Merry Christmas

I must begin by wishing all my readers, all those who are experiencing difficult times, and especially those of you who are spending their first Christmas without their dear loved one, a MerryChristmas.  Jerry always held his candle high and it is missed.  This is a time when the silent night, Christmas Eve, becomes even more silent.  This is the night when the world stands still.  My heart is there with you.  I truly love you.

Christmas.  It's the most celebrated time of the year....and the most stressful!  Seriously, Christmas seems to be so intense.  So much of it is all the anticipation of the "perfect" Christmas.  So many emotions are flying with busy-ness, disappointments, fussing, thrills, excitement, loneliness, missing our loved ones, memories...the list goes on and on.  Why do we all get so crazy?

Along with Christmas is my son's birthday.  Today was crazy.  He was suppose to fly in for his birthday.  Hoping for standby, his flights were full and he didn't make it.  It was a huge disappointment.  Then it got worse. All of a sudden, the much anticipated night at the Angus Barn Steak house went  to "H in a hand basket".  The babysitters, one by one, called in sick, one of the kids came down with a fever, everyone was in a "poopie" mood.   I said, "COME ON GUYS!  Scrap the POOPS and lets get it together!  We're still going to have fun tonight!"

Two days ago,  I took my sweet 5 year old grandson to see Jerry.  I thought it was terrible.  My beautiful Jerry was as stiff as a board.  His limbs would not move.  When we walked into the room, I think he noticed us.  He slightly moved forward from his seated position but then froze.  I motioned to McCauley, "let's go over and give him a Christmas hug",  which we did.  There was no place for all of us to sit, so we walked Jerry down to his room so that all three of us could sit on his bed.  Once we got him positioned on the bed, he was still stiff.  McCauley said, "he is just staring."  It was very awkward.  Jerry had very little response, but I could tell he was wanting to touch McCauley.   I encouraged McCauley to give Papa J a hug, but I think he didn't quite know how to position himself.  So, we just started singing.  We sang a few Christmas songs and hymns.  McCauley, in his innocent little way, did sign language to Silent NIght.  How sweet was that!!!!!  Anyway, I felt that the entire visit was so uneventful.  Pitiful.  I came away discouraged.  I didn't know what this little 5 year old grandson thought of the whole thing.  But then I heard his response, "Papa's hurt."  OH!  What a sensitive little boy!  I never thought of it that way.  AND.....what a gift to give a little boy....a reason to love someone right where they are...to show compassion.  

So today, while at church, I contemplated the reason for the season.  (such a silly little cliche).  But it's true!  We all have such challenges.  Families.  No families.  Loss of loved ones, critical illnesses, ...no one escapes.  We all get exhausted by whatever struggles we are going through.  We all have lessons to learn. On this silent night..I am counting my blessings and the greatest blessing is that extraordinary birth long ago...a Savior to the world! I love this Jesus who came to sacrifice his life to demonstrate love.  I love this Jesus who has shown us grace...that everything doesn't have to be perfect. I  love this Jesus who keeps me grounded and who gives me strength to see past the "circumstances" of my life.  I love this Jesus who loves Jerry so much and has prepared a place for him.  What indescribable love!  It's over and above all else.

SO...with that said....my prayers are with those who are struggling.  I pray for comfort and the peace of God that passes all understanding to be present with you. To all of you.....

MERRY MERRY CHRISTMAS!  MERRY MERRY CHRISTMAS!  LET THE BELLS RING!  wherever you are.

The Holidays

Ok.  I've been reluctant to write about the holidays.  I wish I had written about Thanksgiving.  I was so overwhelmed and thankful during Thanksgiving.  It was all about counting your blessings.  Seriously, if we get out of our "ME" syndrome, and be honest, we have so much to be thankful for.  I mean....We wake up each morning and we are breathing aren't we?!!!  There is nothing more beautiful than a family who loves each other, no matter what, and enjoys being together.  I know that when the rubber meets the road, my children will be there....that is such an overwhelming blessing.

It's Christmas now.  The first Christmas, after Jerry went into his new "home", I didn't feel like being all "tra la, tra la."  All I wanted to do was be with Jerry.  So I told my kids that I couldn't pretend to be happy. I didn't want to go to the candle light service and smile and wish everyone a Merry Christmas.  I wasn't  Merry!  So,  I spent the time with Jerry, in the home, chatting with the nursing staff and just hanging around until late on Christmas Eve passing out cookies to the residents and seeing them smile.  Then I drove up to Raleigh to wake up to Santa Claus.  That's was ok, wasn't it?

Last year, the second year of Jerry not being with us, I had acclimated myself to the situation.  Jerry was unaware of the actual day of Christmas.  So I spent a lot of the time at his home, making wreaths with the residents, singing Christmas songs, then happily went to celebrate Christmas with my children and grandchildren.  I was able to compartmentalized things.  It worked. It was a happy time.

This year, the third Christmas, it's not quite as easy.  I just can't get INTO Christmas.  I hate that!  The last thing I want to do is be a "kill joy", an Ebenezer Scrooge!  I will admit that the emotions are trying to get the best of me, but I'm trying.  Jerry is still eating enough to stay alive and it has just about broken my heart.  I mean, "what are you doing GOD?  Why is this suffering lasting so long"?

A friend reminded me  today that "Jerry is not suffering."  I suppose that is true, however, compared to what lies ahead in eternity, he IS suffering.  This poor man, who remains calm and winsome, still would not want to be living this way. 

So, how do we caregivers survive this suffering?  Honestly, there is no sugarcoating it.  This is suffering to watch your loved one disappear before your eyes, not know who you are, and be able to care for himself.  This is suffering in sadness that lasts so long.  BUT, dear ones, take heart.  There is no one on this earth who will go without some kind of suffering. There is no escaping it!

So for me...the best way for me to cope with the suffering is to help someone else with their suffering.  It takes me out of my own .....and into a place where I can help someone else.  

Dedicated to Shannon, who has defeated breast cancer.!

This week, I've been painting healing ceiling tiles. This is an organization the installs artwork into the ceilings of cancer treatment centers.  Sounds like such a little thing.  But, in some small way, hopefully, it brings a spark of joy... a  brief moment to bring a smile that takes the patient away from their battle with cancer..to a happy place. A happy place that brings them new energy to continue the fight.  Each tile is dedicated to a loved one who is undergoing their battle with cancer.

With all that said....It is a good season.  A season to give.  The mindset of giving brings happiness to even the most difficult days. It's the Christmas Season.  Merry Christmas!

Dedicated to my friend, Shawn, who has fought like a crazy lady, breast cancer...and is WINNING like a trojan!

The Spirit Runs Deep - an Alzheimer Journey by Sue Scoggins

Ok, I guess it's time to write again.

So often, this little thought creeps into my head, "why do I visit?"

Yesterday, when hanging with my best bud, "Jerry", I spent a lot of time people watching.  A little group of children had come to sing Christmas carols and reenact the story of Christmas to the residents.  I had arrived a few minutes late, which seems to be my mantra, so I stood in the back and watched.  Jerry was a few rows in front of me and had his eyes closed.  His eyes are closed most of the time when he is sitting.

When the carols began, however, his eyes opened.  You see, you never know what's inside that seemingly "gone" brain.  My son mentioned, a week or so ago, how the thread of the spirit runs deep.  Even Alzheimer disease cannot take it away.

After the little program was over, the children began to pass out candy.  When a little boy approached Jerry with a little piece of chocolate, Jerry did not respond.  The boy shrugged his shoulders, turned and walked away.  I could see my friend, Robbie watching.  Robbie is about 90 years young and keeps an eye on Jerry.  She is as sharp as a tack. The boy offered her some candy and she said, "Go back over to Jerry and put your hand on his knee.  When you do, show him the candy.  Take his hand and place the candy in it."  So the little boy did.  He placed the candy in Jerry's hand and wrapped his fingers around it.  Sniff!  Jerry held it and eventually ate it.

When people began to leave, a staff member walked him over to me.  He put his hands on my shoulders and peered deep into my eyes.  He knew me.  There was no mistaking it.  His penetrating stare spoke...."I know you.  Your mine." 

Later on, I found Robbie and thanked her for keeping an eye on Jerry.  She told me how much she loves him and that she's never seen a man who's countenance radiates  such peace.  Yet, she questioned, "he walks around with a look in his eyes, like he is looking for something."    

I can only guess.  But, I remember the night that Jerry was diagnosed 14 years ago.  He asked, "How do you have a relationship with God when you've lost your mind?"  There were many deep conversations between the two of us.  He knew of God's faithfulness and wanted others to know it too. He went into this disease with such courage.

Perhaps, he's looking for that person to let them know.  Perhaps he's questioning who's around the corner or where he's going or if someone is lost.  It's that kind of look that he has.  I don't know....it's puzzling. But, I DO KNOW THIS....God knows.  God knows what is in the heart of every man.  We only think we can hide from him.  But, he knows.  He places his gracious gift of love in our hand.  It is up to us how we'll respond to it.

So, why do I visit?  Perhaps it's to love and learn.  To think.  To do a little soul searching of my own. When we married 42 years ago, I thought I was in love.  Looking back, I didn't even know what love was.  I love Jerry more now, than I ever could have imagined.  AND....interestingly enough, I have Alzheimer's Disease to thank for it.

Ms. Pensive

What do you do with Ms. Pensive?  Stuff her down inside a down pillow?  Cram her in an iron box?  Throw her overboard…way out at sea?

Now, before you call the law, let me explain who Ms. Pensive is.  She's not exactly a bad person or and evil character.  Actually, she's very empathetic, appreciative of those who mean something to her, and she's thoughtful.  The problem is she's TOO thoughtful!  The reason she's a problem is that her thoughts can consume you (me) and suck every last bit of joy out of you (me).  THUS, SHE HAS GOT TO GO!

Let me give you an example.  Today, for the first time in a very long time, Jerry did not know me.  Those who have read this blog know that this is the connection that has always been there..the fact that his eyes light up and his arms open wide when he sees me.  Well, today he did not.  

I had driven in from Raleigh to take Jerry to First Baptist Church.  This wonderful group of volunteers come every Monday and sing old hymns.  It's a fabulous song fest.  This month, they wanted to invite the entire group to the church for a Christmas dinner and communion.  Since Jerry has been in decline for a while, the only way he would be able to attend would be if I escorted him.  Sooooo, putting on my armor, I decided to give it a try.  When I arrived, I opened the door to the unit and saw Jerry standing about 12 feet away next to the nurse.  He had his back to me.  The nurse turned him around toward me, pointed and said, "Look, Jerry."  There was no response.  The head med tech, likewise, went over to Jerry and led him to me, saying, "Look, Jerry. Look who's here!"  Jerry shuffled over, gazed right past me and walked right on by.  I put my hand on his cheeks and guided his eyes towards mine.  Nothing.  Three times, he walked by me, never seeing me.  

Interestingly enough, Ms. Pensive, didn't get a grip on me.  She tried, ever so slightly, to make me feel sad, but it didn't happen. Briefly, the thought of "Just shoot me" fleeted through my mind, but it didn't stick.   It was if Jerry was someone else's husband.  Sometimes, when there is no response from Jerry it actually helps.  It's not as difficult emotionally.  For some reason, the lack of connection keeps things impersonal.  Does that make sense?

Anyway, the question still remains…"what do you do with Ms. Pensive?"  There have been many occasions when Ms. Pensive has tried to take over my mind.  I fight being taken down by her and with all my mental might, I keep her in her iron clad box with a few cinder blocks  on top for safe measure. Ms. Pensive doesn't like that and I can see her peering through the cracks.  WIth every song of jazz, and every golden oldie her piercing eyes try to make contact.  When I see couples enjoying dinner across the table, or walking down the boardwalk or when I am walking on the beach she reminds me that I'm suppose to be melancholy.  NO!  With every last ounce of my energy, I am calling you by name, MS. PENSIVE.  MS PENSIVE, YOU WILL NOT TAKE ME DOWN!  Get in your box!  Take this!  Take that!  See this rubber mallet?  It's a beautiful sunny day, here, at the beach.  There are dogs to walk and canvasses to paint.  You cannot have me!

MS PENSIVE, BE GONE!

Spiritual

 Since so many have commented on how candid this blog is..I feel that I have to share this.  It's what keeps me going.

Wednesday, the social director from Hospice called and regretfully told me that they would have to discontinue services again.  Jerry danced with the nurse!  Three months ago, he could hardly stand.  The Hospice staff have grown attached and tried their best to keep him on services but he has stabilized again.  What does a caregiver do with that information?  How does a caregiver of 14 years cope with knowing that this will continue.  Do I feel happy?  Do I feel discouraged and exhausted?  Do I panic over the financial devastation again?  Do I feel guilty?  Do I feel comfort that I don’t have to face a funeral quite yet?  All the compartments in my little brain are so jumbled and confused.

Many of you will not understand these things.  How could you?  I’m being honest.  The long period of grieving sometimes gets the best of me.  I CAN’T BELIEVE I AM SAYING THESE THINGS “in public”.  I am very much “in love” with my dearest Jerry.  He is the love of my life and has been since I was 17 years old. We made a vow to love, honor and obey. Til death do us part. I wonder in mind ...This beautiful man ....oh...what is going on here....where did you go? When will you be freed from the shackles of this disease?  Your beautiful eyes are still here and you still light up when you see me.  The road is long.

I’ve just come off of a whirlwind month of art events, a new grand baby girl and a trip to New York with my favorite son. Life was exhilarating and very far away from Alzheimer world.  Now, I’m back and it is quite an adjustment to come back to my empty house and isolated beach.  As beautiful as it is....it is a place of solitude and can be dangerously depressing if I’m not careful.

SO...here’s what happened to me this morning.  When the sun came up my eyes popped open as if calling me out to the beach.  I put on my jogging shoes, downed a cup of coffee, and called the dog.  Montana was so excited when she saw me pick up her ball and chucker.  Today, I grabbed my music and put on my Pandora gospel station....a little meditation music.  It began with Fernado Ortega and his beautiful piano...no words.  God drew me so near.  It was as if He and I were all alone on this magnificent beach. As the music took me away, I prayed my questions out to the Lord.  What is going on?  What do I do?  Where do I go?  Then a song by Cece Winans came on ....Alabaster Box.  I didn’t really know who was singing but I could hear the words

And I've come to pour
My praise on Him
Like oil from Mary's alabaster box
Don't be angry if I wash his feet with my tears
And dry them with my hair (my hair)
You weren't there the night Jesus found me
You did not feel what I felt
When He wrapped his loving arms around me and
You don't know the cost of the oil
Oh, you don't know the cost of my praise
You don't know the cost of the oil
In my alabaster box

Mary adored her Jesus.  I understood her grief and her sorrow.  I understood her praise as she washed his feet with her oil from her alabaster box.  As a visual person, I found myself “out of myself” and envisioning this God, unfathomable, and how how blessed I am to be his.  I relished in that time as the waves rolled over my feet,  the silver sunlight glistened on each crest as it moved onto the shore and the birds skimmed in precision over the surface.

As the music ended, I realized that no earthly condition can rob me of this.  Nor can anything match up to it.  The piano, again, began to play and my heart became light but full with a sweet sense of contentment that I am right where God wants me to be. It's was as if God said, "Be still and know that I am God. Listen. Walk with me. I'm here."  

Perhaps this is another gift...a bit more time to love and be loved in Alzheimer world.  There are still lessons to be learned. It is good. 

As I made my way back across the sand my time of worship was coming to an end.  I had been so moved by this instrumental,  with no words being put into my head, that I pulled my phone out of my pocket to see what was playing.   There on the screen read,  Til Death Do Us Part by Steven C. 

Just wanted to share.

Acceptance World

I suppose the reason I don't cry as much and that I can laugh more is because I've reached a point of acceptance.  For at least 10 years it seemed, in my denial, that we could beat this thing.  We gave it our best shot!  I kind of liked the place called denial because it kept us in a place of "positive". It's a good place to be for a while.  What I mean by that is that dwelling in the destruction of the disease causes a huge weight of depression, a real buzz kill.  Almost devastating to watch.  So........."Alzheimers?  What's Alzheimer's?  Never heard of it."

As long as I didn't give into the demon called Alzheimer, we could overcome just about anything. With a few modifications, we could live life normally; eat, drink and by merry, so to speak.  As long as Jerry had his good days, somehow in my mind, I felt he would get better.  We didn't stop.  We kept going.  

I remember probably about eight years ago, we were in California visiting our son and his wife.  We surprised them. It was so exciting to see the thrill on their faces.  Everything Jerry and I did was usually my idea.  I hated that.  Before "A", Jerry and I both would be spontaneous. We hardly ever planned anything..but one thing we knew is that we always went out on the weekends. Neither of us liked to "do nothing".  (accept when football game was on, of course.)

Either one of us might get an idea to go somewhere, or do something TOGETHER. Then usually we would do it.   After "A", Jerry began to lose his "initiator" button.  His "idea" mechanism.  Everything was always up to me to initiate and plan. And usually Jerry was reluctant to go along with it.  So, he would follow me around like a puppy dog.  It got on my last nerve.  It was like pushing a rope!  Why did it always have to be MY idea?  I didn't realize the initiator had died and that it was a part of his disease.

While out in California, we went to this beach called Point Dume.  Like so many  California beaches, it was set into this craggy cliff and in order to get to the beach you'd have to hike down to the bottom where there are all sorts of starfish and sea urchins.  It was beautiful!  Our son was so happy to explore this beach with us, but Jerry would lag behind with a grumpy look of annoyance on his face. Sort of reminded me of Walter Matthow in Grumpy Old Men.  I would exhaust myself  trying to be positive.  "Oh look!  It's beautiful.  Let's go."  We' walk down the trail and Jerry, dressed in his white golf shirt and faded kaki shorts, would follow behind about 15 feet. Needless to say, I was about to become a naggy wife.  (that's not a good thing!)  Once, we got to the bottom, Jerry would just stand there while we would skip over rocks and collect starfish. It was so frustrating and I just couldn't understand why he wouldn't participate.  Now, I realize that it was the disease.

Here's the deal.  Part of the exhaustion, thus depression, of being a caregiver is to constantly have to be "up".  Constantly have to be positive.  At the point of that California trip, I didn't realize that Jerry's disease was causing him to be so negative.  It made me so frustrated and angry.  Here I was, trying to be a brave caregiver, provide a happy life experience, in the midst of Alzheimers.  I was trying as hard as I could...everyday....and he didn't even seem to want to try.  Grrr! 

Those were the good ole days.  The days we can't get back.  I see now, somewhat,  what was Alzheimer's and what was not.  Over time, the progression has continued.  It has been hard.  There have been lots of tears.  We have finally given up the denial and the fight and have moved to our new "A" worlds. Jerry has moved to Alzheimer's world completely where he is  secure and happily unaware.

I've moved to Acceptance world. Are those the Kubler-Ross stages of grieving?  Denial. Anger. Bargaining, Depression, Acceptance.  It took a long time to get here...14 years....but I'm here now.   The dark days are compartmentalized and the light days are more frequent.  Acceptance world.  Let their be more smiles.  

Grace

In the grand scheme of things.......GRACE.

Have you ever felt confused?  Have you ever had a nagging pain in your neck or your back?  Or have you ever tried to keep a migraine at bay?

Most of us have experienced all of those things.  Think about it.  When you are trying to keep a migraine at bay...it's all you can do to smile.  If your back is giving you nagging pain, it's all you can do to stay upright.  When you've had a confused moment...doesn't it kind of set you back a notch or two?  Don't you question yourself?  I do.  I wonder if I'm losing it.  I tell myself to slow down, keep calm and think things through.  It's totally self absorbing.

I can imagine this is the way it is in the beginning to moderate stages of Alzheimer's Disease or dementia.  The fact that you are aware that you are "losing it"...just the awareness...must be totally mind consuming.  "No.  I'm going to beat this.  I'm NOT going to get confused.  I'm going to keep it together."  I remember Jerry saying those things.  I know he tried so hard for as long as he could.   It was so difficult....then add to it the self doubt, discouragement and depression that underlies it all knowing you're not who you once were.  AND, fighting off knowing what lies ahead.  It's unfathomably difficult.

Looking back, I regret times when my demands were too high.  I regret the times I expected him to put the chair back under the table or close the cabinet doors and drawers. How much was the disease and how much were these things just laziness?  I regret the frustrations that got the best of me when he just "didn't get it".  Why he would let the dog in, then out, then in again.  I promise I'm not beating myself up over it.  How could I have known that it was a part of the disease.  What did I know?  I didn't know a soul with Alzheimer's disease.  Every day was a new learning experience.

For all you newbies, remember the word GRACE.  GRACE,  emblazon it on the back of your hand so that you are reminded every day to give your loved one grace.  In those AWARE days, when they know they are losing it....they need grace.....they need unconditional love and mercy.  They are trying.  Even when they are grumpy and negative.  Even when they slap you on the butt in public. Even when they repeat themselves among friends and say things totally unrelated to the topic of conversation.  They are trying to keep it together.  They are trying to be normal.  Whah!

Dear caregivers, I know it's hard.  It is the hardest task you will ever have...to care for this loved one.  But, you can do it.  With God's grace and strength YOU CAN DO THIS.  Our loved ones need us.  This is our mission for now.  The rewards will be great so keep it up.  WE CAN DO THIS.

Tailgating

If you ever have to considering a facility for your loved one, remember to check out the activity director.  "Activity director?" you say..."what about the safety, staff, the cleanliness, the urine smell?"  Well, those are a given.  Of course, it's imperative that our loved ones have a safe and secure environment, with a well trained staff, that is spotless with no hint of urine smell.  That's what we want.  However....don't forget the activity director.  Our girls....I just don't know how they do it.  They truly love their job and it shows!

When I drove up into the parking lot yesterday, a pick up truck was backed up to the entrance of Jerry's facility.  Draped from it were football banners and the tailgate was loaded down with nachos and chicken wings.  We were having a tailgate party!

It was perfect football weather, clear, sunny and cold.  Every resident was dressed up in their favorite team attire.  For those who didn't have anything to wear, team shirts were provided.  Tables and chairs were circling a game of corn hole and there was lots of cheering going on.  

The great thing about where Jerry lives is the fact that the residents in the memory care unit are incorporated into the activities of the healthier assisted living folks.  Remember, since Jerry is so much younger than the rest of the "others" (the healthy elders), he is treated royally by all of them.  They are endeared to him and think of him as their own.  

When I approached the "stadium" I could see Jerry sitting at a table with his buddies.  He had no idea what was going on, but being surrounded by all that positive energy gave him a peaceful and happy countenance.  To my amazement, he saw me and began to move.  (That always amazes me that he knows me.)  I went over to lift him out of his chair and walk him into the sunshine closer to the corn hole game.  Some of those folks can really toss a bean bag!  

I've found it a bit easer when I visit Jerry during an upbeat activity.  When it's just me, we walk and I talk.  But I will admit that sometimes I'm at a loss for words..especially when there is no response.  So, it's nice to have energy and input from other people around you.  The activities provide stimulation and a chance to get out of the unit.  The spice to their day and helps avoid each day from becoming another Ground Hog Day. Last week was a Veterans day celebration.  Today..it was a tailgate party.  Tomorrow night it will be a country band.  Next week they'll have church on Monday and maybe a "mocktail" party or a field trip the next day.  

Activity directors!  Thank you for all you do!

Those Vows

Scrambling to get my shoes on, I snuck into a wedding, late, this afternoon and sat in the balcony.   The view from the balcony, overlooking the wedding party and the guest, conjured up lots of reflection and I found myself smiling with the sweetness of the moment.  Such a young couple, just starting out, the bride all dressed in white and the groom all dressed in his tuxedo with pink tie and boutonniere. Such naiveté as they entered into the promise of their lives together.

Unless we're fortune tellers, most of us don't know what lies ahead.  We have no idea of the promises that we are making when making those wedding vows.  We enter into this thing called marriage, as idealists.  But, what about when the outer beauty and perfection wear off?  What about when the days are numbered or one gets grievously ill.  What about when the "cuteness" wears off and we have to wipe bottoms or spoon feed the other person?  The wedding vow is so starry eyed and romantic at the time it's being spoken...but what about later on down the road?

Very vintage!  Hippy days.

I am so thankful that Jerry and I didn't have big grandiose ideas of marriage. I suppose we really didn't think too far ahead.  We didn't have a 5 year plan.  We just made the commitment and never looked back.  This was the same example set by both of our parents, for which I am so grateful.   Maybe I had more romanticized the idea but Jerry was more of a realist.  In reality we were, and still are, life partners more than anything else.  Whatever life threw at us..we would tackle it together. That's a pretty serious commitment!!    I couldn't help but get a tear in my eye when this couple said their wedding vows.

So, here we are.  Now.  43 years later. 

Earlier, when I drove into the parking lot the shuttle bus was in front of the facility. The unit was going on a field trip and Jerry was on board.  I parked the car and walked to the front of the bus and watched him as I came around front.  Once into clear view, our eyes connected and he raised his arms into the air...as if to say, "hallelujah".  What sweetness!  His eyes are still glazed but so sweet and vulnerable. Like a new born baby.  (I just had one of those...will write about that later.)

Jerry was eager to get up from his seat and we moved the resident who was next to him so he could get out.  I took his hands and as he rose, ours eyes locked.  Honestly, I don't know if he really knows who I am...but he knows I am SOMEONE. Someone who is important to him.  Sniff!  

There is no understanding this or explaining this to a newly wed.  No possible way of understanding.    I could never have understood this kind of love connection either, if we had not stuck it out.  

The activity director and I decided that Jerry would be just as happy going with me for the day.  So we shuffled over to the car.  Jerry's long arms and legs can be quite stiff and resistant so it is a bit of a challenge to get him into the front seat of a car. It's like folding up a piece of Styrofoam...bend it until it breaks...accept I don't want him to break.    And the whole while that I'm trying to manipulate his body, he's looking perplexed.

Once he was in the car, I noticed that he was wearing someone else's old sweatshirt and that his pants had a hole in the crotch.  Honestly, I've been a bit neglectful in getting him new clothes.  So it was time.  TJMaxx was around the corner, so I said, "Self.  What the heck.  Take Jerry in and get him some new jeans.."  So what if people stare.

Now this is the first time I've taken Jerry into a store in at least a year. In fact, I rarely take him off campus.   His state has been so fragile and I haven't wanted to put him in any confusion.  But, actually, this worked today.  He's actually so unaware that he wasn't confused at all.  I held his hands onto the cart and talked to him the entire time.  I'd hold a shirt up in front of his face and talk, as if he could understand.  He couldn't.   I'd place jeans up to his waist as if he knew what I was doing.  He didn't.  I bought him new jeans.  A new shirt or two.  New jammie bottoms and long sleeved t-shirts to warm up his freezing arms. I kept my arm wrapped around his skinny waist and we shuffled around for about 15 minutes.  

I wouldn't trade that time for anything.   Short but beautiful.  The kind of time that a wedding vow cannot fathom.  But a good time.  A reward that can only be experienced after a long life together.

Little Miracles

It's 6am  and my mind is swirling with things to say.  There are so many things to be thankful for.  I've just come off of a month long art event and Alzheimer fundraiser and my thoughts are reeling.  I am so grateful.  So often I think this thing called "Alzheimer's" is catching.  Many times I find myself calling people by the wrong name, pricing my art inconsistently, forgetting what art is where.  It takes me a moment to collect and organize my thoughts when I'm put under pressure at an art event.  Sometimes I'm "spot on", sometimes I'm the poster child for Attention Deficit Disorder.  It's embarrassing.  It's a miracle that I can find my head sometimes!

I see little miracles all the time.  I guess it's an attitude....which is a miracle in itself!  When I arrived at Jerry's place to visit yesterday, I could hear singing.  The unit was quiet and I could see Jerry sitting, asleep, on the sofa in the living room.  All the residents were sitting around the room and the aide was in the corner singing ..."Daisy ..Daisy... Give me your answer do.  I'm half crazy over the love of you..."  A few of the ladies were singing with her. Let's call them miracles, too.  I began singing with them, waltzed on over next to Jerry and put my arm around his shoulder.  That was a miracle...the fact that I didn't cry.  Honestly, I really didn't even try to talk to him.  I just sat there like the rest of them, singing, and chatting with the aide and the other residents.  It was like sitting around the living room after a Sunday meal.  Very relaxed, warm and fuzzy. ..another miracle. 

Like in the last post, sometimes the only thing that is needed is just to "be".  To press up against him.  To feel his soft sleeve and to hold his hand.  That is a miracle.

I suppose I'm a person who does a lot of thinking.  My dad was like that.  He was slow to speak, read his Bible, and prayed for those who were laid on his heart.  As a child I use to get frustrated with him. I'd call him "the thinker", after the bronze sculpture by Auguste Rodin, The Thinker.  

It's hard to think this was our future.  Who would have thought that in our 50's Jerry and I would end up like this?  Who would have thought that the bright, magnetic, type "A" would end up so frail and in this state of non responsiveness?  Who would have thought that his quiet, introverted bride would become an artist and extrovert. Now, THAT WAS A MIRACLE!  To have seen this future before it came to be would have been "unthinkable".  Yet, with each passing day, I see the future as not mine.  It is a walk.  An opportunity. So, without looking too far ahead, I follow this lamp before my feet, knowing God has gone before me. I see miracles all the time...spiritual miracles and I'm overwhelmed at the treasures I've discovered. 

Oh yeah.  We are about to have our sixth grandchild.  Our first baby girl will be born any day now.  Now, THAT IS A MIRACLE!  So, for you newbies out there.....you will make it.  YOU ARE A MIRACLE TOO!

Just BE

Yesterday my daughter, Amanda, and I drove down to see Jerry.  We never know what to expect.  As soon as we walked in the unit we could see Jerry walking into the back  room.  We waited by the nurses station to see his reaction when he walked out.  Amanda stood to the side and said, "Hi, dad."  HIs eyes looked at her with a puzzled look.  Then he saw me.  He headed straight past her as his eyes locked with mine.   We did our hugs, then I showed him Amanda.  "Look!  Here's Amanda."  "Hi, dad." she said again.  It took a while, but it looked like the brain was flickering a bit.  It began to come....that look of...do I know you?  I think I might know you. 

I often am asked, "What do I do?"  "What do I say?"  "How can I communicate when he/she doesn't respond?"  I usually say just "BE."  In this hurried world we think it's so important to talk, do an activity, be out and about.  Busy.  Busy.  We forget what's it's like to just be still.  

It was a rainy day outside and the weather was in the 60's.  So we slowly walked down the hall to Jerry's room. For some reason, I hardly ever go to his room.  It was warm and cozy and quiet.  We helped Jerry into his lazy boy and tucked him in with a warm flannel blanket.  Amanda sat on the arm of the chair for a while with her arm around him. She gently stroked his arms and tried to warm his hands.  Touching.  Hugging. There are no words to describe how important these things are.  We sat in the quiet room cuddled. When words don't come....just "be".

Be together.  Be next to each other.  Be warm.   Be connected in a spiritual way and let the quietness speak.

After a few minutes, Amanda moved over to the bed and we turned on I LOVE LUCY.  LUCY is timeless. While Jerry did not connect with the show, Lucy's comical antics lightened our countenance and brought energy into the room.    Look at this picture!  This is a picture of alert.  His eyes actually looked over at the camera.  His foot, ever so slightly, began to move when the music of the show came on during a commercial.  We had our "alert" for the day and it was good.  

Weekends are the Hardest

Evenings and weekends are the hardest.

Before Jerry's illness, we were busy at work during the week.  Our kids were either married or off at college.  Our evening's and weekends were our own.  It's the time when you're ready to wind down, take a breather, maybe a glass of wine, share the events of the day.

But, that doesn't happen anymore.  You'd think I'd be use to it by now.  Grant it there are times when I've got things planned and my time is filled with small talk and chatter with friends.  But tonight, and for the last few nights, the sun has begun to set and I've caught myself looking over at the front door.

It's a half door with filtered glass on the top and I keep looking to see if Jerry's silhouette is there.  I want him to come home.  

Today, I went to visit him.  As i walked through the doors to the unit, I could see him sitting outside on the covered porch with his roommate and his family.  Jerry was sleeping in his chair.  It's a site I see quite often.  Sitting up and dozing is his norm.  The aides pointed to the porch.  "Do you see him out there? He's asleep.  I want to see him when he sees you."  I walked on out and the aides were watching through the window.  They love to see his expression.

I softly walked over in front of him and reached down and touched his knee.  I said, "Jerry.  Wake up.  It's me."  He barely moved.  I shook him again, this time a little louder.  "Jerry. Wake up sleepy head."

Everyone watched with their sad sweetness.  Jerry began to open his eyes.  He looked.  "It's me.  Do you know me?"  He didn't.  He didn't know me.  After a few minutes and a bit of prodding….I kept hoping he would reach out his arms like he usually does.  He didn't.  

For some miracle, I was able to keep my composure. The aides slipped away with a sigh. I managed to get him up and we sat together on one of the double rockers.  Held hands.  It felt good to lean against his shoulder and feel his skin. He was not there.  I visited with everybody, just as if it were a Sunday afternoon.  We rocked.  It was a glorious fall day in North Carolina.  For over an hour, we chatted about the weather and our "stuff".  Jerry silent sat.  His eyes were big and blue and blank. He never knew me.

Tonight, I miss him terribly.  He's not coming to the front door, saying, "Honey, I'm home."  WHY AM I SO MELANCHOLY?!!!!!  I thought I was over that!  I suppose because it's a Friday night and people are suppose to be going out with their friends, socializing, going to the movie.  My retired friends say I'm stuck in a stage of my life….stuck in the 49 range..when people still had routines and went out on weekends.  My retired friends say every day is the same….they don't necessarily go OUT of a Friday night. They may go out every night..or not at all.  But for me, since our Alzheimer journey started when I was 47 and Jerry was 51, my date stamp checked out then…and is still checked out.  TIme stood still and is still standing still.  

It's such a weird place to be but as I told my daughter today…"it's my life".  It's become my life and it's on hold.  I hardly know anything different.  It's ok.  It will be alright.  This to shall pass.  Tomorrow's another day and my paint brush is waiting.  Thank God.  Is it morning yet?

Comrades

I don't know why I keep writing.  I'm so frustrated!   Frustrated that we are still in this place.  Frustrated that there is no cure.  Frustrated that more people are being diagnosed.  Frustrated that we don't seem to be getting anywhere.  Frustrated that it's not over.  Frustrated that I'm feeling this way.  Frustrated that I can't stomp hard enough to make a difference!  (I have a torn meniscus!)

I've met three women this week, who's husbands have been diagnosed with early onset Alzheimer's Disease.  I am sick to my stomach with grief for them. I can hardly catch my breathe. I wish I could offer them something.  All I can offer them is friendship...a comrade in arms who will fight with them...who will walk the road with them.

All of us have similar stories.  None of us asked for this...but we've found ourselves in this situation in which we do not dare think ahead and cannot possibly go back.  There's no escaping.  We're in it for the long haul.

I've been reminiscing about when this all began.  Years ago....I was in my 40's.  Jerry was in his 50's.  I am thankful our children were grown.  One out of college and only two left to go.  I'm thankful we had such a good life.

Here we are.  Our last road trip, 6 years ago, about to go white water rafting in Yellowstone National Park, Montana.  Jerry was in the middle stages of Alzheimer's disease.

Jerry was the kind of husband who was supportive in every way.  He adored his children and was the type to cheer down the sidelines of every sporting event.  Hold his girls.  Hold his boy.  No matter how old they were.  While I was a little bit of an independent one, he never was the type to bark orders or have his demands.  Any limits on me were self imposed.  He would have encouraged any endeavor I set my mind on.  In his noble way, he supported his family with no questions asked and no complaints on his work load.  In fact, he thrived on his success and taking care of us.  Yet, he was not the arrogant type.  As long as he had his Alabama football, he was happy.  Underneath his type A work ethic was this bleeding heart compassionate guy who was always for the underdog. He had a quiet reverence for God that was his bedrock foundation.  Looking back, I see how good he was.   

I try to tell him, now, how much he means to me.  Whenever, I get the chance, I tell him. Yet, I don't know if he comprehends it.  Probably not, yet I think he knows.  I think that's why he comes running when I walk in the door to his unit. There is a connection that cannot be explained. Whatever it is,  I know one thing.... that he knows he is loved and that I am consistently there.  He is secure and happy.

So....what that said...Alzheimer's disease, SUCKS!  Ok....I said it!  I hate that word.  But there is no other word that describes it better.   

You're probably saying..."Wow!  That's a switch.  She's saying all those saavy words...then, blasts, "Alzheimer's sucks!"  Well.....that's right.  Because Alzheimer's does suck.....but, we MUST go on and focus on what we can do and hope that someday, somehow, there will be a cure, or a prevention, or at least HELP for those of us on this road.  HELP for future generations! So, we focus on the positive thoughts and forge ahead. That's what keeps we caregivers from going under.  We accept the world we are in...and we stick together.  We laugh. We cry. We fight to keep on going in HOPES that someone will listen.  We're  comrades.

Another One for the Newbies

Family day.  ..North Carolina pulled pork BBQ, cold slaw and sweet tea.  Residents, their families, staff and their families.  Newborns to over a century.  A magician.

Three years ago, I began the unthinkable...  reluctantly searching for a facility.  We were ten plus years into this thing and I was exhausted.  Being the stubborn and independent thing I am, I was going to do the search alone and  step into this brave new world that I didn't want to go to.  After searching the internet for local memory care facilities, I had my list. Ten potential homes for Jerry from Sea Level, North Carolina to Raleigh, North Carolina.   As the day came closer to actually going to see them, my son decided to fly out and do the interviewing with me.  Since he lives on the west coast, he was not involved in the day to day caregiving and really didn't believe that Jerry was at the point to be in a facility.  One of  painful realities.  Thus began the emotional search.  

The entire search process is written about in this blog of 2010.  Here we are now, mid-2013.

Not for one minute have I regretted placing Jerry.  At the time, I didn't realize how worn down I had gotten.  I so desperately wanted to be by Jerry's side to the very end but his needs had become too great. My exhaustion and frustration often led to impatience which was unfair to him.  Now I realize that it takes a well trained staff to meet them. I had to let him go.  Sniff!  Over the past three years, he has settled in, is secure and at peace in his new environment, and I am much healthier.  Otherwise, Alzheimer disease could possibly have taken us both. 

Occasionally, I felt guilty..especially when I would hear of someone caring for their loved one at home.  I honor those who can do it...but it takes so much support.  Once I came to the reality that it was beyond my capacity to give him the care that he needed, I began searching for the best of the best. Not necessarily state of the art,  the home where Jerry resides has the feel of a real warm and fuzzy home.  The staff work well together...from the director, the activity director, the aides, to the cooks, to the maintenance man.  In fact, at special events, the staff all bring their families.  Moral is good, thus making it a positive and happy place.  I can't speak highly enough about it.  This is home and we are family. 

Everyone Loves a Pup!

The schedule said a dog show.  

When I arrived today, I could see Jerry sleeping in his chair in the activity room so I spent a few moments chatting with the aides on their break.  I love these people!  There is not enough money in the world that could pay them what they are worth.  Their job is not glamorous, nor do they get many accolades.  But, I am here to say that they are worth more than gold. 

I read in the schedule that today there was going to be a dog show.  Volunteers had come in.  Fifteen of them.  Their pups were all brushed and decked out in their pink scarves, "rufferee" uniforms, and shiny coats.  These weren't the dogs of the World Dog Championships (or whatever it's called).  No.  They were much more important than that.  They were dogs who loved to kiss and sniff and do tricks for all the residents in the room.  They are the true champions and so are their owners to volunteer their time like they do!  

Even though Jerry was pretty unresponsive today, it was just a good feeling that he was in the room with so much positive energy.  There were so many smiles and "awes" and waggie tails that it was impossible to not be happy.  Here are a few shots.  Enjoy! 

Cooper was taking a little snooze after showing off.  It's hard being a puppy in training.

WHEN LOVE ISN'T ENOUGH!

This week, Maria Shriver and NBC have presented a series on Alzheimer Disease to raise awareness.  It infuriates me that this disease doesn't create more outrage.  This is not just an "old person's" disease anymore. And, I suppose, with all that is going on in the world, it gets put on the back burner.  

Thousands of lives are being affected by its hideousness and I hardly know of anyone who doesn't know someone dealing with it.  PEOPLE, we need to get ANGRY and say "THAT"S ENOUGH!"  It's the number 1 most feared disease among young people, yet, the denial of our own immortality keeps many from seeing it's reality. It's hard to compete with all that's going on in the world.  I mean with world has so many insane problems that it's impossible to choose which "lost" cause to support.  However, this one needs to be taken seriously, or it will be sneaking up on us (which is already is) and it's catastrophic effects will be beyond the scope of repair.

Take Breast Cancer,  Aids,  MS for example.  All have so much momentum behind them and their fund raising efforts coupled with government financial backing have made a significant difference and have saved thousands of lives.  Perhaps it's time to take one less trip to Disney, or Hawaii, or down to the local restaurant ...perhaps it's time to purchase one less outfit, pair of earrings, surfboard, bottle of wine (oops..that hurts)..even one less coke ... perhaps drive our cars one year longer....you get the picture...and take those funds...multiply them...compound them into some research funding that counts!  Did I mention that Duke is not accepting anymore brain donations due to lack of funding?  How in the world will we ever find what causes it, much less a cure?

In the meantime, this weekend, I'm riding in the MS ride to support my dear young friend, Lisa, who has MS. This ride is in it's 25th year and has raised over a million dollars this year so far.  I'm waiting for the day that Alzheimer's Disease has it's own ride.  But when I ride, I'll proudly have "for JERRY" written across my number since he cannot ride himself....and I am determined to make it up and across that New Bern bridge for LIsa and for Jerry's sake.  It kills me that I am healthy and he is not.  And it kills me to think that because of our denial....my children and grandchildren are at risk.  

I am determined.  Won't you join me in the outrage?   

Blah, Blah, Blah Love

Yesterday while poking around the bike shop, I couldn't help but think about how fortunate I am to be old and healthy.  I was taking my bike in for a last minute tune up before the MS Ride in New Bern.  If you've ever hung around bikers, you'll notice how they are all so fit.  This is my first ride!  Yet, another new challenge which has become an evident way of coping.  While I was waiting, I felt such freedom in asking stupid questions, trying on those strange bike shorts, checking out the padded gloves so my hands don't go numb, etc.  See, being old and a beginner, is liberating in that I don't have to pretend or care about my image.  That's what Alzheimer's disease has done for me.  

Once the bike was finished, Montana and I drove on over to see Jerry.  From fitness to finished. What a difference.  I can't help but get weepy at the injustice of it all.  Here I am healthy and there is Jerry, taken at such an early age.  But, you know what?  It was good.  

Life is so much more than just me...or Jerry.  It's about passion and purpose and honor. It's about  loving with an extraordinary love. Kind of like those faithful furry friends of ours who stay by our side and wait us out.......but so much more.

The days of Alzheimer's disease have, in so many ways, been excruciating to watch.  Yet, the revelation of God's mercy has overshadowed the difficulties.  

Then, I was reminded in 2 Peter 3: 8 how "with the Lord a day is like a thousand years, and a thousand years are like a day."  With that perspective HE is not slow to answer….it is WE who are impatient to wait on his promise.

Extraordinary is merciful love, gracious love, sacrificial love, compassionate love.  Seriously we need more of it!   We need to give more of it!  (ENOUGH OF TODAY'S SERMON.)

ANYWHO......back to Jerry.  When I walked back through those doors, I peeked around the corner and back to the family room but couldn't see him.  Those beautiful people, toothless, balding, slumped over...but who's eyes brighten and wave when they get a visitor....THEY are the reason we keep on keepin' on.  They are the reminders of how to love and to love unconditionally.  Not the beautiful, or the rich, or the fit, or the funny, or the clever, or the intelligent......it's those who are stripped of it all down to their core being.  That's where I see God showing us how to love. And when I look deep into Jerry's eyes, I see eternity.

As I came back out of the family room, I turned and saw my beautiful Jerry walking toward me.  There he was tall, fluffy clean hair, wearing a soft blue golf shirt. The closer he got, the faster he walked...arms outstretched and eyes wide open.  I cry every time!  This is love in it's purest form.  I stretched out my arms, skipped over to him and threw them around his little body. Sometimes I squeeze so hard that I hear a grunt.  Loosening up a bit, out of the corner of my eye I could see two heads peeking around the corner of the dining room.  There were two aides, anticipating the reunion, watching...all smiles. Warm fuzzies abounding and lovies radiating around the room.  (a few misty eyes too...good misties....feel good misties).  

Life is rich and good. It really is.

Loving Networks

Most of this week, I've been able to spend with two beautiful friends.  Shawn, who's been battling breast cancer this year, and her sacrificial best friend, Brenda.  We've shared how our "life altering" experiences have been a blessing in so many ways.  It's been a time to give love and to receive love. Shawn's experienced such love from so many people during this time. These gifts of love have brought her such an awareness that now has sparked in her to give love.  And in an inexplicable way, the more love that has been given out....the more love has been returned exponentially.  It's amazing how these experiences bring networks of friends and supporters that carry us through.  Shared experiences.  Like minds.  Commonalities.

I've met with most of the hospice angels now.  This is another network that radiates love.  Interestingly enough, Jerry has improved in the last few weeks.  He has started eating again, looks a bit less weak and is even standing up a little straighter.  Since I don't go visit every day, I rely on aide reports.  I've heard that one day he is "spot on" and the next day he sleeps all day.   On off on off....up down up down...such is the life of the Alzheimer patient.

Last Sunday, when I arrived, I saw his former hospice chaplain sitting on the front porch. He's a gentle soul with a huge smile and firm voice, who truly called to this line of service.  We chatted for moment and then I went back to get Jerry while he got his computer set up.  

Some things have changed since Jerry was last on hospice.  DOCUMENTATION.  The new medicare guidelines require multiple questions to be asked and documented while in the presence of the patient.  These new rules and little laptops get in the way of having an intimate and personal visit.  Just a tad annoying.  It's feels like more of an interview...so get ready for that.  Hopefully, this is just a learning curve getting use to the new computers and guidelines.

Thankfully, Jerry was assigned to the same hospice workers as the last time.  It was like "old home" week.  (No pun intended.)  Miss Penny, the social worker, happened to arrive at the same time, so we all had a really nice time getting reacquainted around the table.  Several attempts were made at communicating with Jerry.  "Roll Tide."  "Go Alabama." Hoping to spark some deeply embedded memory from long ago.  We were only met with blank stares and questioning eyes towards me.  In spite of his look, I could sense his calmness about his being with them though. Mostly, we chatted about his current condition and peppered the conversation with the frustrations of documenting.  Our visit lasted about 45 minutes.

Here's the really neat part.  At the end, "Mr. Chaplain" said he'd like to read a scripture. Lovingly, he turned to Ephesians and with his gentle voice, and great conviction, read the passage. After reading he told us a story of how he was visiting with a gravely ill blind man recently and asked him, "How can I pray for you?"  The man sat there a few minutes, then said, "Just pray as if you love me."  We all need to feel loved.  Then, he directly asked Jerry, "Jerry.  May I pray with you?"  All of a sudden, coming out of his silence, Jerry leaned forward, slowly moved his hand into the chaplain's hand and said, "That would be nice."

There is no greater love than this.

Triumph in Spite of....

Ironman and Machine Man -

why are my legs bigger than both of those guys!  man! 

Ok.  I was hesitant to write this due to the fact that it's not "about me".  This is meant to be an encouragement to all of you caregivers. 

Two and a half years ago, when Jerry went to live in a facility, it was so devastating for both of us.  There were months when I cried my eyes out.  It was all I could do to walk around the block.  The twelve years of caring for Jerry was so gradual that I didn't realize how it had zapped my strength.  I was done.  Toast!

Thanks to a dear friend, I was encouraged to exercise.  I hate exercise. Face it....exercise hurts and I have an aversion to pain and discipline and ice packs. "Machine man", being a trainer who is an insaniac about exercise with a love for helping people, nagged me about how I needed to exercise in order to care for Jerry.  SO.....in his little manipulating way, he coerced me into entering a sprint triathlon. He printed out an application and knew I'd take the bate. I mean...why not? I'm not getting any younger!  So I began to get use to the idea and I couldn't help but remember how Jerry was such a cheerleader.  I remembered him running along side of the pool cheering for my kids to keep on swimming.  He'd always say..."You've got to have fire in the belly!" The only fire that's ever been in my belly is after eating too much Mexican food!

Today!  Today I found myself driving to a nearby Marine base with my bike loaded on the back of my car.  As I drove onto the base, I started to freak out!  These were Marines! The course seemed much longer than I thought and the closer I got to it...the longer it was!  This was NO sprint!  These were real athletes! Mostly men! Athletes with fancy bikes, triathlon suits, two pair of shoes, caps and googles, even!  Drat!  What have I gotten myself into?  As I stood in line to pick up my race packet, I found myself behind a multiple ironman competitor who graciously helped me with words of wisdom of how to remedy goggle raccoon eyes.....and slipped on his racy pair of biker sunglasses.  He's been competing since he was a little kid.  WHAT"S UP WITH THAT!  

Hey! WHATEVER.  I'm old!  This is my first.  And I'm trying!  What the heck!  So I backed my bike up into the rack, laid my helmet down on my orange towel, along with a gel pack, my shorts and my shoes with vaseline  (just like on the "how to" u-tube video I watch last night.) then headed to the pool.  There, I found myself lined up with hundreds of phenoms, garbed in all their sleek multi colored tri-suits, with padded butts, so they could just hop on their bikes after their swim. All around me I could hear them say, "I didn't train for this."  "Me neither.  I bought my bike at Walmart last week."  "I'll get passed on the first lap."  LIES!  ALL LIES!  Here I was, the "senior female" in the middle of them, in my  $15 clearance periwinkle suit from TJMax....and my bare thighs glowing in their truest form!  No cap.  No goggles! (I look terrible in goggles.) SUCH A NERD!

Next up and no turning back now. I stepped across the time pad with my electronic ankle bracelet and into the water I went, swimming "effortlessly" (that was another u-tube video). I could see out of the corner of my chlorine "popeye" as I stroked over.... people watched to see if I was going to actually make it.  Ah!  Fooled them!  With each lap and each turn on the bike, I found myself getting stronger and smiling.  I envisioned Jerry cheering with every lap and at every turn on my bike.  The run...well, I walked half of it...but at the finish line......there were the phenoms...cheering me in..."don't give up! don't give up!" ..Jerry was right in the middle of them.  I finished!  It was a triumph!  Another one for the bucket list!  Truly the best thing ever!  Now, on to the next one.  Where's my ice pack?

Bye bye! 

I think it's time to ditch the periwinkle suit and get a real one....what do ya think?

Hospice Options

While on my bike ride this morning, I thought of writing about all the hospice options that are out there.  (Lest you think I'm still hovering over that margarita from a few days ago.) For some reason I've gotten into biking and recommend it to any caregiver who wants to survive and thrive.  The time on the bike, plus the concentration it takes to not get hit by a car, is a really good way to take your mind off the Alzheimer situation.  It's respite for the mind, not to mention good for the body.

On the way to New Bern yesterday, I stopped to visit the new Crystal Coast Hospice House that has opened outside of Morehead City.  This special place has been the focus of many fundraisers over the past few years and is a much needed asset to the area.  Since Jerry is officially on hospice again, I wanted to see what this new place was all about.

Hospice is a service that is provided primarily by Medicare in the end stages of life.  It is only available when no life extending measures are going to be taken and palliative care is requested.  It is designed to provide round the clock care and support for the patient and loved ones, relying on input from physicians, nurses, chaplains, and social workers in formulating a plan of care to relieve suffering. This multidisciplinary approach allows the palliative care team to address physical, emotional, spiritual, and social concerns that arise with advanced illness.  Jerry, now, has provided to him, a physician, a registered nurse, an aide, a social worker, a volunteer, and a chaplain.  These people are angels on earth!

This Hospice House is a beautiful, state of the art,  new facility and  I was greeted by a tender nurse who had actually seen me before.  She had previously been a hospice nurse at his facility and remembers EXACTLY the smile across his face when she saw us hug one day.  (Ya never now when someone is watching.)  Anyway, I thought that was such a "godsent" message from her to relieve any anxiety.

As we toured,  I got the sense of a refreshing peace.  The walls were lined with beautiful original artwork that has been donated.  (Which I am definitely going to do.) There is a living room, a small chapel, a family dining room for visitors, an outdoor covered patio and even a play room for children.  The house has two wings: the acute care wing and the residential care wing.   Each room is private and has a hospital bed, a sofa and chairs, tv, and a private patio with table and rocking chairs.  The "homelike" atmosphere is designed so loved ones can spend the night or weekend. 

For those in the residential care wing, the cost is $75 per day.  A minimal cost for such a facility.  The cost of the acute care wing....is nothing and is completely paid for by medicare/insurance.  Amazing!

For now, this is not an option for Jerry.  At least I don't think it is yet. He still gravitates to be near people.  His current facility provides activities, social interaction and a common area...even if he is "glazed" over.  The Hospice House has no activities or common area for the patients and each room, being private, would, I'm afraid, bring him  loneliness. 

Its good to know that this IS an option if I choose in the future.   

For now, Jerry's facility, with the extra layer of visiting Hospice care seems to be working. This added layer of service will enable him to remain at this current home if his needs become too great.  The "elderlies" on the front porch, keeping their eyes on him,  keep everyone on their toes too.    

Just wanted you to know.  Hope this info helps.