Ok! Seriously!

Ok, ya'll.  How do you move on when you've got the love of your life living in Alzheimer world?  It's crazy! 

The worse thing in the world for me would be to move to Greece....totally in a hedonistic sense, looking for self pleasure, forsaking the fact that I've got a loved one who needs me and loves me.  There may be time for that later...but not now.  However, the fact remains that our loved ones with Alzheimer disease are not moving very fast and the long goodbye is very long.  In this case, 14 years.

So how do you balance moving on with staying loyal?   For me, I've made a vow.."til death do us part".  That means....until death....not until the death of the brain or the memory.  It means...."It's not over until it's over."   AND, please do not misunderstand...I am NOT wishing it was over any time before God deems it so.

In the meantime, the need for a life of my own has been a real growing experience.  Face it.  Jerry and I have been together since I was 17!   SEVENTEEN!  17!  He was the magnetic one.  I was the shy one.  Well, this afternoon, while coming home from visiting Jerry, I decided I just could not go home and turn on the TV.  ( TV does not exactly turn me on either.  Ha!)  So, I sucked in a large breath and pulled into the parking lot of our local mexican restaurant.  That is WAY out of my comfort zone...to go into a restaurant alone, sit, and eat by myself.  LOSER!  I've done it once or twice  before and texted on the cell phone the entire time.  SO STUPID!

Anyway, when I walked in, I said, "Self!  Just sit at the bar.  Be brave.  Go over there and sit and order a top shelf margarita.  Act like you know what you're doing!"  So I did.  I ordered a Don Julio margarita.  (never heard of the guy, but the people next to me said that's what I should order.)   I ate the entire basket of chips all by myself, too.  I tried to make conversation with Armando/Alfedo, whoever he was.  After a few struggling minutes, I noticed a few other struggling losers too.  Oh, I"m sorry I said that. WE ARE NOT LOSERS!   

After a little while, I found that there were some pretty nice people around.  New friends, should I say.  Course, I was the only "stag" person there....but the rest of the groups were all very inclusive which made me feel less stupid.  Still trying to maintain my dignity, I packed up my belongings after my marguerita and went home with my steak quesadilla to go. After all, I had things to do, places to go, and people to see.  YEAH, RIGHT!  One large step for myself and one small step for mankind.  Wasn't that a quote from the first steps on the moon??  Oh yeah....it was "one small step for man.  one leap for mankind."  ...or something like that.

OLE! 

Carry Me

That's the title of this painting.   

This blog is not to bring people down, nor is it to build me up.  It's purpose is to "walk along side", "to help carry others" who are walking this journey and to let them know that they are not alone.  Writing and painting are very cathartic, yet, this is not about me....it's about all of us.  

Personally, the longer I live and the closer I come to the "end" of life, the more beautiful God becomes.  When I was 19, I thought I knew it all  (about GOD).  SInging kumbaya songs and "feel good" stuff.  When I lost my dad at 29 I found out I knew nothing!  The "feel good" stuff just didn't cut it for me.  When I was 38,  I lost my mom. Life was hard. I was beginning to realize that maybe, just maybe, I needed to be a little more serious about this "God guy".  We needed to have a talk!   At 49, and in the beginnings of Alzheimer world, God revealed himself in ways I had never seen before.  And now, at 59 (I'm counting backward), I am so aware of his miracles in every little thing.  How awesome that God reveals himself more and more and more when HIS time is right.  His gift of eternity is in a place where there is no pain, no tears, and no human frailty, no greediness, no anger, no jealousy, no frustration...the list goes on and on.  In fact....it will be a pretty stellar existence.  What extraordinary love and grace!

SO...as we enter the passage, the transition, we are as ready as we'll ever be.  Take a deep breathe, the gauntlet begins!

How beautiful that this journey has been long.  "Beautiful?" you say.  "Yes", I say.  The length of this journey has shown me the value of life, the value of relationships, the value of the heart.  ...to love the "unlovely"....to appreciate the little things...to see the larger picture far greater than ourselves.  It has given us time to say "goodbye", "I'm sorry", "I love you."  Its has enabled us to teach our young how to love and how to give in the  real sense of the word.  Believe it or not, it has given us balance in an unbalanced world.  

This painting is of a time when our daughter was in a dance marathon to raise money for the UNC Children's Hospital.  She had been on her feet for almost 24 hours.  Jerry, in his loving "daddy" way, picked her up and held her so that her feet would be up off the ground.  She held on tight as he helped take the weight off so that she could continue the marathon.   He carried her.

That's why we are here.   

Matthew 11:28  Come unto me, all you who are weary and burdened, and I will give you rest. 

Coping

Ok.  May I be honest?  I don't know why I am writing this for all the world to see but surely I am not the only one who is experiencing grief and loss. 

Here's what I wrote my children today.

"Met with hospice today and the facility nurse (before they came).  Interesting how the head of the unit and he see things so differently.

ANYWAY….the hospice doctor came today along with the hospice nurse.  I guess it brought about the reality of the situation again.

It was obvious, by their compassion, that this time..it's the real deal.  They asked…"is there anything that you need?" (as if there is no turning back now.)  I've never had a doctor ask that before.

Anyway, we talked about how daddy has had a little rally…started eating, saying a few words, etc.  In fact, when our favorite aide took him back to the unit, I kissed him goodbye and said, "I love you."  "He kissed me, and said, "i love you".  We were shocked considering he's hardly said anything cohesive in years.

The hospice nurse said the UPS and DOWNS are not uncommon but, by the way that Jerry needed to be pulled up (out of the seat),  she felt this could very well mean it's the beginning of the end.  Soon he will not be able to get up at all.  The fact that he started eating again and that he spoke…could be the UP before the DOWN.

I am so happy that Hospice has been called in again.  This doesn't exactly mean Daddy is leaving us  tomorrow…but it's just another confirmation that he is not going to last "forever".  

The hospice nurse explained how she has seen Alzheimer patients go quickly or linger for a long time.  There is never any rhyme or reason.

Our biggest concern is falling.  He is still mobile and is at a big risk of serious injury.  According to law, it is illegal to use restraint even if to protect the patient.  EVEN if the patient falls and cracks their head wide open….a safety belt is illegal according to government regulation.  We talked about calling 911, falling in the middle of the night, how he would have to be stitched up, etc.  I'm praying that this won't happen. There have been recent occasions where we could barely keep him upright while walking.  With his height, the momentum of his leaning forward will surely take him forward to the ground.  Yet it is unrealistic to think someone will be with him every waking minute. The doctor…he just shook his head…..as if to say….."it very well could happen…get prepared".  We talked about feeding, diapers at night, organ donation, grief counseling …you name it.  THANK GOD>>>JERRY HAS NO IDEA WHAT IS HAPPENING!!!   That's a blessing."

So, how do you cope when you have to tell your children these things?  Much less, how do you cope when these things are told to you? 

For me...each time it's different. Most of the time, on the 45 minute drive home, I am comatose.  I can't listen to music.  I can't talk on the phone.  I am completely in a glazed eyed "zone".  I need time to process.  Process my thoughts and my feelings.  Then, when I get home I react.  My reactions are so varied.  Sometimes I cry.  Sometimes I call  out to God!  Many times, I pour a glass (or two) of wine and throw gobs of paint on a canvas, sometimes I tear off on a bike and then, sometimes, I soak in a warm tub filled with baby oil.  Crazy!  But, FOR SURE, I do NOT talk to anyone.  Idle chatter does NOT work for me...and I do not want to regurgitate the story over and over no matter how well meaning the friend is.  That's ok, isn't it?  Surely, a friend would understand, wouldn't they?

Shared Stories

On the road to New Bern, there is plenty of time to think.  I think about all the shared stories of those in Alzheimer world. This morning I received an email from a fellow sojourner.  I say "sojourner" because the definition refers to temporary residence.  Those of us who live with our loved ones in Alzheimer world are sojourners together in our temporary world effected by Alzheimer disease.  This beautiful wife shared what seemed to be "my" story.  Retiring from her practice, possibly selling her house, yet not knowing where she will go.  Her husband has been in his new home for about a year and a half and states "it's torture to watch his essence fade, never to return....but he still gives the best hugs."  She is able to focus on the good in the midst of the bad.

Yesterday, I was with a friend who's wife has been in her "new" home for about 6 months.  Our stories are similar too.  Somehow we find it funny how she loves to be in the bed and how he and the staff have to search to find who's bed she has crawled into.  Not funny....but somehow brings us a chuckle.  She doesn't always know who he is...but recently looked at him and said, "you have beautiful eyes."  which is probably why she fell passionately in love with him over 50 years ago. 

If there is anything consistent about this crazy disease, it's that it is totally mind boggling.  Though the boggled mind is the patient's norm,  the caregiver's mind is boggled most of the time too...always questioning "why?"  "what was he/she thinking?"  "why did he do that?" "how long can someone live like this?" "what do I do next?" and so on.   

The longer I've played this role of caregiver, the more I've realized that it is the caregiver who has to change....not the patient.  There is no amount of pushing and prodding or "figuring things out" that will bring our loved one back. I've stopped saying "remember when we...."  Of course he doesn't remember.  Why would I ask that?   Somehow, I think if I remind him about where we use to live or when we went to wherever, he would remember and somehow it will bring him back.  It won't.  Maybe that happened in the beginning stages, but certainly not now.   There are no expectations and I delight in any surprises. 

As of a few weeks ago, Jerry had quit eating.  He was growing weaker and more foggy. Hospice was going to be called in.  BUT GUESS WHAT!!!!  He is eating again and a tad less foggy again.  In fact, yesterday when I went to visit, I knelt down beside him, held his hands,  gazed into those beautiful eyes and said, "Hi Jerry.  It's me."  He blinked and tried to clear his eyes and after a few minutes said, "I believe I know you."  

So we find ways to see the good in the bad and we keep on trucking.  We don't dwell on the future because, for me, I know that God sees the future that I cannot see.  I'm seat belted in on this ride, safe, and holding on one day at a time, one moment at a time.   There is peace in that.

Once Upon a Time

This post is for all the newbies in the group.  It's seems like ages ago when we were  newbies.  Guess it was.  Fourteen years.  It was the most traumatic and overwhelming time, I think, I've ever experienced.  Not only were Jerry and I broken hearted, but we were numb with the thought of the daunting journey ahead of us. 

Three times, last week, I was approached by women who's husbands were newly diagnosed.  First, a phone call from someone who's husband was older and really struggling.  The second was at an art reception on Thursday, when a lovely woman came over to me, bewildered, pointed to her husband, said he's been going to our doctor at Duke and that she had been reading this blog for months.  The third was a beautiful Facebook message on Sunday from a young lady who's father has been diagnosed with frontal lobe dementia.  He's in his 50's much like Jerry was.

When Jerry was first diagnosed I wanted to escape.  In fact, how about to Hydra, the little Greek Island? ...to the Hotel Mistral, voted number one on Trip Advisor.  Can you tell I've been day dreaming? Just the fact, that I can think like this is a miracle.
 

Every time I receive a note from someone, I weep. There have been  many dark days.  There were days I didn't want to wake up.  The emotional and mental pain was just too much to bare.  But guess what, I DID WAKE UP!   I am here to say.....you can make it!  You WILL finish this marathon!  Since Jerry has been ill, not only have I survived, but I have grown as a new and stronger person.  There IS light at the end of this tunnel.

Their have been many hard things.  Such as dropping out of  activities in order to care for Jerry.  I'd ask myself,  "What will I do to generate income and still be able to stay at home with Jerry?"  "When should I stop working?"  We had to drop out of church activities accept to be occasional attenders.  Then there was the guilt and the feeling that I needed to explain.   There was a time when I realized that my friends could not always be there for me....the resentment.  They had families of their own.  Some stuck with us, but some moved on.  There were emotional struggles about that and our social life eventually faded away.  At least the social life we once knew.  Then there were the financial decisions and the insurance decisions.  Then the FACILITY decisions.  The list goes on and on.

The fact is....since I couldn't "flight", I decided to "fight".  I had to....for Jerry.  And the thing that has given me the strength to continue to fight is my faith.  Dear "newbies" this is a long, long journey and our strength is not  our own. 

As long as I breath and God leads, I want to give you my support.  I do not want this marathon to be in vane.  We need each other and there are too many people on this journey.  I'll do my best to encourage and inform and even help you laugh.  Thank you for reading.

Back from VACATION

Breaking Free

One of the side effects of living with Alzheimer's disease is the emotional push and pull for the caregiver.  Jerry, even though he is in the last stage, is at peace in his Alzheimer world.  There is comfort in that. I see Jerry preparing to leave this world, yet, I see the earthly trappings still holding on.

But for the caregiver, the spectator, it is quite a different story.  In the last post, Jerry had stopped eating.  For several months his decline has been quite evident.  He is more hunched over and leaning forward now and there is concern that he may fall.  His gate is quite fast, possibly to keep from falling.  Like a "fast walker" leaning forward gains momentum.  I don't know what to do with this information accept stick it in my bag of Alzheimer facts to pass out when others ask.

Yesterday afternoon, I stopped by to see Jerry around dinner time.  I was on the way to an art walk in downtown New Bern.  Usually, I go in the mornings and find Jerry napping in the activity room.  I was expecting the same since it was late in the day.  When I walked in, however, there he was ....PACING!  To my delight, he was right in front of the door, standing up right, dressed in a perfect dress shirt.  Clean shaven.  Not a wrinkle on his face.  He stopped in his tracks and looked my way.  He was irresistible! I held my arms open wide and he came right to me!  (I'd like to say his eyes were clear and focused but I'll take what I can get.)

I cannot tell you what this does to a caregiver.  The ying and yang of emotions!!!  One day, I'm told he isn't eating and is in sharp decline...the next day is relatively "spot on!"  What am I to do with that?  One day I am processing  "the end" and the next day I'm wanting to be elated that he is back from "vacation".  It's enough to make me throw in the towel!  The emotional fatigue is, well, something I cannot even explain.

I can, however, tell you how I cope with it.  WINE!  Just kidding.  Well...a little maybe.  Wine could never be the answer to coping with this.  It would cause an incredible headache!  Truly, however, I did eat a small filet and a glass of red wine when I got home.  I had myself a real pity party for about an hour....then went to bed.

The real way of coping for me is to RIDE LIKE THE WIND!  I worship when I ride.  My focus is on God....not Jerry....after all, EVERYTHING else is fleeting.  EVERYTHING else is temporary.  Before I know it.....I will have ridden 20-30 miles.  At least I did today.  The clouds were incredible.  The emotional stability has been renewed..and my legs have become like rubber.

MUCH BETTER THAN THE OTHER WAY AROUND!   ONWARD TO RIDE ANOTHER DAY!

The Love Connection

We are entering the latest of the latest stage of Alzheimer's disease. The aides have told me that Jerry is not eating on his own.  You know what that means.  WIthout food and water, we do not live for very long.   

It's been a sobering few days for me.  Jerry is so thin.  I can see the decline.  Hospice may be called in soon.

BUT, I've got to say that i am grateful. "How can I be grateful?" you say.  Jerry and I are still connected.  Our eyes still meet.  There is not a time when we do not connect in some small way.  It's a "God thing."  He, most of the time, does not connect with anyone.  He is getting thinner.  Many times he seems like he is in a far and distant land, in fact, he is sleeping most of the time.  YET, when I walk through those doors, we are still connected.  I cannot tell you how thankful I am for that.  It is truly beautiful.

Jerry and I did not have the perfect marriage.  We were like most marriages...HUMAN...typical tit for tat...fussing..loving...laughing...fighting....

No matter what, though, we vowed from the very beginning that we would stick it out.  The rewards of sticking it out have brought a depth of knowing love in a way we never could have understood.  Now, we have a bond that even Alzheimers disease cannot break apart. 

I will keep you posted as we progress through the coming months.  And there is peace.

Psalm 23 of David.

1 The Lord is my shepherd, I lack nothing.
2     He makes me lie down in green pastures,
he leads me beside quiet waters,
3     he refreshes my soul.
He guides me along the right paths
    for his name’s sake.
4 Even though I walk
    through the darkest valley,[a]
I will fear no evil,
    for you are with me;
your rod and your staff,
    they comfort me.

5 You prepare a table before me
    in the presence of my enemies.
You anoint my head with oil;
    my cup overflows.
6 Surely your goodness and love will follow me
    all the days of my life,
and I will dwell in the house of the Lord
    forever.

Our Dog Montana

If there is anything that Jerry can still do..it's hold a ball.  Oh...that the football and baseball fanatic in him should ever go. Well, it has....but the ball sense hasn't.  In fact, when we cannot connect, I often put a ball in his hand or toss it to him and he will catch it.  

On occasion I take along, our dog, Montana.  When she eagerly jumps into the "way back" of the car, she knows exactly where we are going. To see Jerry!  Montana is the most obedient dog I've ever had and takes her protective role very seriously.  She will scare the "P" out of somebody with her bark until she approves.  She has never forgotten her loyalty to Jerry.  We adopted her at a gas station on  Rte 66 on our last cross country road trip 5 years ago.  Since I knew our traveling days were over, having a companion for him seemed like a good thing to do.

When Jerry and I approach the back of the car, Montana patiently waits until I lower the window or open the door.  Jerry is very slow to respond but, patiently, she sniffs him and gently leans toward him as he touches her fur.  She looks at me the entire time as if she knows that her job is to see that he is alright.  Once I give her "the nod" she goes off to patrol the yard of the facility.  Such a good dog, she is.  "The ball?" you ask.  Well, since there is no telling what direction or how far this ball will go, it's a good thing that Montana will fetch too.  "Fetch, Montana! Go get the ball!"

WHY VISIT?

Here we are, seven years ago, at our youngest daughter's wedding.  That's Jerry.  Animated!  Winsome!  There I am, speaking for him, giving the toast.  He was always the talkative one.  I was the shy one.  Boy!  How things have changed!

Pictures speak a thousand words.  Here's WHY WE VISIT.

TO LOVE

TO GIVE LOVE

TO TEACH LOVE

TO SHARE LOVE

TO KNOW LOVE

Another Reprieve

Here's the deal with Alzheimer disease.  The only thing that is predictable is that it is unpredictable!  Once that fact is accepted the emotional roller coaster is less dramatic. 

In my last post, I wrote about Jerry's being unresponsive.  Actually, the last several visits have been that way.  I remember last year the same thing happened.  This time last spring, I was calling brain donation centers, organ donor programs, and picking out songs for Jerry's memorial service.  That's the way I work.....face things "head on." ..."take the bull by the horns" so to speak. 

Then, Jerry rebounded.  I was a wreck! 

After his last glossy eyed visit, I just had to go see him again.  Something was drawing me back.  So today, when I drove up in the parking lot, his activity director was just leaving to go home.  She greeted me with, "We took Jerry out for pizza today!  He ate all his pizza, my french fries, and a huge piece of chocolate cake!  We just got back, so I hope he's still alert so you'll have a good visit."

Why was I not surprised!   I was delighted!  When I walked in, I could see through the windows that he was out in the back yard with Tom, the tool man.  Tom calls Jerry, "Colonel Jerry".  I call Tom, "Major Tom".  They were sitting in the rocking chairs on the back porch.  When Jerry saw me, he stood straight up!  That was the end of Tom.  It was all ME from then on!  We had a wonderful visit.  

Now, when I say wonderful visit..here's what I mean.  We sat...like on your grandmother's front porch..in the good ole summertime.  Very little was said..but as the breeze swayed the trees and the sun lit the hanging baskets of pink and white mandevilla, we just rocked....rocked, holding hands. Jerry would pat my leg.   Healthy tomato plants were growing in pots on the sidewalk and I talked about tomato sandwiches, black eyed peas and cornbread.  We connected.  It was perfect and I know he knew who I was.   

The visit didn't last long, maybe 45 minutes.  I've learned not to expect much.  But I was grateful for the 45 minutes.  in fact, it was enough.  I mean....how long can one talk about black eyed peas and cornbread!  After about 45 minutes, Jerry began to look restless..a little fidgety.  I knew it was time.  Time to move on....(either to the dining room or the potty.)  Either or both.  Probably both.  TIme to summon the aide.  Then, they moved on.

Be Still

I have a dear friend who placed his wife in a facility a few months ago.  We talk about how we have to stay busy and not allow ourselves to "think too much". ​  Lest, the "thinking" take us right down the drain of depression.  Personally, I usually make a  conscious decision never to go within a football field of that drain.

​Today, however, I've been thinking.  It's not been a bad thing though.​

​One thing that Alzheimer Disease ​gives you is time to reflect on the meaning of life, it's purpose, the "why's" , the "what's the point".  For Jerry and I, it's been 14 years of pondering.  Today was one of those days.  I mean, let's face it.  From the day we are born we are beginning the process of dying.  Probably if we knew that when we were born, we'd prefer not to enter this world at all....I mean....really. Why does life have to get harder than the giggles of toddlerhood?  Jerry and I have had an awesome life with faith, family and friends...great parents, a home, travels...we've been very blessed....this is why I am reflecting today.

​Once the reality of knowing that "none of us are getting out of this alive" is accepted, we can then try to figure out "why" we are here and "what" our purpose is.  For some...they want to feed the poor...help the sick.....then their are those who want to be the next rock star, famous artist or writer, the richest tycoon...and so on.  For me.....????

​Well. for me, it's to honor to the one who gave me life in the first place.... in all that I do.....thus, love others, bring a smile, share what I know, listen to a crying friend, ...whatever.  ​

​As Jerry grows weaker, I see God as even greater.  Jerry's response to me is getting less and less, however, today he at least responded when I came in by standing up and coming toward me.  I walked him down the hall and into the room where our Monday song fest was about to begin.  I sat him down.  His stare was straight ahead, eyes wide pools of faded blue...his mouth was droopy with a little bit of "sugar water" drooling down.  We held hands with our fingers interlocked and laying in my lap.  There was very little expression during the entire hour of singing.  No sound from him.  No words.  I couldn't help but be appreciative of a God who doesn't demand performance but only wants us to love him.  I couldn't help but thank Him in this time of significant weakness and look forward with hope in preparation for the last days.  The hope of the future is far  greater than the desperation.  Jerry and I both have been secure in that hope.

Because none of us gets out of this alive.....this life is worth living because of this LIVING HOPE that Jesus provided. 

​And as the last song was sung....the "silence was broken".  The residents began to sing the old hymn Victory in Jesus, My Savior Forever, and I felt movement.  I looked down at our hands interlocked. Jerry, who had remained expressionless throughout the hour, moved his thumb. Wrapped across the top of my hand, it began to weakly pulse against my skin.  The song had gotten through.  From the beginning to the end he knew.  His hope is still inside.

Moving Right Along

The fields of wild flowers are blooming red and purple with poppies of salmon.  Such exhilarating fields of happiness! 

​It's a constant challenge to stay "UP" while journeying through Alzheimer Disease.  It's a daily discipline to see the positive and soak in the lovelies of life.  

​When visiting Jerry today, I peeked my head around the corner into the activity room.  The residents were in a circle holding Mexican shakers in an attempt to participate with the visiting accordion player's tunes.  Jerry was asleep in his chair with his eyes barely open. From what I understand, Alzheimer patients sleep a lot.  Whenever they are able to be alert and participate, that is equivalent to a healthy person taking a final exam.  It doesn't take much to completely exhaust them mentally.  These days, Jerry is asleep most of the time.  

I stood there for a few minutes hoping he would see me.  I waved my hands..his eyes opened a bit more.  I kept waving bigger and bigger waves.  After a few minutes, he began to move.  I motioned for him to come toward me.  Jerry is a lovey thing, so when he thinks he's going to get a hug, he usually comes.  It doesn't matter who is at the end of that path.....he's just coming for a hug.  As he came closer, I could see that he didn't know me.  His eyes stared blank as I wrapped my arms around him.  I looked at the aide, "Awe.  He doesn't know me."  My tears began to flow.  

​It's been a while since I've shed tears.  Maybe I've stuffed those feelings down deep in order to survive.  Maybe I am numb.  Maybe I've gotten use to this in my own weird way.  Whatever the reason, it was good to get them out.  The aide took Jerry and cleaned him up...shaved him, changed his clothes and brought him back out looking all dapper.  By now, he was a little bit more alert so we ventured outside for a walk.  The more we walked, the more he picked up his pace.  I let him lead the way and today he led me straight into the tall grass in the vacant lot next door.  Don't know where we were going...but it didn't matter.  Tall grass is good.  

After a 5 minute walk, we sat on the front porch with all the other residents.  I've actually begun to look forward to chatting on the front porch with all these beautiful people.  These are the "independent" living residents.  They share old stories and gripe about how their kids never come to see them, yet, somehow, find the time to use their beach houses..  We've become "old" friends.  ​

I've noticed that Jerry does not last long now.  About 15 minutes was the most he could handle on the porch.  I could see he was getting a bit restless and his eyes were beginning to look weary again.  So, we shuffled on back to the memory care unit where he smiled (well, sort of).  Jerry's smiles are less frequent, by the way.  Not that he's grumpy.  He's just not aware.  BUT, he was aware of his aides...they make him smile.  It's all I care about now....is that he smiles....even if just for a moment.​

Let's see.  Where are those wildflower fields?​

"Let Me In...Let Me In......"

Today's visit was a bit comical.  (At least it's funny once you're accustomed to Alzheimer world.)  We have a new director at Jerry's facility who is trying to spruce up the place.  Have you ever tried to paint family room in a memory care unit?  You have to be speedy on the job because you CANNOT disrupt their world.  Heavens forbid!

​Each day, the majority of the residents wander on down to their little family room and spend most of their waking hours there.  Unless they are at a planned activity they are usually sitting like a covey of birds...all flocked together.  It's their comfort.  It's their security.  Thus, their "family" room.  The room is lined with chairs and sofas along the wall and a TV is turned on to something like Andy Griffith or an old classic movie.  If the weather is nice, the back door is open and they can wander outside to their fenced in yard at their leisure where there are planted flowers and a little figure eight sidewalk.  The family room is divided into two separate areas:  1, the living room and 2, the putzing around room.  (Honestly, most are "putzing around" all the time.)  The putzing around room is where tables are set up with children's games.   The entrance to the family room is through double french doors that pass by the nurses station.

​It's nice to see a new color paint going on.  That "institutional" green was getting pretty musty looking and the mellow yellow is going to freshen things up a bit.  To paint the area where all these precious people sit  (all day,everyday) requires moving the furniture from area 1 to area 2.  Then from area 2 to area 1.  While area 1 is being painting, they sit in area 2.  While area 2 is being painting, they sit in area 1.  Are you confused?  Well, they are.  Seriously, I it is quite discombobulating for them.  When I brought Jerry back from our walk, I could see dear Alice crying.  Alice is the sweetest and most pleasant person in the unit.  To see her cry is pitiful.  So, I took her hand, hooked it up to Jerry's, and walked them both down the hall.  (Jerry was a bit disturbed at this. Not only to see Alicen cry...but to know that I placed HER hand in HIS.  After all, I AM HIS GIRL.)  

Anyway, our travels down the hall, didn't do much for Alice.  She was able to stop crying, however, teared up again unless I kept her distracted.  Then, I saw the cutest thing.  Jerry walked over to the french doors that were closed to the family room.  He could see through to the inside where the painter was painting some "strange new color" and there was no furniture accept a sofa in the middle of the room.  One by one the residents would walk up to the windows of the door and peer inside, as if to say......"someone's in there"  "why can't I go in?"  I belong in there..."​  "let me in...let me in."

That must be why Alice was crying.  It threw her off...out of her routine....​They were all a bit disrupted.  All a bit confused.  In a way, I suppose you could get all sad about it....thinking it's pitiful.  But, dear readers, remember......this is Alzheimer world.  Once they get back in their chairs...they will forget all about it. That should be tomorrow.

Remember FOR Caregivers

I had the greatest pleasure, today, of seeing old friends from swim team days. There were many years spent on pool decks, with stop watches in hand, ​long weekends, and relay races.....all for our daughters.  Jovial Dick and Jerry would stand on the sidelines jabbing each other about politics and analyzing current events,  all while cheering for our daughters who competed against each other.  

As I drove over the bridge to meet he and his wife, I was reminded of how wonderful is is to have friends from "pre" Alzheimer days.  Sometimes,  I've found that the journey has been so long, that it's hard to remember about our lives in healthy times.  They reminded me of how they were in tears, laughing over this funny story that Jerry had told..and, of course, they had to retell the story.  I've received letters from little swim girls, who are now grown up, of how they remember "Mr. Jerry" cheering on the side of the pool and one letter from a young girl who remembers Jerry holding her in his arms after a rubber exercise band snapped and tore her retina.  Jerry adored those girls.

​In the beginning of the alzheimer journey, the emotional, mental and physical demands were overwhelming.  The outpouring of empathy and hugs were like a warm blanket of love.  But as the honeymoon of concerned friends waned...so did the memories.  A new life began....Life with Alzheimers.  

So go ahead.  Help bring back the memories for the caregiver. Go visit a caregiver.  Write them a letter. Remember the funny times..the precious times.  Laugh. It's never too late.   It might make someone's day.  ​

Red Rubber Ball

On Friday, our facility held a cook out as a fundraiser for Alzheimer Research.  ​Usually, the most upbeat visits are when all the residents and their families are together celebrating.  Friday was no different.

Our children and grandchildren came to see their Papa J.  It had been several months since my son, from Los Angeles, had seen his dad, so we anxiously stood outside the glass doors of the dining room where the Alzheimer patients were having their lunch.  ​The aides cheerfully tapped Jerry on the shoulder to get him pointed our way.  The last time he saw Mark, they both embraced with unforgettable sobs of endearment.  Sobs were a good thing in that it meant that Jerry still recognized him, which is so important to the loved one.  This time as Jerry was led closer to us his look was gazed as he stood, tall and frail,  wondering who these people were.

​Each one of us, kept smiling, "Hey, Dad."  "It's me."  "It's Mark."  "It's Amanda."  until we could get a response of some sort.  LIttle McCauley stood thigh high hugging his legs.  We took him down the hall to the outside where all the families and staff were feverishly seating their loved ones and serving up burgers and slaw.  It was a gloriously clear sunny day, perfect for a day in the "park".  It warmed this mama's heart for me to watch my kids serve their dad and gently hold his hands to help him sit.  The kids ran out on the grass and were not underfoot, which was good.

No matter what tricks we used, it seemed impossible to get much of a response out of Jerry.  The aides have said that this is pretty much the way he is every day now.  He's definitely shifted again in his decline.  HOWEVER, their was one trick that we hadn't tried.  Mark went back inside and brought out a big red rubber ball!  As a family, we lifted Jerry out of his chair and walked out onto the grass.  Mark said, "Here, dad.  Catch!" Not only did Jerry catch it, but he immediately tossed it back!  There was a connection! We saw him smile!  He'd catch.  He'd carry it around.  He'd toss it.  He'd walk off with it.  Friends popped out from inside with smiles as they watched the entertainment.  Our cameras were snapping as we tried to capture these moments.  Happy moments.  Red rubber ball moments.  The kind that we scramble for and don't want to forget.  

Real Quick

Ok, I admit I've been struggling with a bit of a funk lately.  We all do it....don't we?​

Today, when visiting Jerry, I was astonished at how he still connects with me.  It blows me away.  Even though he is quite "lost", his footsteps seem to move faster when he is approaching me.  His face (eyes) brighten and his hands still reach out.  The meeting never gets old.  ​I guess all that playing together left it's imprint.

After sitting with him for lunch, which is not the most appetizing thing to do, I asked if he was ready to go.  As if he had been bitten by a cattle prod he popped up from his chair.  I wiped him off, the aide took him to the potty, and then we wandered down the hall to the porch outside.  It was a stormy day and it was really nice to watch the trees swirling and the dark clouds rolling in.  Then, I realized how funny and bizarre the conversations are at elder care facilities.  At first, it was just Jerry and I sitting on the double wicker sofa.  Then a gentleman with his cane came to join us.  He is from Boston or somewhere up north and has a quick and sharp witted voice.  He talks as if he's in front of a sales presentation.  He'd say....."It's a lovely day.  Raining.  Hope it's not wet."  Then when another little lady came out, he pointed to the other side of the patio and said..."They are playing craps over there.  You may want to join them."  She said, "I don't play craps."  Then he responded with, "Well.  So you probably won't want to join them."  Course, there was no crap playing on the other side.  There actually were not people on the other side either.  ​

Then, I got to wondering.  These people probably are so fine in their own world.  They have no idea that the Boston marathon was bombed, nor that there are terrorists on the planet.  They are clueless about North Korea or Afganistan. They have no idea of the many stresses in the world.  That's why they are so dad gummed healthy!  No stress at all.  The most stress they have is whether they will get  a generous portion of ice cream at lunch or not.​

Seriously, Jerry and I sat in silence as I listened (probably Jerry was listening too) to the gentleman and his "crap shooting days."  As each little person came out to join us, I captured a part of their existence.  And you know what?  They actually understood and related to each other.  Under all that aging gray matter, there is an instinct that relates.....such understanding and tolerance and lack of judgement about how silly they may sound.  Otherwise,  nonsense...seems to make sense.

Go figure.  ​

Follow Up

Since I was in such a state of frustration in my last post, I thought I would follow up with a few more comments.​  First of all, I am not going to go postal....although there are times when I can understand that level of frustration.  Second of all, I am not interested in becoming political.  Unfortunately, too many people spout out their opinions in a political fashion but really do not know the facts.  People seem to be eager to jump on the bandwagon on both sides and believe every slanderous thing about the "other" side.  Nope!  I"m not going there.

​One thing that this Alzheimer journey has taught me is that no one entity can be the answer.  Not government, not churches, (yes, I said the "church")  not insurance companies, and so on.  All of these things are man made organizations that are businesses.  They all must have rules and boundaries and budgets. Some are run very poorly and some are run with relatively good success.  AND, I definitely do not believe that kindness, generosity and sacrifice can be mandated.  So, if it looks like I've lost faith in institutions and politicians.....I HAVE....because their motives are not always pure.   From this journey, I've realized that I can depend on NO ONE person or entity.   You can, however, buy a painting though. (ha!)

​Here's what's positive!  What I have discovered is the delight in seeing how God moves in the hearts of men (those who believe and those who don't).  People who you would least expect.  People who were chosen by God to meet a need.  I've seen His provision on a day to day basis and often kick myself when I waste my time in angst.  From the friend who essentially rebuilt my retaining wall with his bare hands (and an excavator), to the latest act of kindness.  ...a surprise of utmost thoughtfulness...when I was handed a beautifully framed shadow box with my old used pallet suspended in it.  Awe....let's say it in unison....AWE......and I've seen answers that have come when I thought I had left no stone unturned.

​What I've learned?  To depend on Jesus's example of love, service and sacrifice.  In the Old Testament, God gives two commandments.  Love the Lord your God with all your heart, with all your soul and with all your strength. (Deut 6.5) and Love your neighbor as yourself. (Lev. 18.19)  Centuries later in the New Testament, Jesus follows up with his demonstration of that love by taking on the life of a servant to the point of the ultimate sacrifice.  (Phil 2).  His walk on this earth was not about large corporations, nor government institutions, entitlements, nor the "business" of church.  His walk was about living a life of humility, simplicity and loving servanthood, then to pass it on to the next generation.  It was to provide the ultimate sacrifice so that we would see the HOPE of one day residing in the presence of a Holy God.   ​That is why I can rejoice in Jerry's future!

​CAN YOU IMAGINE A CULTURE THAT LIVES BY THIS EXAMPLE????  Service and sacrifice that is from the heart?  What a wonderful world it would be!​  That's a song, isn't it?  

It's TIme to Get Serious

I recently mentioned to someone that I had not updated the blog because I couldn't think of anything positive to say.  After a bit of wrestling I came to the conclusion that I have a lot of positive things to say.​  Jerry and I shared a life filled with blessings since I was 17 and he was 22.  People say he robbed the cradle and I'm glad he did.  We were just children and have shared an incredibly rich life!  I would not trade it for anything.  Even though some people may not be able to grasp it....we are still connected and are experiencing a type of love that many will never be able to understand.  For this, I am overwhelmingly grateful.

​The journey of Alzheimer disease is not for the faint of heart.  Jerry has now reached the level where I had hoped he would never be.  That is the level where he is "napping" most of the time, slumped over in a chair and most of his waking hours are spent in a state of blank stares.  Years ago, I saw patients like this and thought. "Oh, Jerry's not like this...he's not at this stage yet."  But, I'm sorry to say that he has now reached this new place in his progression.

I know this is sounding very depressing and that readers are beginning to turn the post off.  It's understandable.  Like I said, "It's not for the faint of heart."  ​

​Here's  where we all need to "man up".  Jerry is not the only person in this condition.  There are many suffering (actually, it is the loved ones and caregivers who are experiencing the  suffering).  Not only are they losing their loved ones, but they are losing everything!  Here's where I am totally frustrated with how we care for people with these critical health needs.  ​It seems we live in a society that no longer values providing a quality education for their young, nor taking care of its sick and elderly.  It's every man for himself where the very wealthy can afford their private care and the indigent are on government aid.  Those in between are screwed.  Because of red tape and loopholes many private facilities will no longer even take medicaid patients.

​Jerry is currently in an assisted living facility with a special memory care unit.  His care is primarily custodial care.  This means he is not capable of doing anything for himself and requires 24 hour care for even his most basic needs. To put it bluntly, he cannot brush his teeth nor can he sit on a toilet.  He cannot get up out of bed nor lie down in the bed without assistance.  Do you get my drift?   He can, however, get up from his chair and come to me when he sees me.  He still recognizes me when our eyes meet and I am committed to my last breath to see that he lives his last days surrounded with love, a feeling of security and not in a state of fear or abandonment.

Jerry was a very responsible family man and provider for our family.  He did all the right things....went to school, sacrificed, worked hard, saved.  I could not have asked for a better and more caring husband and father for my children.  But the cost of this kind of illness is devastating and there are very few resources for assistance.  The "A" word is shunned.  Everyone knows how devastating it is..but many say their little platitudes then turn a blind eye..hoping it will never happen to  THEM.

WELL  PEOPLE!  WE"D BETTER WAKE UP!!!!!  Very few people can prepare for this kind of catastrophic cost.  It is only by the grace of God that we've survived for 13 years.   And if you've been a hard worker your entire life and earned too high of a social security check...you will NOT get any help from the government.  Neither will private medical insurance nor government Medicare  touch you.  So you'd better have thousands upon millions in your IRA accounts. When I say check "too high", I'm talking $1500 per month in social security.  If you receive more than that...there will be NO government assistance in an assisted living facility.  You might, however, possibly receive assistance in a skilled nursing facility or "nursing home."  MAYBE.  The rules for skilled nursing are different.  Which actually costs the government MORE money.  Go figure!

One wonderful gentleman at Jerry's facility is over 100 years old and has been there for many years.  His social security check was evidently below the threshold so he has been able to be supported my medicaid.  Recently, however,  he received a "cost of living" raise on this social security check which put him $14 over the limit.  He will no longer be able to receive medicaid  assistance for the assisted living and will now need to be moved to a skilled nursing facility that will accept medicaid.​  You got it!  In order to have medicaid pay for his care...he will have to now move to a MORE EXPENSIVE facility, which will NOT be able to meet his needs...and will cost the government MORE.  Figure that one out.....$14 verses $$$$$$$.  Your tax dollars at work!

​A nursing home for Jerry scares me to death.  Because our funds are running out, I am trying to prepare for the next step.  IF I put him in a nursing home, we may possibly be able to receive some help.  (the jury is still out on that.)  I've visited a few skilled nursing facilities in the last couple of weeks.  First of all, I will be balling my eyes out if I have to move Jerry from where he is residing now.  I am so confident in the care he is currently receiving.  He is secure and I know he feels loved and cared for.  THAT IS HUGE!  Where he lives there is a true sense of family.

​The most recent nursing home I visited was beautiful.  It was a brand new "state of the art" facility with clean, tastefully decorated rooms. dining rooms and exercise equipment.  I mean, it was like a resort (sort of.)  My first reaction was a SOCK IN THE GUT,  "he'll feel all alone and abandoned."  This place was so large that even I got lost.  "How could a dementia patient ever survive?"  I thought.  How in the world could a nursing staff even know where the patient was...much less, know if the patient needed to be "pottied?"  This seemed to be a facility for "healthy elderly" or for those who are wheelchair bound and "contained".  The dementia patient has totally different needs.

Unless there are tremendous medical needs, a dementia patient primarily needs assistance and stimulation.  If not, they will either sit, slumped over for hours on end in wet diapers, or will wander up and down hallways and be at risk of falling.  They need constant supervision, like a child in a play area.  (Yet, they cannot be treated like a child.  They need to be treated with the respect they deserve.)​  Who knows.. maybe that's how people think they should be treated....just let them wander!  Let them sit in their #@#$@#$.....they don't know anyway.  BUT, THAT IS NOT TRUE!  AND THAT IS NOT CARE!  AND THAT IS NOT THE WAY ANYONE SHOULD BE CARED FOR!  By the way...in some cultures the elderly are actually treated with resect.  Hmmm!  What a concept! (Remember YODA?)

​Can you tell I'm just about over the edge over the injustice of it all?

​​I could go on and on.  I know this post has gotten way too long.  It's just time that we change some of these antiquated laws ​​to be more efficient in the way we treat alzheimer/dementia patients yet be more effective in the cost of healthcare.  Our system is terribly broken.

In the meantime, if we do not get serious....we'll all be in eldercare factories before we know it.!  IT'S PAST TIME TO GET SERIOUS!  

2013 - Unexpected Journey

​Feelin' Easy.  A few from my house with my doggie.

18x24 oil on canvas

As I was riding my bike at sunset today, I looked up and noticed the jet streams against the Carolina blue sky.  It was a particularly clear sky with fluffy puffs of white clouds and  streaks left behind by the  planes headed north and south.  I couldn’t help but wonder what journey those people were on.  There were many sunsets when Jerry and I sat on the deck watching planes.  White jetstreams mark the sky at different altitudes each morning and evening along the east coast corridor.   Planes full of people headed to New York to settle a business contract or take in their first Broadway show or to the Carribean on their honeymoon, to Miami to catch their cruise, or children going to see their grandparents. The journey that we are on was unplanned and unexpected.  Jerry was a handsome, 52 year old business man, father of three who loved Alabama football, his momma, and his church.  He took his roll as provider with great seriousness and never saw it as a burden.  He loved to succeed yet was not interested in accolades.  He loved to debate politics and give his children advice on business, but mostly he loved  the comforts of home with his wife by his side. His family was his total commitment. He would always be there.

I find myself, riding my tangerine beach bike by myself these days.  It’s the easiest way to “walk” the dog as she runs along side.  Like most couples, they eventually must cross the bridge where one becomes sick and the vow “til death do us part” becomes a reality.  That show stopping day happened when the doctor announced in his rather matter of fact voice, “You have early onset Alzheimer’s disease.”  That was the day our world ended ...or so I thought.

These thirteen years have been a training ground.  I’ve learned to love.  I mean truly love.  Love in a way that is not glamorous but is beautiful.  I’ve learned to endure.  I’ve learned to accept.  I’ve learned to change and give..or is it give and change.  Because it is in the giving that I have changed. The duration of this journey is so uncertain.  Each individual declines in their own way.  There is no timeline.  Can just take one day at a time and be grateful for it.

For years, I have contemplated selling my house and moving to a less isolated area but never felt the “go ahead” in my spirit.   There is no one to bounce these thoughts off of.  I know of no one who is in my shoes or that has walked in them before me.  All I know is that my spirits are lifted when I am in sunshine, see smiling faces and engage in meaningful conversations.  These things fill my tank when I am running on empty.

Being an artist keeps me isolated a bit too much.  But I am thankful for that gift and it is what keeps my mind occupied and productive.  Still, my favorite thing to do is to visit Jerry.    He is still the one I’d rather be with.  It doesn’t take long, however, to realize that his attention span doesn’t last long.  But, I’ll take what I can get.

WIth all this said, I am announcing a 2013 decision.  My house is now on the market.  It’s as if a still small voice said, “It’s time.”  I’m looking forward to what the new years brings and where it takes me.  The journey continues.

Happy Hour, Way Too Happy - An Alzheimer Journey by Sue Scoggins

Screen Shot 2013-02-19 at 7.27.50 PM

Ok.  So it's not at the Royal Sonesta in New Orleans or at BJ's in historic Pasadena during the Super Bowl.  Seriously, I found this Happy Hour to  be so cute and funny.  Volunteers!  They are so great!  Once a month this couple comes and provides entertainment for happy hour.  He sings.  She plays the piano.  The pretzels and O'Doul's are passed out.  Non-alcolholic wine is poured for the ladies.  It's just so cute.  (Call me demented.)

Remember, Jerry is in a facility that is for assisted living folks.  That means, most of the residents are fairly independent and require only a little help.  Jerry is in a locked memory care unit in the back.  It's not locked because it's a prison.  It's locked for their safety.  They get an extra special amount of care.  They cannot do for themselves.  (Seriously.) They cannot brush their teeth, feed themselves, dress themselves..they cannot even sit on the potty.  Yet, they still have an essence of "self" and  are treated with dignity and respect. They are family.

For happy hour, the residents in the memory care unit are brought in with the assisted living folks in the front.  It works out great and there seems to be no judgement at all regarding anyone's capabilities.  It's a beautiful thing to see such acceptance.

Back to today's happy hour.  When the entertainers said they were going to do love songs....I thought I was going to gag.  Not again.  Sappy love songs!  Don't you know what you're doing?  But, as Jerry drank his O'douls and I snuck a swig, I could hear the "others" singing.  I could hear Andy Williams', "Moon River, wider than a mile.  I'm crossing you in style someday".  These people were singing along.  (at least some of them.)

It's not your ordinary happy hour.  While the activity director put the brakes on a wheelchair and the nurse replaced the oxygen tank for someone who had run empty....she gave her a kiss on the forehead..and continued to sing along...with those bluesy love songs...."The more I see you...the more I want you", written by Harry Warren and Mack Gordon and Stardust, sung by Nat King Cole.

Guess the reason I didn't get all weepy sad was because Jerry never much cared for those romantic songs.  Now, if they had sung "Alabama's fight song" I suppose he would have responded.  But, as it was....I was perfectly ok with his drinking his O'Doul's and staring at me.  I just couldn't help it when "I'm in the Mood for Love" began.  I looked into Jerry's eyes, sarcastically raised my eyebrows and stroked his cheek and sang.  I saw a slight grin.  I think he caught it...for a second.  I could just see a slapstick comedy coming on.  But, I refrained myself.

There was a time, though, that was the "pièce de résistance".  The perfect moment when one of the crotchety elderly women yelled, "DO YOU HEAR A THING THAT THEY ARE SAYING?"  It was a moment to remember.

No pun intended.