Saturday, May 30, 2015

Running the Race

When something bad happens, you have three choices. 
You can either let it define you, 
destroy you,
 or you can let it strengthen you.
Maria


I can hear the clinking of pills falling into their plastic holes, like horses being loaded into the starting gate at Pimlico. Across the hall Sweetie is filling his pill case for the week. Mostly I don't pay any attention. He takes care of his meds and I take care of mine. Except for ever-changing lists of meds neither one of us can even pronounce.

Dammit. F*!#K!
It wasn't the words but the frustration in his voice that startled me.

What's wrong?
I dropped the damn pills. I can't hold these little ones.
Need some help?
No. I can do it.

A few minutes later, job completed, my love came into the room with tears in his eyes.
Are you crying?
I'm just so damn frustrated, he says as he plops his head down on my tummy like a pillow - his go to comfort spot. From this position I can rub/scratch his head, shoulders and half his back.

Except for the ceiling fan whirring up hurricane force winds, the room is quiet.

My father was 94 when he died. In all honesty I think his heart stopped beating 10 years earlier when my mom passed away. He was strong enough, courageous enough and mean enough to keep going until he was diagnosed with bladder cancer. That's when he turned down treatment and checked into hospice. He lived for a year and a half beyond the requisite 6 months. The truth is in his mind he was already gone. Not so much suicide as ready and willing for life to be over.  From the time he signed the hospice papers he/we lived in a void between living and dying.  There were days he would be his old military, I'm in charge, don't cross me dad one minute and circling the family wagons for a death vigil the next. Needless to say it was a tad schizo.  

I've begun to realize that the same thing has happened been going on since Tuesday. The doctor said ALZ. Jack and I heard dying with a capital "D".  Somewhere in the conversation there was mention of "early stage" and  medications that can slow the progress. Yet one of my first thoughts was of holding the hand of a man who might not even know me while he took his last breath.

WAIT JUST A MINUTE, I'm finally hearing through the fog of dread in my brain. There is no cure for ALZ  but there is still a lot of life to be lived, love to be loved. Not to mention stuff to get rid of and maybe even a dog to walk. If we are to be robbed of time and memory, we can't just hand it over to the robber without sucking every precious moment of it.

As I scratched Sweetie's head, a brilliant (if I do say so myself) idea came to me. Why don't we try to find one of those pill counter thingamajiggies that pharmacists use to dispense medicine. They never have to touch the pills - they just count them out, scoot them into the funnel and pour them into the bottle. By golly,  I'm a genius.

By the time he sat up, Sweetie felt better. Not ready to do the happy dance, but comforted. It's as if a small window of our future was opened for me to peek inside. I saw that if I can keep my wits about me and not go all Prissy from Gone with Wind, if I relax into the pain as if giving birth, I'll be able to do this. I'm reminded that Carol told me this journey would be like a marathon. It was as if Sweetie and I had shot out of the gate and about to break the tape at the finish line without even running the race. We were leaving out the part where our bodies work like fine-tuned engines, where people line the roadway and cheer us on, where we drop to our knees to catch our breath and lift each other up, where strangers hand us water and sweet, juicy oranges. Any runner will tell you it's important to get a good start out of the blocks and to save a kick for the finish, but the whole point of the race is in the middle. (Actually, I just made that up, so I don't know if runners think that or not, but it makes sense, doesn't it? Otherwise what would be the point?)

God spoke to me and through me today.
Feeling blessed,
Merry ME

Notifications

Well now; I am blessed with two sons and two daughters. My youngest (42) lives in Jax. A son and two daughters live in NY State. My oldest is 53, next is 2 years younger and next is 1 year younger. I know if I have the ages wrong, I'll hear about it. I called and spoke to the NY contingents to mixed reviews. Sorry to sad. My youngest and I had lunch. A fete in itself as he has a lot of work to do. Although he and his family live across town we see each other rarely. Our cats and dogs set off allergies in them and the stay on the go. (Cats in the cradle sort of arrangement.) Today we sat and talked at length. Everything for ALZ to grand child to work to whatever. Then we went out for hamburgers. Things I didn't know: the problems he has with his stomach, the different medicines he takes, the adjustment he went through with a new baby, just how level headed he is, and his perception of me. I was both floored and blown away. I had no idea. We parted making a pact to see each other twice a week from now on. To see him and get to know my grand daughter better. All in all, a great day.
The pressure behind my eyes is easing, I don't feel like my eyes are going to leak down over my chest. A fear subsided. I realized too that a weight has been lifted from my shoulders. Mary has received a lot of grief lately. "Whats wrong with him?" "Dizzy; OH YEAH." Clearly I have been faking it. At least now I can have on my tomb stone, "I told you I was sick," More important is that Mary get some relief.
Mary thinks she may start writing again. I hope so. she is a talented writer. I will add comments to this blog and maybe re-visit my own. I have a file drawer full of stories, prayers, poetry written years ago I could pull out and post. Enough for a year or as long as I remember to do it.
Be kind to one another. Speak your truth without malice.  You may be 97% water, but always remember you are made of 100% Love. jdc

Panning for Gold

As I said in my last post, it's hard to be grateful when a big pile of poopoo is dumped into your life. While I was waiting at a rather long red light this afternoon, I pondered that idea a little bit. What is poopoo, I asked myself, but fertilizer? And what do you do with fertilizer? You grow things! Sweetie tells the story of the time he bought 2 rabbits for his son. He built a rabbit hutch in the back yard for them. It wasn't long before he noticed that the grass growing under the hutch was thick and green. I believe he contemplated a whole herd of rabbits.  Maybe one day we'll write a book about our Alzheimer's journey. We'll call it The Grass is Always Greener Under the Rabbit Hutch, and hope there's as much humor in it as Erma Bombeck put in her book of a similar title.

The really cool thing is it's already happening. The fertilizer is already making things look better. I told some friends today about Sweetie's diagnosis. Almost immediately my inbox was full of love and light. I could feel it, and I could feel my mood lifting from woe is me to gratitude.  Someone please remind me if/when I forget to pan for the gold of gratitude in the muddy, murky waters that Alzheimer's Disease is sure to churn up.

In just one day:
Mtr. Judy and Fr. Georges added us to their daily prayers.
Ter promised unstoppable support, gold in the darkness and love every step of the way.
Akasa Wolfsong offered up inordinate amounts of prayer and wave after wave of healing energy
Po sent tons of healing light and good energy.
Mel reminded me that we have been courageous and resilient in the past and there's no reason to think we won't be in the future.
Laura sent prayers and hugs.
Sorrow made me laugh.
Wendy, Linda, Jean and JoJo offered to help in whatever capacity is needed.
Katy offered to do research on treatments, specialists, complementary care, etc.
Barb suggested a good read on the subject. (I'm Still Here by John Zeisel)
Wendy sent an article about meditation (http://www.washingtonpost.com/news/inspired-life/wp/2015/05/26/harvard-neuroscientist-meditation-not-only-reduces-stress-it-literally-changes-your-brain/?tid=sm_fb)
Debbie reminded me how lucky Sweetie and I are to have each other.
Carol gave me a list of questions to ask myself over the coming days. "Just questions," she wrote. "Let them all hang out together. With no demands. Get them out of your head and heart so you'll have some place to put them. The answers you need will come."
Sweetie made a joke about not remembering things and we both laughed.

See what I mean. Bright golden nuggets of friendship and love.
In a mine field of poopoo but feeling blessed.
Merry ME

Thursday, May 28, 2015

My First Co-Blog

I remember back in the 50's or 60's a song about I'm The One, a native son or something. Mary said I am the 1 in 9 who has ALZ. That's the connection. Gotta go to You Tube and look it up. I think it was a Bobbie Darin Song.
WOW! About a year ago Mary and I went in to talk with my primary Doc. I showed him a list of symptoms for ALZ. and stated I had every one of them. He said they were the same symptoms for sleep apnea. So we got another C-PaP machine and tried it for a couple months YUK! Set that aside and went to a Neurologist who gave me some cognitive tests in his office and thought it was great I answered 30 out of 30 memory questions. Over the next few months I was in and out of Dr's. offices, tested, advised and had to fight with the insurance company over CAT scans PET scans and such. 3 months ago I had a CAT scan of my brain. Two days ago I was told the scan showed my brain had lost mass on both sides, an indicator of ALZ. Another lobe on the back of my brain had shrunk also. This one controls balance and tremors. Explained why I have problems in both areas.
I spent a days worth of time studying ALZ. Sure enough when I got through I couldn't remember much of what I read. HMMM? Another pesky indicator to cope with.
Large monkey wrench in future plans. Looks like moving to Tennessee is off the table. Looks like moving to a smaller house is off the table too. Aren't condo's apartments on steroids with extra fees thrown in? Do I have a say in any of this? Seriously, whatever makes life easier for Mary is fine with me. The only thing non-negotiable is; I WANT A DOG!
So, I am typing this while lying in bed with  the lap top balanced on my tummy. Mary asked if this is a difficult way to type. Not if you can remember how to do it, I said. Signing off for now. I'll be baaaack. jdc

A New Threshold - The "A" Word

I went to google to find a quote to start off this post - Inspirational Alzheimer's quotes. I scrolled through a few pages of quotes about Alzheimer's Disease, but none of them felt inspirational. Seriously? I don't think Alheimer's Disease and Inspirational quite go together. Perhaps because I'm still a bit numb. My whole body is asleep, but that prickly, tingly burning feeling is rocketing around my nervous system like a pin ball on tilt. (I think that's a mixed metaphor but you get the picture, right?)

Alzheimer's Disease.
According to Alzheimer's.net :

1 in 9 Americans over 65 has Alzheimer's. 

On Tuesday we found out that my Sweetie is the one.

Alzheimer's Disease.
Like cancer, car accidents, rape, serial killers, or a bunch of other things, something that happens to other people, not you, or me, as the case may be. Only it does.

It wasn't a great surprise. Sweetie knew there's been something off for nearly a year. But the news sent shock waves through the small white doctor's office like we were ground zero for an A bomb test.

"The CT shows diminished volume in the frontal lobes …. consistent with the clinical assessment."

I quit listening soon after the doctor mentioned the "A" word. I stared at a poster with various pictures of colored brains on the wall across the room. Which illustration corresponded to what the doctor was saying? I don't know the difference between a frontal lobe and a cerebellum so I didn't really know where to look. A mute point because tears blocked my vision. At least I had someplace to focus other than my Sweetie. I didn't want him to see my tears.

I give the doctor (nurse practitioner, Debbie) credit. Her informative, yet gentle, demeanor helped pump air back into the room. She answered questions, offered suggestions, and, most important to me, took her time. We were not hurried out so another patient could be hurried in. For this I am grateful.

My good friend and mentor, Mtr. Judi Howell, offered this suggestion after hearing the news:
Look for God each and every day. He is there holding your hand each step of the way. You will recognize Him in places you never have before." 

Trust me, it is hard to find God, or gratitude, or blessings in a big pile of poo poo. Yet, as I write this, I realize that God was there in that room with us. Debbie didn't look like Della Reese in Touched by an Angel, but I think she was an angelic force for good nonetheless.

So what do you do when you are sucker punched with information like this. Standing are in arm, wiping each other's tears on each other's shirts, Sweetie remarked this feels just like grieving. Ahh, grieving. While I don't know diddly squat about Alzheimer's Disease, I'm familiar with grieving and caregiving. I'm sure I'll fall back on the lessons I've learned. I'm just as sure I will rage, scream, cry, stomp my foot, sleep too much, eat too much, pray too little, laugh some, make mistakes, ask questions ignore the answers, and fail to wear my own f*!king oxygen mask. On the other hand I will fall back into writing because writing is my go to place for self-care. I'm ashamed to admit it takes a crisis to get my muse jolted into action.

Sweetie is okay with me sharing his, mine and our story. If we can figure out how to do it, we may co-blog. This won't be the first, or last blog written by someone with Alzheimer's Disease or a caregiver. But I'll try to keep it honest. That's why we read blogs, isn't it? To find some kind of truth in a crazy mixed up world. Not that my truth has to be your truth. If you're a fan of roller coasters, or traveling down a similar road, please join us as we make this journey.

This song is running through my head. It feels appropriate.
Hello darkness, my old friend 
I've come to talk with you again 
Because a vision softly creeping 
Left its seeds while I was sleeping 
And the vision that was planted in my brain 
Still remains 
Within the sound of silence.
(Not so) Merry ME

The Sounds of Silence, Paul Simon 1964 

Thursday, May 21, 2015

Growing Pains

I don't know why, but I feel like crying.

I must be feeling scared.
Tonight is our very informal Chat Noir Writer's Circle 2015 recital.
I'm reading a story about not being afraid.
How's that for irony.

There is no reason to be afraid.
There is no place or group of people where I feel safer.
Still, my stomach is kind of grumbly, and I'm kind of teary eyed.

Except when I'm at work, I spend a lot of time in bed.
Not always asleep, but a lot.
There's a lot of change a foot.
Guess who doesn't like change.

Yesterday, I took Bella to a new park.
At first she didn't like it cause there weren't any other kids there.
Then Leah and her brother showed up.
Leah was 6 and a half years old and wore the very same pink Frozen shirt that Bella was wearing.
That was all Bella needed.
She followed Leah around the whole park.
She watched as Leah climbed on top of the slide, stood in the notch of a tree, swung really high and jumped from the swing.
I began to notice that Bella's fear began to change to courage.
She tried sitting in a swing by herself - with me holding her on. She didn't like it when I let go, but she squealed with delight when she realized she wasn't going to fall, even if it was just for a second.
Notch in the tree, no big deal for a Frozen shirted girl.
Monkey bars - with me holding her up - fun enough to ask for more.
I don't think I take undo risks, but I do let Bella stretch her limits.

Wonder why I don't do the same for me?
Maybe I need a Frozen T-shirt to wear tonight.

Merry ME

Tuesday, May 12, 2015

I Want A Place

I get a newsletter from the Abbey of the Arts. This week's edition has rekindled thoughts of crossing new thresholds. I got off track in my writing about thresholds. I failed to see anything, anyone or anywhere new on the horizon. Could it be that even though I fail to see it, there is still change afoot?

Sweetie and I are coming closer and closer to saying "yes" to the task of selling this house and moving.
Talk about new thresholds. Do you remember playing Mother May I when you were a kid? To sell the house I grew up in and came back to is like asking, "Mother May I take a giant step into the big unknown." Only I'm not asking anyone for permission and no one is giving me a new set of "orders" like the Navy did for 20 years. This time If  when I move, it will be because the time has come to let go
of the hold the past has on me.

Decision making does not come easy for me. Even as I cried and fought most every move I ever made, I knew deep down inside that it was easier to let someone else make the decision. I guess it's easier to complain about something if I'm the follower, not the leader.

I may still change my mind a kazillion times before any definitive step is taken. But each time I get closer to where I want to be - in a place I can call home. A cabin in the woods? A motorhome traveling down Rt. 66? A retirement community? Washington? Tennessee? Georgia? Jacksonville? Or someplace I've never even dreamed of?

I want a place with less stuff and more joy.
I want a place that holds memories and no ghosts roam.
I want a place where the door is always open to new friends and old.
I want a place where my family gathers and love is all that's spoken.
I want a place where "the implements of the kitchen and barn are every bit as holy as the plate and chalice on the altar."*
I want to hear birds sing outside my window.
I want to a place to grow old without fear.
I want a room with a view where I can write letters and make bears.
I want a porch with a rocking chair.
I want a place where laughter abides.
I want to go to bed at night and lie next to my Sweetie and look forward to tomorrow and tomorrow and tomorrow.

Am I asking for too much?
Does such a place exist?
Do I have to move to find these things?
Time will tell.
Merry ME


*Hilary Lohrman
 {Abbey of the Arts} Love as a Holy Direction: Love - Pilgrimage of Resurrection through Creative Practice.




Monday, May 11, 2015

Mother's Day

It's Mother's Day.
People on FB are posting pictures and sending wishes to moms everywhere.
I'm a mom, a grandmom and great grand mom. I get what it's all about.

So why am I feeling so pissy and whiney?
Why do I want to slam my computer shut and not look at the happy Facebook images?

Maybe it has something to do with my mom not being here. With the fact that I can't remember what she smelled like or what her laugh sounded like or what it felt like to hold her hand as she crossed from this world to the next. Somehow in death my mother has become even smaller than she was in life, still lost in my father's shadow.

Reminders of my mom don't come as easily as they once did. I'm embarrassed by that. Ashamed.

Nude bathing suit,
Pikaki leis
Red hibiscus behind her ear
Red chiffon Christmas dress
dinner parties
Chicken curry with 21 condiments
Martini on the rocks
Knitting and crocheting
teaching me to sew,
silently watching me lay out quilt pieces on the living room floor,
Christmas morning
hair in pin curls
blue velveteen bathrobe
flip flops
high heeled shoes with matching handbags
hats
going to Germany to marry a man several years older than she
returning home because she changed her mind
courage
slamming kitchen cupboards
leaving home (but always coming home)
praying in church
loving each of her sons-in-law, even when her daughters couldn't love them any more
iced coffee, before Starbucks
popcorn in milk
ice cold beer in the afternoon
reading me stories before a nap
spankings
the silent treatment
Christmas trees and birthday cakes
rubbing me down with alcohol when my fever got too high
rocking babies
dancing right out of her slip
writing notes to get back into school
comparisons
grocery shopping on the first Wed. of every month and making it last
frozen milk
spaghetti in Thursday, steak on Saturday
going to the circus, when I was young and when she was old
watching golf and football
satin wedding gown
navy blue tank suit
ironing table linens
looking out a window
sipping brandy
Sunday morning pancakes
cast iron frying pan
folding the laundry - not letting it sit in the dryer
folding Kleenex around her finger before she went to sleep
never taking off her wedding ring
watching her put on lipstick
crystal star earrings, gold beads, silver charm bracelets
whistling with canaries, listening to Eddie Arnold, singing the Navy Hymn

I don't know for sure but I think my mother gave up a lot of herself to be a wife and mother. That's what women of her generation did. I didn't get to ask her the questions about things I'd love to know. I miss not knowing who she was inside, what her dreams had been, did they come true, did she have regrets, what would she do differently, what brought her joy, did she cry into her pillow at night like I do.

I held my mother's hand until she stopped breathing. She was there for me when I came into this world.  I was there when she left it. Still, I regret not staying with her after she passed, like I did with my father, tenderly washing and dressing her thin body. I left her in that hospital room, alone. Was she rolled down the hall with a sheet over her head and a tag on her toe? I wish I could have a do over. I wish I could ask her how she lived in this crazy world and what it's like in heaven.

After dinner tonight John and Maizey and I were joined on our evening walk by Ashley and Ryan and Eleyiana. When I walk I like to pick up the pace rather than diddle saddle. As we neared the pond my legs felt like they wanted to move faster. But I was holding Gracie's hand. A tired three year old, with her clogs on the wrong feet can't walk very fast.  Slow down, I heard from somewhere beyond the croaking frogs. Don't go so fast. This is a moment that will never come again. Savor it so you'll have no regrets.

Perhaps right there by the same pond that I've passed so many times before my mother whispered in my ear the only thing I really needed to know. May it be so.

Merry ME