Art Made It's Connection - An Alzheimer Journey by Sue Scoggins

Tuesday I volunteered to teach an art class to the residents in the Alzheimer unit.  Never having done this before, I didn’t know what to expect.  Jerry and many others were not able to participate but about 7 of them were able to sit and hold a brush or pencil.  I placed a piece of paper in front of each participant and had them pick out a pencil.  These were watercolor pencils.  None of them were able to tell me what their favorite color was.  I asked Barbara if she like roses, she said, “Yes.”  What colors are some of your favorite roses.  "Pink!”  I gave her a pink pencil. We began by raising our arms and shaking our hands as a way to spark a little energy exercise.  I  asked them to close their eyes and try to think of something they loved.....something that made them happy.  As I walked around to each one of them, they looked at me with blank stares (but smiling).  When I got to Ivan, he said with a chuckle, “I don’t know what to draw.”  Ivan still is able to speak and he still has a voice that could complete with the most accomplished baritone.  I said, “Ivan.  You love to sing.  What is your favorite song?”  He couldn’t answer, but the activity director told me it was “In The Garden”.   “Ivan”, I said.  “That was my daddy’s favorite song.  Let’s sing it.”  So, we began to sing, “I come to the garden alone, while the due is still on the roses.  And the voice I hear falling on my ear, the son of God discloses.....and He walks with me and He talks with me...and He tells me I am his own.........”   As we began to sing, Ivan put his pencil on the paper and began to make marks.  They were such tiny marks looking like hieroglyphics or Morris code.  

As we sang, I continued around the table.  Betty, without any prompting, drew a picture of a her boyfriend.  Lorette drew a picture of herself.  Both were happy paintings with smiling faces.  When I got to Roy,he had drawn a face with a farmer’s hat.  Kitty, a former artist, drew a complex figure filled with lines and squiggles.  She had not made an attempt to draw in years.

Feedback is kind of sketchy with Alzheimer folks.  Some don’t respond at all accept with maybe a glimmer in their eyes.  Others may smile or look puzzled.  Once the “artist” was rekindled in Kitty, she gave a slight smile.

As I was nearing the end of the circle, Ivan said, “You distracted me.  I don’t know where I was.”  So we began to sing In the Garden again.  He picked up where had left off.  When I came to his drawing and looked closely, I could see that Ivan had been writing the words to the song.  He had written the words!  The words were still alive!

We Have a New Roomie - An Alzheimer Journey by Sue Scoggins

It was Sunday and a beautiful fall day.  When I arrived at Jerry’s place, I could see him in the main room where most of the residents “rest” watching tv.  They were watching Andy Griffith.  I could see Jerry actually leaning forward and looking up, as if he was actually watching good ole Andy.  Some of the other residents expect their greeting hug when I walk in the room.  A squeeze makes their day.  Jerry didn’t exactly know who I was at first.  However, I took him by the hand and walked him down the hall to his room.  When I got there I noticed that there was a new bed, pictures on the wall, another lounge chair and a BIG tv.  He had a new roommate.

It was exciting.  It looked like his new roomie might be a good match.  Jerry and I walked on out to the front porch where I had noticed a group of folks sitting in rocking chairs.  What a beautiful family!  His new roomie, I’ll call him Roy, was sitting in a wheel chair next to his endearing daughter and her husband.  I could see the angst of this new transition by the red rimmed eyes.  But, we all stayed upbeat, talked about the country western band that comes once a month, and how Roy loves old movies.  I could see how Roy was trying to be brave......his face would begin to reveal his cry..... he wanted to go home. I’ve seen that face before...many times.  Yet, he knew he had to be brave for his family’s sake.  He was.  Jerry still is.

Jerry’s doggie, Montana, was waiting in the back of the car so we ventured over to give her a pat on the head.  The cool fall day made it possible for her to come for her doggie visit.  By this time, Jerry knew who we both were.  (I think.)  I put the leash around Jerry’s wrist and threaded it through her legs so she wouldn’t pull him and off we went to circle the parking lot.  As long as Jerry is able, we’ll  go for a “tour” around the area.  (This photo above was taken 4 years ago.)  Fresh air and outdoors is in short supply when you are in a locked memory care unit.  Not that they don’t do the their best to keep the resident’s active and get them out....still, it’s not the same as being able to get out whenever you want.  None of these alzheimer patients are able to do anything without assistance.  The residents up front in the assisted living section are able to sit out front whenever they want.  And they do!

Back at the unit, Roy was taking a nap, and the each family member was saying their goodbyes.   Sons, daughters, in-laws, and his granddaughter came out one by one.  All greeted Jerry with empathy and infectious smiles.  Jerry’s face  lit up with a smile as if he  belonged to them.   For them, it was a heavy hearted day but in their heavy hearted ness, they were able to be uplifting.   We’ll be in this together for a long time.  New friends.  A new roomie.  A gold nugget !

Holding Each Other Up - An Alzheimer Journey by Sue Scoggins

This picture is from our daughter’s dance marathon at UNC.  It was a fundraiser for UNC Children’s Hospital.  Jerry was holding her up off her feet after she was nearing 24 hours. Recently I listened to a broadcast on caregiving.  The guest speaker’s voice quivered as she spoke of her father and the honor she felt of caring for him who had cared for her.  One of my coping mechanisms, I suppose, has been to suck it up and take control of the situation.  But, when the  "business of caring for him” is put aside, I come face to face with the real motive of caring for Jerry.  In this society where beauty, youthfulness, and serial relationships are held in such high regard, it is important to me to honor him in a way that shows him he is still loved and valued. To hold him up to the very end of this marathon is a God given privilege and joy to my heart.

The "phone call”, is always in the back of my mind.  About 7:00 am on Monday, my phone rang.  I saw the caller ID.  It from Jerry’s home.  “Oh no, I thought.” Quickly, I picked it up.  Jerry had fallen when he stood up in the shower.  It was his first fall.  I’ve known that frequent falls are a part of this disease as the patient begins to lose balance in the late stages.  I’ve seen the results of falls by other patients.  These frail bodies bruise so easily.  The Med Tech assured me that he was fine but wanted me to know.  I rushed up to see for myself.  Thankfully, he only had a bruised leg and a bruise on his left rib and buttocks.  Interestingly enough, he doesn’t remember the fall at all.

Today, when I arrived in the afternoon.  He was being bathed by the hospice CNA.  He’s a squeaky clean little thing.  Peeking through the door, I could see his frail body sitting on the shower seat while she was gently scrubbing his back and talking to him.  I stayed out of sight so he would not try to get up and come to me.  I went over and sat on his bed across from all the pictures on the wall.  Most of his life was pretty much summed up in these photos.  Tall and stately in his  pin striped suit, indicating a successful business man, the hugs of all his children revealing his being a loving father, his mother, his best friend from kindergarten, and BEAR BRYANT. Lots of laughs! What a great life!   I thought....all of this life reduced to this....

When the hospice CNA brought Jerry out, she directed him over to me, said, “Jerry.  Who’s that over there?”  His eyes didn’t see me for a few minutes, but when they did......”Ohhhh, thank you....”   He came to me with opened arms.  His eyes lit up mine.  His smile made me smile.  It was worth more than gold!

Survival 1301 - An Alzheimer Journey by Susan Scoggins

One year ago this month, I bought a bike.  The reason this is important is that one of the keys to caregiver success is to exercise. Trust me, this is not to pump me up or give me “kudos”.  This is for you!  So many of the caregivers that I meet are so strong and resilient.   I’ve often wondered how they remain so strong and not so seemingly emotional as I am.  Honestly, I am a female.....an emotional one.....one who wears her emotions on her shoulder and who shares a lot with others.  No pretense here.  I am an open book.

Last July, my lower back gave out.  Jerry had been in his new home for about 8 months.  Each day was a struggle for me, but my game face remained on.  Unfortunately, my body was falling apart day by day.  When the back went out, I remained immobile and in excruciating pain for weeks.  I was faced with a decision.  Either crawl under a rock and die.....or pull myself together and get stronger.

Money is rather tight when memory care facilities are a part of your monthly bills.  So, I really was having a hard time with what to do.  I frequented our local bike shop which is only a 2 mile walk from my house.  The bikes were so exciting to look at.....my pipe dream was to be the female version of Lance Armstrong.  I stewed over it for about a week, when I got a call from my gallery.  Henrietta, my ostrich sold!  Yay!  It was as if she was saying, “Quit procrastinating!  Go buy that bike!”  The thrill of the sale prompted me to run right over and collect that money.  Shortly after that I skipped into the bike shop and paid cash for that bike.

That was the beginning of getting stronger.  The sense of  accomplishment by adding on more miles each week gave me a revived energy and I soon found myself looking  forward in a positive way.  My attitude in dealing with Jerry became stronger both physically and emotionally.  Not that there haven’t been set backs.  After all, it does rain now and then.  But I am here, one year later, to say that my outlook is different, my body is thirty pounds lighter and much healthier.  Tour de France, here I come!

Take it from me, we need this to survive and thrive.   Thirteen years and still counting with my Jerry dearest.  All the more reason to be strong.  It’s what our loved ones would have wanted.

Put the Happy Face On

See these faces?  Another part of caregiving is to suck it up and put the positive game  face on. One of these kids is delighted to be on the ride of his life!  He is completely clueless to the perils that lie ahead.  The other one is scared to death!

As caregivers, we are aware of the perils ahead.  We have a glimpse of the hopelessness, the sadness, the overwhelming since of desperation that we will be confronted with.  While we bare the brunt of the responsibilities of caring for our dearest of dearest....the Alzheimer patient is pretty much clueless of what lies ahead.

In the beginning stage of Jerry’s illness,he knew what was ahead and worried for me.  Yet, over a matter of time, he became unaware that anything was wrong.  His world became just fine.  (sort of.)  He had no idea of the emotions and responsibilities that I was shouldering.  His world was clueless and thus, just fine.

However, dear friends, as a caregiver it is important to put the game face on...no matter how afraid we really are on the inside.

Yesterday, I went to visit Jerry.  We had a precious time together in our church service.  The songs were touching my heart so deeply as I watched Jerry move his lips.  If I had let loose....I would have balled like a baby and melted in a puddle on the floor.  It would have taken several mops to clean up the mess.  But, I knew I had to put my game face on.  Actually, my game face was one of joy.  I truly experienced joy in the midst of the circumstances.  Once the service was over, I walked Jerry out.  Then, cluless that I was even there, he wandered on back to the unit with the rest of the “sheep”.  My lips began to quiver.  I hadn’t had enough time with him...sniff.

The game face HAD to go on.  If he had seen me...it would have concerned him in a confusing sort of way.  The game face had to go on...and the smiles with a wave had to occur.

It’s just what we have to to.

Something Funny-Laughter, the best medicine.

Part of the coping skills of a caregiver is to maintain a sense of humor.  Seriously, it’s pretty hard to find humor in drool and pureed foods.  Thank heavens the journey is slow...it gives a bit of time to adjust.

The other day we stopped by to see Jerry.  As we walked into the memory care unit, the CNA’s said, “Hey!  Jerry’s not here.  He’s gone to lunch.”  I was thrilled to know that he was included in the day’s outing.  The activity directors had taken the entire memory care unit to Arby’s for lunch.  I trucked on over to that little fast food place and parked my car.  I could see the bus parked out front.  As soon as I walked in, Jerry caught a glimpse of me.  He began to move toward me.  I happily greeted everyone and squeezed in next to him before he disrupted the entire group.

Here’s the funny part.  Now, here I am sitting amongst 10-12 memory impared folks.  Very few of them could speak.  Fewer than that could even feed themselves.  Yet, here we were in a fast food joint chowing down on an Arby’s roast beef sandwich.  The employees were more than accommodating.  So, as Melanie, the activity director,  and I were chatting amongst the “silenced”, Melanie stopped in mid-sentence forgetting what she was going to say.  She kept trying to recall......when, suddenly, Betty (one of the Alzheimer resident’s) said, “THINK!”

It was such a comic relief!  See....they do hear what we say.  Never forget that!

The Diagnosis. Now What? - An Alzheimer Journey by Susan Scoggins

In the past two weeks, I have run across four new families who are facing the new diagnosis of dementia or Alzheimer disease.  Most have been noticing symptoms for a while, but the symptoms finally have gotten bad enough to seek a phyisician’s opinion.  The Diagnosis.  Now what?

Some people wonder what’s the point of getting a diagnosis?  There’s not a cure anyway.  But, having a diagnosis atleast let’s you know what you are dealing with as a new caregiver.  Also, the patient usually is aware that something is happening.  Knowing the diagnosis is the beginning of getting the right tools to cope.

When we first heard the diagnosis we were in shock.  There were no words said.  Just silence.  Soon, the overwhelming emotions began swirl in unpredictable patterns; intertwining  panic, fear, anger, sadness and a sense of helplessness.  At the age of 51, Jerry was declared 100% disabled in a matter of weeks. He was put on short term, then long term disability and life as we had known it...ended.  Step by step we began to pick up the pieces and build a new and different life.

I vowed to be with Jerry until the end. Yet, a fear  of the future kept entering my thoughts....”what if I can’t do this?”  “this could be for twenty years.” “he might be in a nursing home.”  I had to discipline myself not to worry about things that may never happen.  We lived to the fullest and took each day one at a time.  Carpe Diem!

I can think of two things that needed to happen right away.  Simplifying and Securing.   Simplify the surrounding environment.  Secure the finances.  Personally, I like to tackle things head on. Knowing the impending cost of this disease prompted me to sell our family home and become debt free.  We moved into an adorable little cottage type house that was perfect for the two of us.  An elder care attorney set up a healthcare power of attorney so I could handle Jerry’s affairs.  Finances, insurance policies, properties and wills needed to be squared away, so that I could focus my attention on caring for him.

Simplifying.  The downsizing was the first thing we simplified.  Smaller house.  Less upkeep.  No mortgage.   We purged everything we didn’t need anymore.  Material things, old clothes, and filed paperwork from the last century!   The only things that we kept were functional and personal treasures.  Ah....it felt so good.  Next was simplifying expectations.  We still loved to go out.  Now, however, we went to restaurants when they weren’t crowded.  We went to movies earlier.  We walked the mall and stopped for coffee early in the morning.  We traveled extensively.  We still went to church, however, the crowds were too hectic, so we entered in the back entrance and slipped in the front of the sanctuary.  Anything you can do to keep active, yet simplify the chaos will enable you to enjoy each other longer.

Through Sickness and In Health - An Alzheimer Journey by Susan Scoggins

After checking in at the Syracuse kiosk, I turned and briskly headed to the escalator to go up to the gate.  In an instant, I visualized a tall gentleman in a navy pinstriped suit, standing at the top waiting for me.  His arms were stretched out.  Then, the vision dissipated when the realization came that I was traveling alone.   We each spent a lot of time in airports in our earlier years.  Jerry was a corporate traveller and I worked for the airlines.

My niece had gotten married over the weekend in the beautiful  Adirondack mountains of New York.  We had attended the weddings of all our nieces and this was the first one I had attended alone.  Truth be told, it was exciting to participate in all the “love” energy that was filling the air.  The fields were filled with wild Black Eyed Susans and Cone flowers; and the lilly filled ponds were straight out of Monet’s garden.  The wedding was put on completely by family and friends who had seen these two love birds through some challenging times in their lives.  So, the coming together of all these people from different parts of the country on behalf of this couple was one of the warmest and fuzziest feelings ever to be had.

The hard part for me was when I heard the vow......”through sickness and health, ’til death do us part.”  My cheery disposition fell into a puddle of sentimentality.  I toasted their coming together and encouraged them to remember the elation of this moment and to be grateful for the difficult times, because it is those times that will bring depth, beauty and richness to their lives.

On my way home, I couldn’t wait to get back to see Jerry.  Knowing he may not know me, I still knew he would be exited to see me.  Sure enough, when I walked in, the group was in the activity room watching a movie on traveling though Europe.  I slipped into the back of the room and it was as if Jerry intuitively knew I was there.  He turned his head, his eyes lit up, and he immediately rose to his feet.  It brought a smile to my spirit.  I nodded to the activity director that I was taking him and we headed out the door to walk Montana, our dog, who was waiting in the car.

I didn’t stay long today. When I brought him back inside, he wandered into the other room, completely unaware that I as still there.  Our time was short but sweet.  Jedde, his nurse, told me she was noticing a continuing decline.  His body is becoming more fragile.  Earlier in the week, I helped feed Jerry, who still eats solid food.  But as I watched the aides feeding the other residents their pureed food, I said, in a sort of teasing manor,  “No pureed food for Jerry, ya hear.”  I told Jedde I never knew what to expect when I came to visit.  I always imagine that Jerry will be upright and coming towards me.  But the reality is that he will one day be in a wheel chair in a slumbering position.  I shutter at the thought and pray that God takes him home before it gets that bad.

In the meantime, I still savor each visit and appreciate what this journey has brought into our lives.  We are truly blessed.

A Heart to Heart

I met with a new acquaintance this afternoon.  His daughter and my  oldest daughter are dear friends.  About a year and a half ago, his wife was diagnosed frontal temporal lobe dementia.  That was Jerry's original diagnosis.

I've only been been with Robbie and his wife, Annie , a couple of times.  They've been together since high school.  Childhood sweethearts.  She, now is faced with this disease, but I'm not sure she realizes what is happening.  Robbie, on the other hand, is trying to be incredibly brave, but I see the pain and dispair  in his eyes.  It makes me want to ball my eyes out!   I see that despair that comes with the reality of  losing the love of your life that you've had for over 40 years and not being able to do a thing to stop it.  While he puts on a polite smile and asks me questions about Jerry, I can tell he is only grasping to be able to cope.

As we sat on the deck watching all the little grand boys playing in the sound, Annie would comment "They are so precious."  That seemed to maintain her interest.  Then she'd say, "Robbie?", indicating her dependance on him.

For Robbie and I, there is a sense of "this is not really happening", yet a slight comfort in knowing we are not alone.  For so long, I still gravitated to "this is not really happening."  I think it's what kept me going for so long.  It's a beautiful thing when you find friends who can identify with the situation and accept the changes  along with you.  It helps in coping with the loss.

It's been so long now, and I think I've adjusted to this next phase.  Each shift (or decline) requires another adjustment..another acceptance.  I truly love being with Jerry, but I am now able to leave, knowing he is secure in his own world.  There's something comforting about that.  For so long, I pined for him  He pined for me.  But now, we are at home, separately.  Even today, when I went to visit, he was so happy to see me.  We walked down to his room together, but when I turned around he had disappeared from my site.  He had walked away, down the hall, into another resident's room.  He was completely oblivious to the fact that I was there.  One minute I ignited a smile, the next minute he was gone.

That seems to be the way it is in Alzheimer world.  But, once accepted, I suppose it is good.  Good to not being stuck in the moment of loss, but to be moving on with a heart full of treasures to cherish.

Hospice - An Alzheimer Journey by Susan Scoggins

Here’s Jerry about 9 months before he entered his facility.  Pretty handsome, huh.  He cleans up good!

Yesterday I received a phone call from our hospice social worker.  She had just been to see Jerry and wanted to assure me that he was being well taken care of.  She arrived after lunch and wondered why the lights had been turned down.  On most days, after lunch, the residents are wheeled into the activity room for rest time.  The TV and lights are turned down low and most of them nod off while sitting in the circle, one next to the other.   She told me Jerry was taking full advantage of it and was sleeping peacefully.

The first time I saw Jerry like that it really upset me.  Seeing a once vibrant man sleeping upright in a chair, surrounded by other sleeping people just looked so pitiful.  (Course, I don’t know why that would be any different from the good old days when he slept on the sofa “studying” the TV.)  I’ve gotten use to it though, and actually get a peaceful easy feeling when I see it now.  Sort of like seeing a sleeping baby.

I asked the social worker about his weight.  She hadn’t checked his weight this visit, but recalled from the nurse, that it was still going down.  I think, at last weigh-in, he was around 140lbs.  Pretty thin for a man of 6’4”.  Jeddy, his aide, had told me that he was eating well but that it was just passing right through him.  The social worker told me that this was called “failure to thrive”.  It’s when, no matter how much the patient eats, the body does not process any nutriments anymore.   They just continue to lose weight.

There is a misconception that hospice services are only for that last six month of life.  Actually, there have been patients under hospice care for years.  What keeps Jerry qualifying for services is his “failure to thrive.”  His condition continues to deteriorate, which makes hospice available for the long term.  I have been so pleased with the hospice workers.  Unfortunately, I have not met them all, but I have met the social worker, nurse, nurse’s aide and chaplain.  They visit every two weeks.  It’s good to have an extra set of eyes on Jerry’s care.  Each time they visit, I get a call and an update.

Just wanted to give you hospice update.  I’m going to see Jerry tomorrow.  For sure, we’ll visit the FroYo place for a cup of frozen yogurt and not worry one bit about the calories.

So Much to Tell

It’s been while since I’ve posted.  A couple of weeks have passed by and each time I go to see Jerry, I come back with stories to tell.

In Alzheimer world, you never can tell when the person is going to be “present” or “far away”.  I try not to have any expectations when I go to visit.  Of course, I’m hoping to be able to connect, but even if I don’t, it still works out ok.

Last week, our baby girl, Katie, came to visit.  She brought her two adorable boys, Charlie and Jack.  I know Katie was hoping to be able to connect with her dad.  I’m sure she was hoping for a glimpse..a look in the eye....a smile that said....”oh, you’re my baby Katie.”  Unfortunately, that did not happen.  Jerry was so “far away.”  However, even though he was far away, we still had a good visit.

We were able to go out to our little park in Riverbend under the shade trees.  The boys were able to give hugs and play.  We were able to walk.  While that may not sound like a lot..it IS a lot in Alzheimer world.  Even though little children may not seem to know what is happening...you can see by this image, that Charlie has a tender heart of concern and Jerry was able to feel the hug of a child.  What a precious moment!

Today, when we went to visit, the food carts were outside the unit.  They had just finished lunch.  One of my favorite aides and I were chatting outside the door, when someone opened it.  Jerry had been pacing and caught a glimpse of me.  He came running.  (Which is actually a slow trot.)  The aide didn’t see him and was letting the door close behind her.  He started crying.  Others saw it and said, “Wait.  Let him out.”  We were together again.

We didn’t stay out long today.  It was way too hot, so we went to the local mall.  This mall is a slow, small mall, with very few stores and wide, wide, carpeted hallways.  We walked from one end to the other.  I could see his eyes wide.  Can you imagine going from a protective unexposed environment to one that is filled with STUFF!  It wasn’t long before he looked like a deer in headlights.  HOWEVER, this is so cute.  I bought a belt and after I purchased it, I handed the bag to Jerry to hold.  I kissed him and said, “Thank you, Jerry.  You just bought me belt.”  He seem so pleased and smiled.

Once our walk in the mall was completed, we went back.  It was time.  That little journey, definitely sent him into a daze.  It was good while it lasted though and I am so thankful we had that time.  He easily transitioned right back into his “home” as one of the aides walked him down the hall.  Crazy as it seems, this is a rich and rewarding journey.

Coolest of Beans!

When we entered the doors of Jerry’s place today, I could hear the voices singing.  Peeking through the activity room window,  I  saw a room full.  Many times, due to his condition, Jerry is not able to attend the worship fest.  But there he was, sitting in the middle of the row of elderly women.  (Since he’s so young, he’s everyone’s son.)   He wasn’t exactly singing, but he was moving his lips a little.  The two women on either side were though. I  snuck in the back of the room.  “Victory in Jesus, my savior forever”...was being belted out.  The room was packed.  Today was Monday.  Church was at 1:30.

This home is not  specified as a  “Christian” place.  But, the local Baptist church comes once a week.  Every Monday.  The songs were perfect.  Upbeat, lively, and true to the heart.

After church, Jerry and I went to the living room and just sat. Jerry was pumped up a bit.  We even went out for a bit of frozen yogart.  It was another good day.

Staying Positive

Hi!  This may be inappropriate, but it’s makes me laugh. A caregiver of a chronically ill loved one, especially long term, has to find ways to stay positive.  I don't care how far advanced Jerry is, our spiritual connection is still there.  No matter how wonderful and supportive my friends are, there is no one I'd rather be with.

Staying positive is a MUST.  So, how does a caregiver stay positive when the stare is blank and there is no response?

For me, I'm always reminded of the verse in the Bible, Philippians 5:8: "Whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, let your mind dwell on these things."

Focus.  It's a discipline of which I am pretty lousy.  Emotions seriously "ROCK MY WORLD".  My closest friends have seen me fall apart.  Believe me, it's not pretty!  Don't be fooled by my mask.

The twelve/thirteen years (lost count) of caring for Jerry has had  many ups and downs.  My emotions have "yinged and yanged".  In order to stay stable, I've had to stay focused on positive things.  Of course, the pinnacle of  pure and positive is Jesus.  He is the only "pure" that I know.  That's where I begin.  By focusing on Him, I can feel secure and realize that this journey is not by accident.  There is a greater mission in it.

Knowing this empowers me to rise up above the darkness and see the light of his blessings.  Envisioning, Christ's Holy Spirit, walking down that hall before me, gives me strength.  I can walk  straight and upright.  I can smile and give the aides hugs.  I can hold Jerry's hand and laugh with everyone in the unit.  That spirit makes everyone brighten up and break into smiles, even those with eyes glazed.

I'm going to see Jerry today.  I'll give you an update when I get back.  In the meantime, try to take in this beautiful day.

We Had Him For a Month - An Alzheimer Journey by Sue Scoggins

This picture was taken in 2009.  What a handsome guy!

A lot  has happened since the last post.  Two months ago, Jerry seemed to be on a serious downturn and I wasn’t sure if I was ready for it.

Last month,  however, Jerry came back.  At least a little.  He had taken two steps down and one step back.  It was a good month, in that, all of our children were able to have a one-on-one visit with him where he knew who they were for a few minutes.  The girls were able to bring their babies to the park and Jerry was able to sit next to them.  They even threw the football.  The time was sweet, sweet.

When Mark  came , the first visit was pretty difficult and very emotional.  Both Mark and Jerry cried.  In fact, SOBBED!  I try to imagine myself as a child of an alzheimer parent.  Especially this young.   I can’t.  The emotional energy that was released was nearly enough to make all those watching leave the room but we managed to muddle through.  It’s not unusual to want to avoid painful events so I’m sure Mark was reluctant to go a second time.  But, with a deep breath of courage, we went again a few days later.

In order to stay out of the heat we chose not to leave the home.  The living room was cool and filled with books.  It’s a nice place to spend intimate time together.  As Jerry and I looked through a large book on lighthouses from all over the world, he seemed to be interested.  I reminded him of all the countries we’ve traveled to and when I came to the page on Ireland, he said, “ARELAND.” Then, out of the blue, holding hands, he said, “I worry about her.”  I looked at him and asked, “Who’s her?”  and with a squeeze, he raised my hand and patted it.  It was me!  I think, for a second or two, his protective spirit revealed a concern for me.  What a moment to treasure.

A few minutes later, Mark came in and decided to find some old country music on his cell phone.  Jerry and I began to dance.  This must have gone on for 10 minutes, when the song, “I’ll Fly Away” came on.  Jerry began to sing!  He actually sang!  “Some glad morning when this life is over I'll fly away .  When I die Hallelujah, by and by I'll fly away.”  He actually sang most of those words!  What a gift!

Today it was evident, however, that Jerry has shifted back down again.  Although he  jumped up to see me immediately and wrapped his arms around me, his eyes were completely glazed over and staring across the room.  No amount of coaxing could get him to engage his eyes with mine. He has lost more weight.  Maybe 144 lbs now.  I walked him to his room, which is now occupied only by him. George, his roommate, passed away two weeks ago.  I took Jerry over to our pictures and pointed out each of our children. Named them one by one.  There was no reaction.   I showed him a picture of himself but I’m not sure he even recognized himself.

Jette, his nurse, told me a few weeks ago, he looked in the mirror, nodded,  and said,” good lookin’ guy.”  We smiled.  He still is.

There’s Still More to be Done - an Alzheimer Journey

For quite some time, I’ve asked God why?  Why is Jerry going through this?  Why is it taking so long?  Why the suffering? I learned quite some time ago that the question “Why?” is something that cannot be answered.  My belief is that when this life is over, we’ll understand.  For now, we’ll never understand the full picture of what God has in store.  For me, I can only wait and abide with Him.  Walk with Him day by day, moment by moment.

It  has now come to the point that we can see that Jerry’s dying is very real.  Up until now, we’ve been able to continue and live the life that God has so richly blessed us with.  But, now has come the time where the rubber meets the road, so to speak.  It’s a lot harder than I thought, but God sustains me.  Pretty much Jerry is not aware of his condition.  He has moments of delight for which I am thankful.  He has security for which I am thankful.  He knows he is loved...oh, so loved.

Still, there is a little fight left in him.  Even yesterday, he clinched his fist loosely and mumbled.  I knew what he was saying...."I’m trying to hold on.”  I held his hand and actually tried to communicate about his leaving.  I asked, “Why?”  He began to cry. I asked, “Are you afraid?”  He said, “No.”   I held firmly and rubbed his arms, “Don’t you know that Jesus has prepared a place for you?”  He heard me and said, “Yes.”  I said, “He’s prepared a place for me too. There will come a time when we’ll have to let go.”  Then, we both cried.  He was aware in those moments.

This morning, however, I had this epiphany.  Even though Jerry’s death is near, none of his know the day or hour.  It could be a day.  It could be a year.  Alzheimer deaths are completely unpredictable.  I realized that, no, there are still things that have to take place before Jerry goes.  God is not finished and there are grand things that must take place first.  Grand spiritual things.  It gave me a completely new perspective.  I saw a much bigger picture...much bigger than just us.

So, maybe that is “why”.  The answer is coming and it will be  far greater than I could have imagined.

WAKE UP, PEOPLE! STOP BEING SO GRUMPY!

Look at these happy moments. [gallery]

My doggie was begging to go on a bike ride this evening.  She is so patient and “neglected” that I thought I’d better take her out.  I hooked her up to her leash, jumped on my orange beach bike and began to ride.

No matter what I do, the “Jerry situation” is always in the back of my mind.  Everything I see seems to be  relative to this situation.

So many of us, don’t know what we’ve got ’til it’s gone.  (Hmm.  I think that’s a song.)  When I was in Ocrakoke a few weeks ago, I couldn’t help but notice how so many couples sat speechless with a bored look on their faces.  Several times, I would see how the wife would look at her hubby with a longing look on her face while the man sat with a deadpanned look on his face.  I WANTED TO SLAP THEM!  AND SAY “DON’T YOU GET IT? YOU COULD LOSE EACH OTHER TOMORROW!”  I even noticed how a woman was smiling and singing with the music and the man looked totally annoyed.  What’s up with that?

As we finished our ride , I saw a couple standing on their driveway.  He had dyed red hair and the grouchiest look on his face.  Doesn’t he know that a smiling countenance is much more attractive than dyed red hair?  The wife  only smiled after I smiled at her.  Poor people.  You’re on vacation!

PEOPLE!  Don’t you understand that life is precious.  It could be gone tomorrow!  Seriously!  Tomorrow you could be wiped out!

If there is anything I’ve learned from this Alzheimer journey, it is that life is precious and should be lived to the fullest.  Each day is another day to breath.  Each day is another gift and there is no room for lack of gratitude.  Each day is one more chance to say “I love you.”  Surely, there is something to be thankful for.  No matter how difficult it is!  MAKE EACH DAY COUNT!

Grrrrrrrrr!

Sorry.  Where is my grace?

Our Thursday Visit-An Alzheimer Journey

I arrived around noon and the staff was walking several of the men in the facility to the activity room.  The activity directors were grilling hamburgers and hotdogs for the men in the unit.  It was their Father’s Day lunch.  NO WOMEN ALLOWED!  The minute I walked through the double doors I saw this long lanky man’s silhouette in the hallway.  They turned him around and pointed.  He came running, eyes gazed past me, but hugging me tight.  He mouthed, “How’d you do that?”  I had to squeeze him extra tight and hold his face to mine so he could see my eyes. We sat Jerry down with a couple of the other male residents and I began helping serve.  It seems to work better to actually participate in the activities, verses observe.  Once finished serving, Sherry (the assistant activity directlor), and I sat down.  She began to feed one of the residents, I held the conversation and made sure the other spoons were making it to the mouth with food actually on them.  Jerry can still hold his burger once I clamp his hands on it.  George, Jerry’s roommate, has to have his food pureed.  The reason being that an Alzheimer patient, in the late stages, looses the ability to chew and swallow.  It was still a positive experience and one that I am now use to.

Once our luncheon was over, Jerry was anxious to “go somewhere”.  I took him back to his room to do “the do” before we left.  Jetti, our lead CNA came with me to get Jerry changed and spiffed up to go out.  I watched as Jetti took care of Jerry.  She helped him brush his teeth and gently guided the cup  to his mouth, saying, “It’s a terrible, terrible disease.”   He depended on her and looked to her for his every move.  We talked about Jerry’s decline.  And George’s too.  She said, “I’m afraid, I’m going to lose several of them at the same time.”  They seem to all be declining together.

In a few minutes, I took Jerry to the car.  I could tell he was so excited because he had a little perk in his shuffle.  His eyes were smiling as we walked arm in arm down the hall. On the way out, he saw some of the other employees.  He had to break away from me to give them a hug.  They love that.  He does too.

We didn’t stay out long.  Just long enough to feel a short escape and while we were out, my oldest daughter called.  The minute Jerry heard her voice on the speaker, he began to cry.  It was only a split second, though, until his attention was elsewhere.  The most precious part was when little 4 year old McCauley spoke.  They had a special bond and use to eat speghetti together. He asked to speak with Papa J.  I encouraged him to continue to talk and that Papa J was in the car next to me.  Little McCauley wanted to invite Papa J to come and throw the football.    It was so cute and I actually think Jerry heard the word “football”.  There is still a tiny connection.  I love the innocence and the unconditional love that children bring.

That’s it for today.  It was a good day.

Is There a Statistician in the House? - An Alzheimer Journey

My son moved to California probably about ten years ago, not knowing a soul.  Through the years he's developed several friendships that have held true.  Recently when I went out there to visit him, he arranged a get together with a couple and their daughter at a local Newport restaurant.  We had a great time together and made an instant connection. Teri and I seemed to hit it off right away.   She and her husband mentioned they'd  be coming to the East coast, so I invited her to come out early to Emerald Isle. FInding out she'd fly into Raleigh, she said, "Hey, I have an old high school friend who lives there that I haven't seen in 14 years.  That would be great, I'll visit her too."  I said, "Come on!"

As it turns out, Teri brought Barb down to Emerald Isle with her.  Barb's young husband has recently been diagnosed with ALS and I can only imagine what is going through her mind as she contemplates the task before her.  How well I know her fears, her sadness, her questions, her doubts, her strength to stay positive.   She is 49.  I was 46.

Now, some may wonder why these three strangers have come together.  None of us really knew why, but we just followed our instincts.  It didn't take long before we realized that we were all believers in Christ.  We shared our testimonies, our life struggles, danced a bit, ate a lot, and laughed.  We wondered which would be worse… losing your body and not your mind…or losing your mind and not your body?  Both are unimaginable, but this is, and will be, our journey.  Our meeting was divinely orchestrated and we knew it.

One morning, I received an email from Jerry's previous nurse practitioner from Duke, Candace.  Jerry and I truly love her and "broke the rules" by becoming pretty attached to her.  She is a gift to the medical profession.  Anyway, I had not had contact with Candace in over a year.  That’s 365 days.  What were the chances that she would email me on the day that Barb was here?

The next day, while we were all sitting on the beach, I asked Barb who her doctors were and where they would be going through their journey with ALS.  She mentioned Duke.  I couldn't help but tell her how much I loved the Duke staff and how they were a "Godsend" to me.  Then, I mentioned Candace.  Barb, stopped me in the middle of my sentence and said, "Candace?"  It was like a bucket of blessings were poured over us.  Candace will be taking care of them.

Who could have predicted all that?  Who could have orchestrated that this beautiful young girl, just entering the journey of her lifetime, would come to my home?  She came to the  home of someone who has walked a similar journey for 13 years before her.   Who could have used a feisty young man, 3000 miles away in California, who would make a particular friend out of millions of people, Teri, unknowingly arrange a get acquainted dinner that would eventually help a young girl entering this journey and who’s doctor was the same as ours?  (I think that was a run-on sentence.)

Where’s the statistician?  I’m just sayin’.

“And My God will meet all your needs/according to his glorious riches in Christ Jesus.”  Philippians 4:19

Ocrakoke-That Vision, an Alzheimer Journey

Once my battery was fully charged, I felt the urge to go to the beach where I had that vision.  In the back of my car were canvases, a limited supply of paint and a couple of brushes.  Once I got out of town, there were no cars on the long stretch of road; only a few bikers.  There really weren’t any particular thoughts in my head, no agendas, no things I wanted to accomplish.  Didn’t really know why I was going.  Was I going to have some epiphany or something?  Probably not.

When I got to the end of the 14 mile road, there was no one there, accept a few cars waiting to board the ferry for Hatteras.  The sky was very solemn and a little bit gray and overcast.  The dunes were a little dull.  I changed to my old blue crocks and with canvas under my arm and a yellow bag of paint slung over my shoulder, I headed out over the dunes.  There was a path there.  The same path where Jerry would not walk two years ago.

That day, I kept telling him to come on and walk the beach with me.  He would grumble and move forward a little at a time.  That day was clear and cloudless and the sand was white with rows of washed up seaweed.  I just knew I could find some old relics that had washed up or some old driftwood.  Jerry didn’t want to cooperate.  It was so frustrating and I know my anger got the best of me.  I remember wanting to scream with frustration.  “Why?”  I’m so sorry, now, that I probably hurt his feelings?  I didn’t understand then, what I do now.  I remember, I just kept walking.  He would stand there at the edge of the dune, this time on the beach side of the dune.  He would walk only a few yards, but would not come with me.  I would look back and see him standing there, then I would continue to walk along the water’s edge looking down at the sand.

Today, I sat on that dune.  It looked the same.  I propped my canvas on my knees and began to paint that memory.  For some reason, as I was drawn into the painting, the melancholy feelings began to fade.  I realized that the repentance and repair of silly arguments were like building blocks on an unbreakable relationship.  And even though his existence is different now, our relationship is still unbreakable.  Not even Alzheimer’s disease can break it.

As I rode my bike into town, my spirit was all full.  For some reason, I realized that I was peddling fast and my hands were up off the handlebars.  I was balanced!

At Dajios, I went to the same patio for seating.  My same waiter was there.  I saw a bunch of women sitting in the corner, laughing and taking pictures, so I went over and asked if they’d like me to take their picture.  I snapped away for them, joining them in their laughter, then went back to sit down.  As soon as they saw me sit down, they yelled, “Are you alone?  Come join us!”  I kept saying “No.  That’s ok.  That’s ok.”  Then, I got brave.  The waiter raised his eyebrows...as if to say, “Go on.”  The hostess laughed and said...”They want you.”  So, I got a chair and pulled up to their table.  Five crazy women...and me...make SIX.  Turns out they were all “manless”.  Either divorced or widowed.  The rest is history!

Ocrakoke - Day Two, An Alzheimer Journey

I was drawn to a couple at breakfast this morning.  Sitting alone, I had seen them at the restaurant the night before, eating with friends.  Turns out we are staying at the same Bed and Breakfast.  As I filled my coffee cup, I noticed them praying together, leaning towards each other and holding hands.  Once they were finished, I asked if I could sit with them.  “Of course.” she said.  They had moved to North Carolina from New York and had been on this island hundreds of times.  I asked how they found North Carolina and they told me their beautiful testimony of how they felt God had moved them here. Then she asked, “What about you?”   I said, “Don’t make me cry, now.”  It was all I could do to hold back the tears as I told them how I had a husband in a nursing home and that the last time I was here, he was with me.  They were genuinely interested and  kept asking for more, so I told them all about us.  Then, she said it.  She said, “You need to live your life, but God wants you to be faithful.”  That as such reassurance for me. I found this little path through the brush that lead out to a beach.  The path was thick with trees.  Thousands of them.  I thought, “If only trees could talk.”  At times I could hardly see the sky, but their was an occasional  handmade sign with an arrow and “beach”.  I kept following that path until I came to an opening.  Once I was out there, I began seeing all sorts of potential paintings.  The beach was so clear and beautiful.  But after a few shots, my camera battery completely died.  For some reason I couldn’t get frustrated.  It was ok.  It was as if God was telling me to stop striving. To quite trying to figure things out.  Today will be a day to relax and let go.  To “Be still and know that I am God."