Fierce Courage

It was about a year ago that I heard that legendary women's basketball coach Pat Summitt had been diagnosed with early onset Alzheimer's Disease.  I was stunned.  Not that she had the disease, but that it had been diagnosed at such an early age - 59.  Yes, better to be diagnosed early, and to have a good support system.  But how "bad" had the symptoms been to result in what must have been a series of appointments?  I can't imagine the fear or dread the family had to go through BEFORE a diagnosis that left little room for hope.

Ah, but I made the same mistake so many of Pat's basketball opponents made early on.  I underestimated her and her team.

You see, there is a huge difference between little room for hope and no hope.  Pat knows that.  In typical Pat fashion, she grabbed hold of that diagnosis, researched the heck out of it, and started searching for its weaknesses.  AND she continued to coach for her final season.

A message from Pat

Once I got past the shock and "unfairness" of Pat's diagnosis (as if it would be fair for anyone to have the disease??), I truly admired the spirit that made her the amazing coach for 38 years at the University of Tennessee, and which had her fighting back against Alzheimer's.  Pat and her son Tyler established the Pat Summit Foundation to raise funds for Alzheimer's research and education.  One of their items available in their on-line store was a pack of rubber wristbands in orange and purple with "FIERCE COURAGE" in purple print on the orange section and Pat's signature in orange on the purple section.  Purple is the color of Alzheimer's Awareness, and Orange is the University of Tennessee color.

Since Mom had already been diagnosed with dementia (although not Alzheimer's at this point), I found all of this a little more than disturbing.  And yet, I realized the truth of Fierce Courage being necessary to live with and/or fight Alzheimer's.  I ordered a pack of the wristbands, and gave Mom several of them to share with her friends at Friendship Village.  I have not taken mine off since I received the package.

I have also been educating myself on dementia/Alzheimer's.  The Alzheimer's Association is wonderful for providing information and support for caregivers.  I could go on and on with things I learned in a 4 week series they put on (first and foremost, get the power of attorney/medical power of attorney in place BEFORE there is an emergency; see a lawyer who specializes in elder law).  Alzheimer's is just one of the forms of dementia, but it is fatal.  Eerily, the longer one lives, the higher the probability of developing Alzheimer's.  YIKES.

I also stepped up (pun sort of intended here) and participated in the 2012 Walk to End Alzheimer's.  This is the first time I'd done the fundraising/walking thing and I was a little intimidated by it.  Thankfully I have wonderful friends who supported my efforts, and Mom has wonderful friends who donated to honor her.  I was thrilled when I started with a $300 goal and had 75% of it in just a few days; of course I had to increase my goal to $500.  I wasn't sure I was going to make that one, but I did!  As of today, I've officially raised $615 (although it's really $715 since one of the donors donated to the team, not through my fundraising link).  Because of all of the supportive people, I was able to get 2 t-shirts AND made it to the Champions Club (and received a medal!!).

These are just a few of the images from the walk on the 22nd.  That's Mom with the walker and her Friendship Village backpack (we probably did the 1 mile walk with all of the meandering we did).  We were more interested in checking out the buildings since our time at the park was limited.  Carillon Park is a very nice historical park, but usually there's a fee to go through it; since the walk was at the Park, they opened the majority of the exhibits for the walkers.

These flowers are more like pinwheels, and I wish I could remember what all of the different colors represented.  The blue indicates a person with dementia, purple indicates someone lost to Alzheimer's, and orange indicates a caregiver for someone with dementia.  You could write a message on the petals with a silver Sharpie if you wanted; Mom and I brought ours home.  I'll be putting mine out in the front yard, hopefully bringing a little more awareness for Alzheimer's.

Mom had been doing so well that I was pretty surprised this Wednesday when one of the nurses from Friendship Village gave me a call; that only happens when there's a problem, so I was immediately on high alert.  Mom had another TIA (transient ischemic attack, or mini-stroke) and was having trouble communicating.  At the time there was no way to know if it was a TIA or the onset of a full-blown stroke, so we erred on the side of caution and called to have Mom transported to the hospital.  After 3 hours in the ER, bloodwork, EKG, and CT scan all came back normal, and Mom had pretty much returned to normal.  She was back in her apartment before her bedtime, which I know had to make her feel better.

In our case, a TIA is probably the best diagnosis for what Mom went through.  TIAs typically don't leave lasting effects (although there is a type of dementia that exists when the same area is consistently the site of the mini-stroke) and resolves itself pretty quickly.  It is still a bit scary.  Mom was anxious and upset when she couldn't get the words out or find the right words.  Anxiety tends to exacerbate the symptoms.  So, I spent a little bit of time trying to make Mom laugh and relax.  Shortly before she was discharged, she asked me how they diagnose dehydration; I said that I didn't think there was a single test, but a combination of pieces of information and responses to questions.  Then I asked her if she thought that was what was going on, and she said that she thought it might have been a "contributing factor."  I knew at that point that she was doing much better because she had no trouble at all coming up with the phrase.

Fierce courage.  Patients with dementia definitely need it, but so do the caretakers.  Make no mistake, dealing with dementia and Alzheimer's is a war; some days you win the battle and some days you lose ground.  But with fierce courage, Mom and I together can give this insidious disease a run for its money.  I'm holding onto that with both hands in a death grip.

If it's Tuesday, it must be . . .

It's May, and if it's Tuesday, it must be a MetroPark kind of day!  Today it was back to Englewood MetroPark where I took a different path . . . mostly down by the water.  Again I was fascinated by the shadow and light, and the reflection of the vegetation in the water.

I thought this was a snake when I first glanced at it.  I was VERY glad I hadn't screamed once I realized it was just a tree branch.  There weren't a lot of people around, but I still would have felt absolutely foolish.

I loved the contrasting colors on the wood - it reminded me of an Appaloosa horse.

There were so many interesting shapes going on with this plant that I HAD to take a few pics of it; this is the best of them.

This little guy posed for a little while, then took off.  He had heard enough of the "click, click, click" of the camera.  He probably never thought he'd be stalked by paparazzi in his own backyard!

I loved the color of this bloom, as well as the way it peeked out from all of the surrounding greenery.

  
There were a LOT of berries for the birds and squirrels!  I didn't take any so they would have plenty.

Caught this guy trying to hide from me.  I guess the squirrel network was down or he would have known he wouldn't be successful.

The path was blanketed with this plant - I tried to walk where it wasn't growing because it looked sunny and beautiful.  I didn't want to trample it.

This tree had some MAJOR texture going on.  It almost looks like rock rather than a tree trunk.

This picture only shows about 1/3 of the tree; it was huMONGous.   I tried several different angles to try to capture the enormity of it, but this turned out the best.  I couldn't get very close, which made it more difficult.

Can you find the two (yes, TWO) woodpeckers in this picture?  I'll bet Jenny @ I'd Rather Be Birding! spotted them right away.

And, ending with my favorite picture of the day, and wondering if I could pass it off as a fog enshrouded shot rather than the reflection in the water . . . regardless, I think it looks more "artsy" or brooding than a straight shot of vegetation.


It doesn't surprise me that I was fascinated with pictures using the water for reflection, because I've been doing a lot of reflecting the last couple of days.  Yesterday was not a good day with Mom, and she seemed to want to pick a fight.  I know it's not something I should take personally, but it hit me wrong at the time, and it got me really down.


It took a while, but I finally worked through it.  I have to remember that I am not responsible for Mom's mood or her happiness.  I am responsible for not intentionally irritating her, but not for how she reacts to anything.  That was further reinforced tonight at the presentation by the Alzheimer's Association.  There are times when it is necessary to redirect attention to reduce the anxiety and frustration, which are the times Mom tries to pick a fight.  She is probably still tired from the excursion on Saturday, which also intensifies her anxiety and frustration.  Since she is highly functioning, most people think Mom is pretty much her old self.  Some times she is.  Most of the time she isn't.  She's not far from it, but far enough that she knows it (deep down, even though she really doesn't want to admit it).


I'm very thankful for the staff at Friendship Village who understand what dementia does to people and how little things can have a big impact on their behavior.  I'm thankful for groups like the Alzheimer's Association that provides education on issues regarding dementia.


Mostly, I'm thankful for a God who provides a literal walk in the park as a way to clear my head and enable me to think again, not react to things.  

Reflections from behind the bars

I had an extremely different view of life this afternoon . . . from behind bars.  Those dirty cops pictured "arrested" me as soon as I got to Friendship Village for, of all things, "Excessive picture taking on campus."  This is one of their special, fun weeks to recognize the staff and residents, and the theme is "Celebrating the 20s and 30s."

Officer Chaplain (he's really the Chaplain at Friendship Village) and I playing at dueling cameras.  Neither of us are usually in photos, so it was just silliness.


I was incarcerated for 5 very long minutes, during which Mom tried to break me out!  It was tough, but I lasted the whole 5 minutes.

This is the 1936 Ford convertible they had available for the residents to take a short spin in (with the owner driving it).  Pretty spiffy looking car.

Oh, man!  I coulda had a V-8!!

That rumble seat looks mighty uncomfortable . . .

Look at the shine on that chrome bumper!  You can see the reflection of the portico on the right, and check out that shiny tailpipe, too!

There's that dirty copper again, taking in aides and nurses from Assisted Living!  

Just one of the decorations for the week to celebrate the 20s and 30s.  They will be having a barbershop quartet in to sing tomorrow, and a dance on Friday that will include lessons on how to do the Charleston, along with a Charleston contest.  I know there will also be a movie marathon one day, but I'm getting a bit fuzzy on the rest of it (there's just so much going on).


I find it a bit ironic that the method of raising funds for the Alzheimer's Association was to put people in jail.  I know some of the residents with the more severe dementia or Alzheimer's issues feel as if they're living in a jail already; they can't come and go as they please, and they don't really understand why.  It is sad to see how the disease changes people to the point where they can't (or is it won't?) enjoy life.


It took Mom a long time before she began to feel comfortable at Friendship Village, but she does seem to enjoy it for the most part now.  She has much more social interaction (even if only at meals, or in the halls) than she did when living at home.  We have stressed with Mom that she's not in a nursing home (and she isn't; Friendship Village is a retirement community.  Mom is in a section that provides meals, cleaning, laundry services, and distribution of medication; she is free to leave the campus and can participate in any of the activities, whether for Independent Living or Assisted Living).  It helps that she has her own room, surrounded by her own things from home, including the bed.  It was a painful transition for Mom to make, but I think she enjoys not having to keep up the house or make sure the lawn gets mowed or laundry is done, at least on some level.


It's been a year and a half of learning all kind of new things, many of which I wish hadn't been necessary.  But, it's also been wonderful in providing me with an opportunity to alert family and friends of some things NOT to do, as well as some things to do so they aren't playing catch up due to an emergency.  I have been blessed with wonderfully supportive friends and family, which at times has made all of the difference in the world.  


The biggest thing I've learned is that I want to age, if not slowly or easily, at least realistically.  I may have to give up some activities or not do them as often, but as long as I'm breathing, I am determined to enjoy this wonderful day God has given me.  Even if I wake up in a crabby mood, I don't have to stay in it (and I hate it when I'm out of sorts; I'd much rather be having fun).  


"Whatever your work is, do it gladly. Do it as you would do it unto the Lord and not for people."  Colossians 3:23

Looking Up

It's been an interesting day.  I had been looking forward to getting some laundry and other things done around the house, just taking my time and then reading and watching movies.  I only got the watching movies part done, and not at MY house!

I'd been up, but not ready to do much of anything other than make a couple of phone calls, and sometime before noon my niece texted me.  I knew immediately that meant she was home from school, which wasn't a good thing.  She's been having a lot of stomach pains, nausea, & vomiting.  She's been to several doctors, and is due for an upper GI on Tuesday.  But, since going off some of the meds she had been on that weren't really helping, she's been vomiting more.  That's why she was home today.  Anyway, she was hoping for some lunch, which I got and took to her.  It was not something that stayed with her for very long.

I feel badly for her because it's been going on for several months, and none of the doctors seem to be able to pinpoint exactly what the problem is.  At almost 15, that's a tough age to be going through all of this (not that there's a good or easy age to go through it).  Regardless, it was great to be able to spend most of the day with her.

I took these pictures of the sky and clouds just outside my sister's and her family's house.  I loved the contrast of the darker clouds with the fluffy white clouds, as well as the blue sky and the green leaves of the trees.


I didn't realize the pics would also be so representative of the day!


When I arrived, my niece was doing OK.  Not great, but not horrible, either.  She ate her chicken sandwich and baked potato, and for a while, seemed to be doing better.  Thought good thoughts too soon, I guess.  I took some Sprite and took the fizziness out of it and had her sip that, which seemed to stay down the longest.


We did manage to watch two movies, one of which always makes me cry.  I love it, and I hate it.  She was watching "She's the Man" when I arrived, and it was kind of a cute movie (Amanda Bynes is adorable in almost everything she does though).  I was glad I got to see it, and that we could watch it together.  Next up was the tearjerker, "The Notebook."  


It's one thing to watch that movie from an objective standpoint, but once you know someone with any form of dementia (Alzheimer's is just one form of dementia, but the most widely diagnosed form), it takes on a whole new layer of meaning.


I'm sure by now you're wondering how in the world clouds, sky, and trees are representative of puking, crying, and dementia.  Well, the fluffy clouds and blue sky remind me of when things are going well; there's no sign of "threatening" weather or troubles ahead, just days where our plans move along and life cooperates with us.  The dark clouds remind me of when I'm waiting for the other shoe to drop; I know something not so good is going to be happening, I just don't know when or how severe it will be.  The leaves and the trees remind me that we survive those "dead" periods when everything seems to be going wrong or at least not much is going right.  Once we are firmly rooted in God, the storms, disasters, diseases, and emotional turmoil are survivable.  They still aren't easy to deal with, but we know who is ultimately in control, and know it will be OK.


I've discovered that looking up is almost always a positive move.

Happy Accidents

It's been a strange day so far, and I'm feeling a little down in the dumps.  Don't like this feeling, so I thought I'd share some of my photos that surprised the heck out of me.

Eastwood Metro Park
I was just snappin' away, and didn't realize
I'd gotten the curvature quite so nicely.

Charleston Falls
I thought the shadow was interesting as I started down the steps;
I hadn't recognized how geometric it all was until after viewing
hours later!

Loved the texture of this tree bark, but wasn't sure it would
photograph well.  It's odd, but I like it!

I think this is a dogwood blossom at a friend's house.  I was
experimenting when I took it, and got as close as I could.
When I looked at it on the LCD screen, I wasn't crazy about
it, but when I saw it on the computer screen, seemed as if I
could almost feel the texture of the petals.

I'm not a fan of bees, but on a whim, decided to see what I
got when clicking away at a butterfly bush.   I was amazed at
the detail, including the body segments of the bee.

I'd never seen a woodpecker in the yard before, but this one
had visited the suet feeder.  I was fortunate enough to be
outside at the time AND have my camera w/ me.  Although I
wish this was closer, I was very pleased that I was able
to catch the woodpecker at all.

This was taken on my cell phone just the other day as I
started through the car wash.  Loved the colors, and decided
to see how a picture might turn out.  VERY glad I did!

Another car wash shot w/ the cell phone.  I like the soap
bubbles added texture w/ the swirl of blue.

I must say, I do feel better now.  I sometimes need a reminder of the happy accidents or unexpected outcomes.  In every instance when I shot the above photos, I was experimenting with either a new camera, a new viewpoint, a new setting, or a new location.  I had no real idea of potential results, but tried anyway (yeah, I gave it a shot to cite the obvious pun).  I wish ALL of my attempts resulted in pictures I was happy with, but of course, failure is part of how we get to success.  


I'm learning to be a part time caretaker for my mother, who is in an assisted living facility.  She has mild dementia, and can do much for herself, but ended up in assisted living because she would forget to take her medication, eat, or drink.  There is absolutely no way we could live together, but it was obvious Mom needed to be where someone would make sure she got her meds and ate.  Many days, everything is fine, and we laugh a lot.  Other days, like today, it's not, and I feel like a failure as a daughter and human being.


That's why I like to look at some of my happy accident pictures.  Not just because I like them, but also because I remember the pics before and after them that didn't turn out so well.  Not all of them turned out the way I wanted; some turned out far better than I could have dreamed.  Point is, I tried until I got something I liked, or was fortunate enough to catch on the first try.  I'm still learning on the caretaker part, and I'm bound to mess up.  I just need to suck it up and keep trying until I get something I like, in addition to those beautiful moments that I get right the first time.