Out for Pizza

Kudos are in order for a great  little pizza place, named Paula’s Pizza in New Bern, North Carolina.  The reason I mention them is that they are so accommodating to the Alzheimer residents at Jerry’s home. Once a month, the activity director and her assistant take those who are able on a little outing for lunch.   The residents are patiently lined up in the back hallway, rolled out a few at a time to the bus and taken to their seats.  Those who can walk, sometimes help with the others who are in wheel chairs.  Each resident is loaded with care, wheelchairs, walkers and all.  It's at least a 45 minute procedure.  Once everyone is seat belted in,  they truck on over  to Paula's Pizza for  lunch.

Paula’s Pizza has tables all lined up, ready for the crew to arrive.  The unloading is quite a spectacle, but the restaurant is very accommodating.  Each resident is treated with respect and dignity as their order is patiently taken.  With the help of the staff, it's mind reading at it's best!   Mini pizzas or spaghetti dishes arrive piping hot with little side salads.  While everyone needs their food cut, but most of them can feed themselves with only a little prompting.  Some dementia patients, like Jerry, are able to feed themselves physically.  Jerry can hold a fork but just needs reminding of  what to do with it.  If the food is good, he'll eat it.  (If it's meat and vegetables, he'll ignore it.  Go figure!)

Outings really can't last for much more than an hour and a half.  Scheduling is essential because of routine, bathroom needs, etc.   Once pizza time is over, the activity director pays the bill, while the other staff members begin loading the bus again and off they go, back to their home.

These outings are a welcome change to the daily routine.  It would be easy just to let the residents roam around the halls, day in and day out.  Each new activity brings a little energy to their day.  WORK best  describes the efforts of lining them up, loading them, unloading them, ordering, feeding, loading and unloading again, but it is worth it.  It's important to givie an alzheimer patient as much "normalcy" as possible in their journey.

New Start Up - Book II - an Alzheimer Journey

My daughter and I were talking the other day  about how we felt all by ourselves when Jerry was first diagnosed.  I suppose we were since he was only 50. The picture in this post was taken about 3 years into the journey, when he was 53.  We had barely heard of Alzheimer disease, much less known anyone with it.  Now, 13 years later, it seems there is hardly anyone who has not been affected by this disease or know of someone has it.  People come to me in the early stages wracked with concern, overwhelming sadness and a sense of helplessness.

So, I’ve decided to start this blog up again.  It has taken me a little over a year to feel healthy enough to continue to writing.  Now, since I’ve been walking the road for so long, I feel it’s my duty to share what I know.  This time it will begin with what I see on an every day basis with Jerry in his memory care facility.  I’ll call it his home.  That’s just what it is....his home, where he has lived for 15 months.

Let’s start with today, April 12, 2012.  I went to see Jerry on my way up to Raleigh.  I arrived around 11:00.  Whenever I walk down the hall, on the way to the memory unit, I am greeted with energetic  smiles from the staff and residents in the assisted living section.  The feeling is of a warm, comfy home.  There is a button I press that unlocks the door to the memory unit.  A soft “ding” goes off when I open it.  Once inside, Jerry happened to be coming around the corner.  He had just been bathed and was dressed in a soft yellow henley and a pair of jeans.  The minute he saw me, he stretched out his arms and came toward me.  We must have held tight for atleast 10 minutes without moving.  Behind him was a beautiful woman who’s arms were loaded with towels and his toiletries.  I introduced myself and asked her name.  “Haddie", she said.  I thanked her for doing such a good job getting him bathed...that he felt so good and looked so good.  She smiled and said, “Thank you. I came late today.”  Jerry, then,  reached over and gave her a tap on the shoulder as if to say, “She’s good.”

Haddie  looked at him and said, “Jerry.  Who’s this?  Is this your wife?”  His eyes looked past her in the opposite direction of where I was standing.  She guided them back over to me and said again, “Jerry.  This is your wife.  This is your wife.”  He was delighted to see me.  (again) Then the three of us continued down the hall.

It turns out that Haddie is the hospice CNA that comes twice a week. She told me she usually comes around 5am, bathes him, then lays him back down and that he is always willing.  No doubt her soft and compassionate demeanor enables him to be a willing participant.  I cherish these hospice people and anyone who works with dementia patients.  I hold them in such high regard.  This is a thankless job and not very glamorous.  Yet, there is no more important work than to help those who cannot help themselves.  The fact that I know Jerry is well cared for has saved my life and provided blessed assurance.

Why I Paint - an Alzheimer Journey

At the young age of 50, my husband was diagnosed with Early Onset Alzheimer disease.  Declared 100% disabled, it was the end of our lives as we knew it.  This beautiful man, so full of life, patriotism,  and eagerness to care for his family, suddenly became the one who was in need.  He was way too young.  Determined,  we continued life as normal as possible with only a few modifications at first.  Friends stuck by our sides.  But, over the years, our lives changed.  New friends came into our lives.  I must say that God has provided through the entire 13 year  journey.

Seeing the writing on the wall, I needed to prepare myself for caring for him.  I left my job, we downsized, simplified our lives, and spent every moment together.  Inside of me was always this urge to create.  I began to paint.  Jerry would watch me .  He was my biggest fan, bringing visitors into our garage to show them what I was doing.  I knew nothing about painting, but it was the beginning of a new me.  When I had my first solo show, I couldn’t help but weep at how proud he would have been.  There I was....a fulltime artist!

Today, my dear Jerry is in a special memory care facility.  He sometimes knows me.  Sometimes not.  But each time I walk through those doors to visit, he shuffles those long legs and runs to me with open arms.  It is a love story to be told.  I tell him about my painting and he smiles.

On April 26, at Scout and Molly’s in Cameron Village, Raleigh, North Carolina, I will be hosting a solo show to benefit the North Carolina Alzheimer’s Association, in honor of Jerry and all of those who have been affected by this disease.   My paintings will be up for sale and I will be there for a meet and greet from 5p-8pm.

Easter

It has been 14 months, since Jerry has been living at his new home.  I can’t believe it has been that long.  There are some days when the days are endless and some that are delightful and actually happy.  Last week, on Facebook, I posted a short update on Jerry stating he didn't know me.  I couldn't help but be a little melancholy as I watched  giddy Spring break vacationers anticipating their week at the beach.  The sun was shining and the flowers were beginning to bud but I wasn't feeling so happy inside.  "It's just not fair!" I thought.

Spring is here and Easter is rapidly approaching.  Easter, to me, signifies new life. It is my absolute most favorite holiday.  New life is evident in nature and it is demonstrated in Jesus's resurrection.  Hope!  New life!  A new beginning!  Yet, while I await a bright, carefree future that will be a respite from a heavy heart, I realize that new life ahead will not be without it's pain and anguish.  Even Jesus, who was willing to complete his mission, asked his Heavenly Father, "My Father, if it is possible, may this cup be taken from me.” Matthew 26:39.  I prayed that many times in the beginning of this journey thirteen years ago…"God, take this cup away from us.  Please!"

In spite of knowing this is our cup to keep, I will say, that it has not gone without its rewards.  Yesterday, while visiting Jerry, we met with our Hospice Chaplain for the first time.  Jerry, while his mind is sporadic at best, is still  able to get around in his 6'4", 145 pound frail body.  As we sat in a circle with Pastor Jim, he pulled out his guitar and began to sing Amazing Grace.   Jerry, with his gentle blue eyes, looked over toward me. His eyes rimmed with tears and he attempted to join in.  It was a real connection.  A GOLD NUGGET.  After we prayed together, we stood up and I pulled on my jacket.  Jerry reached over and gently helped me straighten it.  Pastor Jim remarked, "Awe, look.  He's helping you.  So sweet."  ANOTHER GOLD NUGGET.

So, while this is not a journey I would have selected, I am grateful.  It keeps me grounded and mindful of what really matters.  I hear the words of songs such as:  “He’s my brother, he ain’t heavy.”  “It’s me, the one who really loves you.”  So many with themes of endless love.  I cannot express the gratitude of such a rich relationship.  Treasures beyond imagination.  Yet, hope for a future.  I am so blessed.

The Road Is Long with Many a Winding Turn....

Life in limbo is, well, hard to explain.  Can’t move forward.  Can’t go back.  I bought a fancy bike and ride for miles and miles now.  Figured it is what I have to do to survive.  Every joint aches!   (We’ll see how long it lasts.)  Jerry has adjusted well to his new environment.  That makes it easier for me to handle. We had a little glitch a couple about a month ago.  Hurricane Irene came through and his roommate passed away.  Stress levels were high and the “inmates” were restless.  However,  most of the staff handled it well and I was very impressed how things were handled in the long run. There are a lot of “firsts” coming up.  There was the first night alone, the first time at church alone, the first time at a social  event alone, the first communion.  The first trip to see the grandkids alone.  The first  previously coveted “girls night out”.  The holidays are coming up.  The first Thanksgiving.  The first Christmas.  These are somewhat of a dilemma.   Do I stay with him?  Do I take him out?  Do I have a “mock” holiday with him and go be with the grandkids...knowing he is the one who is alone on the holiday.   Will he even realize it’s the Christmas day?  Where will he worship?  Where will he spend Christmas Eve  and will he have a candle light service.  (Uh oh, I’m getting weepy.)  I think I’ll just run away to Hawaii.

One thing I know for sure.  I am not alone.  Yesterday, at church, I decided to try a women’s Bible study.  I recognized a few of them.  All ages;  from 30 to 80. Didn’t know too much about many of them but I knew there was a lot of wisdom and were a lot of life stories in that room.  When I sat down, they welcomed me as if they knew me.  Some knew my story and had watched me with Jerry for years.  Even the pastor’s wife came over and gave me a hug.  It was as if they had been waiting.  The woman sitting beside me was my age and had lost her husband unexpectedly shortly after moving here  5 months ago.  She is an artist, too, from Maine.  We were traveling a similar path but different. We both experience crazy mood swings that leave us in puddles, but with resilience, and faith in God, both of us are trying to reinvent ourselves.   Others have grieved and survived. Others had never felt grief of this kind of magnitude, but attended class because their husbands do not go to church.   We’re beginning a study on Heaven.  Imagine that.

I brought Jerry home last week for the day.  It was the second time since he moved to New Bern  in February.  It’s hard to believe that it’s been 8 months.  He has lost so much weight and now weighs 150 pounds.  He gone from a size 36 to a 32 inch waist.  There have been days when it takes a while for him to realize who I am.  Initially, when he sees me, he still comes running with tears of joy.  Then, he fades out.  Then he resurges.  The optimum visit is about two hours.  Any less than that, I think he feels short changed.  Any more than that,  he  becomes fatigued.  During  the drive home, I asked him if he knew he had a beach house.  He said, “No.”   I wondered how he would react.  I picked up his favorite shrimp basket and we had a relaxed lunch out on the deck.  Montana was at his feet and he would occasionally reached down and give her a tap on the head.  Then, while still on the deck, I pulled out my shears and gave him a haircut.  He really needed it...and those eyebrows. Whew!  Those things definitely have not gotten any skinnier!  Once I got him all spruced up, we watched a run of Everybody Loves Raymond, then we rode out to the beach to see if we could find some dolphin showing off in the water.  He becomes a little anxious after about twenty minutes of any activity, then begins to pace.  Once our twenty minutes of dolphin viewing was up...I could tell he was ready to go.

At that point, I figured I should take that que to get him in the car and head back.  It’s a 45 minute drive to New Bern and it was torture.  I was the first to cry.  Then he started.  “Turn around.  Turn around.” he cried.  Whah!  Damn!  What had I done?  Get a grip, Sue!   Somehow, I managed to divert his attention on a cheeseburger.  “Let’s get a cheeseburger when we get back.  "Are you hungry?”   I asked.  That seemed to do it.  I scrambled to fill the drive with funny talk from his fraternity days...how he drove a VW beetle into the front door of the frat house at Alabama.  That brought a smile and a “BAMA".

Once we arrived in New Bern his anxiety seemed to roll away and peace came over him.  I could see he truly was “at home” there.  My drive home was, well, numb.  It usually is.  It’s an expected response that I’ve gotten use to and after the night has passed and I’ve eaten every comfort food in the house, I wake up to a new day.  Ready to paint, bike, walk, or move forward in some sort of fashion.  We’ve still got a long way to go.  Three days will pass and we’ll visit once more.  The first is to cry, the second is to be normal, the third is to anticipate seeing him again.   "He ain’t heavy, he’s my brother."

Treasures in the Here and Now

In my mind, I'm about 38 years old.  My body feels like it is about 80.  Course, that's only a guess because I've not experienced 80 yet. I didn't realize how tired I had become.  For now, I've decided, NO LONGTERM COMMITMENTS for a year.  This year will be focused on getting myself healthier physically, mentally and emotionally.  Being a caregiver for twelve years was an experience that I cannot really explain.  It was life….the way it was; a gradual decline into a very small world.   The best part was that our relationship was so "perfect".  Not perfect in the since that we had all the material things or that everything "went our way", but, it was perfect because we were "one" in this battle together.

I've learned so much about the meaning of life….or what it means to me.  I am surrounded by impending death so much of the time.  Especially when I go see Jerry.  It makes me think about all those years trying to accomplish things…..a life that spelled out success:  an education, high end job, a title, 401k's,  accomplished children, material wealth: two homes, two cars, boats (bought and sold), occasional vacations, and so on.

When I go see Jerry, I see accomplished people reduced to "nothing."  Their nothingness is not on the inside, but it is on the outside.  Their lives have been reduced to a small hallway, a dining room, an activity room, and a bedroom that is shared with another dementia patient.  Their insides, however, are not nothing.  Inside and behind those eyes are wonderful human beings that, no doubt, were quite accomplished.  Hilda, for example.  Hilda recently passed away.  In the early 1900's, she was a college graduate and civil rights  activist who was well travelled and spoke several languages.  Not many people knew about the accomplished life she had lived.  And who would know that Jerry's roommate is an accomplished dentist, yet, now can barely hold up his head, much less those hands that once performed such delicate work.  There are many stories behind those eyes and many gems to be treasured in the memory care unit.

On Sunday, it was blindingly bright outside and when I opened the door to the dark  hallway, I could see Jerry's long lanky silhouette running towards me with arms open wide. We embraced and I could feel his bones.  My arms  circled his waist, it seemed, several times.  The nurse looked up at me with her dark dreamy eyes, and in her soft voice said, "He's such a gentleman."  At first she thought she was the only one who noticed.  But, when she was talking with one of her co-workers they both noticed how he would stand whenever a woman entered the room.  They also noticed how he did not like conflict.  She said that when he hears anyone quarreling, he comes in and makes them laugh to break up the tension and that Jerry is the only one who can convince Larry, his roommate, to come down to the dining room at mealtime.

I was quickly reminded of how, even in this "mindless state",  the spirit of God is still evident.  Oh, how I love his eternal spirit.   Accomplishments have faded away…they seem so trivial now.  We are now in the "here and now of the human spirit." The servanthood of Jesus, even to the point of death, left his impact on Jerry and is in his core. Twelve years ago, Jerry asked, "How do you have a relationship with God if you've lost your mind?"  God is performing at his best and this relationship of peace, gentleness, and service is the  relationship in it's purest form.

Father’s Day

Many times, I’ve been tempted to post.  Many times I realized it would just be too sad.

It’s been 4 months now.  I’d like to say it’s easier but it’s not.  People ask, “Does he recognize you?”  Yes, he recognizes me.  I grieve over him and tears can rain down my cheeks in an instant.  All those months of preparing to place Jerry didn’t prepare me at all.  There are times when he doesn’t know my name.  In fact there are times he comes running to me calling me, “Mama.”  There have been times when he looked shocked when our eyes met.  Shocked as if...”Is this you?”  or “I’ve been with you for an hour now...and “I don’t know you.”  But, Jerry knows who I am.  It annoys me when well meaning friends, in their loving way, try to convince me that his is not the Jerry I’ve always known.  In his own way, he still is.

Today was Father’s Day.  I was happy to watch my grandchildren as they presented their dad the album they had made.  I saw those pictures of a delighted and happy dad celebrating times with his boys  throughout their lives.  Those boys are the light of his life.  Our children were, and still are, the light of Jerry’s life.  I remember those wonderful moments  of bonding.  Around noon, we all went to see Jerry for a picnic.  It was the first time my oldest daughter had seen him in about a month.  When I brought Jerry to the park, he saw someone familiar walking towards him across the parking lot.  He held out his arms and  sobbed as he held his 36 year old little girl and her babies.

No, Jerry may not be congisant of everything, but he still knows those who are close to him.   No, he may not be able to hold a conversation or care for himself, but he can still give with his spirit.  He still feels and smells  like Jerry.  His blue eyes are still blue.  Weighing 150 pounds now,  I have this insatiable need to hold his hand and  stroke his soft skin, as frail as he is.   It’s the same feeling of our newest grand baby.  ...soft, unmarred, gentle.  Yes, I am still attached.  There are those who say that I need to accept that this is not the man I once knew.  In some ways he still isn’t, but in some ways, he is.   In some ways he’s even better.  Kinder , gentler and more soulfull.

I am thankful for those who care for him.  They are angels sent from heaven.  Speaking of heaven.  When Jerry and I were silently stopped at a traffic light the other day, he suddenly straightened up and with a bright countenance said, “God!  He is good!”  Those were the only words he said that day.  I believe the spirit of God is communicating with Jerry in ways that are, well, “soulful and spiritual and well, Godlike.”

So, no...we cannot  let go of 41 years in 4 months.  We will take what we can get and we will slowly adjust.  Each moment is a valuable nugget that must be stored away as treasure.

Recovery and Emerging LIFE - The Follow Up - an Alzheimer Journey

Yesterday when I walked into Jerry’s new home, I stood in the foyer by the reception desk.   Immediately upon seeing me, the staff said, “He’s in there!” and pointed to the window that looked into the activity room. I peeked in and there I saw Jerry, smiling and dancing with a group of women all around him.  He was grinning from ear to ear, spinning the doe-y eyed ladies around. Have your ever ridden the Texas Cyclone?  It’s probably the oldest wooden roller coaster in the United States, has none of those fancy padded holsters to hold you in.....just a seat for two with a little bar that comes down over your legs.  Jerry and I road that coaster years ago when we lived in Texas.  He loved it.  I HATED IT!  Just when you thought you were  “safe” from the deathly downfall, you come around the curve and down you go again, leaving your sanity up top behind you.  That’s the way these two months have been.

It’s been two months and eight days.  Never, have I doubted that this was the right decision for Jerry.  However, there have been unquenchable  moments of  tears.   It was like being in a cocoon,  trying to break out, but no amount of pretending and positive attitude took away the underlying sadness.  I’ve been to see our grandkids twice and witnessed the birth of our fifth boy.  Beautiful times but without my soulmate to share them with.

Today, I think, I realized that we have broken through.  Seeing Jerry so happy and well adjusted pumped up my heart again.  The dance therapist saw me peeking through the window and waved for me to come in.  When I walked through the door, Jerry did his usual cry and wrapped his arms around me.  Then, we were urged to dance together.  "Eye contact!  Look into his eyes!"  she said.  “Touch and music are two things that remain in tact.”  So, there we were, like Fred Astaire and Ginger Rogers, dancing in the middle of the circle while the other residents looked on.  “Awe.” they sighed.

By the time I left, the group was boarding a bus to get ice cream.  The local ice cream parlor takes orders ahead of time and when the bus arrives, they bring it out to the bus and serve everyone.  Jerry and I helped wheel everyone out, no one was going to be left out.  Jerry was the last one on, but before placing his foot on the step, he looked over at me, walked over and kissed me goodbye, then turned to get on the bus.  I said, “I’ll be back soon.  I love you.”  He responded, with a secure, “Ok.”

So, this morning, Montana and I walked with a spring in our step.  In fact, I noticed I even jogged a little bit.  (A VERY LITTLE BIT.)  She actually was pulling me while she ran after the geese and I bounced along behind her in my rubbery crocks.  Recovering and  feeling new life emerging,  I think we’re going to make it.  It’s been 69 days....but who’s counting.

The Last Post

During the  year of writing this journal, I have discovered the joys of writing.  More than that, I have discovered the treasures of knowing so many caring people around the world.  It’s  been a great renewal of belief in the goodness of mankind.   Your comments  have helped me and have helped others who read them.   Too many people are experiencing the trials of this disease.  I read in a recent survey that the greatest health fear among people today is getting cancer, number one, and getting Alzheimer disease, number two.  The last 12 years of living in Alzheimer world have been an indescribable and unbelievable ride.  Before the age of 45, I was totally clueless about Alzheimers and the mental, emotional, and financial hardship that it brings.  It has been a time of renewal and deepening our relationship with God. Do I wish that we never had to experience this?  Of course.  It grieves me when I hear anyone experiencing this type of loss. I just received a message from a friend in New Zealand.  This is what she said.

"Grief (for you have lost something/something has died) is so painful - something to live through like sludge.  You are so special and Jerry is so special - I hope you see rainbows every now and then before the sun comes out in full and shines and shines.”

The years have been good.  They could have been so much worse.    I just hope and pray that whenever you meet anyone who is experiencing Alzheimer disease, you will now be able to somewhat relate and then minister to them.  I am hoping that these writings have given you a better understanding. I am hoping that no longer will people devalue or avoid those coping with this illness.  I’m hoping that those who have read this will be able to give a warm little smile and remember that even the slightest thoughtful thing can “make the day” of an Alzheimer caregiver.

I hope these writings have brought humor as well as tears.  (Remember the water hose?)  And, most of all, I am hoping that strength, provided by our loving Heavenly Father, has shown through even the darkest days.

I am keeping the blog up indefinitely.  Just like a good book, it can be picked up and read at any time.  And if you ever know of anyone who would like to contact me, I’d consider it a privilege to hear from them.  So for now, I am saying toodle doo.  I love you and I thank you for being you.

Sue Scoggins

Bitter Sweet

I like dark, bitter sweet chocolate.  Notice it’s called bitter sweet.  The initial bitter taste causes the latter sweet to be enjoyed.  The hint of sweetness is not too overpowering, but rich. No matter how many times I go to see Jerry, I wonder whether I’ve done it right.  Today, I took two friends to celebrate his birthday.  His friends at his new “home” had already sung Happy Birthday to him.  We took him balloons, his favorite peanuts and his buddy, Bruce, made him a chocolate pie.   Jerry was tearful most of the time, but between the three of us, we could keep him diverted.  At first, he was a little overwhelmed by the noise in the BBQ restaurant, but he really enjoyed our walk on the river.  It took a while for him to get use to being around us.  The best part of the visit was when Bruce got out a small putter.  He and Jerry tried to putt  golf balls into a small wooden “hole”.  Jerry made it in four times in a row!  That was the sweet.

I can’t help but remember Jerry’s voice, saying, “Please.  Please.”  He said that when we were headed back to his “home” after we had spent the day out and when I was about to leave.  “Please.  Please” haunts me.  He was begging me not to go.  He’s compliant, but  it makes me wonder.  I wonder if I stay longer, will it hurt him  less.  I wonder if I come more often, will he get use to my coming and going.  I wonder if I come less, will he just forget.  I wonder when I am there, if it reminds him of the life he once had.  I wonder when I take visitors, does he wonder  why life is going on without him.  That was the bitter.

I can’t help but think about this disease as slow torture.  It’s the bitter.  I wish I could say that it’s not.  They say that it will get better in time; once he forgets who I am.  I think I can handle that because my goal is for him to by happy.  If  happiness involves not remembering me....I can deal with that.

Yes, there is sweet.   Sweet in seeing loving and caring people in the world who actually live for the pleasure  of serving...and there are many of them.   Sweet in watching them care for those who cannot respond.  Being the loved one and caregiver, brings discovery of depth and strength you never knew you had.  It opens an awareness and compassion to those who have been given such unfair trials in their lives.  There is sweetness in discovering that it’s not my place to judge; but to have grace and mercy.

So in those things I give thanks.  Happy Birthday to Jerry, I celebrate the day you were born.  I am thankful for you....and there is much sweetness in that.

Soon to End

It’s been one month since Jerry checked in to his new home.  It seems like an eternity.  Unbelievable that it’s only been thirty days. There have been some terribly sad days.  There have been some relatively “ok” days.  The rest from not having to take care of Jerry 24/7 is actually a bit mind boggling.  I mean, what do I do with all my time?  I think I’m even more scatter brained and attention deficit than I was before.  I have unfinished projects spread out in every room of the house and an insatiable need to finish them.   However, to be able to just jump in the car and meet someone for lunch it pretty nice.

The days and nights without my buddy is ....well, words cannot describe it.  There have been nights of overwhelming sadness where I stuffed a pillow inside his old sweater and slept with it.  Yet, whenever I begin to  miss him, I am reminded, that this precious man is not who he use to be.  He is a poor lost soul who is delightfully happy in his new home.  Nonetheless, he is my wonderful Jerry , always will be, and I am totally dedicated to him.

I’ve decided to end my blog.  Perhaps, I’ll keep writing but not post my every thought.  This new chapter is one that may need to be journaled, but, for now, I’ll not publish it.  Tomorrow will be my last  post.   I figure his birthday is a good day to end.  I’ll let you know how bitter sweet it is.  Better to have loved and lost than never to be loved at all.

It’s Your Birthday!

February 27th is Jerry birthday.  That’s this Sunday.  What do you do for someone with Alzheimer disease on their birthday? My daughter is expecting her second baby any day now.  I’ve questioned what day I should go on up to Raleigh.  Don’t want to miss the birth.  However, don’t want to neglect Jerry on his birthday, either.  He doesn’t know what day it is?  Much less that Sunday is his birthday.  But does that matter?  I know, even though he is unaware of his special day, that he would delight with a “Jerry smile” when I walk in and say, “Happy Birthday!”  How could I deprive  him that moment of surprise?

So, I’ve decided that this time when I walk in, I’ll be accompanied by  his buddy Bruce.   Here’s the plan.  We’re going to take him to Smithfield BBQ for a North Carolina BBQ sandwich.  His present will be BRUCE and BBQ !    If all goes well, we may swing by the ice cream parlor.  Maybe.

Let’s just hope the baby waits a few more days.

Good Report

Ok, so I just couldn’t stand it.  I had to go. Today, my friend Ruth came with me.  It was such a good visit.  He cried, at first when he saw me, but he actually focused more on Ruth.  He hugged her, smiled, and said, “How did you do that?”  As if to say, “How did you find me?”  Between, Ruth and I, we were able to keep Jerry redirected during the entire visit.  It was a happy time.  Jerry was talking more (didn’t make a lick of sense), but talking none the less.  We even turned on his Doyle Lawson bluegrass and danced a bit.

By the end of the hour, it was time to wind it down.  One of the things I could find myself doing is hanging out with Jerry, taking a nap..going to eat, going for a walk...but. I’ve found that short visits are the best...say 45 minutes or less.  Singing in the activity center was just beginning, so the timing was just right to say goodbye.  A happy Jerry, makes a happy Sue.

Because He Lives

...never has that song meant so much to me.  I’ve sung it for years. Because He lives, I can face tomorrow.

Because He lives all fear is gone.

Because I know who holds the future

Life is worth the living just because He lives.

.

A Step Back to Tearville

One step back.   This time it only took 47 minutes to stop crying.  I know that because the clock in my car is just below the radio, where I was trying to find a station to distract my thoughts. Jerry had a hard day.  He had a hard night.

Today, after painting myself into a canvas full of mud, I decided it was time to  stop.  I wanted to go see my Jerr Bear.   When I arrived, sweet Helen, the maintenance girl, was coming down the hall.  She stopped me and said, “Jerry, was really missing you last night.  He was having a really hard time.”  Oh no.  I opened the door to the unit and there he was, walking toward me...crying.  This time we did our expected sob and hug but he didn’t stop on the walk to his room.   I mean....his heart must be beginning to break.  To watch him cry... it’s terrible.  To be separated after all these years....well.... that’s terrible too.

We cuddled for a while, then Miranda, the night nurse, came in, “Oh, excuse me.”  “No, no.  Come in.  Have I met you before?”  I asked.  Miranda had been on duty the night before and said Jerry had such a hard time and she just wanted to check in on him.  He jumped up to greet her with his huge smile, but quickly his tears began to flow again. Miranda  told me how she watched football with him last night to keep him distracted.  She thinks what triggered it was that she asked about his “sweetheart.”  Jerry has called me his sweetheart.  Nothing in my bag of tricks worked.  I hung up some of his clothes, we walked the dog, went for a car ride and had mexican food.  The whole time our trivial chit chat was intermingled with tears.   Oh, I HATE THIS DISEASE!  He painfully misses me  and it’s so mean for us to be  apart.

To give him incentive to go back, we went to the local Harris Teeter and  bought a chocolate cake to take to his nurses.  (Jerry loves chocolate.)  As we approached the parking lot, he said, “I wish I didn’t have to......”  I said, “I know.  But we’ve got to take your friends their cake.”   As we walked into the unit, he skipped a jig as he approached them and held his arms wide, as if to say, “I’M HERE!”    He loves those girls.  But, within minutes, he was beginning to tear up  again.  This time, I could see he wasn’t going to let me leave gently.  Nurse Sandra tried to get him to sit by her, but if I took one step away, he’d grab  on to my arm and begin to cry.  So, the three of us walked down the hall to the front door.  She said, she’s only seen one other couple as sad as we are.  You see, most residents are older parents, not spouses.  Jerry’s the baby.  I am in my 50’s and he is just 62.  We’ve been together since I was 17...married when I was 19.  That’s a lifetime!

So, it took 47 minutes to stop crying on the way home.  That’s less than the first time.  Bluegrass is tomorrow night.

Hallelujah! Hallelujah! (George Frideric Handel)

This morning, for some reason, I rose to my feet singing, “hallelujah! hallelujah!  la la la la!  la la la la!  ha-lle-e-lu-u-ja!  Then, I made up my bed for the first time in a week.  It wasn’t that I went to bed early.  In fact, I went to bed late after studying about Henry Hensche, the famous American painter.

The fact that I made up my bed was a huge indication that the grey cloud is moving on out.  Yeah!   The fact that today is Valentine’s Day and I am making up my bed, fluffing up the pillows, and pressing all the wrinkles out of the emerald green coverlet without my dear heart with me, is even more of a triumph.  You see, when Jerry and I were first married, I remember vividly, what a nagging  Valentine wife I was.  Jerry was raised in a family of boys who were never trained in romance.  I, thinking I was a princess who should be adored, thought he should go over the top to express that.  NOT HAPPENING!  That first Valentine’s Day, once morning had passed and lunch was over, there were still no flowers, cards, and especially no diamonds!  (I never was a diamond person anyway.)  Anyway, I proceeded to lechture and nag him on the importance of doing something special for me.  After all, I had gotten him a card.  Ha!  Once the dripping faucet of my contentious voice filled his bucket he stormed out of the house and slammed the door.  Ah, such a wonderful sweetheart I was.  About 20 minutes later, there was a knock on the door.  I answered it and he shoved some flowers in my face and said, “HERE!”  Even worse, he had cut them from his MOTHER’s garden!

Oh, we had so much to learn.

Today, after being well trained by Jerry, I feel free from the commercial traps that society says we need to do to express our love to our loved ones.  I know how much Jerry loves me;  more than any other.  I can tell by the way he greets me when I walk in the room.  I can tell by the way he places his arm around me and how I see his chiseled hand, etched with character, is draped across my shoulder.  ...a love that is more than a material gift created by the masterminded marketers of this world,  but the gift of selflessness and sacrifice.

So, instead of being sad today, I am so enriched and gratetful.  Grateful to the God of this universe who, I believe,  gave me this life filled with beauty, anguish, love and hope.  It is because of this that I can sing....

"Hallelujah! for the Lord God omnipotent reigneth. Revelation 11:15 15. . . the kingdoms of this world are become the kingdoms of our Lord, and of His Christ: and He shall reign for ever and ever. Revelation 19:16 16. . . . KING OF KINGS, LORD OF LORDS."

Relief in Routine

Won’t blah blah blog forever, but just wanted to say that I couldn’t stay away today.  Jerry was at the center of my mind.  During the forty five minute drive to New Bern, I was weepy.  Missing him.  Used my daughter as a sounding board....poor girl.   Anyway, it was good to get it out BEFORE I showed up. When I walk into the memory unit, nurse Renee was there to meet me.  I could see Jerry behind her in the activity room.  She gave me a hug and said to the other nurse, “Wait until you see his response when he sees her.  What a love story!”  Right at that moment, he saw me. With outstretched arms and the wails of tears he wrapped his arms around me, then became excited for everyone to know that I was his wife.  Smiling, he’d  point to me, as if to say, “she’s mine.”  Once in his room, we  plopped on the bed and began to visit.  I could tell that he was wondering how long this would last and did I want it this way.  He was kind of hinting at why it was taking so long, how I got there and what he could do.  I reinforced that I miss him so much just like he missed me,  then hung some home made valentines from the grandkids on his picture.

After a little while, I could see that he was getting more comfortable so I took him outside to see a surprise visitor.  Montana, his dog, was waiting in the car.  They were so happy to see each other, yet, took up with each other as if it were routine.  In fact, the whole visit was becoming so “routine” that I took Jerry out for ice cream.  We had a date! In fact, it was almost like “normal” and after about an hour on the town, he was ready to come home....to his new home.   Secure that I would come back soon, he seemed fine with my leaving.  What a relief!  What a good man!

Stepping Out On My Own

The workshop is over and I learned more in those three days that I ever learned in my life.  (about art, that is.)  Three days, nonstop, from 9am to 6pm, standing, painting, and listening to lectures from one of the great portrait realists, John de la Vega.  I was the least trained, to say the least, but he was gracious.   He was intense and passionate..like the meistro  conducting his symphony rehearsal the day before a performance. “Why did you use that color?  Where do you see that?  Take it off!  Use more paint!  Connection!  Movement!  Connection!”  “Trying is for the feeble minded, it’s always important to do better than your best!”  By two o’clock on the first day, I wondered what I had gotten myself into and wanted to run out the back door.  It was an amazing three days of academia!

By third day, I got up the courage to bring in Jerry’s eyes.   I figured, “what the heck”,   timidly showed them to the class for his critique and explained  that they would be on the cover of a book one day.  He silently looked them.   Studied them.  Asked when I painted them.  I said, “Two years ago.”  He said,  "I wouldn’t touch it!  Leave it the way it is.  If you want to do anything, paint the eyes again with the knowledge that you have now.”  My widened eyes watered and I said, “I don’t think I can do that.”

At first, I couldn’t stand the thought of painting those eyes again, but, now, I think it will be good.  This time they will have even more soul. It won’t be a way of being stuck, but a way of moving on.  Moving on to the next stage in this journey called life.

This week was, yet, another step at standing on my own.   Another milestone in discovering who I am.  Me alone, yet, deeply connected.  Connected, yet, separated from  my soulmate.  Separated, yet, eternally connected.  I’m going to see Jerry tomorrow.

Three Days Past Seeing Him

Remember I gave myself three days to grieve.  HA!  What was I thinking!  Me and my grandiose plans. The first day after seeing Jerry I was comatose.  Remember I ate pie and watched the Ya -Ya Sisterhood?  Kept the lights out so no one would know I was home.  Just didn’t feel like talking to anyone and repeating the story over and over again.  I kept having visions of Jerry in my mind; all frail and lost looking.  I’d cry a little, then stop.

Yesterday, day two, the sun was shining so bright, it was hard to be sad.   Montana and I walked the beach, then I came in to conquer the world.  Did nothing.  Have a million things to launch, but no focus.  Downloaded a list of publishers for this blog.  Quit. The most that was done was half spray paint a piece of wrought iron furniture.  It’s still in the yard.  You see, as caregiver, the hours were scheduled for me.  Up early to paint, then the rest of the day would be spent trying to accommodate Jerry.  Now, I have all the time in the world, with no pressure to complete anything.  I think I’m still trying to process that I can’t have him back.  He’s still there but not really.  Does that make sense?  It’s like watching someone walk away into the distance, desperately running after them, but never being able to catch up.  And the thing is.....I don’t think it will stop until .....it’s final.  I went to a friend’s house to help her organize her studio.  That kept my mind busy.   I wonder if he thinks about anything when he lays his head down to sleep at night.  I do.

Today is day three.  The sun is completely unobstructed by anything and the sky is a light transparent cobalt hue (that’s art talk).  There’s a little more energy in me today and I’m going to keep music on.  Lively music.  The portrait workshop starts tomorrow and I need to prime my canvases and organize my supplies to take.  Yes!  A deadline!  I’m going to a financial workshop tonight.  Don’t want to go, but I’m going to make myself.  Guess I’ve got to face those hurdles.  Does this mean I have to stick to a budget?  That makes me chuckle!

Turning my music on now.  My canvases are waiting.  PS.  I threw the pie away.  Deep down in the trash where I couldn’t retrieve it.

Honestly

I’ve taken the rest of the day to wallow in numbness.  I came home, ate baked chicken, a piece of peach pie and turned on the movie, Devine Secrets of the Ya Ya Sisterhood.  The phone kept ringing but I didn’t want to talk to anyone.  Can I tell you the truth? People have said....“what an incredible journey”,  “you are so brave”, “ you are an inspiration”, “thank you for your courage”, “you’ve gone beyond“, “you are such a good wife”, "what a testimony”...all these comments are truly appreciated, but not exactly true.

HONESTLY!  I would trade it all to have my Jerry back.  While we did not have the perfect marriage....we were no different that most.  We bickered (occasionally), we became distant (from time to time), we took each other for granted, we fussed over sports verses musicals, we gave each other  the silent treatment, we neglected each other. He grew more handsome, I grew fatter and more wrinkled...we were like most.   Underneath it all, however,  we were soulmates and best friends.  Even though we may not have always met each other’s needs and we may have, at times,  put our own selves first, there was never any doubt that we would be there for one another.

I didn’t ask to be an inspiration.  I didn’t want to be courageous. In fact, when he was first diagnosed, I became sick at the fact we were going to go through this.  Years ago, I knew this time would come.  I didn’t know if I could do it.    I’m tired of being brave.  This is the saddest experience I’ve ever had.  More than losing my parents.  My eyelids are heavy.

But, God, in his grace, is preparing me little by little.  I’m not so sure I’m prepared even now.  Yet, I cannot crumble, because He is holding me up.  Barely.  I hate having to be brave.  I wish we were not going through this.  But, I will tell you....Jerry is happy.  He is safe.  He is not in pain.

It is the caregiver who is sad at the loss and dealing with the pain.  Not to discourage you who are caregivers, but this journey is not for the faint of heart.  You will find strength you never knew you were capable of.   You, who are undergoing this, are amazing people.   There is a spiritual reward...just not one that you would ask for.  No one asks to undergo such loss just to experience joy or a “spiritual reward”.  Truly, truly, however, God is sufficient and will not forsake us.  He heals the wounds of the broken hearted.  This I know.

Take heart, my friends.  We can survive this.  We must.  The shadows of  sadness will fade and the sun will come out in time.