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.

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 affectedhttp://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

Ode to Serendipity. Gratitude Experiment: Day 71

Today I received one of those unexpected clues that all is right in the universe and that I am exactly where I am meant to be.

Every have one of those?  They are great moments.  And the more aware you become of them, the more you notice these clues.

Backstory:  I’m jealous of other people’s friendly mailmen.  Or maybe they are just always friendly in the movies.  But I know my parents have a super friendly mailman who they have had for years and they actually know all about him and his family.

My regular mailman, on the other hand, is not so much  friendly.  He is not a ‘waver’, he doesn’t’ really ever say hello and he doesn’t smile.  I can’t figure out if he’s sad or just shy.

Or maybe it’s just me.  He does seem somewhat petrified of me for some reason.  Perhaps it’s because he’s terrified by my two maniac dogs who go crazy when the doorbell rings.  Or he just really doesn’t like people anywhere near his personal space bubble.

For example, when he comes to the door with a package and has to ring the bell (I picture him wincing as he reaches for my bell), I usually open the door and come out (so I can close the door behind me and leave the crazy dogs inside). This is when his eyes open wide and he takes several big steps back very quickly, like I am going to attack him or kiss him or something.  It is the oddest thing and he does it every time. I swear I am not abnormally large, fast or loud, or even that scary looking, and I don’t go to the door if I am, in fact, scary looking.  I just can’t figure it out.

So it’s always a treat when we have our substitute mailman who covers our route when our guy is not working.  Substitute mailman  is very friendly and actually speaks and smiles.  And he doesn’t  seem afraid of me, which is a plus, and much better for my ego.  But I don’t get to see him that often.

Okay, I know what you’re thinking… Geez, this chick really doesn’t  get out enough —  the mailman seems to be the highlight of her day.  Explanation:  I work out of my house and mainly talk to my clients through email.  So, on many days, the mail delivery really is the highlight and the main opportunity for me to see daylight, hoping that I don’t melt like a vampire.  Anyway, bear with me.

Today, substitute mailman rings the doorbell.  I answer and as soon as I realize that it is friendly substitute mailman, he says “Hi, how is your Mom doing?”  I paused for a moment trying to figure out how he would even know that I have a Mom, much less that she is someone who people routinely ask me about.

I looked at him quizzically and said “fine … why do you ask?”  He explained to me that he read my letter to the editor about Alzheimer’s that was published in the newspaper over a month ago.  He recognized my name in the paper and that I was on his route that he covered for on some days.  He explained  how he remembered which house I was in and about my Mom, because his dad has Alzheimer’s too. (Note:  I do NOT  live in a small town.  This is not a regular occurrence)

We had a very nice conversation about Alzheimer’s and our parents. As I watched him walk away, I thought about how I’ve never said more than hello to him before, but he was sweet enough to a) notice the letter in the paper and actually read it, b) recognize my name, c) remember which house I was in and d)make an effort to come to the door and hand me my mail so that he could ask me about my Mom.  I sort of tear up just writing about it and the thought of it makes my heart swell a bit.

So this is why I am grateful today.  I am thankful to have received what I interpret as a sign that all is right in the universe and that I am exactly where I am supposed to be, despite how often I sometimes question the universe and my role within it.

And because my substitute mailman made my day.

When was the last time you received a clue from the universe that all is right and exactly as it is meant to be – also known as God’s winks by one book that I’ve seen, and as moments of serendipity?

For real. Gratitude Experiment: Day 40

 

Whew. I am wiped.  What a weekend.  Wonderful time with my dad, stepmom and niece in town. One of the best weekends I can remember in a while.  I am so grateful that they all battled the craziness of the airports to come for the weekend.  Truly thankful.

But I do feel almost guilty for how heavy my last post was.  There’s that subconscious Catholic guilt again. But I just had to get all that out there, and it helped.  Thanks for muddling through all this self-discovery with me.  It’s way cheaper than therapy.  So I owe you.

September 22 is always a weird day, not only because my sister died on that day, but also because it is my Mother’s birthday.  For real. Yes, I know.  That is messed up with a capital M. In a big way.  Don’t even get me started on that.

At any rate, my out-of- town company family left this afternoon and then a few hours later, my mom and stepdad came for dinner to celebrate my mother’s birthday (a day late but trust me, she’s not counting — sorry that was awful).  I could tell she thought the whole cake and presents thing was fun, but she really had no clue why we were all singing to her. She was very puzzled (Alzheimer’s has a tendency to do that). And when it was time to leave, she went to the laundry room.  In total, she said about five or six words tonight. But she faked it pretty well.  Glad she can still pull it off.

For years, my sister and I always co-hosted dinner for my mom on her birthday.  We would flip a coin as to who would host and then sort of whine and complain all the while because it was always a little bit of an awkward night for reasons hard to explain.  But none of those nights hold a candle to the out of body experiences I have like tonight with my mom.  It’s like I’m watching a movie of someone else’s life in partially slow motion, and with German subtitles that I don’t understand.

But anyway, back to the gratitude which has really affected everything in my life, for real.  I am grateful for my family that visited and the wonderful time we had.  And that dinner with my mom went so well,  and that she seemed genuinely happy.  Thanks for reading.

 

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.