Embrace The Suck

.....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. ...

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 an...

"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

.....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 ma...

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...

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 A...

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 i...

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....

"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 in...

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!

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...

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 kn...

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...

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 bak...

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 int...

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 w...

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 thr...

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...

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?

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...