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

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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.

For You Youngins-A Valentine's Sunset

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Ok...I was wondering what to write for Valentine's Day.  NOT another sappy, emotional, whining post.  Actually, I think Valentine's Day was an idea dreamed up by the Devil himself to destroy every loving relationship through guilt.  I mean....it's like this.

When Jerry and I were "newlyweds", which means under 5 years.... I thought Valentine's Day was all about making me a princess.  He needed to show me how much he loved me by bringing me flowers and taking me out to a fabulous restaurant ...wine and dine, so to speak. It was all about ME.  Not that I was a princess or anything.  I've always been a survivor and worked like a trojan horse.  BUT, VALENTINE'S DAY!  Come on!

It was our first year of marriage and Jerry, I'm sure, did not even know what day is was...much less think of bringing me flowers.  When he arrived after work to our little apartment and wondered what was for dinner, I knew I was in trouble.  NO!  I knew HE was in trouble.  We fought like the dickens..."What!!!!  You didn't bring me flowers? We're not going out for dinner?  Nothing?"  He got so mad that he stormed out the door!  He left and went to his mother's house.....stripped her rose bushes naked...came back..and shoved them in my face!  HERE!    Oh, what a memory.  Can any of you relate?

After the emotional country music fiasco the other night, I decided I would brave it again...this time during the day.  Jerry's activity directors planned a real Valentine's banquet complete with an arched entry way, ceiling full of balloons, and a jazz combo playing those "DADGUM" love songs.  When I arrived, I saw an empty chair by Jerry.  Everyone was dressed in red.  The tables were covered in white table clothes, and the servers were all dressed up in red and black.  They served wine (which was non-alcoholic) and prime rib with stuffed baked potatoes.  They really went all out.

I was happy to take that empty seat next to Jerry.  It was the activity director's seat.  She feeds Jerry.  Sniff!  Yes.  He is to the point now, where he cannot feed himself.  Even so, he liked his steak.  He held my hand and it was truly romantic to be able to serve him in such a way.  It makes me cry.  ....because THIS is true love.  To love and serve each other to the very end once all the superficial trappings have fallen off.

To lighten up a bit.....I asked Jerry if he wanted to dance.  It was the only word he said all day, "Yes."  It was a beautiful word.  Sorry, I teared up....but seriously....what a wonderful treasure we have been blessed with...to be here for each other.  It's an unbelievable reward for a lifetime of being together.

So....you youngins.  THINK!  There are no better riches than long lasting relationships that endure to the very end....Hang in there.

In the Book of John,  we see that Mary knelt at the feet of Jesus.  That was an act that was filled with humility with a readiness to serve. Jesus didn't demand it.  She recognized him and had an enduring love for him.  It is the only way to truly live.  To serve one another.

And,YES, this is actually the tonight's sunset..a Valentine's sunset..that appeared while I was writing this post.  Have a happy Valentine's Day.

Real

I once heard a radio psychologist suggest that we should not write when we are fatigued, hungry, angry, (something else, I forgot). Well, .......

People have said that I will have extra jewels in my crown.  Don't know about the jewels in the crown...I don't want them.  It's getting too heavy.

There's a country band that comes to Jerry's place once a month.  It's Jerry's favorite ole timey country music.  After such a great "respite" I thought I'd go and dance with him tonight.  BAD IDEA!  He is so pitiful.  Don't know whether to be happy or sad.  When you see these beautiful people…besides the smell of urine, the food drippings on the top of the shoes, the bruises on their faces from falls, the glazed eyes…..what else can I say….I try to see what positive that I can.

Jerry is still beautifully handsome…very skinny…but handsome.  His eyes are still radiant blue…but they see far off in the distance and they are "wanting".  Tonight, he was completely unaware that I was sitting by him….I was sitting on the wrong side.  I should have been sitting on the left.  I am so grateful to these talented people who give of their time to bring these tunes to these forgotten folks.  There is a "mean" fiddler and a blind bass guitar player with a great sense of humor, the woman with a velvet voice and then there is the man that slides on his steel guitar. They smile bravely and joke but there is one singer who insists on playing the old woeful whining songs that bring the room to a downward spiral.  It takes two Orange Blossom Specials and a Good Ole Mountain Dew to get the hands clapping again.

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Jerry was rather unresponsive tonight which brings me such sadness.  I think he was even hallucinating but I couldn't tell. There was no dancing. Oh how I wish I could hear a cohesive word come from his voice.  We held hands tonight...all four of them, his and mine.  His hands are so soft.  If there was anything that use to get a rise out of him…it was foot stomping country music.  When the Orange Blossom Special was over, he got so excited that he gingerly rose to his feet and walked to the front of the room amongst the singers.  He had no idea where he was going.  It was so pitifully sad but a smily type of sad.

Ok….now that you are probably crying.  I'll stop. I realize this is sad.  People say this is cathartic for me.  Yes, it is.  However, it is real and I am not the only person to experience this.  There are many.  We will cry.  We will be blessed.  We will be stronger in time.

Now, I think I'll go eat some toasted raisin bread with extra sugar on top....along with a gin and tonic..then go to bed.

Re-energized for Year Fourteen - An Alzheimer Journey by Susan Scoggins

As a caregiver, consistency in routine seems to keeps things working at their best.  VIsits twice a week, once during the week and one weekend day, keep the time with Jerry pretty positive.  We used to have lunch dates, but because of his declining state, I now go just after lunch, around 1:00.  If the weather is nice, I still put him in the car and we drive around town to see his favorite waterfront, the birds and the boats.  If the weather's too cold, we head to the facility dining room, which is white table cloth, and have a coke or coffee and a cookie.  (I'm always prepared with cookies or peanuts.) After months on end, my mental energy tank begins to run low, so I've found that I HAVE to get out of dodge for a couple of weeks a year to refuel. I can feel myself sinking, my paintings lose their energy and so do I.  Luckily for me, my son lives in California, so it's the perfect escape.  In our 41 years of marriage, Jerry and I rarely left each other (accept for his business travels.)  I wasn't one for girls weekends and he wasn't one for guys golf trips.  I suppose you could say that we were stuck to each other like amyloid plaque and brain cells (not funny).  The first time I ever left Jerry for over one night, was a year and a half ago.  He was at the facility and I went to a two week art school in the mountains.  We both survived.  Then, last spring, I went to Santa Barbara for a week of intense painting.  It was wonderful.

Capitola By the Sea

20x24 oil on canvas

January and February are overcast and dreary in the Carolinas.  That type of weather in Alzheimer world is a recipe for depression.  So over the last few weeks, I went back to California.  With my paints neatly packed, a rented car, and US 1, I drove through Carmel and Big Sur, then ended up in Pasadena with my "old same", my son, Mark.  He's good for reenergizing me.  We worked on a new website, created a new art video, played great music, laughed and celebrated being together. It was a beautifully crazy fun time.  And even though I felt the need to call Jerry almost every day, just like in the old days, each day, his nurses who are well versed in knowing how to make the families feel good, would say, "He's fine.  He danced with me today."  This trip was the perfect thing to refuel my emotional and mental energy tank so that I could go back to him.

Refreshed after two weeks, I walked into the facility curious if Jerry would know who I was.   The aide had him back in his room, bathing and dressing him, shaving and putting all his "smell good" on.  When he walked out, I melted as usual.  He put his arms out, but he did not know who I was.  (He gets lots of hugs from everyone who sees him).  I wrapped my arms around him, pulled away and told him it was me.  Hugged him again and laid my head on his chest.  As we walked down the hall, I could tell he had a happy countenance. His eyes had a brightness to them.  Even though he didn't know who I was, he knew he was with someone who made him happy.  We wandered down the hall to the living room but he wasn't content staying at the facility.  WIthout words, I could see he wanted to go.  This is our routine...go, get in the car, and drive around.  He knew.  He knew who I was.

If you have any opportunity to enable a caregiver to get away and have a re-energizing retreat.  Please do so.  It will help them go the distance.  Thank you all for encouraging me.

Ramin Noodles

Seriously, I've not had ramin noodles since my college years.  That was many years ago. Not that I'm poor or anything.  It's just that my priorities have changed.  No longer is it important to me what I eat.  Or what I spend.  The days of fine dining and romantic evenings are no longer in my scope of daily life.

After surviving the holidays....the beautiful times of worship and days of frolicking with my grand boys..are over.  It's back to reality now.  After being away from Jerry for a little over a week, I found myself missing him terribly.  This weaning process is so weird.  I showed up at his "home" and he was on an outing.  So, I waited at the nurses station, catching up on holiday chatter.  After about an hour, the troops started coming through the door one wheelchair at a time. I waited ..watched...greeted them all.  The wheelchairs were causing a slight traffic jam at the door.  Then, Jerry appeared behind them.  His eyes sprinted into action, he leaped...even bounded over three wheel chairs get to me..arms stretched out.

This was total confirmation that this was where I belonged.  This was where I needed to be.  This is my priority.  There is no greater purpose in my life than to care for my Jerry....my beloved for so many years who provided for me  and enabled me to be with my children.  It's the least I can do to be there for him now.

So often...after so many years of Alzheimer's disease....we begin to be accustomed to life without....without the husband.....without the dad....without the granddad.  But the truth be told.....it is "WE" who leave the Alzheimer patient...not they who leave us.

For a bit, I have struggled with how to move on. Even the staff has encouraged me to move on.  "He is not going to get any better."  Jerry is completely secure in his surroundings and very well cared for.  Sometimes I think..if I never came back..would he even realize it?  BUT, when I arrived and he leaped over three wheelchairs...I realized.....NO!  He still needs me...even if for a few minutes.  What in the world could be more important than that....but to be there for the one who is helpless and is in his greatest time of need.

Don't know what this has to do with Ramin Noodles.  Maybe it's my mind that is "noodley". I suppose it's that ...nothing really matters but to love the one who needs me and love sacrificially.  Superficial lovelies are tantalizing and, in this day in age, what's seemingly important...but to me...what is much more fulfilling is to love those who cannot "give' in return.  To love those who "in this world" seem to be of disposable value.

I've put my home up for sale.  It truly is not a problem.  The equity will be put away for the cost of Jerry's care.  That is of utmost importance.  I don't want him, ever, to be away from his loving and secure environment.  Thank GOD, I'm a "nomad" and use to change.  I delight in new environments.  So moving on, while, I admit is a bit "sniffy", will be ok.  Jerry's security is what's most important.  That brings me peace.  God will provide a new and wonderful place for me.  I'm not afraid.

So there's an update.  The ramin noodles were quite comfy.  We'll see what life brings this year.  It will be a good year.

Epiphany!

After recently reading an article written by Carol Larkin on the Alzheimer Reading Room website, I learned about Alzheimer patients and tunnel vision.  She suggested making a narrow circle out of your thumb and forefinger, holding it up to your eye and taking a few steps.  It was quite an enlightening exercise.

Then I got to thinking about Jerry.  When I walk into the room he always pops up and walks toward me.  Obviously, he recognizes me.  But the tunnel vision thing explains a lot.  As Jerry comes closer, his eyes direct straight ahead on his eye level.  Since he is 6’4”, that means his gaze goes right past me to the back of the room.  I usually place my hands on his cheeks and direct his eyes down to my eyes hoping to connect.  Sometimes we connect, sometimes we don’t.

Then I got to thinking!  You know I do that a lot!  THINK!  If I am right in his face...think of coming really close and looking into the end of a tunnel.....HE PROBABLY ONLY SEES MY EYEBALL!  Eee gads!  “Who’s eyeball is in my tunnel?”  he must be asking.  That’s also why he doesn’t see me when I’m sitting next to him and he’s staring straight ahead.  There is no peripheral vision.  It’s all making sense!  Because if I get up and move about 4 feet out in front of him....he sees me.  AND on a good day.....he knows me.

That explains why he doesn’t put a paint brush to paper on a table. He doesn’t see the paper.  He doesn’t look down. He looks eye level.  This is why he doesn’t maneuver steps well...especially steps that go DOWN.  He doesn’t see the step!  AND why he reacts to people as we walk down the hall from a distance....he sees them!  But once he gets close and they react back...he doesn’t see them.

This is just too good to be true!  I feel like I’ve struck gold!  I’m so giddy that I’m jumping up and down.  Oh...my knee...ouch!

Prayer of a Caregiver- An Alzheimer Journey by Susan Scoggins

This morning I was thumbing through my Bible and ran across a crumpled up sheet of paper with a prayer that I had written a little over five years ago.  It read as follows:

I pray:

..that each time he says a comment, it’s like I’ve heard it for the first time.

..that I’m “here” when he has a lucid moment.

..that I never forget who he was.

..that I love the person he is now.

..that I learn to accept the changes with dignity and grace.

..that I never neglect to give him the respect that he deserves.

..that I foresee events that may put him in harm’s way.

..that I protect and honor who he is...a beloved creation of God.

..that I love him as God loves him.

..that I care for him as God cares.

..that I never underestimate what’s behind those empty eyes.

..that I treasure the laughter and laugh in the laugher.

..that I lower expectations and delight in the surprises.

..that I can be happy in his happiness

..that I not resent the future but treasure the NOW.

..that I realize that it’s ok to cry.

..that I can communicate in the silence.

..that it’s ok to love.

..that I rest in my redeemer.

After our wonderful visit on Sunday, I visited Jerry again today.  When I arrived, he was sitting alone in the activity room, where most of the residents watch tv.  As soon as he saw me, he stood up.  As he approached, I could see the blank look in his eyes.  He truly was blank...however, he knew I was “someone”.  We never made eye contact.

I’ve never seen him quite this lost.  After wrapping my arm around him and rubbing my hand across his warm and fuzzy fleece covered chest, we walked into the back room where the head of the unit was doing her paperwork.  I said, “He’s really not “here" today.”  She smiled and nodded her head.  “  I don’t know “where he is”, but he’s been lost today.  In fact, he’s been lost all week.”  She said that on Monday, he slept the entire day and compassionately  told me that there would be days like that. "We’ll be having our good and our bad days" she said.

I still wanted to make the most of this visit and take Jerry out front.  We sat in the living room by the fireplace.  Sat with no words.  I could feel his warmth and watched as he occasionally would light up.  He mumbled several times but had no idea what he was saying.  After a few minutes, he seemed to come around.  I suggested hot chocolate..he said, “Yeah.”  It was a good moment, but after a short time, it was time to go back.

I’m not saddened by today’s visit.  It ok.  Even though it wasn’t the same as last Sunday, it was still precious to me.  I think it was to him also.  So, as I read that through that prayer...it is as pertinent today as it was 5 years ago.  While Jerry’s condition has definitely changed, the prayer has not changed.  The answers have not changed, in fact, the answers have sustained me.

The Good Book - An Alzheimer Journey by Sue Scoggins

Jerry’s been doing pretty well lately.  Today, he was a shaved and dressed up in a beautiful blue striped button-down shirt and khaki pants.    When I walked through the door, he was  rounding the corner of the hallway.  His eyes caught me, he came running, wrapped his arms around me, then they drifted off across the room.  Once my arms are around him, I want to hold him tight....but, he was ready to go.  He liked the Christmas music playing on the radio and even attempted to turn it up by reaching for the air vents.  I knew what he was trying to do.  After a while, it becomes easy to read the mind of an Alzheimer person. It was a gloriously beautiful day in New Bern.  Perfect for a picnic.  So we rode by the local KFC (haven’t eaten at one of those in 20 years) and got lunch to go.  The park was the usual one by the water where all the people come to feed the seagulls.  I placed a towel on the bench so it would be a little warm and soft for his boney behind, then another towel for a table cloth.  Jerry actually was able to maneuver himself  into the picnic table which is something he hasn’t been able to do in months.  The nuggets worked just fine but he loved the cold slaw and sweet tea.

Lately, Jerry has been carrying around the Bible that the hospice Chaplin gave him.  So, today I thought I’d bring his own Bible from home.  As we walked across the street toward the water, he tucked his Bible under his arm like he always use to do.  Once we sat down again, he pointed to the cover, and said, “Holy.”  He began to thumb through it.  He randomly stopped on a page where he had underlined some verses from years ago. Matthew 7: 13,14.  “Enter by the narrow gate; for the gate is wide, and the way is broad that leads to destruction, and many are those who enter by it.  For the gate is small, and the way is narrow that leads to life,and few are those who find it.”  Interesting verse.  Especially when we come to the end of life...I can see that the gate is narrow and I’m so glad we found it... the only thing left is the best thing.....LIFE everlasting.  Thank you God.

After about 20 minutes on the bench, Jerry wanted to walk.  There’s a sidewalk that surrounds the park along the water and the seagulls are fluttering everywhere.  Jerry, frail, with his Bible tucked, me on the other side trying to keep him stable slowly continued our walk.  I could see, up ahead, two rather “thuggie” looking men sitting on their motorcycles at the end of the sidewalk....looking rather....well, ”thuglike” dressed in their motorcycle get up.  We hobbled on out in front of them to cross the street when one of them said, “I like your choice of books under your arm.  The Good Book.”  Jerry held it.   I smiled.  The other one said, “Yeah.  I wish everyone would read it.”  Whew!  WIth a smile of relief.....“Your right.”, I said.

Like I said, thank you God.  Until next time, the journey continues.  Christmas is coming.

Emotional painter

I just love to paint.  I wish I didn’t have to charge, but I have to find a way to pay Jerry’s medical bills.  If I didn’t need the income, I’d paint for free.  It would be my gift....a privilege to share.  Right now,  I find myself in the  middle of some pretty emotional paintings.  Don’t know why I am asked to paint these scenarios.  I certainly don’t have the monopoly on the corner of sadness. In fact, I am at peace and have so much to be thankful for. Shadow is finished.  He is the precious family dog, who is twelve years old and now has cataracts.  He, clearly, is getting on in years and I’ve been asked to paint him.   However, it is much more than painting the family dog.  The husband of the family, has just place his mother in an assisted living facility for people with memory loss.  The doggie family member is just an emotional extension of losing the mother.  It’s a way of processing loss , a passage in this thing called “life”.

I also am painting a beautifully peaceful ocean scene of the family summer place where everyone would gather for summers on the beach.  The mother of the family, too, has Alzheimer disease and has been placed in an adult daycare.  This painting is a gift from the daughter to the father of the summer place that holds such dear memories.

I am thoroughly enjoying painting these scenes.  Whether it is the beloved family pet or the family memories......I can feel the attachment.  I am honored to be asked to paint the memories that these families hold so dear.

I brought Jerry home yesterday.  It was the first time in over a year.  It was a trial run for when my daughters come down.  I know they want to see their dad, but it is difficult with 5 grandboys.  I know they want their boys to know their granddad.  But, truth be told, it is not going to happen for the boys.  There is a remote possibility for my girls to still connect.....it will take time and silence, however, with very little return at best.

Jerry’s visit home, yesterday, was so surreal.  He definitely recognized that he had been here before.  However, there was no emotional connection.  I would watch as he walked on the deck, overlooking the pond.  He stood there....looking down.  I wondered what was going through his mind.  It was as if he was checking things out.  He also looked at the stack of bills on the table, as if he was wondering if I was doing a good job.  I don’t know. He walked over to the table next to the sofa.  He picked up a piece of paper.  I wonder if he recognized that this was home.   I sat him on the sofa and turned on football.  He was not interested.  He was disconnected to everything.  Yet, comfortable.

Physically, I noticed that he was not stable on his feet. He had an “accident” and had to take a shower.  He was totally detached as I bathed him.   Several times he lost his footing going down the steps.  Yet, when we went down the stairs to head toward the car, he was surefooted.  I kept saying, “Hold on to the rail.  Hold on to the rail.”  He didn’t.  He “surely" headed straight to the car.

I am puzzled by the visit.  I think he knew where he was.  I think he knew who I was.  I think he was secure and comfortable.  But, I don’t think there was a connection.  I can’t quite figure it out.  I suppose I should quit trying to figure it out.

All I know, is that on the drive back, he said with resolve, “I love you.”

I’m confused.  Guess I’d better get back to painting.

Swirling

There are so many thoughts swirling around in my head. The wonderful Thanksgiving with my daughter and her family in the mountains was filled with it’s emotions..up and down...elation...and sadness of being without Jerry and knowing that the family that I once knew is different now. When we arrived back home,  I received a phone call from Jerry’s brother.  His momma had passed away from a long awaited journey.  Jerry’s momma had been in a nursing home for 5 years.  Two of those years she was on a feeding tube.  Her passing was long and arduous with very little communication.   The last meaningful communication that Jerry had with her was 5 years ago.  He loved his momma so.  We went to visit her as often as we could, but when Jerry’s condition declined, it was impossible.  Five years ago, Jerry and I took our last road trip.  While traveling across the country from Los Angeles to North Carolina, we stopped in Mississippi to see his dearly beloved momma.  She had a habit of watching at the front door, waiting for her children to stop by.  When we drove up the driveway, she was at the door.  Jerry stepped out of the car and hurriedly walked to toward her.  He weeped, “Momma!  Momma!” as they embraced.   He was in his seventh year of Alzheimer disease.  She was 87.

That picture is still fresh in my mind, but now, at her funeral, he is unable to attend.

When I got the call of her passing, I immediately called my children.  I knew it would be an emotional milestone for all of us.  The fact that Jerry’s mother was gone...and that he was unable to be by her side or attend her funeral.

I am completely overwhelmed with pride over my children.  They immediately went into frenzy mode, rearranged their schedules, found babysitters, cancelled appointments....all to be able to represent their dad.  We were all, within 24 hours, able to jump on a plane and head to Mississippi.  I was so overwhelmed at how God worked out all the details and enabled us to be together in such a beautiful bonding experience. There we were, the four of us, standing shoulder to shoulder.   Katie wore her grandmother’s ring.  Mark wore his daddy’s hat.  Amanda stood tall as the eldest.  What beautiful children I have been blessed with!!!!

Now that several days have passed, I have had time to settle down.  I asked, “Grandmother....are you ok now?”  “Do you know how much your son loved you?”  “I hope beyond hope that you understand why he hasn’t been there in your last years. He loved you so much. ”

I know she is engulfed by the incomprehensible love of God now.  She read her Bible daily..in quiet...was not presumptuous or brazen.  Her faith was quiet and secure.  There is no doubt that she is at peace and experiencing an unfathomable existence now.  Life with Christ ensures that.  No matter what our last years are like......eternity in the presence of our Lord God Almighty is the final peace....we can say....”Aaaaaaah”....”Amen”.....”I’ve done my best.”  ..”Thank you God for your mercy."

Veteran Memories Embedded

Just looking at Roy’s grandson, Isaac, tears me up!   WIth the permission of the family, I was moved to write about Roy, Jerry’s roommate.

Roy is such a quiet an gentle man who’s emotional and sensitive spirit is quite intact whenever those buttons are pushed.  In fact, all I have to do is say, “Hi Roy.  I think your family is coming today.”  Then he reaches out his hand and begins to cry.  He dearly loves and misses his family.  He and Jerry are a perfect match.

Friday was a day to celebrate and honor all the veterans who served this country.   This celebration wasn’t held with blaring bands or flag parades on footballs fields.  This celebration was sweet and intimate.  The tables were set in red, white, and blue with little flags and sparkles as centerpieces.  Each veteran was dressed in their best with a crafty red felt boutonniere that was handmade with love.  The wonderful thing is that the Alzheimer patients are intermingled with those seniors who are “with it”.  There is not a person there who does not feel that they are a part of the family.  They are a community.

The ceremony began with the Pledge of Allegiance.   I will admit that it was over and done with before I could even get Jerry to put down his spoon.  (Never let anything get in the way of that spoon!)  Anyway, the activity director gave a short speech of appreciation and began moving around the room, introducing the veteran.  She interviewed each one and ended each with a round of applause.  I was amazed at how many women had served.  Several of them for 30years.

When she got to Roy, she walked over and got down on her knees.  Roy sat quietly in his wheelchair.  She asked Roy what his branch of service was.  He softly said, “Marines”. She thoughtfully asked him what war he served in...he said, "World War I” and began to cry.  She placed her arm around him and her other hand on his hand and expressed to him how much we appreciated his sacrifice.  Roy actually served in World War II, however, those memories obviously were so deeply embedded in his heart, that he became overwhelmed with emotion.  Roy was awarded the Purple Heart.

So often, we think that those affected with Alzheimer disease, do not know what is going on.  Their blank distant stares and seemingly uninterested countenance leads us to think that they are “not there.”  However, when we slow down, take the time, look deep into their eyes, there IS something there.  Sometimes I think WE are the ones with the problem...that we don’t take the time to connect.  They are so easily discarded.

Lest you think the Veterans ceremony was a total sobfest.....it wasn’t.  The director finished up with a lighthearted WWII trivia quiz.   Did you know that the attack on Pearl Harbor was only two hours?   And in those two hours, over 2000 people were killed.   These seniors knew their history......and as one remarked, “That’s because we lived it!”.

All the residents served in WWII or Korea, accept Jerry, who served during Viet Nam. Jerry’s eyes lit up when I mentioned Ft. Brag and Ft. Benning and he clapped after each recognition.  So maybe he did understand some of the ceremony.  One thing for sure....after the hour was over and the pudding was all gone, Jerry was done.  And as I was snapping Roy’s picture and and meeting Isaac, I looked around and saw Jerry  ..... like the good ole days... the service was over, he had loosened his tie, and he was ready to go.

To Ask or Not to Ask

When at the gym the other night, I was asked, “How’s your husband?”  I immediately said, “Don’t make me cry.” (in jest, sort of.)  She mentioned she’s wanted to ask, but didn’t know what to say.  I immediately told her how much I appreciated her asking.  It reminds me that there are people who genuinely have concern.  It reminds me that I’m not walking this alone. I would encourage anyone who knows anyone in this situation, to ASK.  As a caregiver, there have been many times that I have been tired of repeating the story.  So many of us, need to time be “without” Alzheimers....live a day “without” thinking of Alzheimers....a day when the word doesn’t even enter our mind.  However, the reality is that it IS a daily concern, a daily priority, and it’s nice to know that someone actually acknowledges it.

Last week, I was so fortunate to be up in Raleigh exhibiting at the Junior League Shopping Spree.  It was my first time experiencing the thrill of meeting, greeting, and selling.  It was exhilarating!  I truly had a week of respite.

When I returned to see Jerry, I had called ahead to tell them I was coming and that I was going to take him out for pizza.  I was so excited to see him.  When I walked through the doors, there he was; so cleanly shaven, dressed in my favorite fuzzy yellow Nautica sweatshirt, sporting a brand new haircut.  I FELL IN LOVE ALL OVER

AGAIN!  I think he might have known who I was.  Not sure.  Nonetheless, we went to our little pizza place and sat in the front room by ourselves.  I sat to his right so that he could see me.

Although he didn’t exactly acknowledge our conversation, I rattled away telling him of how I  was at a show...just like his computer shows he use to attend.  Accept, I was selling my art.  I told him how exiting it was....but said, "I know if you had been with me, people would have been walking out with a lot more paintings.”  Jerry had that magnetic personality that drew people to him.  He was genuinely friendly.  He could excite anyone about anything.  Seriously, my sales would have tripled.

Jerry would have been in the midst of those crowds, scurrying them into the booth, asking them  “Where are you from?” Then, genuinely listening.  He would have found something in common and had them laughing within minutes.  That’s just the way he was.  Such wonderful memories we had.

Needless, to say, when taking him back to his home, I had been sucked back into the “wanting him” stage.  It’s something I need to guard against.  “Wanting something I cannot have.”   But, I am so grateful to have those memories and I’m so grateful that he is not pining, or worried, or afraid.  I have a new Jerry now.  One that is pretty close to perfect and nearing the completion of his life.  I am so thankful that he is at peace in his world.

So be brave, and ASK.  You don’t have to have the answers.  Just ASK.  It will mean a lot to someone.

Jerry’s Back - An Alzheimer Journey by Sue Scoggins

Jerry.  Two years ago dancing with Katie while we were still at home.  Jerry loves to dance. He rounded the corner from the back room and saw me standing at the nurses station.  In that second, he picked up his step.  My face lit up in a smile and I ran to hug and hold him.  He felt so soft in his yellow Nautica sweatshirt.  Like a bony pillow.

Our hospice social worker was there to pick up some paperwork.  I’ll miss her, but she reassured me, that if I ever felt Jerry was declining rapidly, not to hesitate to call her for a reevaluation.  The three of us walked back to Jerry’s room.  Jerry never let go of my hand and kept patting my shoulder.  He knew me today.  The social worker explained that the reason he did not recertify for hospice services was that, in spite of his mental decline, his physical decline was not declining enough.  Certain criteria have to be met.  His weight has stabilized and he is still ambulatory.  His vital signs are still good and there has been only one UTI.

Our visit was good, in fact, she asked me for insight in counseling people who’s spouses don’t recognize them.  How do I cope? I told her it was really heart wrenching, at first, when he began to not know me.  I told her that I missed him so much more and felt that if I visited more often, he’d remember me again.  It took a while for me to adjust, but now I make a joke of it.  I try to make it light and say things like, “Who do you think I am?  Your girlfriend?”  Or, “You just said you loved me.  Who’d you think you were saying that to?”  It usually gets a sheepish smile out of him and that is much more important than the fact that he doesn’t know me.

Today, however, we DID connect.  He looked so dad-gum handsome.  His hair is long, now, like a retired rock star.  It was clean and had a little curl on the ends.  It was a mild fall day and we spent our time sitting on the front porch with some of the other residents from the independent living section.  They all know Jerry and are so, so nice to him.  Next time, I told them, I’d bring some music so we can dance to Duke of Earl.  (That’s Jerry’s favorite oldie.)

Next up......Frank Sinatra and Bing Crosby.

Seriously!

Seriously, you guys, I talk to my dog as if she were human.  This living alone thing is quite a new experience. I thought I’d update you on the most recent experiences.  Today, I went to join Jerry for our sing along.  This is the sing along that usually raises the roof with old hymns.  I love it!  Today was a bit different though.  Jerry and I usually sit about 2/3 the way back in the room.  When he got wind that I was in the building and would not sit down.  He kept getting up trying to find me.  Once I walked into the room, he settled down and we took our seats to sing.  (Jerry does not actually sing, but he does move his mouth, so I know he is engaging in what is hidden deep in his heart.)

About half way through, one of the residents began taking off her clothes.  NOW, this really isn’t funny.  The poor activity director kept trying to talk to her, whispering, “Let’s not take our clothes off.  There are men in the room.”  No matter what the coaxing....no matter how patiently she tried to manipulate this precious soul, she was determine to strip!  I’m sorry to laugh....but you just have to.  It’s either laugh or cry.

After singing, I took Jerry out for ice cream.  We drove around for a while, then stopped at one of those new frozen yogurt places where you fill your own cup and pile of toppings.  Honestly, It’s getting a bit comical, because if I ever turn my back on Jerry....say...to grab a cup or fill a cup with yogurt, he turns and walks away.  I then have to run and grab him to bring him back to me.  The game goes on until I can get him seated with a pile of chocolate covered, brownied yogart sitting in front of him.

When he finished his yogurt, the looked straight into my eyes. Took my hand and said, “I love you.”  I nearly died.  He made a split second connection!  I said, “Oh, I love you too.  Would you like to come home with me?”  He said, “No.”   Hmmmmm.

Anyway, on my way back to his home, I received a call from hospice.  They have decided NOT to re-certify him.  They explained he had not declined enough to keep him.  In some way, I understand that financially EVERYONE cannot continue on hospice.  As scarey as it is...this could last for years.   However, with Alzheimer disease you never know how close they are.  While he has remained fairly stable (at least for today), he could go down fast. It’s so unpredictable.  Several others who are in such a desperate state were declined for recertification also.....one beautiful soul was so close to death a few years ago, she is still hanging on, therefore, is NOT IN DECLINE anymore.  (Hospice is a government supported program.)

I suppose I should panic.  For some reason, I cannot.  I can’t explain it.  It may be that the journey with Alzheimers disease is so unpredictable and so “yingie and yangie” that there is nothing secure ...nothing predictable!  It’s the most “live in the moment” test of our lives and I am so  grateful that I know that God holds the future.

With that said....I took Jerry back.  Once we entered his area, he seemed to want to let me go.  Politely, he hugged me.  I asked, “Do you want to go sit on the porch?”  He hesitated.  I comically said, “What?  Are you trying to get rid of me?  Do you want me to go?”  He pointed down the empty hallway and said, “My wife.”  As if he was saying I needed to go now so he could go find his wife.

OH WELL!  Maybe he thought I was the girlfriend all along.  Gotta laugh in order not to cry.

Blindside

I discovered, today, that Jerry does not see to his right.  Recently, I sat on his right while visiting him during lunch.  He did not know I was there.  In the past, when sitting across from him, he would always reach across and drink my wine, grrr!  I would always tease him and slap his hand.  It always created a chuckle.  But with my drink on my right, that would put it on his left.  That’s what he would see.  

Today, he seemed strong enough to go out.  Whenever I can, I try to help him escape to the outside world and the fresh air.  We went to the local pizza place.  As soon as we walked in, they greeted him with a “Hi, Jerry.”  He eats there frequently with his group of buds.  We were escorted over to a booth, which I now know is quite difficult for him to get into.  Nonetheless, I had him sit while I positioned his legs underneath the table.  After some coaxing I managed to get him to scoot over.  The way I did that was to sit next to him and push him on over.  It actually felt good for me to be able to “cuddle” up next to his side.

Anyway, progress was rather slow and our waitress tried to help me communicate.  I made some excuse like, “I just woke him up.  He’s still a bit confused”.  She smiled.  I noticed Jerry was staring straight ahead as if he were a scolded puppy dog trying to ignore that I was there.  He was not responding AT ALL.

DUH!  Epiphany!  I realized.....he could not see out of this side.  Oh, his sight is fine, it’s his brain that tells him that he can’t see what’s to his right.  He didn’t know what was happening, nor who was sitting all “scooched" up next to him.  I said, “I know Jerry!  I’ll sit across from you.”  I hopped up and plopped across the table from him.  All of a sudden he came alive!  He grabbed my hands and looked straight into my eyes!  His eyes welled up with tears as if he hadn’t seen me in years.  I could smile and talk to him and tell him great and wonderful things....I showed him pictures of our youngest baby grandboy, Jack, in his Captain America costume.  A face you can help but love!

No, he had no idea who Jack was, but at least he could seethe picture.  He ate his child size portion of spaghetti and loved it.   I kept his sweet ice tea to the left.  He found it and drank it.

It’s amazing what happens when we try to understand what is happening so we make life somewhat better for them.

Everyone Has Their Story - An Alzheimer Journey by Susan Scoggins

So often I am reminded of how blessed I am.  Even though Alzheimer disease is probably the most dreaded diagnosis of the century, there are so many who are facing trememdous challenges.  Just recently I met a man who’s wife was just  shockingly diagnosed with breast cancer.  Another young woman, with three children, who’s husband was diagnosed with ALS, Lou Gehrig’s disease.  Then, there is the other young couple who have just conquered breast cancer but are now struggling financially after setting up their dental practice. There is not a person on this earth who doesn’t have a struggle to overcome.  Course, for some, the biggest struggle is what earrings to wear or what size TV to get.  But, rest assured their time will come.  It’s what makes life, LIFE!

As Jerry has been steadily declining, I have struggled with keeping a balance.  The closer he comes to passing, the more I realize that God has saved the best for last.  The more that death becomes a reality, the more that God becomes a reality.  God has permeated my every being...something I wouldn’t have experienced if life were all toasty, cozy and rosie.  The struggles have brought me close to a personal God who has walked before me and is saving HIS best for last in eternity...and it will be better than ever imagined.

With that promise, the struggles here seem to stay in their place among priorities. I couldn’t have said this years ago.  Even though I experienced the loss of my parents at a young age, I only realized a relationship with God in a small way. But, after this Alzheimer journey,  I am saying that I am so overwhelmed at what God has done for me.

I’ve been really missing Jerry lately.  Yes, he is still here physically, but he is, for the most part, gone.  There are times I want to scrape my voice together and, in desperation, say, “Come back!  Come back!”  But once I have my cry, I try to focus on the comical things.  Like when I taught at the unit and Ivan did not like the size pumpkin he got.  “Why, that won’t even make a pie!” he remarked in a grumpy tone.  Or when Lorette, because she is deaf, yelled, “GOD BLESS YOU!”  I love that!

That’s what I mean by being overwhelmed with such blessings.  I think without knowing God’s best is saved for last, I wouldn’t be able to laugh or smile quite as much.  So, after speaking with Jerry on the phone today, after hearing his nurse prompting him, after having my cry, I can pick up my brush and paint now.    My brush and pallet are waiting.

Striped Pumpkins - An Alzheimer Journey by Susan Scoggins

Striped pumpkins.  Today, it was my privilege to take my love for art to the assisted living facility where Jerry lives.  In the morning, I work with the residents in the Alzheimer unit.  In the afternoon, I work with the residents in the assisted living section. When I first began this endeavor, I didn’t know what to expect.  Honestly, I do not expect anything.  That’s exactly what makes the time so exciting.  If I had my own unrealistic, preconceived expectations I probably would get frustrated.  I mean when I brought in pumpkins to paint, one of the residents didn’t want to participate because “That’s not what you do with pumpkins.  That’s not even big enough to make a pie!”   I made light of the comment  and passed out a couple of pumpkins large and small.  These would be corporate pumpkins where all the residents would contribute their artistic skills.

Some of the residents can hardly hold a brush and if they can, they don’t know what to do with it.  But once, I got the brush loaded and placed in their hand, I moved it once or twice and away they went.  The session only lasted about 30 minutes...but it was 30 minutes of smiles.

These smiles may not be remembered for long, but it is the smile of the moment and the more moments of smiles we can have the better.

Purpose

As I look into the eyes of these beautiful people with Alzheimer disease, I see the core of the life left inside.  I see people, whose lives have been stripped of the superficial trappings of life, the accomplishments, the material possessions, the pride. There is no room for pride and arrogance in this world.  Scriptures say, “Through him all things were made; without him nothing was made that has been made.” (John 1:3)   God created each and every unique individual with a specific purpose in mind.  Without his creating us, we would not be in existence. It is not of our own doing that we were born.   No two people being alike, our individual makeup, our gifts, our talents whether they be listening, lending a helping hand, artist, mathematician, photographer, film maker....are a unique design given to us for God’s greater purpose.  To live separately from him would be abandoning the purpose for which we were made.

When I see the eyes of my beautiful grandson I see a fresh and sensitive little soul.  There is so much ahead of him.  When I look into Jerry’s eyes, I see a soul filled with wisdom and beauty.  Both sort of have a look of determination and purpose.  Behind the blank stare of Alzheimer eyes, is the person inside.  I see value.  Their Alzheimer walk was not of their own doing.  These people lived accomplished lives..pastors, artists, teachers.  Some may not realize they were created for a purpose.  Some do.  Nonetheless, their purpose is still being carried out and their value is still great.

Being a caregiver was completely unexpected.  I took for granted the fact that Jerry and I would raise our children, retire, live an adventurous life together, and die together.  His early diagnosis began what I’d call a different kind of adventurous life.  Do I wish this had never happened?  Absolutely.  No one would wish this on anyone.  Am I angry about it?  Sometimes.  Do I get sad?  DUH!  The fact is, now, I am resolved to the fact that this is a part of the greater purpose that involves both Jerry and I.  His courageous battle to fight his decline to the end and my depending on God to carry the caregiver roll through to the very end.  It is an experience that has changed me forever.  It has changed Jerry forever.   Both for the better.

Babbette the Rabette - An Alzheimer Journey by Sue Scoggins

Babbette, an albino bunny, was the therapy bunny for Family Day  at Jerry’s place.  The appearance of Babbette was the final act of the magician/comedian that came to perform for the residents and their families.  Family Day is a day when all the families of residents and employees come for a day of picnicking and entertainment.

When I arrived, I could see families strolling around their loved ones, finding a table in the dining hall, rocking on the front porch and walking the halls.  It was like open house at the beginning a school year where the child proudly shows off their artwork.  Ivan, sang to his “In the Garden” art.  On this beautiful sunny October day,  Jerry was all dressed up handsomely in his pastel orange golf shirt.  I can’t really tell if he knows me or not.  Nonetheless, we greeted with our squishy bear hug and I chatted with those around us.  Jerry’s eyes are still beautiful, but have question marks in them.  I took his hand and led him down the hall to find a seat.  A DJ was playing oldies music and the staff was serving North Carolina Barbecue.  Truth be told, the whole affair is bitter sweet.  We all put our happy faces on, but I could see little teary eyes here and there when a particular song would bring a bit of nostalgia.  We’re all trying to make the best of a hard situation and love on our loved ones.

The entertainer was a huge success with his jokes.  It was a great relief for the families the be able to laugh and answer trivia questions about Frank Sinatra and Elvis Presley.  He gave tribute to history with the voice of FDR on Pearl Harbor Day and reminded the residents of their gift as the greatest generation of Americans; who survived the depression and two world wars.  His compassion and sincere performance was truly uplifting.  For the children in the crowd, animal balloons and magic acts hopefully showed that a nursing home/assisted living facility doesn’t have to be a scary place.

Sadly, all the excitement was a bit too much for Jerry.  Even when we placed Babbette in front of him to pet, he couldn’t see her.  We moved Babbette to the right, to left, up and down and he never saw her.  We placed his hand on her.  He never saw her.  He did, however,  have a slight resurge of energy when he saw his room mate’s family.  Their teasing him about dancing prompted him to smile and move his feet.  But after a few minutes I took him on back to his room and laid down next to him.  I think we connected at that point.  He seemed resolved in some sort of way and took a rest.

Families and friends together offer support that is desperately needed.  It was my first family day and hopefully I’ll attend many more.