k Sue Scoggins

The Road Is Long with Many a Winding Turn….

October 17th, 2011

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

August 23rd, 2011

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

June 20th, 2011

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

April 7th, 2011

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

March 1st, 2011

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

February 28th, 2011

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

February 26th, 2011

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 25th, 2011

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

February 25th, 2011

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

February 20th, 2011

…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.

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