing was going to spill. (Once an Altar Guild lady, always an Altar Guild Lady. Cleaning up spilled sanctified wine is a chore and a half!) Again, Sweetie stood on wobbly legs to head back to the pew. I grabbed my purse and walked him to the car instead.

M: What's going on? I asked trying to sound calm, but fearing there was nothing to be calm about.
S: Everything is tingly. And I'm dizzy.
M: Did you eat anything?
S: No
M: Did you check your blood sugar?
S: No.

Okay, so it looked like we were dealing with low blood sugar. A glass of orange juice would hopefully do the trick. Orange juice, coffee and an omelet later, his hands were still shaking and his voice sounded like it was coming from far away. Quite frankly he looked like a zoned out space cadet.

Here's the odd thing, though, when our friends arrived, weird as he looked and sounded, Sweetie spoke   clearly. He had no trouble recalling jokes from the Willy Nelson book he'd just read, or recounting something he'd read in the book about ALZ, or sharing painful memories from his childhood - something he rarely does. (Please see previous post).

"Stressful situations require extreme amounts of energy. I think that some experiences are so sever that they not only temporarily drain us, but also stifle recharging sessions. I suspect that the accumulative effects of the Super Energy Drawing Events (S.E.D.E's) in my life have permanently minimized my ability to recharge. SEDE's may be, in part, or fully, responsible for the extreme fatigue that I have endured for years. Or perhaps it is isn part, or all, due to Early Onset Alzheimer's Disease?" **
The things he wrote last night, were still weighing heavy on his mind. Years of feeling angry towards his dad and abandonment by his mom, appear to have floated away. Is that possible? Is that how letting go works? Like loosening your grip on a tethered balloon? Once free, it glides away on a current of unseen air? Could the release of pent up emotions cause trembling hands and lightheadedness?

To be continued ….

* Religion is a personal thing. We may or may not see eye to eye on what I've said, but that's okay. I think God is big enough to handle all points of view.

** Don't Bury Me It Ain't Over Yet, by Charles Schneider, author house, Burlington , IN, 2006, page 7-8

Awareness can come at any time.

Today we had lunch with Mary's sister Judy and her husband Russ. Lots of great talking, laughing and joking. As we left Mary turned tome and said "You are a different man." "You laugh, tell stories,
express yourself. You participate more now than I have seen before." "You've changed." That I think is good news. But why?

A little Cook family history here. George Edmund Cook, my dad was raised by a severe father. He and his brothers were all grim faced, down trodden men of little humor. I cannot ever remember seeing my father without a dress shirt and tie on, but not always a coat. He was a male secretary to the President of the Erie Rail Road for years prior to going to work in the Erie Tug Boat office in New Jersey. There he was a clerk and accountant.

He and I did not get along for reasons I won't go into now. As I grew older I grew further and further away from both my parents, eventually entering the US Army on my 17th birthday. If I knew anything at all, I knew I would never be like my father. I smoked, drank, raised as much hell as possible (before going into service,) and it got worse/better depending on who you asked after I got away from home.

Over the years I really thought I had left my father long behind. All the HOOIN' and RAHIN' covered up a lot. Marriages, children, broken dreams, failed jobs all took their toll and one day I looked in the mirror and there stood George. For a while I kicked the drinking into high gear. No matter what I did or where I went, there I/he was.

My own brand of stoicism saw me through a lot of years. Right up until it didn't serve me anymore. I gave up drinking.I gave up smoking and I looked for a way to re-invent myself. I found that through AA. CODA,and self study. Attitudinal Healing and Insight Seminars helped too. I got my own brand of religion. I went so far as to profess my desire to enter the priest hood. And I studied religion fervently. I spent four years just preparing for seminary through a program entitled Education for Ministry. I was ready to go. Sadly (then)  the Episcopal Bishop of Florida didn't see me as priestly material and rejected my application. Can you see where I was becoming ever more and beyond my father?

I have played emotions close to the cuff. Protected myself from hurt. I spent 10 years studying and practicing the art of Coaching. But I still had not gotten over myself.

Then a day or so ago I read this little book by a guy who knew he was slipping away into ALZ.  He said he was relieved to have the diagnosis. Relieved? Then he went on to explain; he didn't have to prove himself anymore. He had done his bit, was satisfied with how he led his life and he now was set free from pretense.

Having thought some about Mary's comment I realize I have subconsciously come to know I don't have to hold back anymore. How COOL is that? I do feel emotionally lighter. In fact, more alive than since I don't know when.

It is up to me now to see that Mary and I live life to the fullest for as long as we have got. I will not give in to this disease. I know I can't beat it, but I will fight it so as not to be beaten down.

In Love and Laughter, jdc

Saturday, June 13, 2015

Bucket List - NOT or Don't Worry Be Happy

A few days ago I asked Sweetie if he had a bucket list which started a whole bucket list conversation and stopped my writing in its tracks. I decided I was going to write about bucket lists in general then narrow it down to our personal lists. I started but never got past quotes from the Jack Nicholson/Morgan Freeman movie. Perhaps it's the fact that I don't have my own list that got in the way. Which came first - the list or the essay?

_____
Worry never robs tomorrow of its sorrow,
 it only saps today of its joy.
Leo Buscaglia

It is also possible that I stopped writing because I had begun the descent into stay-in-the-bed sadness. I'm a total ostrich when it comes to facing tough stuff. Even though I've learned over the years that depression is not my friend, it is my go-to defense mechanism. At least in the beginning. Close the curtains, unplug the phone, then give me clean sheets and a fluffy pillow, a cat curled up at my feet, a CD the soft, soothing sounds of ocean surf or gentle rain, and I'll show you how to hibernate through most any problem except a house fire. I am fully aware that this method of coping is not helpful or good for the rest of my body, yet nothing feeds denial like morphean oblivion. Ask any Grizzly bear.

When not asleep, I've been worrying. I only know one person who can worry more than I do. She's 94 years old. She lives alone with no one to talk to except her son who spends a whopping 15 minutes with her every day and me. This gives her 23 hours and 45 minutes a day to worry. Like Mary I tend to worry about my own health as well as others. If I get a mosquito bite, I feel sure I'll come down with West Nile Virus. A headache will send me to the mirror to see if I can still smile without half my face dragging. Forget where I put the keys? It's a pretty good bet that I've got dementia. Only now, Sweetie has dementia for real. With all that comes with that, what if I have it too? Or cancer? Or both, plus West Nile? Criminy, it's enough to send even a normal person to bed.

 If I've heard it once, I've heard it a kazillion times. That age old caregiver adage "Put your own oxygen mask on first." I've had to restrain myself when on an airplane and the flight attendant goes into her spiel. I swear, those 7 words makes me nuts. Every caregiver I know would love to spend a few minutes of self care inhaling pure oxygen, or downing a shot of tequila, or grabbing a quick nap, but I dare say the only time this is possible is in a locked bathroom. Sitting on the toilet and taking a few deep breaths is the ultimate in multi-taking. I decided this week it was time to put on my own oxygen mask. I made an appointment with my psychiatrist.

DR. J: Mary, it's so good to see you.
ME: Yes, it's been awhile.
Dr. J: I hope life has been treating you well.
ME: Not so much (half chuckle/half groan) I guess that's why I'm here. We just learned Sweetie has ALZ.
Dr. J: No words necessary. The look on his face says it all.
ME: (I give the short version of the last year - memory loss, doctors, tests, scans depression, diagnosis) But here's the kicker. My memory is not any better that Sweetie's. There's no way I can answer those 30 questions. Some days, (okay, most days) 2 year old Bella is smarter than me. And I probably have cancer, too.

Dr. J:  (To his credit, he did not burst out laughing. Instead he used his most soothing voice as if talking someone off a 20 story building.) I'm sure you don't have ALZ. Or cancer. Most likely you do have "adult, age-related cognitive decline," and you are a bit neurotic. Neurotic? Me?

The strange thing is as soon as he said this, I began to feel better. I still can't quote the quadratic equation that I once knew as well as my phone number or where I left my keys, but I felt less scared, less helpless.  Of course, I remember that Sweetie's GP told him the exact same thing a year ago. However, the relief I felt wiped out all my "yeh buts." I almost felt energized.

Here's the thing I/we know. Worry zaps us of energy and joy. I'd be much better served to put my worry into action instead of sleep. The Introductory Guide to Alzheimer's states on the very first page that
"Alzheimer's is not a death sentence but if your bury your head in the sand (i.e. sleep whenever possible)* you will fail. 
There are no 'magic bullets' - you have to work at it!"

Ironically Dr. J's prescription for me is similar to Sweetie's - exercise, eat foods rich in anti-oxidants, breathe,  spend the time we have together living, not dying, don't isolate myself, get counseling if I need it and, while he didn't say it I'm pretty sure he was thinking it, keep my own oxygen tank close by.

Signing off,
Neurotic ME

* this is not part of the original quote. I made it up!

PS. Do you have a Bucket List? What's on it? Why?

Friday, June 12, 2015

The Light, Breakfast, Duality of Thought

As I have wandered through web pages or blogs I have started to pay attention to the side postings from other folks. One of those the origin of this post from Hope Koppelman. She explained that this prayer was read to her by her mother when Hope was young and she adopted it as her mantra. Seems pretty good to me.

I Am The Light,
The Light Shines Within Me,
The Light moves
Throughout me,
The Light Surrounds Me,
The Light Protects Me,
I am The Light.


Seems I can wrap myself in this right now.

Breakfast; Breakfast has always been a two edged treat for me. On the one hand I enjoy a large breakfast of eggs, bacon, sausage, grits, rye toast, maybe a little southern gravy and of course coffee. 

On the other hand I have to remember I am diabetic and do what I must to keep my sugar down. BAH! This morning I made a delightful mixture of: two slices Ciabata Bread, Olive Oil, cheese, and coffee. A local food store, Public's offers the Ciabata bread in it's bakery. POOH! I thought for a long time they were baking it right there and I thought that was special. Again, POOH! It comes in frozen and then thawed and heated before being placed in a display case. Bakery indeed. Any way, I do love the bread despite it's "less than" origin. The Olive oil is a replacement for butter. Pretty good idea. The cheese was a chunk of left over. Of course fresh ground coffee. Now I use real cream and have given up my flavored coffee creamer. 

Duality of Thought: It is disconcerting when Mary and I start speaking each saying the same thing. Or express a thought we have both just had. Or finish sentences for each other. We do believe there is a possibility we were a couple in a past life. We're here to complete unfinished business. Whatever!

Mary has ordered four books on ALZ. The first arrived yesterday. The title suggests it is funny; "Don't Bury Me, It Ain't Over Yet!" Not a big book, just over 100 pages. And it is anything but funny as it describes his diagnosis of Early Onset Alzheimer Disease. He wrote this prior to moving into oblivion. It ends with a chapter from his wife; her description of their experience together after his diagnosis. Descriptive, real, and very sad.

My eyes leak when Mary looks into them and says "We are in this together. I will not leave you." A loving I have never known before. I am so grateful. I Love you more than all the stuff the universe is made of.


Thursday, June 11, 2015

before i lose my mind, let me just give you a piece of it

it seems to me that my life has been reduced to incidents. one right after the other. no relief but of the comic kind. today i want to report on three incidents that recently occurred which involve someone we all know and love.

first; me and mary going to the bank. we are in the car, i am driving. we are sitting at a red light about to turn left onto a street which runs along the side of mary's bank with an entrance off of said street. as we turn i ask mary where do you want to go, in here to the drive through or around the corner to the atm. oh to the atm. i look and see four cars at the next intersection waiting to turn right where i need to turn. i glance to my right and see three things.a) the car in the entry way is no longer there now. b) i am almost past the entryway. c) there is a car bearing down on me from the rear. i re-act. i pull the steering wheel hard to the right and slip up the entry way (it's just another way to get to the atm, right? Suddenly mary slams into my shoulder. she is screaming jack whats wrong with you, you better let me drive, your wild. i'm not going to let you drive any more. **WAIT A MINUTE,.YOU ARE NOT GOING TO LET ME DRIVE ANY MORE? OH YEAH I'LL SEE ABOUT THAT.** i think to my self. (hey i'm losing my mind i'm not crazy!) to be continued later.

second; me and mary going to the brake shop. we are in the car, i am driving, we are on a four lane highway at a red light in the left hand turn lane watching the cars come from a side street and turn left right in front of us. across from us are two lanes of traffic not including the turn lane also going left. in the outer lane of the opposing traffic is a semi which has just rolled to a stop for the red light  i glance to my left and realize i am not up far enough to turn directly into the entry way to the brake shop. the turn arrow turns green, i shoot across on my left hand turn and into the entryway at an angle, in front of the semi. mary is ducking for cover, screaming jack are you out of your mind **NOT YET** you better believe i'm driving from now on. **RIGHT** to be continued later.

third; mary and i have come to enjoy laying in bed side by side each using our lap top. several days ago i found a program on my lap top which i had not added. nor did i think had the IT guy who services my lap top. so, i removed it. wait a minute, it's still listed there with the other programs but it has a little red X by it. now my lap top is wonky. nothing works as it should. this can't be happening to me. i had just lost my other lap top to spilling coffee on it when i fell asleep. i was bereft. it's saturday or sunday night, i now have to wait one or two days for bahador to open his shop. monday comes. i am on the phone at the crack of 10:am. no answer. hmmmmm, where could he be? i tried again, still no answer. my hair cutter is in the same strip mall. i called her. have you seen bahador? nope! i drove up there **ALONE**, he was not there. hair dresser if he comes in please call me OK! after 6:pm i gave in and gave up. another night without "my precious" resting on my turrmy.
mary says, why not go in your office and use the pc. i rose an eye brow at her. ok then you can use mine. puhleeze....an apple. tuesday, no success, wednesday, success bahador is there i can go and wait he says i have an appointment to go to and i'll be back by three. ok. mary is going out to meet an old friend from san diego who she has not seen in 30 years. a girls gab fest. will you drop off my lap top with bahador on your way to the beach? yes! phone rings. the house phone i know it is mary. it is. the place is locked up tight and no sign of him. i'll drop by on my way home. phone rings, the house phone i know it is mary. it is. still no one there. she drives home. i am losing my mind (early). i find on our dining room table amongst the books for the garage sale (do not ask what garage sale. just do not go there) i find "the tao of willie" by willie nelson and turk pipkin. maybe i can get into this.
folks. willie should be president of these here united states. he is brilliant, a true patriot, he holds no punches , and he can sing.

As i started to read it was clear willie has more than a passing knowledge of the tao te ching. he is also a jokester. i start reading the jokes to mary. she is howling with laughter as am i. several jokes and much laughter later she says stop, no more. we needed that. i was up all last night reading this book.

Seriously people this is a book to read.Willie Nelson is a whole lot more than a guitar picking red neck from Texas. That reminds me. Did you hear about how you know when you're a red neck from Texas?                  Catch ya later.

Oh and as for the first two segments. It's all passed, she's forgotten by now that SHE IS NOT GOING TO LET ME DRIVE ANY MORE.

Friday, June 5, 2015

Tears would roll down my cheeks, but my beard gets in the way.

It has been another tumultuous night, followed by a barely awake day. I'm down, I'm up, then I'm down again and up again; history repeating itself. It's De javu all over again.

Now it is Friday evening. Mary & John are out walking the communal dog. I and the cats are in bed. Me with my laptop balanced on belly, while cats are hanging off the side of the bed being vigilant in scouting out the dog. The walkers have returned. The dog is wandering through the house shaking itself-flapping ears against its head. The cats are well, being cats. One is playing non-chalant to the dog while the other is laying on her back with legs splayed; feigning sleep. Mary is watching Date line in the den. If I didn't know her better I could get concerned about her learning how to commit the perfect murder.

We've been across town to visit Amy, Aaron, and Kellie, followed by Orange something or other hot dogs and fries. Young Mr. Cook and family are going to Tn. later in the week, for 10 days. POOH!

There is so much we could/should be doing and plenty of time to do it. Yet talking about it is our
only progress so far.Wait! I did get the shelves back together in the garage. Another place to move stuff from point A to point B. I do remember several people indicating a willingness to do "whatever" to help us around here. I don't think however that garage sale set up is included in those expressions of support. I can dream though can't I?

Mary asked me tonight if I have a "bucket list." I don't even have a pail list. My list  is more like what I could have done, not what I ought to go and do. Now these are not regrets, more like lost opportunities. Finishing flight school. Keeping several of the cars I have owned over the years. Seeing myself through 20 years of service rather than eight. Keeping better tabs on family and friends. Finishing education. Writing more. Focusing on today, only. I could go on and on but then I run the risk of slipping into regrets.

IF TWO WRONGS DON'T MAKE A RIGHT; WHY ARE PEOPLE WRONG TWICE AS MUCH AS RIGHT?



Books

A few weeks ago, in a time that will forever be known as Before ALZ, Sweetie and I decided once and for all (or 24 hours) that selling, downsizing and moving was the right thing to do. A realtor friend helped us find some comparable prices for our house and parted with these words. "I'll come back when you've de-cluttered." She might have said, "send me a picture from the top of Mt. Everest." Don't get me wrong, we're not hoarders, even though one of us does like to pack things into closets in a style closer to Fibber McGee than Martha Stewart, and one of us likes to stack up things up in Jenga-like fashion. Woe to the person who wants something on the bottom of the pile.  My father used to complain (what's new!) about the way I covered every flat surface in the house with stuff.  It used to be that my mind was organized, even if my living space wasn't. I don't think I can say that anymore. 

After the realtor left Sweetie and I went through the house like a tumbleweed in a tornado. We carried things to saw horse tables in the garage. We unloaded closets, drawers, kitchen cabinets and bookshelves. What didn't fit in the garage (the cars are now parked in the driveway) was temporarily stacked on the dining room table. We bought Garage Sale signs for a mega sale. 

Then, just as suddenly as it had come up, the winds of productivity died down came to a screeching halt. While the need for organizing, de-cluttering and moving became ever more important, our ability to think, let alone function, stopped. I am having trouble focusing on the next step. What comes first after the doctor says, Alzheimer's?

Cry. Shout. Stomp your feet. 
Cry. Shout. Stomp your feet.
Hold your partner
Do si do. **

Today, ten days after leaving the neurologist's office, I felt the slightest smidgen of forward movement. I ordered 4 books on the subject of ALZ. It's a law of nature, I believe, that when one clears a bookshelf, one feels an uncontrollable desire overwhelming need to buy more books, like washing your car is better than doing a rain dance.

I have to laugh at my own delusions of grandeur. Writing this blog is something I do for me. Yet in my secret thoughts (not so secret anymore!) I harbor the idea that my words will turn into a best seller. Fame and fortune could be a part of that dream. Mostly it's the idea of seeing MY book on a table in Barnes and Noble, or having Oprah interview me, or giving a TEDx talk. For someone who gets a stomach ache at the very mention of public speaking, these thoughts are obviously grandiose. For the most part I'm content with the process, not the end result.

Believe me when I tell you that any book I might write would get lost on bn.com. I discovered today that there are over 180 books on the subject of ALZ and that's just in the "memoir" category. (I have to ask, with finding a publisher as hard as it is today, how have all these authors succeeded?) With titles like:
Alzheimer's for Dummies
Embracing the Moment
Help Me! I'm Slipping
Slow Dancing with a Stranger
Death in Slow Motion
We Keep Potato Chips in the Refrigerator
Finding Life in the Land of Alzheimer's Disease
Where Two Worlds Touch
One Thousand Joys and Ten Thousand Sorrows
Don't Leave Yet
I'm Still Here
Don't Bury Me It Ain't Over Yet
[and my two personal favorites]
Mothering Mother 
and 
Where is Jack?
how can there possible be 165 more books for and about ALZ patients and caregivers, and who knows how many words written and published on the overall subject of Alzheimer's Disease? Who has time to write or read books on any subject when living with the disease? 

I watched Still Alice yesterday. My sister recommended both the movie and the book.  My gut reacted to the first half hour, my heart the rest of the movie. I don't know how accurate the movie portrayed someone slipping into oblivion. I realized that all I know at this point is that Sweetie will one day not know who I am. I'm sure there is a lot between now and then, I'll need to learn. I'll be honest, I can't wrap my head around Sweetie not being here even when he is, and when I feel overwhelmed, my go to defense is denial and lots of sleep. 

It might appear to be a baby step, but I feel like ordering 4 books on ALZ is heading in the right direction. I'll also go through the books on the dining room table and pull out the ones I thought I wouldn't need anymore. The ones on caregiving and grieving. I think that's enough pro-action for one day, don't you?

In the words of Charles Schneider, author of Don't Bury Me It Ain't Over Yet
"Being diagnosed with Alzheimer's Disease is not cause to immediately start digging your own grave."

Putting down the shovel and picking up my blankie,
Merry ME

PS. Many of the books on ALZ compare it in some way to dancing. Guess that's why I invented the ALZ square dance.


Wednesday, June 3, 2015

Apparently Running Away Isn't an Option

Before we got the ALZ diagnosis Sweetie and I were seriously contemplating a giant move. Somewhere we both fantasized about. Fantasies so real we could almost smell the mountain air and hear the birds singing.  My ancestors were pioneers that crossed the mountains from NC into TN. Some still live there. I'm pretty sure I've got Smoky Mountain genomes in my DNA. Some of the most peaceful moments in my life were spent in my father's retirement cabin. A part of me cries out to "go home." That's the fantasy.

The reality is the roads are curvy. Thar's bars in them thar woods - and spiders and snakes. When you live in the woods there's no running to the Dairy Queen at 10pm. Hell, there may not even be a Dairy Queen or movie theater, or fabric store. Small town living is just that - small. Is that really what I/we want/need at this time in our lives? What about doctors, hospitals, nursing homes?

There have only been a couple times in my life when I've thrown all caution/reason to the wind and acted on my own "I want it and I want it now" desires. While I may have learned some valuable lessons from the experiences, none of them had very good outcomes. I'm right to be cautious now. I know it. Sweetie knows it.  The very fact that I can control where I live but not the disease that will take my husband from me, makes me want to run as fast as I can to a mountain hideaway. 

Instead I sit in my bedroom night after night looking at real estate sites. Isn't there some theory that says if you do something for 30 days it becomes a habit? Sweetie and I have fallen into a new routine that, even though I say "this is the last time," here I sit, with my computer on my lap and my head spinning like a cotton candy machine.

It's time to downsize, time to de-clutter, time to let go of what was and hold on to what is for as long as we can.  I think we've looked at every house, townhouse and condo in Jacksonville at least 10 times.  We drove through a couple neighborhoods today, even looked at a house a couple blocks away from where we live now.  In my lifetime I've moved 18 times. Crossed the country 4 times. The thing is, except for a couple of those moves, someone else picked the spot. My job was to pack up and tag along. It probably sounds crazy, but I have no idea how to go about finding a new home.

Maybe that's the problem. I'm looking for a home, instead of a house. That's backwards, isn't it?
Maybe it would be a lot easier if Sweetie and I didn't have so many other things on our minds.

In the serendipitous way that the Universe works, I got a letter today from my friend Catherine, who happens to be one of the bravest women I've ever met. Without knowing about the ALZ diagnosis, she shared these words of wisdom.
"Moving is hard. It is one of the top causes of stress. But there is an excitement in moving somewhere new - a freshness. Family has been my number one criteria. I've never been brave enough to move to the beach or mountains by myself."
Catherine's is just another voice of reason cutting through my fear. I know she's right, like my son and daughter and sister and anyone else with a grain of sense. While pretty, a wooded sanctuary will not offer the support we're going to need in the coming years.

It's almost midnight. I've got a couple more hours of surfing the net. If anyone has some suggestions on how to make selling/buying a house easier, I'm all ears.

Merry ME



Thoughts of a particular yet jumbled nature

We are caught up in the particulars of this living with a killer disease not the dynamics of living, of determining how to live out the rest of our lives together.

Am I being selfish to ask Mary to move to an unknown place? Aren't we already living an unknown regardless of where we are?

Whether we have eight months, or the average eight years from diagnosis to death, or many years beyond won't we have the support, the love from family & friends, from Spirit to sustain us?

Will we make errors in judgement so severe there is no hope of redemption?

Will we seek the easy way of convenience to live together or find peace & pleasure in what we have regardless of our situation?

Monday, June 1, 2015

Zinfandel

Sweetie and I went to breakfast with this morning with some new, but quickly becoming close, friends.
As we were deciding what we wanted to eat, Sweetie began to give a brief rundown of how he/we got from thinking he had some memory issues to the diagnosis of ALZ. He paused for a moment, trying to remember something, without thinking I jumped right in to finish the story. I didn't mean to talk over him, but that's exactly what I did.

When our friends got up to order, I apologized to Sweetie and asked him to please stop me - in a nice way -  if I do it again.

S: What's a nice way? Shut the f*#!k up?
M. I was thinking of a kinder, gentler way. We need a code word. Looking up I noticed a sign advertising a special on white zinfandel wine. Zinfandel. Next time I interrupt, just say zinfandel, and I'll know to be quiet.
S: How do you expect me to remember zinfandel?
M: It'll take a little practice!

Later on in another conversation, I heard Sweetie say zinfandel. Oops! I did it again! We both laughed and our friends were clueless. It's kind of awkward, but I think we're on to something.

Still later (it was a long lunch!) Sweetie got up and started a conversation with the people across from us. Turns out the man was 3 months shy of being 100 years old. The six of us shared stories and laughs for about 15 minutes. When asked the secret to his longevity, the gentleman said vinegar and honey. Sounds like a deadly combination to me, but he was a retired doctor so he spoke with authority. When the man smiled his whole face lit up, even his eyes twinkled. But more than I noticed that when Sweetie was engaged in this conversation his mood lifted.

Isn't it amazing what a smile can do?
Merry ME