Tag Archives: loss

What do you hope someone knows? Tell them.

templife

This beautiful moon presented itself to me from my driveway last week.

MacGyver lost his dad a week ago very suddenly.  He was only 66 years old.  We are still processing the shock of it all and our hearts are swollen with sorrow.

One of my best friends lost her dad the very same week.  And I heard two stories just yesterday of people who lost their young fathers suddenly.

I lost my sister when she was 36, my mentor when he was only 57 and one of my best friends when she was only 32.

I’m always saying that life is short but even I often  lose sight of just how fleeting and temporary it can be. We’re so lucky to be here right now and to have those in our lives right now.

One of the blogs I follow had a post recently that stressed the importance of focusing on the wonderful in those in our lives and not missing chances to tell people about the things in them that we appreciate.

I think MacGyver knows how much I appreciate, adore and respect him because I tell him constantly.  But I hope he knows I mean it with every ounce of my heart.

I hope my kids know the unmeasurable amount of love I have for them and how very proud I am of the young men that they are, even though we frustrate each other so often.  And how my heart breaks for them when they struggle,

I hope my Dad knows how wicked smart I think he is and how much his drive and determination inspire me. And I hope he knows how much I appreciate all he has done for me and taught me and that I wish I still lived down the street. I hope my Stepmom knows how much I appreciate that she is in my life and how much she has taught me through her grace and loving heart.

I hope my Stepdad knows how much I love and appreciate him and the way he has stood by my Mom.  And I hope that my Mom knows, or knew when she could, how much I appreciate all the sacrifices she made for me, all the love that she gave me and all the things that she taught me which helped make me who I am.

I hope my friends know how much I appreciate them and their thoughtfulness, support and patience with me despite my myriad of idiosyncrasies.  How much I love to hear their voices or read texts or notes from them, and to learn from them and laugh with them until my face hurts.

I hope my oldest niece knows how much I treasure our relationship and that she realizes how wonderful I think she is.  I hope my nephews know how impressed I am with the young men they have become and how proud of them that I am.  And that my young nieces know how much I love them and look forward to watching them become young women.

I hope my cousins know how much I appreciate their efforts to stay connected and how happy I am to be part of their family tree.

I hope my Mother-in-law knows how much I appreciate how she raised such a wonderful man.  And that I appreciate her and love her.  And that my sister-in-law knows how much I love and care about her and wish we lived closer.

I know that my sister knows how much I miss her and keep her in my heart every day because I can feel her with me.  For that I am truly grateful.

And I hope that my father-in-law, who I called Big D, knew how much I loved and admired him.  How much I learned from him … not only about how to hang sheet rock or tile a bathroom at record speeds, but more importantly about keeping a positive mental attitude and always being willing to roll up his sleeves and give a helping hand to anyone who needed it.  I wish I had told him all that and more.  And I hope that he knew it in his heart.  I think he did.

What do you hope someone knows?  Tell them.

On mortality.

chinese proverb

A high school friend of mine died yesterday.  He was 43. Cancer won the battle with his body.

We didn’t stay in touch really other than Facebook and barely at that. And we talked at our last reunion.

But I can see his face.  And I can’t quit thinking about him, his family, and our own mortality.

He was one of the class hunks in high school, with a heart of gold. He will be missed by many.

I see death as a reminder to live, and to do so with honesty, intention and abandon that is even reckless, at least a few times.

How do you see it?

Photo from http://shop.holstee.com/

Photo from http://shop.holstee.com/.
This is framed on my kitchen wall.

Crossing lines.

colorfulcoloradoHer eyes watch me blankly as I turn each page and she nods her head occasionally as I narrate  — like she somehow knows that nodding is the expected response.  But the faraway look in her eyes tells me she doesn’t know what I’m narrating for her or who I am.

Little Red Riding Hood was the queen of scrapbook and photo album organization, and for that I am truly grateful.  I enjoy finding new photos that I’ve never seen with her on my weekly Wednesday visits at her house.  Her walking has become unsteady, so Wednesdays I now go to her. She watches curiously as I snap a photo or two with my phone.

I continue to try to spark something in her eyes with old photos like I was able to it seems like just months ago. But Alzheimer’s has now almost completely robbed us of those rare moments of connection, stealing so much more these last few months.

colorfulcolo

Many of the photos and mementos we go through page by page bring back such a rush of memories and I would love to talk to her about those moments and scenes from our lives.  Or to my sister. There are so many photos of the three of us.

It’s these moments when I can feel my heart getting squeezed by something deep within me and wrapped in blanket of bittersweet loss.  That’s when I realize I’m holding my breath and that I need to put the albums away until next time.

I remind myself to breathe as I place the albums back on the dusty shelf and shake off the sad like my dog shakes the water off  her back after a bath.

This old photo of my grandparents brought a smile to my face as I remembered taking this same shot of my boys as we crossed the state line on the day we moved to Colorado when my boys were so young just nine short years ago.   I never knew this grandfather but my youngest son carries his name — both of them in the right of these pictures. Who knows, maybe my Mom, little Miss Historian, took the picture of my grandparents.

Life is one transition after another in so many ways.  Some big, some small, some full of joy and some full of sadness, and many a little of both.  The challenge is knowing how to embrace each transition and carry through what we learn to the next one. And to do it with grace.

Unfolding Cocoon

fountain muse

Unfolding Cocoon

Fresh start, new beginnings, rebirth,

Physical, mental, external.

Tuning the body,

Clearing the mind,

Prioritizing the other.

Focusing on peace and clarity,

As the cocoon unfolds, little by little.

Fresh start, new beginnings, rebirth.

 

And that’s my shot at today’s WordPress Daily Challenge on the theme of Starting Over.

What does starting over mean to you?

Twilight zone turned school zone.

irony

As I say often, “You learn something new everyday…” (And as many who know me hear me say even more often, “Every day’s a damn school day.”)

I now better understand the impact that certain infections can have on the elderly and on those with dementia.  They can actually cause delirium.

And I now know that 30% to 40% of elderly patients with serious infection don’t exhibit the usual signs of fever due the inability of the immune system to mount a response to infection due to the effects of aging (or in Little Red Riding Hood’s case – Alzheimer’s).  (I felt like Velma in a Scooby Doo mystery trying to figure out what was causing her further and furious decline.)  If you already have Alzheimer’s, infections can put you into a mental tailspin.  This was our week.

Fortunately, after copious amounts of heavy duty antibiotics and eye rolling, Mom was actually able to come back home this afternoon.  She smiled at me more today and said many more words to me today than she has in the last few weeks.  I even got some bona-fide Mom to daughter smiles which tickled me with delight.

We still will assess where we are with her doctor, but it appears that we have bought a little time for her, avoided the cuckoo’s nest/twilight zone for a bit longer and become better educated in the process.

I also had the privilege of doing a Yoga class today (hallelujah) geared toward technique and theory, which was fabulous.  I also got to wear my awesome new yoga pants. And I got to take a lot of deep breaths, which were welcomed.yoga pants

Oh, and MacGyver discovered a new Chardonnay for me named Irony which seems quite fitting. And it is quite good.  MacGyver makes a damn fine Sommelier.  Which makes me a damn lucky sidekick.

Overall it was a day of education and progress which is ALWAYS a good thing.

Thanks so much for your support on this journey!

What’s the most ironic wine you’ve ever enjoyed?

Flying over the nest.

cuckoo

“I mean—hell, I been surprised how sane you guys all are. As near as I can tell you’re not any crazier than the average asshole on the street…”  

(from Nicholson’s character in One Flew Over the Cuckoo’s Nest)

I think the universe intended for me to go to that intense yoga class that resulted in a huge release early in the week to prepare me for what was coming.  I honestly do.

Little Red Riding Hood (my Mom with Alzheimer’s) had to go to the hospital yesterday via ambulance because we couldn’t get her to walk or get up and because she doesn’t really communicate, we couldn’t figure out what was wrong.

She is still in the hospital and depending on how she recovers (apparently certain infections can make dementia worse.  Who knew?), she may or may not be able to go home since she seems to have advanced to the next stage.  Either way, the next shoe is starting to drop and I have been in full gear researching facilities and options. (These are times when I miss my sister the most.)

Hospital visits were beyond bizarre for various reasons, but mainly because 1) hospitals in Denver were full due to the flu and we were diverted to a less full hospital which was still quite full and 2) she is in a room where they put 4 people who need 24/7 “sitters” (for people who don’t understand what is going on and might try to get up and then fall).

It was like I was in a strange movie that was so awful it was almost funny.  I kept waiting to hear Jack Nicholson’s voice.

Here are some highlights:

-One of Mom’s roommates had his own sitter right by his bed at all times which made me uneasy.  He was listening to Jimmy Hendrix music and blurting out aggressive sounding phrases.  I swear to you I thought he was going to pull out a shank from under his mattress.   And he sort of had the Jack Nicholson look going on.

-Another roommate kept asking for a beer and pointing to what he thought was a beer Stein hanging up on the wall (it was actually a piece of medical equipment that did look like a Stein) and wanted us all to see it. He was the cutest and sweetest little man I’ve ever seen.  I wanted to go buy him a six pack and make his day.

-Two of the Certified Nurse Assistants (the sitters) were absolutely darling.  They have hearts of gold and I wanted to adopt them. One named Flora from the Philippines told me all about her family’s plantation in the Philippines where they grow rice.  She said if someone made $750 a month in the Philippines they would be so rich they could have five maids.

-Another of the sitters I’m guessing was from South America and was determined to find something that my Mother would eat.  We finally landed on chocolate cake and Pepsi once I got there today and shared my mother’s strange eating preferences. Worked like a charm.  Some things are never forgotten.  She also told me I have my mother’s nose and she bet my Mom was quite pretty when she was younger.  She was right.  I told her she was a beauty queen in high school.

-The unfriendly nurse (who was clearly put-out with any question I asked) was seriously channeling Nurse Ratched.

-Another one of Little Red Riding Hood’s roommates kept asking for cottage cheese over and over and seemed sad. He had a huge scar across his head.  I wanted to give him a hug but he was on the side of the room by the guy I was worried had a shank under the mattress.  This roommate’s mother came and visited him and my heart ached for her.

-There were four TVs going at the same time, plus the Jimmy Hendrix music, plus the beer and cottage cheese requests and medical chatter.  Enough uncoordinated noise to make an undiagnosed ADD person with sensitive hearing lose it. but I didn’t.

-Little Red Riding Hood has not lost her ability to sarcastically roll her eyes and did so every time a room mate blurted something out. This cracked me up.  Apparently she thought the rest of the group was crazy, not her.  Again, some things never change.

-She petted and squeezed the cute little beanie baby dog nonstop from the second I brought it in from the gift shop.  This made me happy because it made her happy.dog

-I’m damn sure figuring out a way to go to yoga tomorrow.

Thanks as always for reading…  Hug or call whatever family you have this weekend and tell them you love or appreciate them — even if they drive  you nuts.

The Good News. The Bad News. And the Reality Check that’s Needed.

Below is a post that I have re-posted from my new Alzheimer’s blog from yesterday: http://www.laughingatalzheimers.com.

You’ll see some of my past posts from Life On Wry that are related to my Mom and our journey with Alzheimer’s there for a bit as I get this new blog up to speed.  But don’t worry, LifeOnWry isn’t going anywhere!  As always, thanks for being on this journey called life with me!

alzheimer's statistic

Good News.

On several news stations yesterday I heard about the latest government report revealing that cancer death incidents have fallen in the United States by an average of 1.8 percent in men and 1.4 percent in women.  These percentages don’t sound dramatic, until you consider that the numbers didn’t start even falling until after the early 1990s.

Further, scientists report that the incidence of cancer and subsequent deaths could be further reduced if all those with New Year’s resolutions to lose weight, eat healthier, exercise and quit smoking would stick to their plans.

There is still much to be done to research, prevent and combat Cancer, the second most common cause of death in the US, but the fact that these numbers are decreasing – rather than increasing – is good news.

Added to that is the fact that the 5-year relative survival rate for all cancers diagnosed between 2001 and 2007 is 67%, up from 49% in 1975-1977. The improvement in survival reflects both progress in diagnosing certain cancers at an earlier stage and improvements in treatment, according to a 2012 Cancer Facts & Figures report.  In other words, research.

Bad News.

Now for the bad news. Alzheimer’s disease (AD) is on the rise throughout the world.  And there is still no known cure or way to prevent it, no remissions.  In fact, it is always fatal, causing brain changes that eventually impair an individual’s ability to carry out such basic bodily functions as walking and eventually swallowing.

According to a 2012 Alzheimer’s disease Facts & Figures report, about 5.4 million Americans now have AD. By 2050, more than 15 million Americans could be living with the disease, unless scientists develop new approaches to prevent or cure it.

In fact, every 68 seconds, someone in America develops Alzheimer’s. By mid-century, someone in America will develop the disease every 33 seconds. It is estimated that nearly 500,000 new cases of AD will be diagnosed this year alone.

According to the Alzheimer’s Association, AD is the sixth leading cause of death in the U.S. and the fifth leading cause of death in Americans over age 65 years. And although the proportions of deaths due to other major causes of death have decreased in the last several years, the proportion due to AD has risen significantly.

Researchers have long noted that funding for Alzheimer’s research lags significantly compared to funding for other major ailments. According to University of Mississippi Medical Center, the $450 million allocated by the National Institutes of Health (NIH) for Alzheimer’s is equivalent to less than 15% of the research funding for HIV/AIDS, less than 11% of funding for cardiovascular disease research, and less than 8% of funding for cancer research.

And for every $28,000 spent on Alzheimer’s patient care, only $100 is spent on research.  In fact, the government funds more nutrition research than it does Alzheimer’s research.

Reality Check Needed.

Through exciting research initiatives, scientists continue to make headway in understanding this devastating disease. They believe we are getting close and even at a tipping point.  We just need a commitment from the federal government to fund the level of research necessary to tip the scales on a disease with these startling numbers staring us in the face.

And we’re getting there. In January of 2011, the National Alzheimer’s Project Act (NAPA) was signed into law by President Obama. According to the Alzheimer’s Association, The National Alzheimer’s Project Act (NAPA) will create a coordinated national plan to overcome the Alzheimer’s crisis and will ensure the coordination and evaluation of all national efforts in Alzheimer’s research, clinical care, institutional, and home- and community-based programs and their outcomes.

But that’s just the beginning. Because there are no survivors of this disease, and those affected directly are largely unable to advocate for themselves and for the need for more research (like many AIDS and Cancer survivors are able to do), we must speak out about the need to federally prioritize the impending Alzheimer’s epidemic.

Members of the public — not just medical and association professionals — need to speak up and take action, to contact their representatives in Congress and become advocates through the Alzheimer’s Association.  To defend helpless Alzheimer’s victims, much like we defend the voiceless for other causes in our society.

The time is now to take action.

Visit the Alzheimer’s Association’s  advocacy pages for a simple way speak up for those affected: http://www.kintera.org/siteapps/advocacy/ActionItem.aspx?c=mmKXLbP8E&b=7516993&auid=8520366

The Alzheimer’s Association — and for Coloradans – it’s the Alzheimer’s Association of Colorado — is the best place for families to go to learn about programs and services available to those on the Alzheimer’s journey, as well as about opportunities to participate in local research through TrialMatch.

Believe me, you have no idea how awesome this organization is until you’re faced with this disease and they help you breathe easier.

alz.org/co | 800 272 3900 helpline 24/7

White Christmas Dreams and Santa’s list. Damn that Christmas music. (Grasping for Gratitude)

Christmas tree

I know better.  I really do.  What kind of holiday high was I on to think that turning on old holiday music while I decorated my tree during a Little Red Riding hood visit was a good idea?

Being a bit of a sentimental sap already (especially with old tunes), holiday music has a way of making me miss ‘what was’ more than any other kind of music.  Thoughts of my Mom and sister and I decorating the tree while the Christmas music blared into our fancy room with green carpet and yellow velvet love seats, and all of my Mom’s plants all around the room.

I would get so upset if they started to hang one single ornament or place one strand of silver icicle tinsel garland before I was there with them.  They knew what a younger kid complex I had, so they were very patient with me.  We would get the tree decorated perfectly, just in time for our cat Rascal to knock the whole thing over during the night.

So while my Mom (Little Red Riding Hood) was here today for her Wednesday visit, I thought some holiday music might put a little sparkle back in her eyes while I worked on my Christmas tree so the boys could decorate it later.  Sometimes little things like this can bring her back for a moment. But sometimes reaching for those random lucid moments can be downright exhausting.

I’m really not sure if she even  knew who I was today.  She barely spoke a word and her Alzheimer’s seems to have progressed to a new level. She can’t really dress herself and she seems to have little energy.  I can’t really be sure if she still thinks I even look familiar.  She hasn’t known our names for about two years now.

I kept asking her if the new garland looked okay on the tree and if she liked it.  Not even a smile — which is usually the saving grace of these encounters.  She just looked at me like a was a complete stranger yammering at her and she continued to pick up tree needles from my floor.

As I adjusted my tree ribbon and listened to Bing Crosby drone on about his White Christmas dreams and someone sing about Santa coming to town and checking that list twice, a few tears streamed down my face in slow motion.This isn’t going to get any better and I just hope it doesn’t drag out forever, for everyone’s sake.  And I feel guilty for thinking that.  Nobody gets better with this disease.  They just run out of life.

I tried not to let her see my tears, even though I really don’t think she could notice.   I wished I could have called my sister to complain, whine or speculate about what’s next on this dim horizon.  But I haven’t been able to do that for 13 years. She left me here to figure all this out, even though I know she didn’t mean to.

I know in my heart I have so much to be grateful for.  My health, my family, a roof over my head, my friends…..  But this morning just sucked.

So after a few songs, a few more tears, and a few more blank looks from my Mom who was still collecting dust bunnies and needles from my floor, I grabbed the remote from the table, clicked off that damn music and walked away from the tree.  My throat was tight from my pent up tears and I took a deep breath.

I noticed Mom had something in her hand.  It was a grocery list that my stepdad had written and probably thrown away. She must have had it in her pocket. It was in three pieces and she kept looking at the pieces and refolding them. She’s been a list-maker since I can remember. I grinned because some old habits really do die hard.

Who knew what was going through her head while that music played and I decorated a tall outdoor tree in the center of my living room?  Maybe running her fingers over the little pieces of that list in her hand brought her some kind of comfort that she needed.  If that’s the case, I’m certainly grateful.

Weekly Photo Challenge: Mine. Gratitude Experiment: Day 52

The theme of last week’s WordPress weekly photo challenge was Mine — where you post a picture of something that is uniquely yours.

I’m a day late, but I selected this old GE photo cube that I got from my grandmother’s house after she passed away.  When I was little I was fascinated by this cube that she always had out.  It has photos on each side and a speaker on the top, with an AM/FM radio that doesn’t work anymore.  I thought the radio part was so very cool and I loved to play with it (hmmm…possibly why it doesn’t work anymore).  This was back in the days before Shutterfly and all of the sites that let you make photo gifts.  It was far ahead of its time.

The cube has a picture of a house I lived in during my early years one side, a photo of my grandmother, her sister and two of her friends on another side, a photo of me when I was probably four years old with my cat Rascal on one side, and my favorite side has a photo of my Dad carving a pumpkin with my sister and I.

This photo cube reminds me of my grandmother in all of her leopard print and gold lamay glory.  She made flashy work like no one else could ever pull off because she had a larger-than-life attitude that influenced her every moment. She could play the piano more beautifully than I’ve ever heard anyone play.  And she had a whistle that was so magnificent and strong I can hear it now.  My dad got her whistle and I love to hear it.  She was also a complete bridge-playing bad-ass and could remember numbers like nobody’s business.  I wish I had asked her to teach me bridge.

She also had a beautiful voice unlike any other. I loved the way she said my name and the way she talked. She called my Gypsy during the summers of my college years when I changed residences often.  She loved it when her Gypsy would pull up in her driveway to say hello.  She’d always offer me “Cokie Cola” and cookies and we would sit at her ice cream table and visit while the koo koo clock on her kitchen wall tick-tocked loudly behind us.  Then at certain intervals her antique clocks in the living room would chime in a series, making their own little familiar symphony.  I can hear those chimes and smell her house now.  The aroma of little scented soaps filled the house because it seemed like she had them everywhere in sweet little china dishes.

The picture of my dad and sister and I all together is my favorite side of the cube because it has us all together in it, which I love the thought of.  Also because I love carving pumpkins and Halloween is my favorite holiday.  And as you know, I have a special relationship with pumpkins as mentioned in a previous post (https://lifeonwry.com/2012/10/04/watch-out-for-flying-pumpkins-gratitude-experiment-day-50/).  And the yellow appliances, our outfits, our haircuts and the looks on all of our faces remind me of the innocence of my youth.

This photo cube is uniquely mine and I cherish it.  It sits not far from my computer where I write this blog each day, on a shelf with other things uniquely mine and sentimental.  For all this, I am grateful.  Thanks for reading!

Grilled cheese with pickles. Gratitude Experiment: Day 39

Thirteen years ago today I woke up and started the day with my sister just a few miles away.  When I went to bed that night, I no longer had a sister a few miles away, or even many miles away.  Still seems so strange, to have someone in your life one day and taken from you the next.

It was my first day back from maternity leave after my youngest son. And my first meeting that morning.  I was getting the full-on data dump from my coworkers who had covered my clients and projects while I was on leave.  They were happy to hand them back over.

As I sat, asking questions, taking notes and trying to catch up, the call came in.  Our office manager had a serious look on her face as she walked into the conference room to tell me there was a call.  I asked if she could take a message and the slight shake of her head side to side signaled to me that something wasn’t right.  The room cleared.

My stepmom was on the line.  She told me that my sister had been in an accident and I needed to get to the hospital, now.  I don’t remember what else was said on that call but I remember the sound of her voice as the words came out and made my stomach feel sour. I can still remember the tan linen blend suit I was wearing and the black shoes that I looked down at while I was processing the words floating in the air.  I found my purse and flew out the door as my coworkers offered me a ride, worried for my worry. My thoughts raced.

When most people have a car accident, they get hurt and then they heal and go home.  I was prepared, we could handle whatever kind of injuries we needed to adjust to.  I could help her however I needed to. All this ran through my head as I drove robotically to the hospital that sunny fall morning.

But as I walked into the emergency room and was directed down a hall, I was greeted by the hospital Chaplain.  I now know that if you are ever greeted by a hospital Chaplain, you better buckle in and hold tight because you’re getting ready to hear something you don’t want to hear.

The next few hours are a blur with family members huddled in the hospital prayer room, taking turns in and out to see her.  I had to hear her injuries described to me a few times before it really sunk in.  Actually I don’t think it sunk in at all that day.  But she wasn’t leaving the hospital.  I think that’s what they were saying.  I was hoping I was understanding it all wrong.  But no, she wasn’t coming home.

I got to say goodbye to her that morning and I think she could hear me.  I really do.  No, I know she did.  The nurse in the room with me pointed to the movement on the machines tracking her vitals which were connected to the machines keeping parts of her body going.  She showed me how they changed as I spoke and told her what a wonderful sister she was.  And what a wonderful mom she was.  I told her that her daughter was going to be there any minute.  I said all of this over and over, in between sobs, as if on a loop.

Her daughter made it to the hospital, being pulled from her junior high class by her dad.  It was as if my sister was holding on until she could her daughter’s voice.  It was right after that when even those few vital signs ceased.  My niece told me she saw a bright light in the hallway outside of that hospital room.  It was her Mother.

We all went home that day with a hole in our hearts that remains today. I know she is with me, with all of us, all the time.  And I am at peace. But the hole remains.

My niece and parents are in town this weekend and we celebrated my sister by being together.

She loved grilled cheese sandwiches with pickles from Sonic. I’ll be making a stop by Sonic tomorrow for sure.

Today I am grateful for the wonderful memories I have of my sister that make me smile, for the time I had as her little sister, and for the joy she still brings us.

I’m Seeing Purple. Gratitude Experiment: Day 32

I walked in the Walk to End Alzheimer’s this morning. What a terrific feeling of hope and camaraderie to walk away with. Last year the Denver walk broke its record with 8,000 walkers.  I guarantee you it was an even bigger crowd today.

I walked with a good friend who walked in memory of her mother who she lost to Alzheimer’s three years ago.  And I walked in memory of my Aunt, who we lost to Alzheimer’s a year ago this month and in honor of her sister, my Mom, who I’m losing to Alzheimer’s a little more each day.  I drew a picture of them on a huge sign they had for people to paint memories of their loved ones.

In a sea of purple, I saw photos on the back of so many walkers’ shirts. Photos of loved ones lost to this hateful disease. The thought that so many like me are fighting this fight is both comforting and terrifying.

This disease isn’t going away anytime soon, as the numbers continue to climb.  Yet it seems like the world is in denial about this disease and how very real it is.  Perhaps it doesn’t seem as real because you don’t visit anyone in the hospital when they have this disease?  And because you never hear anyone with it describing their suffering?  Because they can’t speak for themselves.

But it is very real.  And someone new is diagnosed every 68 seconds.  And by 2050 it will be someone new every 33 seconds.

Ironically, federal funding for Alzheimer’s research pales in comparison to that for other chronic diseases. According to University of Mississippi Medical Center, the $450 million allocated by the National Institutes of Health (NIH) is equivalent to less than 15% of the research funding for HIV/AIDS, less than 11% of funding for cardiovascular disease research, and less than 8% of funding for cancer research.  And for every $28,000 spent on Alzheimer’s patient care, only $100 is spent on research.  In fact, the government funds more nutrition research than it does Alzheimer’s research.

I recently had the privilege of listening to a scientist discuss research initiatives and progress made. Scientists believe we are getting close and even at a tipping point.  We just need a commitment from the federal government to fund research.

And we’re getting there. In January of  2011, the National Alzheimer’s Project Act (NAPA) was signed into law by President Obama. According to the Alzheimer’s Association, The National Alzheimer’s Project Act (NAPA) will create a coordinated national plan to overcome the Alzheimer’s crisis and will ensure the coordination and evaluation of all national efforts in Alzheimer’s research, clinical care, institutional, and home- and community-based programs and their outcomes.

But it’s going to take much more. The public has to make it known what our federal priorities with regard to the impending Alzheimer’s epidemic should be, especially given shrinking budgets at every turn.  More people need to speak up and take action, contact their Congress representative or become advocates through the Alzheimer’s Association.  To put faces on the need. The website of the Alzheimer’s Association has advocacy pages dedicated to helping you do just that. http://www.kintera.org/siteapps/advocacy/ActionItem.aspx?c=mmKXLbP8E&b=7516993&auid=8520366  I know this is  a blatant plug for my cause, but I know with every molecule in my body that you DO NOT want to watch this happen to anyone you love.

If you’re still reading this and you’re not exhausted, I commend you.  And I appreciate you taking the time.  I’m truly grateful that you are reading this, that I went on that walk today, and that we can end this.  Let’s do it.

Why Alzheimer’s Is a Drag. Gratitude Experiment: Day 31

Even though it goes against the grain of my 100-day Gratitude Experiment, I feel the need today to write about why my Mom having Alzheimer’s is a drag.

I’m convinced that some gratitude will come to me by the time I finish writing this.  And I’m hoping these thoughts will help my readers cherish every moment they have with their loved ones.  And take nothing for granted.

My Mom having Alzheimer’s is a big fat drag because:

1. I wish I would have spent more quality time with her before she got sick.

2. I wish I had asked her if her favorite color was still yellow when she could still tell me.

3. I wish I would have paid better attention to the signs in the beginning.

4. I desperately wish for rare moments of clarity to happen when I am near.

5. I worry about her dignity.

6. Most healthcare workers have no clue how to treat a person with Alzheimer’s.  And it makes me want to help change happen.

7. She is afraid to take a bath.

8. I wish I could remember the name of that flowery lotion my grandmother used to give her every Christmas.  And I wish I had someone to ask that would know.

9. I worry about my Stepdad being sad and tired.

10. I worry about my Stepdad getting hurt and me not knowing.

11. I wonder how much of what I say she understands.

12. I wonder if I offend her by babying her.

13. I  wish I had taken better notes about my family history.

14. I wish I really knew when all this started – so hard to tell.

15. I worry about when the next shoe is going to drop.

16. I think about how she would not want to be this way.

17. I worry that she is frightened and she can’t express it.

18.  I’m scared to death it’s going to happen to me.

On the other hand, I am still able to be grateful because:  (whew, glad some gratitude came through)

1. I love it when I have what seems like a tiny a breakthrough with her.

2. I am happy when she smiles her old smile.

3.I love to be silly and make her laugh (when I use Three Stooges type humor it cracks her up).

4. I can tell she enjoys changing the bed sheets with me.  Especially if I’m silly while we’re doing it.

5. She’s still my Mom in there.

6.  I love that she said  really sweet things to me that day a year ago when I did her hair for her, when she was better able to comprehend and talk.

7. My stepdad is solid as a rock, and I love him for it.

8. I’m lucky that she lives close now so I don’t worry even more.

9. I can have these tiny moments of joy with her to always remember.

Thanks for reading.

Reason to Think. Gratitude Experiment: Day 30

Today I learned very sad news about an old school friend who lost her son to suicide this morning. He was only 16. On the outside, this handsome young man seemed to be a kid that had absolutely everything going for him. My heart aches for their family and my stomach is weak at very the thought.

Though I do not know details about events leading up to this tragic event, it makes me want to stand on my little soap box for a bit about depression.

Depression is real. It exists. It is not made-up or imagined.  Clinical anxiety and depression are neurological disorders, and are due to an imbalance of chemicals, such as serotonin, in the brain.  It cannot be wished away.

Our society as a general rule does not take depression seriously and tends to paint it with the biased brush of weakness.  This is mainly because it is misunderstood. And when people don’t understand, they can often jump to conclusions, just like in politics or anything else. But depression can happen to anyone, big or tall, male or female, old or young, weak or strong.  It can happen for a short time or it can happen for a long time. There are many hereditary factors as well as external factors that can affect the odds of someone experiencing depression.

According to MedScape.com, as many as two thirds of people with depression do not realize that they have a treatable illness and do not seek treatment. And only 50% of those diagnosed with major depression receive any kind of treatment at all.  Until it is better understood by the public and even health providers, the stigma will continue to outweigh the benefits of diagnosis and treatment.

It is important to note that depression is very common in teenagers, as well as adults. Suicide, most often a result of depression, is the third leading cause of death among people aged 15 to 24 years old and the eighth leading reported cause of death in the United States.  Male teenagers are much more often successful at suicide attempts.  According to Wikipedia, American males between the ages of 20 and 24 have a suicide rate that is seven times higher than that of women.

For teenagers, changes in behavior, friend choices, academics and attitude must be more than noticed.  They must also be addressed head-on, with professional help if needed.

I must also note that therapy is very misunderstood by society.  Participating in psychotherapy is not a sign of weakness. Actually it is quite the opposite.  It requires a willingness to dig deep into self, and to understand complex patterns of thinking. It’s for those with the type of grit necessary to turn their own heavy handed mirror inward and accept themselves, flaws and all. And as a reward, students of therapy get to grow by leaps and bounds from the knowledge gained.

Today, while I am truly saddened for my friend and her family’s great loss and the sorrowful days ahead, I am thankful for the knowledge that depression is slowly becoming more understood by our society.

A Bittersweet Solstice Approaches. Gratitude Experiment: Day 23

Bittersweet defined is a combination of both bitter and sweet – a feeling that is both happy and sad at the same time. This familiar emotion finds its way back to me each year, just as the first signs of Autumn find their way back to us all.

It’s my favorite time of year and always has been, flooding me with memories of autumns past.  The smells of damp leaves and firewood, the crisp air that fills my lungs, the glorious colors that open my eyes to nature each year, and the sound of fallen leaves underfoot.  My very favorite season.

The approaching September equinox called out to me today, as it does each year when the summer’s curtain draws to a close.  Letting me know that fall is approaching and the time for winter is near. It’s sad to see the summer end, but also sweet to see the cycle complete.

There are two equinoxes every year – one in September and one in March.  When the length of day and night is almost exactly equal all over the world, with seasons opposite on either side of the equator.

Derived from Latin, the word equinox means “equal night.” I explained this to my kids as I drove each one to school this morning, and as I do each year when the sun on the horizon nearly blinds me as if to awaken me from a summer’s sleep.

The autumn equinox happens each year, the moment the sun crosses the equator, always on September 22nd, 23rd or 24th. On any other day throughout the year, our planet tilts away or toward the sun.  But not on each equinox, when the sun shines more directly upon us than any other days of the year, as if to remind us of our smallness in the universe.

Thirteen years ago on September 22nd, just before the autumnal equinox, my sister crossed over and left this world, just as the sun crosses over the equator.  The sun was blinding her way that day, or maybe calling her toward it. It was also my mother’s birthday.

I’m really not sure what God and the universe had in mind that day, but I’m determined not to let it zap the gratitude out of me as I gear up for this month’s memories, filled each year with emotions, both happy and sad.

When I see the sun each morning so boldly reminding us of its presence near the horizon, I know it is a bittersweet reminder for me to plant the seeds of both appreciation and caution for all that is. Today I am grateful for the sun and all that she reminds me to be thankful for.